I know, I know, its been a long time since I've updated about my health. I usually try to do anything to NOT think about my health...things have just been crappy lately! The last surgery that I had (just about 2 years ago) was on my lower back. They went in at the L4/L5 level and snipped my 'tethered' spinal cord. In doing this, they damaged the nerves that go to my bladder and legs. I've had trouble with my bladder since the nerves were damaged. Tomorrow I will have surgery at the Lahey Clinic in Massachusetts. The problem I've had is that I can't fully empty my bladder; this causes it to stretch and high pressure that could back up into the kidneys (really bad). So, I'm having a tube put through my abdomen, into my bladder to help empty it fully. Sorry if this was "too much information", I just thought I'd share what's going on.
Dear family and friends,
As you know, I've been dealing with all the awful effects of something called a Chiari Malformation. It is a neurological condition that causes the bottom part of the brain, or the cerebellum, to descend out of the skull. That puts pressure on the brain and spinal cord, causing pain and neurological problems. I've had three major surgeries since 2005 and I'm significantly worse than I was before any surgeries. The reason for this is that the doctors don't know enough about this rare condition to treat it effectively. This is where we need your help. Conquer Chiari (www.conquerchiari.org), a non-profit organization is raising money for medical research. They are holding a walk on September 20, 2008 for that purpose. I will be walking, along with some family members and friends. I'm asking for your support. If you are interested in sponsoring my walk, you can go to their website and pledge online. If you have any questions about chiari malformations or about Conquer Chiari, please let me know. I will do my best to answer them. I greatly appreciate your time and generosity! Love, Heather
It should be good news that the myelogram came back normal, but I'm not feeling like its very good news. A normal test to me just means more unanswered questions. The other issue is that Dr.B told me that the myelogram is not the best test to find a Cerebral Spinal Fluid (CSF) leak so a negative result does not tell for certain that there is not a leak. So, I don't really know any more than I did before the test.
Today I will have a myelogram with CT-scan and X-rays. I'm quite anxious about this test. They will be injecting dye into my spinal canal to help get better pictures with the CT and X-rays. Normally this wouldn't be too bad. But, I always seem to be the exception...Lumbar punctures can be dangerous for people with chiari AND I always end up with a spinal leak when I have a lumbar puncture. The test itself will take about an hour. I'll have to stay in the hospital for a few hours after that, to be sure I don't have a major spinal fluid leak. After I get home, I'm going to have to lay flat for 48 hours while my body replenishes the spinal fluid that was lost during the test.
We haven't rented any movies in at least a year. Any recommendations would be great since I'm going to need something to watch so I won't go crazy being in bed for 2 days!
Wow! Its been almost 9 months since I last wrote a blog entry. I think I have two reasons for not writing, both quite warped, so I guess I better just get over it and write away. The first reason is that I don't want people to know how bad things really have been for me. The second is that I thought if I didn't write or think about the pain, that it would go away.
Unfortunately, my health has continued to decline since my last surgery (almost a year ago). I'm dealing with constant pain in my head, neck and back and intermittent pain in my legs. The constant pain in my head is in the back - where my hardware is. I also have a few different types of pain in my head, from a pressure pulse pain (a blog friend of mine wrote a great explanation of how this happens ) to a sharp pain in the back of my eyes. My lower back muscles are always in a spasm and I have a pinching type pain in the middle of my spine that happens when I move certain ways. My upper back and shoulders are very tight and I can't seem to find anything that provides relief. I also have had some new issues such as urinary problems and instability in my pelvis/hips and shoulders.
My pain management doctor seems to think that I'll have to live on pain medicine. He has increased my dose just about every month. I'm seeing a bit of improvement with the increase, but not nearly what I'd like to see. He had some great ideas that unfortunately didn't help much. He tried something called dry needle trigger point therapy. Its a procedure that uses tiny needles to 'reprogram' the electrical signals in the muscles. I had about 6 treatments and didn't see any help, so we discontinued that. He also suggested that I get evaluated by Dr.Francomono for clarification of my possible EDS diagnosis. Dr.Francomono is a genetic specialist working with the TCI doctors to find out if there is a connection between chiari, tethered cord, and EDS. I'll write more later about that appointment, but long story short, I have Classical EDS (Ehler Danlos Syndrome).
I don't know if I should really call myself 'sick' but I'm not sure what else to call it. I'm not sick with something like the flu, I'm just sick from the Chiari Malformation and everything that goes with it. At this point, I wish I could go back to when I just had head pain. That was before three surgeries! It seems like I've had increased and/or new pain and symptoms after each surgery. I keep thinking that before any of my surgeries, I just had head pain and fatigue. I was able to go work full time and go to school full time in the evenings. Now, I can't even work a part time job. I have trouble even getting together with friends for fun times. I now have head, neck, back, and leg pain that are all constant. The leg pain is new since my last surgery. Its a nerve pain that radiates down my legs. It gets worse as the day goes on and the evenings are sometimes unbearable. I've also had problems with nausea, fatigue, and insomnia; all of which are great fun, let me tell you!
My therapist says that I need to start telling people how I really feel. Yes, I'm seeing a therapist. She is helping me to accept and find ways to deal with the fact that I may have this pain the rest of my life. I do really connect well with her, so hopefully she will be able to help me. I don't usually tell people how bad things really are. I figure they don't really want to know, or I don't want them to worry about me.
So, there it is. I told how I'm really doing. Sorry if I sound like 'Debbie Downer' but this is what its like for me.
I met two wonderful people while I was at the hospital for my tethered cord surgery. They were also both there for the same surgery. We got to spend a few days together at the Variety House before we were ready to fly home. Here is a picture of the three of us with the Wizard himself, Dr.Bolognese. The day before we were to fly home, the four of us hobbled over to the hospital to thank our doctors and nurses and to check in on the other friends that we made in the hospital. Dr.B is such a busy man, we were lucky to find him, and for him to pause for a picture with us! THANKS, DR.BOLOGNESE!!
Left to Right: Heather, Dr.Bolognese, Sandy, Danny
Four weeks ago today (and for the 28+years before), I had a tethered spinal cord. My surgery to fix this problem was done on May 29, 2007 (Four weeks ago-tomorrow) at North Shore University Hospital on Long Island, in New York. It really doesn't seem like it was that long ago. The time has gone by really fast. Today is my first day home alone after having my Mother-In-Law here for two weeks. I'm not sure who misses her more, Baxter - Nate - or Me! Baxter misses his morning walks with 'Grammie Linda', Nate misses the cooking and dishes done by Mom, and I mostly miss her company. I'll also have to make sure I don't over-do things on my own. Linda could always tell when I was not feeling well and she would tell me to lie down and she would take over whatever it was that I was working on...usually packing boxes for our move. We are hopeful that we will be able to move before the winter, but it will all depend on the sale of our townhome. The market is very slow here, so I am not too hopeful, but we'll just have to wait and see.
So, how am I feeling after 4 weeks? Much better than 3 weeks ago, but I don't think much has changed in the last 2 weeks or so. I guess I'm at a plateau in my recovery. I'm okay as long as I don't over do things. I'm still resting often and actually sleeping quite a bit. Many people are asking if the headaches are gone. The answer, unfortunately, is NO, they are not gone. I'm trying to stay hopeful that this may change over time, but my doctors didn't really think this surgery would take care of the headaches. They said that the surgery for tethered cord had to be done before they would even start talking about what more can be done for the headaches. They also told me that I have to wait 3 months to see if its going to help...so, 1 month down, 2 more to go!
Well, I've slept in my own bed two nights now and I think it has made a huge difference in how I feel during the day. I'm glad to be home, but its hard to rest at home. Its especially hard because I've been feeling much better every day. I went for a walk this morning and I think that really tired me out so I'm going to take a nap before I attempt to shower and wash my hair. It takes a lot of energy to do things like that.
How am I feeling? Well, I still have the constant head pain that I had before the surgery. I don't have the post-op LPH anymore. I have surgical pain and stiffness from the middle of my thighs up to the bottom of my ribs. My hips still feel as if they are out of joint and it gets worse the more I'm up or the longer I lay in one position. I still can't roll over in bed so I wake up every time I need to switch sides. I have to actually sit up and turn to the other side. I hope this goes away soon!
Time to get that nap in. Thanks for checking in!
We are home now! No more LPH, just surgical pain and stiffness...to be expected! The flight was fine, but I'm exhausted and sore so its time for a nap. Thanks for checking in :)
Even though Nate did a great job updating everyone on my recovery, I thought it was time for me to add an entry. I've been out of the hospital for about 30 hours now. This is the first time I've felt like I could make the trip across the street to have internet access.
I'm still having the low pressure headaches if I'm up too long. Drinking plenty of fluids is helping though. Tonight I'm going to have to force myself to drink water through the night because this morning when I got up after sleeping for about 10 hours, I had the worst low pressure headache yet. I drank a liter of water and a large cup of coffee in the first hour that I was up and that helped. The rest of the day I've been able to be up a couple hours before I feel it start.
I thought I should explain what a 'low-pressure' headache (LPH)is since we have been using that term alot. Its the same headache I got after the two spinal taps that I've had in the past. For thoes, I had a blood patch to fix it. It happens when there is not enough spinal fluid in the system, or if there is a leak. Going into this surgery, we knew that it was a possibility that I could have this LPH because they have to open the dura and some spinal fluid drains when they do this. A LPH feels like my head is going to emplode. Laying flat helps to relieve the pain and drinking lots of fluids helps speed the process of regenerating spinal fluid.
Its amazing how many mundane tasks use the muscles in the lower back! I'm learning that the back muscles have to be worked in almost every motion. I'm thankful that I did core strengthning before the surgery, because I think it really helped me and will continue to help with my recovery. I still can't roll over in bed or put my shoes and socks on, but I've learned to adapt and ask Nate for help :)
Tomorrow we will stay at the Variety House and rest and drink lots of fluids. We will be flying home Tuesday morning, assuming I can keep the LPH at bay!
Thanks for all the comments, it really was great when Nate would come visit me with pages of printed comments.
The night of fluids helped, but she is still getting low pressure headaches. It takes 30-60 minutes for it to start and they take a while to get bad. The PA's said that all they would do if she stayed was give her more fluids. She's perfectly capable of doing that outside of the hospital so they discharged her today. We have three days until our flight. I think we have plenty of time to regenerate the rest of her spinal fluid.
Heather is moving around better today. She's having an easier time getting out of bed and walking around. The only problem is that after eight minutes or so she starts to get a low pressure headache. Then she lays down for a little while and it goes away. They are going to give her more fuilds and she's going to stay in the hospital another day.
Heather is still progressing well today. She's walking around more. The catheter is out and she is off the pain pump. They think she will be discharged on Friday. I checked flights and Tuesday morning is $60 per ticket cheaper than Monday, so we're going to wait until then to fly back to Minnesota. I still need to figure out how we're going to get to JFK. Can anyone recommend a car or limo service?
Heather was in her chair when I got to the hospital today. She said she had already walked a little ways down the hall and back. After some breakfast she did a lap around half of the floor. Last night we did the same lap but stopped to meet Danny, another chiari patient. She was up a little too long and got dizzy and light headed before making it back to bed.
It took us a while to get her sitting up. She didn't have any problems with a low pressure headache as she was sitting up. It was more that we were distracted with her roommate and watching TV while we were doing it. As Heather got to 60 degrees erect she started getting really uncomfortable. We didn't know what to do to make her more comfortable then the physical therapist showed up.
We got her to sit at the edge of her bed, then stood up. She walked a short ways down the hall, then back to her room to sit down in the chair. I got a shot of her smiling in the chair, but the lighting isn't good so I put the picture of her walking on the front page.
I slept in to 8:30 today, a later start than I had planned. I got to Heather's room around 10:00 after stopping at the cashier to pay the Variety House rent. She was asleep when I got there, but she woke up when I tried to quietly open my backpack. I was going to sneak the stuffed dog that Chuck and Caleb gave her under her arm.
Heather said she had a rough night. Her hospital bed isn't as comfortable as she remembers from last time. Her ribs and hips are sore from how they had her positioned during the long surgery. She's rolling around a lot which is still hard for her to do. The pain doc said she's only pressing the pain button twice an hour when she could be hitting it 4-10 times.
The good news is that Heather started eating solid food this morning. That is, if you call oatmeal solid food. She drank two cups of apple juice, some scrambled egg, and a good amount of oatmeal. That's a good step up from ice chips yesterday. Perhaps this evening she'll be able to feed herself.
Heather's goal for the day is to sit in the chair beside her bed. She's scheduled to start sitting up around 1:00. I'll probably wait to do another report after that.
I saw Heather again at 7:30 tonight and she's still looking good. She's working through the pain of a low pressure headache, but we knew she would get one. She was having a hard time looking down to see me standing by her knees. I squatted down and rested my nose on the side rail so she should see me better. I said, "Killroy was here," and that started her giggling. Giggling is not a good thing to do when you have a low pressure headache. (correction: The giggling hurt her back and stomach muscles. They were really tight from the surgery.) I had to look away for a while and start telling her about the trouble with the calling card to get her out of a silly mood.
After she calmed down I read her all of the blog entries today. She loved to hear the comments you all wrote. Keep them coming! She's scheduled to move to a regular room at 8:45 tonight. Tomorrow at 1:00 in the afternoon they are going to start sitting her up. They will raise the head of her bed about one degree every one or two minutes until she's sitting up at 60 degrees.
Perhaps she'll be ready to make or take calls Wednesday evening.
After a quick trip back to the Variety House I went to visit Heather in the PACU. I was able to stay about fifteen minutes, ten minutes more than I was supposed to. She has good color in her face and was able to lift her leg so the nurse could put a pillow between them.
Heather told me the doctors were talking about breakfast when they started the anesthesia. They asked Heather what she wanted and would pump it through the I.V. She said she wanted to go full fat - pancakes with butter pecan syrup. She also told me the anesthesiologist told her she had great range of motion for having a fused neck. Heather was very worried about the intubation.
The nurse said I could come back at 7:30pm to see her again. She should be moved to the NSICU after 9pm tonight. Keep those comments coming. I'll try to print out the blog entries before I go see her at 7:30. I'd better go check when the library closes. That's where I intend to print them out.
I just got the news from Dr. Chen that Heather's surgery went just as planned. They found the spot that was tethered and cut it. It was under a lot of tension. They closed her up and were moving her to the PACU. I should be able to see her at 1:30pm. I didn't talk to Dr. B or Dr. Milhorat. They're running two operating rooms and moved on to their next surgery right away.
Time for me to get some lunch.
It's early Tuesday morning and I'm already sitting in the Surgical Waiting Room. We got to the hospital around 6:30 this morning and by 8:00 they came to take Heather to surgery. It turns out the hospital added free WiFi so I should be able to update everyone easily. Perhaps I can even get some work done. I also noticed a sign on the wall that they are building a new surgical waiting room, it couldn't be done soon enough.
Our weekend was great, we really needed the break. We drove up to Saratoga and stayed with Jer and Danielle. It was great to see them and Ian again. Danielle is ready to pop! She could deliever Campbell before we fly back to Minnesota. We also got to see Dug and Sharon and Chuck and Caleb. We played croquet and wiffle ball. I haven't swung a bat since I was in little league for one year in elementary school. I was surprised I could hit the ball at all. I think I was having a little too much fun hitting the ball because my right forearm is still sore.
On Saturday we started looking at houses in the areas around Saratoga. We didn't find anything we wanted to put an offer on, but we got a better idea of what was around and our realtor got to know our tastes better. I think it'll be a challenge to find a house remotely. We'll probably have to move into a rental after our townhouse sells then restart our house hunt in earnest.
Surgery number 3 is going to be May 29. I have been putting off blogging about it since I decided to have the surgery back in February. I think this is because the doctors aren't very confident that this surgery will take care of my primary complaint, the constant head pain. Its really hard to be an optimistic patient when the doctors aren't optimistic. But this is the only thing that Dr.B is offering for treatment for me right now. He said that the tethered cord has to be fixed before they look at trying to fix my neck/fusion or there will be further damage.
This surgery will be much different from the other two I've had. First the good news: They won't have to shave my hair :) and the recovery is supposed to be shorter than the others. This surgery will involve releasing the spinal cord (at the bottom) from the bone where it is attached. So, this surgery will be on my lower back instead of my neck and back of my head.
Check back for updates. Nate will try to keep the blog updated after the surgery so you all can follow my recovery. Don't forget to post a comment and say 'hello'. I love hearing from you all and its always nice when Nate comes to visit me in the hospital and reads the comments to me :)
Today I got my new CTO jacket. Its a brace that is supposed to simulate having the neck fused even further than mine already is. My surgeon thinks that I may need another fusion done down the road so he wants me to wear this brace for about 6-8 hours per day for a few months. Its really uncomfortable and after about an hour, it really hurts my jaw and teeth. This is because it is pushing up on my chin, putting strain on my jaw. Its most comfortable if I'm moving around, instead of sitting still, like at a desk. I have already been for a walk and Baxter did very well healing beside me. Only problem is that when he is healing well, I can't see him. I asked Nate "Is there really a dog attached to this leash that I'm holding?" Many of you have already asked for pictures, so here they are.
I've been reading that certain foods can increase pain. I decided to cut some of the common foods that can make pain worse. My plan is to try it for a couple months, then slowly add things one at a time to see if I notice it making my pain worse. The following foods are on my list to stay away from:
- Refined Sugar
- White flour
- White rice
I've followed this for 9 days now. I stopped coffee cold turkey and it went surprisingly well. I've switched to green tea for my morning pick-me-up. It has been pretty easy to stick to this for breakfast and lunch. Dinner is a bit harder. The hardest though, is staying away from sweets. I'm eating lots of fruit, so I'm getting plenty of 'natural sugar', but its not the same as a cupcake. I keep bringing up the cupcake, because I just baked some to take to a friend who just had a baby. Its really hard to sit here and not eat one!
I have not had enough time until now to sit down and write about my appointment with Dr.B on Thursday. He told me pretty much what I expected I would hear. He thinks I have tethered cord and that surgery would help. Tethered cord basically means that the bottom of my spinal cord is attached, when it should be free-flowing, and that it is putting downward tension on my entire spinal cord and the base of my brain, causing the chiari malformation. Dr.B says that the surgery and recovery are much easier than the two surgeries that I've already had. He also told me that they are booking surgeries out about 2 months, so I can think about it and schedule it for some time this spring or summer. I'll write more as I learn more about tethered cord. If anyone reading this has had the surgery, please feel free to share your story with me!
I'm glad that I don't have to travel through airports again for a while (just over a week). Mom and I spent 4 1/2 hours at JFK on Wednesday looking for my bag. They were supposed to call me when it arrived and they would arrange to deliver it to me, but they didn't call and we knew that with all the cancelled flights, it would take forever to get my bag if we waited for them. So, we went to JFK (had to go there to get the rental car anyway) and spent nearly 5 hours getting different stories about where my bag 'might' be. After all that, we DID find it! It was in the Delta office..not really sure why, because I flew NorthWest and Jet Blue...But the important part is we got it!
We had a flight to return to Maine on Friday afternoon. That morning, we heard that Jet Blue had cancelled many of their flights and delayed many more so we knew it was going to be a long day. We got to the airport with plenty of time to return the car and stand in the massive lines of people at the check in area. The airport was mobbed with people who had been bumped from the days before and wanted to get out. The story changed multiple times about when and from which gate our flight was going to leave. When the gate assignment changed, we had to take a shuttle to another terminal and it was then saying the flight was going to be on time so we rushed over and didn't grab lunch because we didn't think we had time. We got to the other area, it was at least 85 degrees in that area and mobbed with people. Our flight was then delayed, but we didn't know for how long, so we couldn't leave to go some where more comfortable and get lunch. Anyway after all that, we boarded 2 hours late and then sat on the plane for an hour before we took off. We got different stories about needing to refuel and wait for luggage. So, we got to Portland 3 hours late and we went to baggage claim to wait for my bag. We watched them unload the entire plane and not a single person claimed a bag. None of the luggage on our flight was for any of the passengers on our flight. So, we have no idea where my bag is, or when I will get it! Jet Blue announced today that they have cancelled all their flights in to Portland for this weekend, to try to catch up. But at least we are here and I don't have to fly again until the 28th! Time to relax for a while.
Today I flew from Minneapolis to Maine, through Detroit. Then I flew from Maine to JFK. Mom and I were going to fly to JFK Wednesday morning, but they were already canceling flights due to the snow storm on its way so we decided we better get to New York ahead of the storm so that I don't miss my appointments at TCI. So, we are here in NY. We'll be headed to the Variety House tomorrow and then my appointments are still scheduled for Thursday. My connection in Detroit was so tight that I had to run to catch the plane. My bag didn't make the connection, so its due to get to Portland tonight around 11pm. Then they will get it to me tomorrow somehow. It has been a long crazy day!
Abi is having her 4th chiari related surgery today, actually right now. Please say a prayer for her. Please keep her and her family in your thoughts and prayers over the next couple weeks as she recovers and they wait to see if the surgery helped shrink her syrinx.
http://www.caringbridge.org/mn/abi/ This is her Caring Bridge site. Please visit and post comments to let Abi's family know that you are praying for them. I'm sure they will appreciate it! Thank you!
I thought it was time for an update on my health...could be boring, so just skip this entry if you choose! I've had extreme pain in my head, neck and lower back for months now. I'm getting more numbness and tingling in my arms and legs too. At times, the pain is so bad that it makes me sick to my stomach. I will be going to see Dr.B at TCI in NY on February 15 for another surgical consult. I will be having a full workup before the appointment with MRIs of my entire spine and brain and multiple xrays. They are trying to figure out what is causing the continued pain. I sure hope they figure something out. I've had to quit my job because it was too demanding physically. I'm back to the point where I can't do much and really have to pace myself. I know that if I do too much, I'm going to pay for it either later that day, or the next day. So, I'm going to lay low for the next couple weeks until my appointment. I'll update later when I know more.
I baked some cut-out cookies in the shapes of flowers to send to a couple people. I sent the flowerpot to my grandmother. She is in the hospital because she fell and broke her pelvis. I sent the bear holding flowers to a little girl named Abi. She lives here in the TwinCities and has been struggling with chiari and chiari related complications. She will be having surgery Feb.7. I thought the bear and cookies might cheer her up.
I've once again learned that if I overdo it, my body will tell me! A few weeks ago I spent 2 days baking 6 batches of Whoopie Pies for a benefit bake sale and woke up the next day feeling like a truck had hit me. I spent a few days last week visiting with Katherine, a college friend of mine. We had a great time visiting, but I think I over did things. Sunday I felt like I'd been run over by the truck again. I was afraid I was coming down with the flu, but didn't have a fever and I've been getting better already. I'm still weak and very sore but plugging away and trying to rest as much as possible. Maybe I'll learn from this not to overdo...
I spoke with the nurse at TCI on Friday and got an email from Dr.B last night. They want to limit my activities so that I don't do anything that could aggravate my neck or head. I'm also going to have physical therapy 3 times per week instead of the once a week that I have been doing. I'm supposed to try to avoid lifting anything heavier than a gallon of milk. This is going to be tough since I'm working in day care and often times I have children that need to be held.
The waiting game continues. I'm supposed to spend the next couple months trying to get my muscle spasms under control before they can diagnose what else may be going on. The good news is that Dr.B said that when I have my follow-up appointment in a few months I can schedule it with him! I had told him how dissapointed I was with my last appointment there so I actually get to see him. It is not common for him to see returning patients because he is so busy with new patient consults and surgeries.
So, once again as I wait, my life will be on hold. I'm trying to be patient and positive, really, I am!
I've been communicating back and forth with Dr.B over the past three weeks by email. Can you believe that one of the best specialist (neurosurgeon for chiari) in the county has time to email patients? I should say 'makes time' since most of the emails I get from him are at about 11pm. Its amazing to me the dedication that he has to his patients!
Dr.B is concerned that I'm still having constant head pain. He thinks that at 7 months post-op from the fusion I should have improvement. He is thinking that there are two possibilities of what is still causing my pain. I won't go into the details until I know more about what his plan is.
Sorry in advance, but this is going to be a whiny post. I've had alot of pain this week and I'm getting really sick of it. I think people forget that I have pain every day, even on my 'good days'. I was getting headaches that felt like low pressure headaches off and on for a couple weeks. Dr.B recommended that I increase fluids, caffeine and sleep with my head elevated. I've tried that for 2 weeks and now the pain is worse. I just got an email from Dr.B and he said to stop the caffeine and fluids because he no longer thinks its a low pressure headache. He said we have to just wait and see what happens now. I hate the 'just wait and see' phase. As I said before, sorry about the whining!
Okay, Okay, sorry for the delay. I haven't written about the outcome of my doctors appointment in NY mostly because I'm not too happy with it. We drove 1400 miles to hear something that could have been said over the phone. Basically, the doctor thinks its too early to see results from the fusion surgery. She told me to start physical therapy and to take a muscle relaxer three times per day. She also recommended that I start a 'headache prevention' medication. Well, I've been there - done that. I'm not interested in loading up on medications that may or may not work and that take weeks, if not months, to start working. I'm just not going to do it again!
So, I've started PT, I've been going twice per week. I really enjoy the massage part of the PT. I'm trying to keep up with the exercises that my therapist has suggested. I'm also taking the flexeril three times a day. Its making me a bit sleepy durring the day, but I guess that's a side effect that I'll have to deal with for a while.
My doctor said that I can come back in 3 months if I'm not getting better. I think I'll be calling and emailing them by then, not traveling that far again unless they convince me its necessary!
We made it back into Lakeville on Sunday afternoon. We were pretty wiped out from three days in a row of driving. The 100 degree heat didn't help either. We had a great time visiting all of our friends and family. I'll bug Heather to post the results from the doctor's appointment. The short summary is that they want her to do some physical therapy because her neck muscles are too tight.
Today we're getting ready for our summer road trip. The main purpose of the trip is Heather's follow-up appointment at the Chiari Institute. As bonuses on the trip we're getting together with the Clarkson gang and our families in Maine. We leave bright and early Sunday morning. Baxter is travelling with us, but Rex is staying in Lakeville with our friend Derek. We should have some connectivity during the trip so we'll try to post some pictures. I hope gas prices don't make it to $4.00 before we get back.
I've been in touch with my nurse at TCI and she has been talking with Dr.B. They are now concerned that I may have tethered cord. I had an xray of my lower back and had it sent to Dr.B. He said something looks suspicious there and wants to see me earlier than my appointment in September. I have an appointment on July 20.
If I do have tethered cord, that could be what caused my chiari malformation and will need to be fixed with a surgery on my lower back. There is no test that tells for sure that someone has tethered cord. They go by symptoms and signs from MRIs or XRays of the lower back.
I'm not too keen on having another surgery, especially if the docs can't tell me for sure that I need it or that it will help. I still have a lot to learn and hopefully I get some good information at my appointment on the 20th.
Unfortunately, the headaches have returned. They are not nearly as intense as they were before surgery, but they are back. I've had a constant headache for 5 weeks now. Last week I called my nurse at the Chiari Institute. She talked with Dr.B and he was concerned that the headaches had returned. I had MRIs and Xrays last Friday. I'll mail the films to Dr.B tomorrow and should hear something from him in the next week or so.
Here is a picture of one of the Xrays. It clearly shows my new hardware! It was really strange when I saw it at the doctors' office on Friday. Its just so strange to think all that junk is in my head now!
I'm beginning to think that I have too many doctors and that they are all missing links to the 'Big Picture' of my health.
I have been seeing an endrocrinologist since 2000 when I was diagnosed with Graves Disease. Graves antibodies mess with the functions of the thyroid. I had an overactive thyroid making my metabolism speed up and my heart race. I wouldn't mind living with the faster metabolism (could stay skinny that way), but the racing heart was anoying and could be dangerous. In 2005 I had my thyroid treated with Radio Active Iodine, which basically kills off the thyroid cells. I'll be on replacement for the rest of my life. Not a major deal!
I have a neurologist and neurosurgeon treating my chiari malformation. They also treat the other conditions that go along with chiari.
Since my surgery in March, I've had some heart symptoms and blood pressure issues. So, I went to yet another doctor, a cardiologist. I had a slew of tests, all came back normal except that my heart rate jumps and my blood pressure drops...I could have told the doctor that! I do have a follow-up with the cardiologist on Thursday though so we'll see what she has to suggest.
So, will I ever learn if there is a connection between all my medical issues? Or more importantly, will the doctors ever find the 'cure all'? We'll see...
Today marks 5 weeks since my surgery. Here is a picture of my incision taken 1 week ago. I'm healing quite well. I still have very tight muscles in my neck and upper back, but that will work out in time. I usually have to lie down and rest my neck after being upright for a while. I can only sit at the computer for short time periods, which is going to delay my going back to work. I'm trying to pace myself and not overdo things so I get more sore. At the same time, I'm getting bored and need more stimulation. Thank Goodness for Sudoku, I think I'm addicted!
Today I got my staples and stitches taken out. There were 29 stitches and 27 staples in the 10.5 inch incision. The Doc says my incision looks good. I've been feeling a bit better every day. My range of motion is already better than I thought it would be. Every morning I wake up very sore and stiff, but after being up for an hour or so, I feel pretty good. By mid-afternoon I'm sore and uncomfortable again and that lasts through the evening. I've been sleeping well though, so I think that's helping. If you are interested in seeing a picture of my incision with the staples and stitches, click here.
We made it to the airport at about 1:00, just too late to catch the earlier flight out to Minneapolis. We left the variety house at 10:30 this morning. We took a bus, two trains, and the air train. Nate did a great job navigating the public transportation system and struggling with the bags. I just followed behind, not able to help out. Now we just have to sit and wait for our flight which departs around 5:45....that is if the weather in Minneapolis cooperates. I'm really glad to be this far on the trip and be so close to home. Home is going to feel so good when we get there.
I'm just about to be discharged from the hospital! We changed our flight and will be leaving tomorrow evening. This morning when I was doing laps, I ran into the PA and she asked how I was doing. I said, "good." She then asked if I wanted to get out of here. I asked, "for real?" I just had to take a bunch of potassium so I could pass a test after a low reading this morning. So, I've been taking potassium every hour and just heard that I passed the test!
So, we are off now to the Variety House. No internet access there so we'll check in when we get HOME!
It probably wasn't much more than an hour after our last entry that they moved Heather from the private room to a double room out of range of the wifi. I can get a connection over near the room, but there isn't anywhere to sit in the hallway so I probably shouldn't use it much. The last thing I want to do is to explain to a nurse why I'm standing in the hall holding a laptop.
Heather has been doing good today. We've done at least a half dozen laps around the floor. She's hoping to get a good night's sleep tonight so she can cruise the halls again tomorrow.
When Nate came to visit this morning, we tried out the computer to see if by chance we have a connection, and we do! So, I'm sitting here in bed typing for the first time.
I'm feeling so much better than yesterday. I've been up out of bed twice and I'm looking forward to a walk around the hall now that Nate is here to help me. I was actually able to eat all my oatmeal for breakfast this morning. I think that the more I can move around and the better I can eat today, I'll be feeling much better tomorrow.
Thursday was a slow day of delays. Heather got up for breakfast, but when she got back into bed she had some pains in her chest near her left shoulder. The doctors on the floor got worried and did an EKG. They said the EKG didn't look quite right so they did some blood work. The blood work came back normal, but they wanted to do it again in the evening.
After that little scare the doctors didn't want Heather to get up and walk. She really wants to and I think the delay is frustrating her. She continued her Stevie Wonder exercises and I massaged her neck and back.
The good news is that the evening blood work came back normal. Last night they moved her out of the NSICU to a regular room.
I got to talk to Dr. B and Denise (the PA) today. They said that the goal for today is to keep the swelling down and flush Heather's system out. Dr. B said it would be "Stevie Wonder" therapy. He then proceeded to show us what he meant by moving his head around wildly like Stevie Wonder would. I am charged with massaging Heather's neck and back with "any pathetic technique possible."
Here's a picture of Heather sitting up in a chair. That's Dr. B making fun of Heather's new hairdo. They held her hair up in an Ace bandage during surgery. Just after this picture was taken, Dr. B placed a plastic cup over her hair.
Heather was moved to the Neuroscience Intensive Care Unit last night around 6pm. They call this the "step down" unit from the PACU. She was delayed getting there because they had to do a blood patch Tuesday morning to fix the low pressure headache she had over the weekend. They couldn't do it during her surgery because she has to be awake when they do it.
I got to visit Heather last night from 8:30 to 9:30 in the NSICU. She was sitting up and eating. She was able to eat some sweet potato and chocolate pudding for dinner. We called a few people last night and Heather was able to talk to her Mom for a while.
We were surprised to find last night that cable TV isn't included in the hospital rooms. There was a video on the TV system telling us how to order it. It didn't list the price there but they said you could buy cards in the gift shop to give one day of cable TV. I thought I could read "a $7 value" on the card. $7/day for cable TV! What a rip off! NSUH -1.
Just passing on that Heather's surgery went well. She got a late start because they didn't have her charts ready for admissions, but they were closing up by 2 o'clock. I was able to see her around 5:30pm last night and she was awake and talking. She stayed the night in the PACU. She should be moved today to the surgical ICU.
I talked to Dr. Milhorat briefly. He said the surgery went well and that Heather will be 3/4 of an inch taller. I need to quiz him on the details and I'll pass those along as soon as I get them.
P.S. I'm currently sitting at a bus stop using an access point named "Brody." Thanks, Brody. :)
Because of all the spam comments that we have been recieving, Nate moderated the comments. You can still leave comments, but they will not show up instantly. We check it often and moderate the legit comments to make them public. So, keep thoes comments comming! We love to hear from you all and appreciate all the well wishes!
We got some good news today. We got a spot in the Variety house for next week. The Variety house is sort of like a Ronald MacDonald house, for adults. Its a small house across from the hospital that patients can stay at for free. It only has 4 rooms, so we didn't really expect to get a spot, but are very happy we did! We'll go there on Sunday evening and stay until we fly home. Well, Nate will stay there. I'll be in the hospital most of the time after Monday :(
We broke our record of amount of time in the hospital today. I was there for over 7 hours and walked out almost as bad as when I walked in. When I first got there, they were going to give me a liter of Mt.Dew. They then decided that IV meds would be better. After the IV meds and some fluids that didn't help, they told me that I could have another blood patch. By that time I was too nervous about it and decided that I'd rather wait it out unless it gets worse. Just the idea of another blood patch makes me want to cry. Plus, I've had chronic pain for so long, what's another headache? I've decided that I'm just going to lay low for the next couple days and drink lots of fluids. If it does get worse, I'll go in and insist on some anti-anxiety medicine before the blood patch. I just hope that this anxiety about medical procedures goes away before my surgery on Monday!
When the doctors did the blood patch they told me there was a 10% chance that it would fail. It turns out I'm in that 10%. I was only up for about two hours today before the low pressure headache started again. So now we're spending another day in the hospital, but in Saratoga this time. (We drove through the fresh snow last night.) They're trying to get rid of the headache with some IV meds. If that doesn't work, I'll need another blood patch. Let's hope I don't need another one because if see another needle I'm gonna go crazy. I don't have any veins left that aren't all bruised.
Well, the blood patch worked, and would have been a quick fix if the hospital wasn't so darn busy! We were there for 6 hours for a procedure that took 10 minutes plus an hour rest after that. We spent a lot of time waiting for the doctors, but it was worth it. It's amazing how quickly and effectively the blood patch worked. I went from experiencing the worst pain I've ever felt to feeling better than I have in months. The only problem is that I've got a pain in my lower back which is where the injection was. Hopefully that goes away soon.
It seems they took out too much fluid when they did the spinal tap. Now I have a low pressure headache that can only be fixed by a blood patch (reverse spinal tap). After getting ready to drive to Albany I realized it was worse than I thought and called Dr. B. He said to go to the E.R. and get a blood patch. So we're making a detour on the way to Albany. Hopefully it'll be a quick fix.
After a longer day than we expected, Heather and I are ready for a long weekend. Invasive traction on Tuesday showed that it provided a lot of relief. The lumbar puncture on Wednesday provided Heather with complete relief from her Chiari headache. They cancelled the shunt surgery on Thursday. We have the weekend free until early Monday morning when Heather will have the fusion surgery.
We made it to NY just fine yesterday. The flight was uneventful: I was able to sleep most of it! We spent the afternoon and evening resting and checking out the neighborhood that we are staying in. We found a little italian place for dinner.
Today we took the bus to the hospital for my pre-surgical testing. It was basically a physical exam. So, today was pretty booring and uneventful. I can't eat after midnight tonight, so we are going to go out for a good dinner tonight. I will have the invasive traction tomorrow afternoon. Check back for more updates later!
We are packing and getting ready to leave early tomorrow morning. I think Baxter wants to go with us. Don't you? Only problem is that he doesn't leave much room for my clothes!
Well, we leave for NY in just 3 days. Since I posted the important dates for our trip a while ago, I thought I'd mention them again. We'll try to keep you all updated as the time passes while we are gone.
I got word today that everything is on track for my upcomming surgery. Its all scheduled, the insurance has authorized (not yet guarenteed payment- that's another issue and battle), we have our plane tickets (we just have to hope the NorthWest pilots don't strike) and hotel reservations. We even have Baxter and Rex taken care of, and they don't have to go to the kennel! We have some wonderful friends that are going to bring their dog and come and stay at our house. It all seems to be inline and I'm starting to get anxious about it. I think I'll be busy at work the next week and a half so that should help pass the time.
When I had my MRIs and CT scans done in NY, they gave me a disc of the images. I've edited and uploaded some for your viewing pleasure. These are not photographs so they shouldn't upset your stomach...no blood and guts!
The first image is a MRI of my brain. I've labeled the key areas and will describe them here.
The Chiari Malformation is the major problem that I have. The part that is outlined is an 'extra' amount of cerebellar tonsil matter. It sits down too far and was putting pressure on my spinal cord (from the back) and the back of my skull. In April 2005, I had decompression surgery to hopefully eleviate this pressure. Here is an image from the 3D CT scan that was done. It shows the portions of bone that were removed during my decompression surgery.
The Retroflexed Odontoid (shown in the MRI) is a small bone near C1 that, in my case, is pointing in the wrong direction. It should be straight up-and-down. Mine leans in towards the spinal cord. This problem was found by TCI when I went in November and it, along with cervical instability is one of the things they will try to fix with my upcomming surgery. My cervical instability is due in part from the decompression surgery and the fact that I have a slight case of EDS (Ehlers Danlos Syndrome - it effects connective tissue).
Something else shown in the MRI is a pocket of fluid that sits just behind the area where the bone was removed. The docs at TCI are a bit puzzled with this pocket of fluid. They aren't sure what its from and won't know what to do to fix it until they get in there and look around. They are suspecting that there is a tiny CSF (Cerebral spinal fluid) leak in my dura, which they will repair if that's the case.
Hope you aren't looking for blessings today. You didn't really think that someone who is in chronic pain and trying to fight depression away would post blessings every day, did you? I've learned that each day I only have a certain number of 'spoons' and I have to pick and choose which tasks for the day are worth giving up a 'spoon'. If you are wondering what the heck I'm talking about, you should read this article. I borrowed the spoon theory, sometimes it just fits! Sometimes it helps make the invisable pain more tangeble.
This morning I had some nerve testing done on the nerves that run down my arms. Because of symptoms that I've had, the doc thought I might have Thoracic Outlet Syndrome and/or Ulnar Tunnel Syndrome. So, I got up early, to get there at 7am to be poked and shocked.
He started with the shocks. He would shock my nerves and see how long it took to get from that nerve to my muscle and make the muscle twitch. It felt strange, but was tolerable. After a bunch of shocks, the doc said to me 'you make this look easy'. I wondered if that meant that the results were all perfect or that I was not reacting like many other patients. He then told me that I was tolerating the testing very well and not reacting like many do. What did he want me to do, shout? flinch? pull my arm away? Yes, it was a bit uncomfortable, but tolerable.
Next came the poking. I guess I had heard about this part, but I had forgotten. He pricked a needle into a muscle and listened for abnormal 'electrical noise' within my muscles. The needles were uncomfortable, but nothing compared to other pain I've felt so I was able to tolerate the entire test without too much complaining. The doc said 'maybe the silver lining to having a Chiari Malformation is that you've dealt with so much pain all the time that these types of things don't bother you as much as they would an average patient'. Great thought, doc!
So, after all this, he said 'the tests look normal'. He then went on to say that these tests are not perfect and thus, I could still have Thoracic Outlet and Ulnar Tunnel syndromes. Or, the symptoms could be related to the Chiari Malformation and may improve after my surgery. Lets hope for the latter!
I finally have some dates set for my upcoming surgery. They are as follows:
Sunday, February 26 - Travel to New York
Monday, February 27 - Pre Op testing
Tuesday, February 28 - Invasive Traction
Wednesday, March 1 - Lumbar Puncture
Thursday, March 2 - VP shunt surgery
Monday, March 6 - Big surgery day. Fusion and/or decompression revision
Monday, March 13 - Staple removal
Tuesday, March 14 - Go home!
I won't have to stay overnight in the hospital for the testing, so not until after the shunt surgery. I also may be discharged for 1 or 2 nights after the shunt surgery and before the surgery on the 6th. I'll have to stay in the hospital for about 5 days after the big surgery. So, I'll have to stick around NY for a couple days until I can have my staples removed.
Instead of flying home right after Heather's appointments at the Chiari Institute, we decided to extend our stay to visit our friends, Jer and Danielle and their new baby Ian. They invited us to join them for Thanksgiving at the Bailey house. I think the last time I was at the Bailey house was just before I moved to Minnesota, over five years ago. During my four years of college I visited the Bailey house many times. I always had a good time and this visit was fun too. It felt good to return to a familiar place. I enjoyed seeing Jer's parents, brothers, sisters-in-law and their kids. I hope it won't be another five years before I get to see them all again.
Today I had appointments with a nurse, neurologist, and neurosurgeon. I felt like I was giving my life story to the nurse. I answered questions about my headaches, my past medical history, and my family medical history. Dr.Mora, the neurologist showed me the images from all my testing yesterday and performed a whole slew of neurological tests such as pricking my skin with a needle and making me do silly coordination things. I think I passed most of those tests except for some that were testing the nerves in my arms. Aparently I have some nerve damage in my arms. When it came time to see Dr.B, I was tired and in quite a bit of pain. I tried my hardest to stay focused and its a good thing I did, because he told me alot of information. The good news is that my first surgery was a success in that it did decompress my cerebellar tonsils to an acceptable degree. The bad news is that there are other issues one must consider when treating a Chiari Malformation. Dr.B thinks that I have Cervical Spine Instability, High CSF (spinal fluid) pressure, and a soft spot. The soft spot is where the bone was removed from my skull. The fix for this is to add some sturcture in there which I think would be a titanium plate. The high CSF pressure could be causing my headaches and will require a lumbar puncture for final diagnosis. If indeed i do have the high pressure and a lumbar puncture helps, then a shunt would be placed in to drain the excess fluid out of the spinal canal. The treatment for the instability would be to fuse some of the top vertebrae. The test for this would be traction. When I return home, I will get a traction device for home use. I will have to sit with my head in traction (hanging from a sling) for 45 minutes per day for a month. If this seems to help, I will have invasive traction. If that sounds scary, don't be to alarmed...I just will spare you the details now. So, it looks like I'll be making another trip to New York. I'll call schedule all these things when I return home. It sounds like it won't all take place until sometime in March. Looks like its going to be a long winter for me, but at least I have some answers.
Yesterday I had a CT, 4 MRIs, and an xray. We spent the better part of the afternoon at the Diagnostic Imaging center. This morning I got a call and they asked me to come to the Chiari Institute (TCI) at 10am instead of 1pm. So, I thought this would be great since we have a 4 hour drive ahead of us tonight. So, we are here, but it looks like they weren't able to move all my apointmnets up, so we'll still be here all day and into the evening. I'll be going in to meet with the nurse soon and then it will be time to find some breakfast/lunch. We drove around here on the way looking for a Dunkin Donuts, which seem to be on every other corner, but couldn't find one! More updates to come!
Tomorrow, Nate and I will be flying to New York to visit the great doctors at the Chiari Institute. They will perform many tests on Monday and then Tuesday I'll meet with a couple of the doctors there and they will come up with a treatment plan. Lets hope for some good information!
We will extend our trip and drive up to the Albany area to visit some great friends and family.
One week later, on Saturday, we will fly back home. I'm sure by then we'll miss our little Baxter.
Baxter and I both have colds. Actually, he has Kennel Cough, but that's basically a cold. So much for the vaccination that he had against Kennel Cough! I took him to the vet today and $75 later, we were home with antibiotics and cough suppresants. I woke up with a tickle in my throat and now I can tell its a head cold with sore throat. I feel like such a baby, but when you add anymore head pain (from congestion) to my already constant headaches, I just want to cry!
The snow that was promised is just starting after 12 hours of cold icky rain. They are still saying 3-5 inches of snow overnight, but I'm not going to hold my breath...the story seems to change every hour.
Tomorrow afternoon I will be slightly radioactive. Yup, that's right, I'll have to take some radioactive iodine in hopes to regulate my hyperthyroid. I was diagnosed with Graves Disease in 2001. I've fought with the thyroid symptoms since then. Some of the symptoms of a hyperactive thyroid are: irregular heart beat, shaky or weak muscles, nervousness, and increased body temperature. Hopefully after a few months, my thyroid will be back to normal and I won't be a human radiator anymore!
Yes, I hate to admit it but I didn't make it to North Dakota this weekend because of my headache. I made it about 4 months after my surgery without any bad headaches. Then about 2 1/2 weeks ago, they started again. My surgeon has told me to cut back to 4 hours per day at work and to try to rest as much as possible. He also tells me that there is nothing else that he can do to help me. He thinks I should go back to the neurologist that referred me to him and try some new medicine..I don't like that idea! I called the Chiari Institute and they think they might be able to help me. So, it looks like I might take a trip to Great Neck, NY sometime in November.
When I saw the surgeon last week he told me that I can slowly resume a 'normal' life. I'm back to work for just short days (I won't be back full time until after our vacation). I'm starting to do more around the house and I'm out walking Baxter (that's the name we decided on for our little pup) quite often. The best news though, is that I'm running again! I've been out three times and its slow going, but it feels great to be out running and sweating!
Its been 5 weeks since surgery and I still have not had one of those horrible headaches that I used to suffer from nearly every day! I still have some surgical pain and I'll be seeing my surgeon on Thursday. I have a feeling he will say its just some torn internal stiches and some scar tissue building up and breaking up as I move more and more.
I'm feeling well enough that I've been doing projects such as power wash the garrage door and stain the deck. I decided that if I can do things like that, I should get back to work. I'll be starting again on Thursday, just for a few hours a day. I'm looking forward to getting back into it!
I really can't be more happy about how my surgery went and how my recovery is going. I guess since I'm one of thoes people who can't just sit around for weeks on end, I should have known the recovery wouldn't be 100% in the right direction.
I went to see Dr.Davis yesterday because of major neck pain and a new pressure feeling in my head. I was also experiencing nausea and hot/cold spells. I was totally parinoid that it might be an infection, but Dr.Davis assured me that my inscision looks great and he doubts that I would have an infection.
So, his responce to my symptoms: I probably tore some internal stiches and I'm getting muscle spasms from that. Also, I might be fighting a touch of the flu. He did say to watch it and he wants to see me next week to be sure he didn't miss anything.
Lets hope for the flu and not an infection!!
Well, its been 4 weeks since Dr.Davis cut my head open. Not much has changed in the past week except that my neck is getting more and more sore. It feels like I have two knots (each about 2 or 3 inchs long) going up either side of my neck. I'm not sure what to think about it besides it is so frustrating!
I've been trying to keep my time occupied with activities that are not 'strenious or reckless' but I'm not having a whole lot of luck in the fun/satisfying catigory.
- don't have to lift anything even close to 10 lb
- Its not aerobic
- BUT, it too much time looking down (causing neck strain)
- About the same as sewing
- Again, same as sewing
- lifting can be a problem (I keep sugar and flour in large containers) although I can work around that
- not aerobic
- satisfying because I love to eat the results
- BUT, too much time on my feet and working at counter height, again, causes neck strain
Teaching myself to play guitar
- guitar is not too heavy
- BUT, major neck strain
So, I'm hoping this neck pain will soon be gone, just like my headaches are. Sorry for all the complaining, but its another cloudy/rainy day here in MN and I'm just sick of resting and having this pain.
It has now been 3 weeks since my surgery. I'm happy to say that I have not had a headache (the type I had every day before the surgery) since April 19 !! My surgical pain in my head is getting better by the day and it is minor enough that I'm out and about doing things other than watching TV and sleeping.
I've been working on some projects around the house. I've planted some flowers for the entry way and the deck. I've also been working on making curtians. I'm 2/3 of the way done with the curtains. After I'm done with the last window, I'll be making matching pillows for the livingroom.
I might be doing too much since I've been experiencing a different pain/weekness in my neck. The doc said to use a neck support when I think I need it and to rest more! I guess I better slow down.
Well, all and all, I am doing great.
I'm really beginning to wonder if my surgeon did anything besides sew up the back of my head! Don't get me wrong, I feel great!...but that's the problem...I feel like I shouldn't be feeling this well since I just had brain surgery 11 days ago!
This morning I woke up feeling well and decided I wanted to get out and do something fun. We went to the green house this morning and I got some flowers, I hope to plant them sometime in the next couple of days. We also went to the Mall of America for some shopping and some Famous Daves. I had a great time, even though it was a bit of sensory overload for me...the mall is always like that though.
So, I've had a busy day and not even a wink of a nap today. Its 10:30 and I should be exhausted, but I'm not. I'm actually wide awake so I might have to watch some TV in hopes I'll get sleepy soon. Today has been my best day post-op (actually, my best day in over a year). Lets hope they continue to improve!
This picture was taken 6 days post op. Looks like I'm healing quite well. I think he took a bit more hair than he needed to, don't you? I've got a challange for some lucky hairdresser! I'm going to see if there is anything they can do to blend this shaved portion into a short haircut. Maybe I'll just wear a hat for the next 6 years or so until it grows back to the length I'm used to.
I've now been home for two days and I'm very glad about that. I've been resting more than I like, but I guess that's the way its going to be for a while. I think I'll start some small craft projects tomorrow. Maybe I'll do some scrap booking since that's something I can start and stop any time I may need a nap. Any suggestions for short, non strenious activities to help pass the time?
Just a quick note to say Thanks to everyone who has sent support through email or replying through this blog. It was really nice when Nate would come back from the library with printouts of all the wonderful comments.
Also, thanks to Nate for keeping everyone updated so well.
I'll try to keep updating this as I recover at home. I'm sure I'm going to be doing alot of resting and hopefully some relaxing too!
Dr. Davis discharged Heather this morning. I got her home by 11:00 this morning. The car ride wasn't comfortable, but she made it without complaints. She now has six weeks of rest and relaxation before her next appointment with Dr. Davis. Her orders until then are, "Don't do anything strenuous or reckless."
Wednesday was a good day for Heather. She ate a whole bowl of Cream of Wheat for breakfast. Around 10:00 she was transferred out of the ICU to her own room. By the afternoon she was walking around the floor. Read on for more details.
Heather was able to eat breakfast on Wednesday morning. She was able to take her morning pills and ate a whole bowl of Cream of Wheat.
Dr. Davis stopped by during breakfast. He told Heather how the surgery went. He said there was little doubt in his mind that the Chiari was causing her symptoms. Dr. Davis said that the tonsils went all the way down to the C2 vertebra. They took out a small portition of C2 (about 5%) in addition to the C1 arch and part of the skull. We also got a few pictures from the surgery.
After breakfast I went to the library to try to write a blog entry. Unfortnately I couldn't get to refried.org. When I got back, they had Heather in a wheel chair and were about to transfer her. They moved her upstairs to her own room on the 9th floor.
I stayed with her until they served her lunch, at which point I went and ate mine. It took me a while to get back to the hospital because I went looking for a teddy bear for her. Her one request before she came to Mayo was that she wanted a new stuffed animal during recovery. Toys'R'Us was the only place in Rochester (besides the hospital gift stores) with teddy bears. I couldn't find a bear with enough character so I settled on a Yellow Lab. She loved it. :)
Later in the afternoon she was able to clean herself a little bit and went for a walk. Her first walk was all the way to the other end of the building and back. It really was quite impressive.
We also talked with Dr. Davis' assistant, Dr. Utter. He explained the photos in great detail, showing us the tonsils and where the bones used to be. He emailed me the digital pictures, which I'll post later.
For dinner she ate some pork, stuffing, and canned pears. She also had chocolate cake for dessert. Still no stomach problems. We went for a couple more walks that evening, including one lap where she walked without holding my arm.
Thursday morning she was feeling good. She ate Rice Krispies and toast for breakfast. We also walked around the floor a couple times. Heather is really looking forward to going home.
We spoke with Dr. Davis. He wants Heather to have one good day on the floor before she goes home. So she won't be going home on Thursday, but Friday is likely.
Sorry for the late update. I wasn't able to find a free WiFi connection at the hospital and this morning the DSL cut out. But what you really wanted to know was that Heather's surgery went fine. Read on for more. We got to the hospital around 5:30am for a 5:45 admission. There were a ton of people there, at least 40 families, all checking in first thing in the morning.
After a short wait we were escorted upstairs where Heather changed into her gown and we waited for a while longer. Around 7:00 they took Heather away and left me in the waiting room. The family waiting rooms at Mayo are very nice. I sat there until about 8:00 before deciding to finally get breakfast.
Around 9:00 I was told by a surgery communicator that Heather had entered surgery, but didn't have a start time for me yet. At the same time they transferred me up to the the ICU waiting area on Mary-Brigh 8. Around 9:30 I was told that Heather started surgery at 9:20.
At 11:20 I was told that they started closing. I was amazed at how fast the surgery went. Little did I realize that closing takes a lot longer than openning. It wasn't until 1:20 that I learned the surgery was done and she was tranferred to recovery. It would still be a few hours before I could see Heather.
At 2:30 in the afternoon, Dr. Davis stopped by the waiting area and told me about the surgery. He said there were no complications and that the surgery went fine. Dr. Davis also said that the chiari malformation was much more pronounced in surgery than it showed in the MRI. He called it, "quite impressive."
It wasn't until about 3:45 that I was finally able to see my wife again. Heather was quiet, but talking. She was still in pain, but she wasn't nausious at all. I told her about all of the calls I made that day and passed on all of the good wishes. Before she went to bed she was able to drink some apple juice.
I made it through 4 appointments at Mayo today and I still don't know what time my surgery will be tomorrow. I have to call tonight after 8 to find out what time to report to the hospital. Dr.Davis says that there aren't any long term effects of the surgery so things should be back to normal shortly. I think he and the nurse think it's too routine..it may be for them, but not for me. I think Nate is going to have more of a rough day than I am tomorrow. He will have to wait about 7 hours from the time I leave him until he will see me again. Off for a good last meal before I have to eat jello for days.
Yes, that is right, I had my first nightmare about my surgery last night. Actually, I didn't even get to the surgery, it was just the first dose of anesthesia that made me go into a seizure and gasp for air. I woke up gasping for air and I was to scared to go back to sleep. At least it was 5am and I had to get up in an hour anyway, so I got up and had some breakfast. I switched on the TV and there was nothing on except the Pope's funeral. I'm sorry, but I'm just not interested in watching that...perhaps I should have recorded it though, for those nights that I need something to help me get to sleep!
I need to think of something really booring to do in hopes that it will make me fall asleep. Any ideas would be apreciated!
The docs say that insomnia is a symptom on Chiari. I can't figure out if I'm not sleeping due to insomnia or just because of the pain in my head. Either way, its frustrating.
Only 10 more days till the big day. Lets hope the Surgeon doesn't come down with the flu or something in the next few days! Lets also hope he doesn't drink too much coffee on the day of my surgery...we don't want his hands to be shaky!
Well, I've tried counting the bumps on the popcorn ceiling, but that didn't work...any suggestions on how I can quickly drift off into a wonderful nights sleep??
So, after some research on my own and some contemplation about the surgery, I've decided to go ahead with it. The condition I have is called Chiari Malformation I. My herniation is about 10 mm, so they will probably have to go down to the second vertebra in the surgery.
I'll need to find something to occupy my time when I'm in the hospital post-op for about 6 days. The only thought I've come up with is to order Jello every meal to see how many different colors they will serve. Any other suggestions out there??
Linda, my Mother-in-law will be visiting from Maine for a couple weeks after my surgery to help take care of me. It sure will be nice to have her here. It's tough being half way across the country from your family.