Hello all! I am having decompression surgery for CM1 tomorrow morning. I’d be lying if I said I wasn’t shaking scared! I have a couple questions for my fellow decompression chiarians… 1-how much pain were you in following the surgery and how long did it last? 2)what kind of medication/steroids did they put you on?
I have a four year old daughter who I’ve decided shouldn’t drop me off at the hospital before going to school for the day… Does anyone else have young kids that they had similar decisions to make? What did you do and why?
My procedure is a craniotomy, duraplasty and laminectomy for a 22mm herniation. Very symptomatic. The list is long but the worst are the headaches(!!) balance and vision. Memory is pretty awful now too. Thanks for any info response-I really really appreciate it!
Hello, My name is Cynthia and I have Syringomielia w/ CM1 I have had quite a few operations. In 2000 I had my decompression surgery it did improve the MONSTER headaches that lasted for days,But it did nothing for my balance, vision or memory.When i had my operation I did not want my kids to see me stressed out and scared it would have made it worse for them.I do remember that we made it clear to them that by doing this even though it looks horrible it is to help me I cant remember the exact book but there are books for young children to help them understand what is happening .Good Luck and Try to stay strong PAIN is a part of our lives and for that reason you are stronger than most people who cant even function with a normal headache. My youngest was around 5 when i had mine and shes in her first year of college now so dont worry about the effects this will have on your baby You bhoth will do great .ARNICA have you heard of it? It comes in a tea form and a cream form.It has been helping me in so many ways (sounded stupid to me) the cream will help with the healing when safe rub on op.site and i drink 1-2 cups of tea a day .Its really helped me and reduces scarring. Its found in health food store or mexican market .I add cinnamon and sugar. Good-Luck
I am sorry but understand your anxiety and fear of decompression surgery.
My CM Surgeries were done on an emergency basis and lasted 16 hours. I am not the right person to answer your questions. You would be more stressed with my answers & I don't want that. The average surgery time is 2-4 hours.
My daughter did not go with me to have decompression surgery. It was an emergency and we were not sure of the outcome. She was with family and loves my NS so she felt like I was totally safe in his hands. I personally don't think your daughter should go to school upset thinking about dropping you off at the hospital, but I am sure some parents will disagree. She is awfully young. Have you discussed your CM with her and your surgery?
Hi,
I had the same procedures done almost a year ago. They should have you pretty well medicated when you wake up so you shouldnt be in much pain, and if you are chances are you wont even remember it, the most painful parts after the surgery are when you have to try to sit up or change positions and then later on when you start to relearn how to turn your head and lift things. If you are in pain initially after surgery, tell them and they will try to help. I was on flexiril for the muscle relaxant although i cant recall the names of the steroid or pain pills. Oh and the first day or so without the steroids will be some of the worst days of recovery, you will feel like you have the flu, so make sure you are prepared for that in terms of plans and child care.
Best of luck,
Christina
I'm home recovering from craniotomy, duraplasty and laminectomy on April 3. I had it done at Tufts Medical Center in Boston. My main symptom was horrible, crippling headaches.
I lost five pounds in the weeks before surgery, I was so anxious. But it all went very smoothly.
I was in the hospital for three days, where they gave me Percocet. Once I went home I went down to Vicodin at bedtime and ibuprofen during the day. I really didn't have much pain. Almost 4 weeks on, I'm feeling very good. I'm regaining range of motion in my neck. My main issue now is fatique and some minor things. I'm still memory impaired, which I think is from the surgery. The good news is that my headaches seem to be better--I've been coughing from seasonal allergies and especially in the last few days have not been having "cough headaches." The NP did tell me that it could take 3-4 months for all the swelling to clear out from the surgery, so I might not know for a while if the surgery "worked."
I would discourage bringing your daughter to the hospital. If you can, have a friend or relative stay at your house the night before and see her off to school in the morning. My kids are older (11 and 15); my parents stayed at home with them while my husband was on hospital duty. That kept things as close to normal as possible for the kids until I came home and for the initial period afterward.
While I was in the recovery room after the surgery, the staff there were on top of the pain...meaning, they made sure I was somewhat comfortable before they sent me to ICU for the night. I am sure you will have the same experience while you are in the recovery room...do not be a hero...let them know how the pain is...they will let the doc know and you will get more medication..at least this was my experience.
I was out of bed the next morning to use the bathroom...then spent the most part of the day in bed.
Please let us know how you are doing .
Oh, sorry..you wanted to know what meds they had me on while in the hospital...I was on a morphine pump for about 3 days..then I was put on Percocets...no pump...and Zofran for nausea.
I just had my surgery for the same thing only 11mm. I don’t remember much of per surgery or ICU, except waking up dry heaving. Not meaning to scare you but this is how it was for me. As far as pain went I was pretty sore pain meds every 4 hr along with something for stomach. Hair felt nasty! Lol. Thursday they moved me to a room. Pain was still about an 8-9, still didn’t want to eat due to the smell made me sick. They started me on morphine after surgery then to fentanyl, then to another (because I’m allergic to everything. Friday was much better. Took shower then best you can do without getting head wet. Finally wanted anything besides custard and broth. Pain wasn’t to bad. Went home later that night. The weekend was a little rough had to call to call different pain med and something for stomachs. Now almost 2 weeks getting better.
Before surgery had numbing spaghetti arm on left side, it’s gone now. A shower with put me in a 4 hr nap but now I’m finally eating. Only taking pain meds when needed which isn’t too often.
I hope this helped and sounded like I was rambling. The only advice I can give is surrender to anyone who offers to help in any way. You’ll have little headaches when trying to bend over. Get a lot of rest and take a stool softener because that first poop is gonna hurt in more than one way!! Sorry but if you don’t laugh a little about what happens then you cry. This too shall pass.
I feel like I should preface my experience with the disclaimer that I have a very high pain tolerance. That said my post-op pain wasn't that bad. My head and neck were sore and stiff but not overwhelmingly painful. In recovery when I awoke they were giving me fentanyl and dilauded. Two hours later I got settled in my room and from there I got morphine for pain, valium for muscle spasm, and decadron as a steroid. I got a tiny bit of nausea after my dinner so they gave me one dose of zophran but I didn't need another. They were supposed to give me morphine and valium every 4 hours but due to a crazy night on the ward I got my dose of morphine at 9 and never got another. Even at that the highest I would rate my pain was maybe a 6 or 7. When the shifts changed the next morning I got another shot of decadron and percocet in pill form. Then I was allowed to shower and walk around unassisted. That afternoon around lunch I did some exercises for the occupational and then the physical therapists and since that went well I was released! :) I left with Rx for percocet, valium, and robaxin.
My daughter is 18 and grown up so I don't really know what to tell a smaller child. I would think low key would be best. I wouldn't say a lot about the details until after because she may just worry all day.
I'm now six months post-op and doing well. Feel free to ask me any other questions you may have! As far as neurosurgery goes my NS said it's one of the easier surgeries he performs so try not to worry too much...though I know that's easier said than done! I was so nervous and it wasn't even half as bad as I built it up in my mind! :)
Hi Kat. I had decompression surgery on March 5. I also had cervical fusion at the same time. I really can't say I was in that much pain. I did have pain meds while in the hospital (8 days) but came home with only Tylenol. I did end up with a UTI and mouth infection for which I had antibiotics and then had a blood clot in the lung. I think that was the worst part and am now on blood thiners for 6 months. I am feeling much better now and will be going back to work in two weeks. Not much pain at all in comparison to what I dealt with before the surgery. My best advice to you is to do everything you are told and get up and walk, walk, walk. It puts your system back to the way it is supposed to be as soon as possible.
Best of luck to you and with your daughter as well. My children are much older and were a great help to me.
I had my surgery 6 months ago and it was not as bad as I had expected.I will not tell you it was easy,but as far as healing went things went well.The recovery takes time and is up and down so just be ready to roll with the punches,after we chiarians go through what we have to face to get help we certainly know how to hang tough.You will probably be glad it’s done and you can start to heal,good luck,you will be in my prayers…I would do it again if I had to,my life is better than before and I’m sure your’s will improve too.
My first surgry was a decompression in 2007. At the time I had a 2 and 5 year olds. I had both grandparents help me. I had no complications from that surgury. I recovered in about 2 weeks. I was driving one month later. But I needed another surgury because the decompression just wasn't enough for me. But all in all, I was able to function in full mommy load in about a month. When I had the duraplasty surgury tin 2008, that was very different. I vomitted for about fours days after the surgury. My doctor had fully prepared me for that so it was not a surprise for me. That surgury really helped with all my symptoms for about four years. Now in 2013, all my symptoms have returned. Now I'm trying to get help from my fellow Chiarians.
I wish you all the best for tomorrow and keep us posted on your post-recovery. If you have any wisdom to pass along, please share it.
Thank you all SO much! I’m not sure I could’ve gone through the stress of it all tonight without you guys and your responses and advice. I REALLY APPRECIATE YOU ALL! I don’t post often (maybe twice??) but I do read everyone’s posts on the chance I’ll find some relevant info. thank you all again. I feel better already. My biggest fears for this are silly (apart from recovery pain) 1) general anesthesia, which I’ve never had and know I’ll be fine but nervous. And 2)meningitis! That last one I know is more of a possible complication but still…
I’m keeping my daughters schedule as normal as possible, school, karate class, playdates etc. my mother is here to help me with her care-thank god!
Thanks again. I really cannot thank you all enough but I will try.
I am 4 weeks post-op. To me, the pain has been tolerable. Obviously worse in the beginning. I had morphine in the hospital. At home I’ve had lortab for pain and either Valium or flexaril for muscle relaxant. Progress for me has been slower than I wanted, but getting stronger each day. All my symptoms are not gone, but they have improved. My head feels a lot better. My kids are older, but we had them stay home from school with their grandmother the day of surgery. They did not see me in the hospital. I was only there for two days. My surgery took 2 hours. But they did not open my dura.
I chose to focus on a scripture to keep me calm. “The Lord will fight for you. You need only be still”. Exodus 14:14. I had peace going into surgery.
My kids are older but my mother came home from FL to help with the kids - this really helped with me being able to sleep. I was released 2 days after surgery which was to soon. By the time we made the 3 hour trip home my lower back was in so much pain and the meds were not helping. Was in the ER the next day and my neurosurgeon had them do a spinal tap which helped for about 12hrs then the next day was back in the ER and sent back to Chicago for readmission and another spinal tap. My decompression surgery when it opened every thing up it the spinal fluid was running pretty good and that was why they had to do the 2 spinal taps to remove some of the fluid. You are having a lot more done than I had - if it had not been for the 2 spinal taps I did pretty good after surgery. If you have long hair make sure right after surgery if they use surgical sticky tacky that they remove it - my hair was half way down my back w/no layers and now is shoulder length with layers. The sticky tacky hardens up fast and there was no way to get it out but to cut my hair :(
My decompression was in November issues now are the nerves are really starting to wake up on the left side of my head so its itchy and tender to touch, headaches are hit and miss, not as bad and more in the occipital area and not lower where it was before.
Don't worry, the hospital will provide plenty of pain meds as needed, don't be embarrassed about asking for more, if you need. As far as the kid thing, my two were a little bit older, 10 and 11. The surgery was in another state, it was a week long trip (vacation for them, not for me) so they went to the hospital with my wife and I. While I was in surgery my wife took them to a nearby park and zoo, made the 8 + hours pass a little easier. I was out of it for 3 + days, but when I came around, they were all there, made me happy. Of course they had to tell me all about the great time they were having in the "Big City". At least my hospital room did have a great view.
The most incredible thing for me was waking up with no headache!!! There of course is surgical pain. For the first 4 weeks u have pain in varying degrees. There will b a schedule for ur meds (my husband put it on a spreadsheet). I went off the steroid too soon & that was the most unbearable pain I experienced- they quickly put me back on & weened me again w/ much more success. I’m aoat 1 yr 5mo post op- my neck will sometimes hurt or get stiff. I will setes get headaches, but they go away & aren’t everyday. I’m sorry I can’t tell u the specific names of the meds but I believe there were 4 of them.
I have young children who went w/ family that took them to school. The limitations after surgery weren’t much different than b/4 b/c of my symptoms. The one thing was not lifting them - so I would let them climb on my lap (they were 2 almost 3 & 4 1/2). We just kept telling them I could pick them up until the lifting restriction was removed.
If u have any other questions please ask. I know ur scared - it would b strange ifu weren’t, but tomorrow starts the new adventure of feeling better & having more manageable Chiari symptoms. Good luck! I’ll say a little prayer for you.
I have a couple questions for my fellow decompression chiarians… 1-how much pain were you in following the surgery and how long did it last? 2)what kind of medication/steroids did they put you on?