Scared of Decompression Surgery

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Hello, I have CM type 1. Diagnosed over 2 yrs ago. Tried meds didn't help, last 6 months things progressing getting worse.. Having trouble comprehending, with communication, memory and major dizziness as well as numbness down my arms. Plus the headaches, balance, light, noise, ect.. I have recently been advised by neurosurgeon that decompression is recommended. I'm so scared to do surgery. But , more scared of the on going progressing of losing my comprehension skills. Anyone experienced these issues? Have any advice??

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    I had decompression surgery June 2. Anyway, had surgery- was in hospital 4 days. No problems except hard to swallow due to nasogastric tube down my throat and swollen lip from tube. I did well on drugs in the hospital. Only problem I had was nausea and vomiting- due to narcotics. So make sure they give you anti-nausea meds to take home. Been about 5 weeks now- my scar is healing and they didn't shave much hair, so it can't be seen. All is good!!

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    • Posted

      Glad to hear your doing well and didn't have many issues. I appreciate your reply. Fear of the unknown is the worst. I sure I am making my anxiety worse than need to be. Hearing from others on their experiences helps!

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  • Posted

    Hello, I had Chiari surgery May 9,2016, It took the drs. 1 1/2years to diagnosis it. The surgery went well, Like the other person I was in the hospital 4 days. The difficult part for me was trying to sleep, they want you to lay flat with no pillow. Once home my husband purchased a cooling pillow that helped alot. As much as you want to get up, try to rest, I am very active person, and I got dizzy, and had heacaches in my forehead. My dr said its from being up to long,. I am currently back at work, but I still have pain in the cord of myneck that goes down to my shoulder. I am having another MRI of my neck July 19. I work full time and by the time I get home the pain is pretty bad. I lay down, it helps some but it doesn't completely go away. This is different then the headaches I had before the surgery. You said you were afraid about losing your memory. I had difficulty with my short term memory before surgery. I had facial drooping and slurred speech at times when my headaches were at there worst. Since the surgery I have not had any recurring symptoms. My memory is getting better. I hope with time it will be better still, I use memory games, and read everything I can . I get frustrated when I can't remember the name of a person I work with or the name of a song sometimes. My dr told me it will take time and to be patient with yourself., everyone is different. I want you to know that since I have had the surgery I have more energy, I am happy, I laugh out load. I am enjoying my life more. I hope your surgery is a great success, May you remember how long it took to diagnosis and give yourself the time to heal.  I was afraid to but its the best thing I did' I will pray for you and hope everything goes well. 

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    • Posted

      I can't lie flat with no pillow as I can't breathe. I told them this before and after surgery so I had my hospital bed propped up at 45 degree angle and had lots of pillows. I had ice packs on the back of my neck, although the ones at the hospital don't stay cold very long. You definitely need to take your time and not overdue things!!! It can take up to 6 months to get fully recovered. Sometimes longer. So if you are having headaches, that is a sign to go lie down!

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    • Posted

      Its good to hear you are back at work. I had surgery 10th May and still do not feel well enough to go back. I am not allowed to drive yet either
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    • Posted

      Hi lovely to hear your surgery went well and you are recovering well, your comment about your facial dropping and slurred speech has caught my attention as I have the same symptoms as you yet my nuro surgeon has said this is not a symptom of CM. I was diagnosed 6 months ago with CM type 1 and due for surgery in August. I am hoping this op helps as the last 12 months have been terrible. So glad too hear your well x
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      Hope you are getting better. I went back to work July 5, I work on the computer- data entry, I do drive myself to work, I do have difficulty with turning my neck side to side, and raising and lowering my head. I don't take any pain meds, except Aleve because the other pills make my concentration more difficult and be nauseated. I really didn't have much choice in going back, due to FML (family medical leave) from my work only allow the 8 weeks off. I probable due push my self more than I should but thats just me. I don't tell people at work that it hurts, I just say "Oh, I 'm feeling great, much better", smile and try to get through the day. Honestly, I do feel much better than before the surgery. I do know that I am not completely recovered yet. I am going July 19 for MRI of my neck, dr said possible pinched disc in neck ? I know this recovery will take time, but I try to stay positive and I know I dont want to be where I was before. I was upset all the time, in constant pain, on the verge of tears all the time, having constant headaches that would not go away. with no energy, I gained 30lbs, I was miserable. Now I feel I am on the road to recovery, happy, and with more energy, Don't be discouraged, you'll get there, 

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      Hi, nice to hear from you. My symptoms actually started in Jan. 2015, I didn't feel well, and after a nap I woke up and my husband thought I had a stroke. My left side of my face was drooping, I had slurred speech, and very bad headache on my left side. I had tingling in my left arm and leg. I went to emergency. I was put through all kinds of testing. The tests were all negative. I was going home the next day and in the morning had a second accurance. Had more test, nothing was found and they said it was from a migraine. From that day on I had a constant headache, at times the pressure type pain and a burning so bad that I would be crying. The stroke like symptoms usually lasted about 4- 8 hours, and I had them usually 1x/week to every other day in the weeks leading up to surgery. I had so many different medicines that didin't work, point injections, botox shots 3 different times ( 31 shots all over my head). I was so frustrated, Finally I met Dr. Heffez,  He made his diagnosis in Feb. 2016 and I had my surgery in May. Hope this is helpful, and I hope your surgery goes well.

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  • Posted

    I think the best thing you can do is research!! Look up all the information you can find online about Chiari and treatment. There are sites where they actually show them doing the surgery. I also downloaded all my test results and researched the terms they used so I knew what was going on. When I talked to my neurosurgeon who did my surgery, I knew what he was talking about. So that really helps with the anxiety. There are alot of medical terms in reports, but it's your brain, so well worth figuring out what is going on!!

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  • Posted

    I'm expanding on my previous response:  If things are getting worse so quickly, I'm guessing CSF flow may be blocked. Go see a neurosurgeon and get an MRI Celle- cisternogram- it's a video they take of your brain that shows if CSF flow is blocked. My symptoms came on pretty suddenly too and got worse fast. 

    Surgery isn't bad. You get IV's in your arms, so if you're nervous about needles, you just look the other way when they get inserted. After you're unconcious, they insert a foley catheter and put leads on your chest to monitor heart. When you get out of surgery, you'll be heavily medicated. So you have to get adjusted to eating, without puking up (which occurs due to the meds you're on).  I really looked forward to having food. But in the end, I had trouble swallowing it at first. So that was no fun. I got to have cake and pudding and apple sauce.

     didn't really have a ton of pain- But I had a dilotin drip, fentanyl, etc. Best thing is the push button painkiller pump. So when you start feeling pain you push the button!! It was really nice to have a shower after a couple of days. My incision has dissolvable stitches and is covered with a waterproof glue to protect it. So I spend time now picking off the residual glue. It's been about 6 weeks post surgery now and the scar has reduced quite a bit. Still have bloating around my face- this is from lying on your stomach with your head in a hole for 4- 5 hours. 

    The plus side: Vision is back!!!!  Dizziness is gone!!! Balance is BACK!! and I think my memory is much better too. 

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