Chiari Online Support Group

Going for surgery in November what should I expect

Hey everyone just wanted to see how many people have has surgery and was it worth it ? I’m so scared I struggle now but what if I’m worse after I’d be as well staying as I am meds help a bit my job keeps me busy and you get used to living with the constant pian in your head and neck and a bagging head that pops from nowhere or my stupid leg goes at most inappropriate time

Hi, Nicola!

You can get used living with pain, but it drains your energy and in months and years it really adds up. You want to do everything possible to avoid that. If your leeg goes numb, that means something is messing with your nerves - like something is touching it that isn’t supposed to. In time that can cause permanent nerve damage- that is pain, or even paralysis.

Your body will need some time to recover after surgery. Generally, the better you are pre op, the easier the surgery should be on your body stress wise. It will be easier to recover now, than, ltes say, 5 or 10 years from now, when you have lived all that time with pain and lots of worries, when your body has been drained of it’s resources.

I had my surgery 3 1/2 months ago and even though I’m not feeling that much better, there is no way I’d say it wasn’t worth it.

I haven’t had head aches, the suddend stabing needle like pain, my back pain has lessened, I can sleep on my back(I couldn’t before, because it was too difficult to breathe), weakness in arms and legs has lessened. I still have severe fatigue, buut my NS said, you can’t expect to live all those years in that condition and not have your energy drained. He said, It would take some time.

Don’t be afraid! Things can get a lot better! :slight_smile:

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Thank you for taking the time to reply it means so much to hear things from someone who’s been their no one understands the pain I live with and why I have to keep pushing on regardless I’ve two babies who need their mummy. Much love hope you are feeling well xx

I feel ya nicola. I have my surgery on the 31st of this month. They’re taking part of the skull out to widen the hole in the bad as well as taking part of my c1 and top half of my c2. The surgeon stressed that for the next few months after surgery I’ll still be in a lot of pain so just remember that too. Keep fighting cause for right now that’s all we can really do

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Hi Jeremy & Nicola,

I’m 6 weeks post open from exactly the surgery Jeremy described. The long incision site is remarkably healed. My larger neck muscles, especially on the left side still ache every day in varying degrees. So, yes I still have pain, but it is not the same stabbing searing pain I had before surgery. Just had my first check up and the surgeon said I am within the norm pain wise.

He reminded me how long it took me to get to him, to finally be diagnosed, which was a bit over a year. I know many people live with it for much longer. Fugu is so right in saying that eventually, your body wears out, and the pain just gets worse. I was at the point where I thought I might be crazy because no doctor was able to correctly diagnose me.

He said it took me over a year to see him, give it 6 months to heal from that long road.

The surgery, especially the first few weeks following is very painful (they did warn me), but even after just 6 weeks, I am so glad I had the surgery. Stay positive and the best of luck to you both!

Colleen

Nicola, nice to meet you. I want to let you know that if I would have had my surgery just 2 months earlier then I would not be a chronic pain patient today. My chirai was found after my last son birth, I was put back in the hospital three times on maternity and then they found the chiari. I was referred to a neurosurgeon immediately by the neurologist. He said yes I think you may need surgery, "HOWEVER, LET’S WAIT AND SEE. " That statement has crushed my fun outgoing life(well I still try to be positive but sometimes it’s hard). Not even 2 months later my brain dropped some more, blew out my spinal cord and caused a syrinx. The syrinx caused nerve damage down my right arm that is never ending. I went back to the neurosurgeon who then says, "yes, it’s time for surgery. " (i was like you think? Grr) I had my surgery done four years ago and just this April had a electronic stimulator device implanted to help with the nerve damage that I still have(not that helpful, it’s just a different non pain feeling but not normal). It never went away. My hell itself headaches are gone, but I will NEVER BE ME. And I will always be fighting every day to overcome this pain. I do not tell you this to scare you. I tell you this to educate you of my situation and how fast my situation changed in an instant. If you are religious, take it to God. Get your answers. But PLEASE PLEASE take care of yourself. Also, if you feel that surgery is just not the path for you. Don’t hesitate to ask your doctor opinion on what the chance would be that you would develop a syrinx. Just for your personal peace of mind. Because in the end I don’t wish what I go through on anyone. Sometimes, it’s not about what the doctor told us as much as the right questions to get answered by the doctor. My doctor completely failed to mention the severity of the syrinx that was starting on my spinal cord until it was upmost important. I hope this gives you some useful information.

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I’m missing my c1, c2 and they notched out another one. I have circle skull missing too. If I’m not mistaken your younger Jeremy, so you can freak out some friends. Heck I let my teenagers friends touch it.lol It just feels a little indented nothing really freaky. Are they going to use cow, cadaver or your own skin to make a pouch during surgery? My teens said I would be like a zombie mom. Bhaaaa After you get the go ahead to start working on building your muscles back get on it. I actually have great rotation and always did one of my favorite stretches.

Decompression surgery is a serious surgery as I’m sure you know. If you do not have Syringomyelia or Hydrocephalus, I would get a second opinion. Also, if you do decide to have the surgery and have pets or children, you will definitively need some help.
Also, you will have a hard time caring for yourself as well and will need help with meals, laundry, bedding and changing the bandages on your stitches. The changing of your bandages will take a mature, careful hand.
The sutures will need to be gently cleaned and yes…the bandage will have to come off and on. So, your doctor may not stress the details for this but I will do that for you now :innocent:.
Make sure that person’s hands are clean, and that the kitchen table or wherever you choose to do this is also clean as well. Many infections happen after surgery, but it doesn’t have to be that way. Also, make sure the bandages get replaced. This area has heat from where you are sleeping and bacteria can creep in. My husband used the solution the hospital gave us and I used the hospital shampoo. (doesn’t have much of a smell :frowning: but will not be abrasive as to bother the area. Also, try to stay off the hard core pain killers as much as possible and drink a ton of water. Hope all of this helps!

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Oh wow coastirish I think you just made my stress of surgery go down a ton. Hearing of someone having the same surgery I will and seeing that they are getting better weeks later. How long off of would do you think it’d take for someone who’s job consist of heavy manual labor?

Hi Nicola,

I know exactly the struggle you’re having with deciding! I’m 27 & I was diagnosed with chiari malformation type 1 7 years ago & wrongly diagnosed for 3 years before that. Surgeons told me surgery was the best option but I wasn’t ready. It took 7 years for me to be emotionally ready for this surgery.

I had my surgery 4 weeks ago & honestly it went way better than I expected (especially after ready about it online - scariest info you can read is online). They removed a 3cm x 3cm part of my skull, the boney arch over my C1 & part of my C2. They also put a dura patch with a new glue.

I was only in the hospital 2 nights. Walking the day after surgery. Pain was bad but not near as bad as I had thought it would be. I mean, we all deal with extreme pain on a daily basis, we can handle more than most! Don’t get me wrong, it’s still painful! It feels like your head is on boulders but eventually those boulders turns to pebbles.

Sorry this is such a long response!

I got my stitches out 10 days after surgery & 2 days later I had a CSF leak (scared me beyond measure!). Called one of my surgeons & she had me come to the hospital right away to get more stitches in the bottom of incision (yay! - not). But it wasn’t so bad, more scary than anything. Leak resolved on its own just like they said it would.

I just got the second set of stitches out 3 days ago & so far so good. The incision is pretty much all healed up. Biggest issue I’m having are muscle spasms. They are insane! When I’m cold they are crazy. The muscles will take the longest to heal. Just think, they were cut apart & stitches back together; they’re traumatized to put it lightly.

Again, sorry this is so long!

Some advice: take it easy. Everyone heals at different rates. Everyone’s cases are different. You will be very light headed & dizzy so be careful with walking/standing.
Also, don’t be afraid to ask for help. My fiancé had to bath me for a couple weeks & he’s still washing my hair for me. It’s not easy, it’s a long process.

Most importantly do it when you’re ready if you have the time.

Hope this helps some. Best of luck Nicola!

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Hey Jeremy how did your surgery go? Mine went well ( I think no ones told me😂)They got me out the hospital quick time like 5 days in clouding surgery day. I’m in a lot of pain still and no one has told me what I should or shouldn’t be doing or how long I should expect to be in pain for as it is now the headaches are worse then ever I can’t be on my feet for more then a few hours and then the pain in my head is that bad I have to go lie down. Hope your well xxx

Thank you I hope your well xx

Hey thank you for asking. My surgery was three weeks ago, little over, and I’d say I’m doing swell. I still have like a stiff neck though. They told me that not to bend or lift over 10 pounds for 6 weeks and not to do heavy lifting and manual labor for 3 months which is hurting the household for sure. My overall feeling of life went up tremendously. I use to just go day to day doing the same motions and hated ever minute of it. Made me not want to leave the house and now I can’t wait to leave, I’ve been more out and about this last week and a half and I feel like that had helped. I know it hurt being up too long, I took my first shower standing up today, but just make sure you take breaks. The more you get around I feel the faster you’ll recover, or at least seeing your progress will help too, make you feel like you’re coming a long way. Any improvement at all is still an improvement. Best of luck!