Chiari Online Support Group

Terrified for surgery

Hi all,

I’m new here and wanted to reach out for support, mostly because I’m so scared for surgery!

I was recently diagnosed after years of suffering, and three neurosurgeons have told me that 1. I need surgery and 2. it’s pretty much the only treatment option. This along with my symptoms makes me confident that it’s the right choice. But I’m still panicking about it. I’m first worried about the surgery itself and potential complications. I’m especially scared of dying in surgery, which I know they say is a risk in every surgery, but brain surgery seems particularly risky…then I’m worried about recovery. My doctors have told me I should be back to my life within 6 weeks, 2 months tops. But everything I’ve read online says otherwise.

I know people are more likely to post online if they have had bad experiences, but it’s pretty intimidating when I’m hoping to resume my life within 2 months and all I read are horror stories. I guess I’m kind of rethinking surgery…yeah it’s not fun to live with Chiari, but if recovery is anything like it seems to be from what I’ve read online, it might almost be better to just live with the symptoms. Can anyone offer insight here??

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I just had my decompression surgery on June 16 and I was terrified but I can help to ease your mind. It really wasn’t that bad after all was done. I’m 8 days post op and I can feel the difference in the pressure in my head. Yes it’s a long bumpy road but I definitely would do it again. Good luck hun. I will be praying for you and a healthy recovery :purple_heart::kissing_heart:

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Thanks for your reply :grin: I am really glad to hear you’re doing okay. Praying for your full recovery as well!!

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It looks worse than it is hun. Yes it’s Painful but they will give you plenty of pain meds and muscle relaxers. Us chiarians are very :muscle: strong people and I believe in my heart that you are going to do great. Good luck :kissing_heart::purple_heart::innocent:

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I also had my hair shaved a few days before surgery and the surgeon told me thanks and that’s​exactly how he would have done it… just a tip.

Hey melody! im 6 months post op and had similar fears as you.I am from Australia and in this country there is very little experience with this particular disease anywhere.There is a fair bit of risk involved and I to had terrible anxietybefore my op my face blew up swollen I had terrible stress acne etc.Everyone who went through a bad experience has there own little horror story but that is there own reality and you will probably experience things way different I know I did.Your journey through this disease is yours your pain threshold is higher or lower for example one of my “chiari” friends told me I would be fine and be ok within 6 weeks well! she was dead wrong I was in hospital for a month with meningitis (brain infection) 3 csf leaks and a lumbar drain oh and on top of the meningitis I got a superficial infection on the wound site that would not heal.Anyways what Im trying to say is even in the most horrible situation and the most horrific circumstances I know one things for sure I made it through and I am OK im 6 months into my recovery and your feelings are perfectly rational and its ok to be scared.All I can say is the risk is worth it! and your quality of life may or may not improve but its toally worth it because now I can belly laugh! with out pain!.We all experience things differently but what helped me is asking as many! questions as possible,and it also takes a lot of trust and faith that the doctors know what they are doing.All I can say from my experiences The surgery is worth it.My aunt has chiari and she lives with it she is now to old for surgery the risk is greater for her and the pain medication she is on is really hurting her body.Also the pain she is in makes her extremely grumpy and miserable she often says to me if I had of known about this disease years ago I would have had the surgery.I hope things get easier.I could honestly tell you I hated “living” with my disease on pain medication for 3 years genrally if you are otherwise healthy apart from chiari it lessons your chances of death.Also I asked my surgeon “what are the chances of me dying in my op” he said ''you have more chance of walking outside and getting hit by a car than you do dying in surgery".Its a very controlled,planned situation and the medical team know how to respond if something goes wrong.Its just a matter of trust.

Hi there:

Being terrified is pretty common. The fact the you have been to three neurosurgeons tells me that you have been doing your homework.

I am a Chiarian 13 years post op. There is life after surgery. I live a pretty normal life. Moving to Phoenix also helped.

Here are a few thoughts:

  • the experience of your selected neurosurgeon is key. Research him or her thoroughly and talk to actual patients who have had surgery with your doc.

  • if you need to go to a different state or special clinic to get your surgery, do it. A bad doc (or an experimental one) is going to cause you worse pain than you need. Raise money on gofundme if you are struggling with insurance

  • how old are you? Your age will be factor in your recovery. The younger you are the better and easier to get back to normal life.

  • your surgeons’ promise of 2 months recovery is questionable. You will recover on your own body’s terms. Again. The younger you are the better, and the better support system you have the better. Do NOT try to return to normal life before you are ready. Have someone available to help vacuum, pick things off the floor, carry groceries, etc.

  • I was 35 when I had my surgery. I was symptomatic for 18 months prior. It was very difficult to recover fully. But yes after two months I felt okay and thought I could get back to same routine. I got back to lifting weights too soon and injured myself.

  • over the years, I have found that I need to sleep on a particular side, rest and / or heat my head with a heating pad, and stay out of cold and wet environments. I also stay very active with low-impact t aerobic activity (stairmaster while holding my body straight, biking,etc.). Looking down sucks and makes my dizzy, as does trying to pick up big laundry buckets or doing full-fledged grocery shopping. I shop every day and carry back what I buy on my bike. I do no weight lifting whatsoever. If I wash the floor, I stand up and walk for a bit after. You too will find the little life adjustments you need to make to live normally after surgery. I am probably the poster girl for surgery success. Nobody I mean has any idea that I have this condition.

After a few weeks, I felt better. But
It took me a full year to feel normal. And then I learned different things to not reinjure myself and continue to feel good. I take no meds.

You will have your own stuff. But, having surgery was the best thing I ever did. But I’m not sure it would have been if I went to one of the other neurosurgeons I saw but did not select. Check out your doc thoroughly. You will not die of chiari. If you need to spend 3, 4, or 6 more weeks making sure you have the greatest doc, do it. A delay, while tiring to you, will not change your outcome.

For what it’s worth, my doc was John Ruge in Chicago. There are some great docs in NY, and one named peter nakaji in Phoenix.

If you have a good doc, yes, you’ll feel better in a few weeks, be back to normal stuff in 4-6 months, and feel pretty great in a year.

Please be careful picking your doc.

You didn’t mention what your symptoms are, but when you talk with previous patients compare notes and consider age.

Herniation lengths mean zero.

Hi all,
thank you so much for your kind responses. I do feel better, though still worried. My surgery is next week. I am 25 and as confident in my neurosurgeon as I can be.
I get bad headaches, that’s my major complaint. Also have various digestive issues, which it’s unclear if it’s related or not. I’m also fatigued and get feeling faint a lot. I do think surgery is my best option at this point, but am very afraid.