Surgery: What to Expect?

General
1

Hello All!

I went ahead and opted to have the decompression surgery and would love to hear from any of you that have had it, what I should expect after or what you experienced. I'm so scared, not even for the surgery, but that I won't wake up. I've never been afraid of that with surgery. The doc said a lot of brain patients have that fear. I was diagnosed in 2008 with Fibromyalgia, and only found out about this malformation 2 months ago, and even since i found out, my symptoms have gotten worse. I honestly wonder if getting viral 5ths disease in the winter (oh it was horrible!) didn't make my symptoms worse, or effected my brain in some way. I'm getting such bad pain on right back side of my head, just started going numb down arms (tingly). Have total brain fog moments and used to be a fast talker, but stumble over my words constantly, or have brain block...bad! It's all I can do to go to work; on the weekends my fatigue is a 12 on a 1-10 scale! I have no energy at all. It would be great for anyone to tell what you've experienced with symptoms, pain, and surgery....ESPECIALLY surgery. I'm so scared! Looking forward to any/all replies! :)

2

I am almost eight weeks post-op, and glad I have had the surgery. It has taken me what feels like a longish time to recover, but I am truly beginning to feel almost normal. I'm not talking normal pre-surgery, but healthy normal.
Believe it or not, the pain after surgery was actually less than I anticipated. I think in the hospital, the highest I got on the pain scale was a three or a four on a scale of one-to-ten. I was certainly stiff and weak and tired, but I just focused on getting through each day, knowing (from watching my son go through a similar surgery for an unrelated reason) that the next day would probably be better.
The other thing I worried about a lot was nausea post-op. I did have some of that the first day in the hospital, but after about 24 or 36 hours, they had that totally under control.
Ask your doctor in detail about what they will do for nausea and pain post-op. In hind-sight, I wish I had known two things.
First, in the hospital, I didn't understand that the painkillers they were offering me were two types. One acted very quickly, in two or three minutes, but wore off in about an hour or maybe even less. The other took almost 30 minutes to kick in, but lasted for four to six hours. I didn't get it. So, after taking the fast acting one, I'd be trying to gut it out, wondering why I was back in (a little bit of) pain again. So, figure out how long it is supposed to last, or have a spouse or partner or friend keep track of that with and for you.
Second, out of the hospital, I didn't really understand how important the muscle relaxants would be. I didn't feel that stiff, so thought I didn't need any! Wrong. I developed a monster headache about ten days post-op. After trying to treat it with just pain meds, I called the NS office. They helped me understand that for me at least, I still needed round-the-clock muscle relaxants and an anti-inflammatory to deal with the tension--the cause of the nasty headaches post-op. (I am almost off these drugs now, but not quite.)
It was also really tough for me to read my body, and know when I needed them. If I taper my dose, I feel fine for a few days, and then around day four, I would get headaches creeping back. Sadly, it took another four days at the higher dose to get the (mild) headaches back under control.
I consider myself a really lucky Chiari patient. I had very mild symptoms at the time my MRI revealed the Chiari, only noticing tingling and numbness in my left hand because the doctors asked about it. I opted for surgery, though, because a test called an EMG told us that my syrinx had been damaging the nerves on the left side of my body for at least five years. I had just been coping with it, however, not really noticing.
I hope that by having surgery now, I am preventing further damage. I was SO ready for surgery! During the three months between diagnosis and surgery, my health degraded noticeably. I was getting dizzy prior to surgery, and often refused to drive myself because I didn't feel right.
At any rate, I think fear is normal. I wish I could say, "Don't worry. There is nothing to be afraid of." I can't, because this is serious stuff. But if you trust your surgeon, you are doing a good thing for yourself. He (she?) is there to take care of you.
Keep us posted. We are all hear to listen, to help you think through things, to help you cope.
It sounds like you have a lot to gain. From what you describe, this is something you really are right to try.
Our thoughts are with you.

3

Your feelings are normal, don’t let them stop you from improving your life. I’m 9 weeks post- op with no regrets about surgery. Make sure your doctor has communicated to the nurses your pain management program. Once I was given muscle relaxers my pain was under control. Once you get home, be sure you have support, to keep your medications on track. You will need plenty of rest, so allow someone else to take care of you. I was able to work from home at two weeks, and return after four. I will admitt the fist week back was a challenge. You will improve each day, and on a bad day listen to your body.

4

I think I'm outside the norm on this surgery but it really wasn't that bad for me. The first week was painful but luckily I have a high pain tolerance. But I weaned myself off all the meds by the end of the 2nd week and after my 2 week follow-up I was back to doing almost everything! I still tried not to lift a lot, and I was still easily fatigued and by the 3rd week I was back at work full time (12 hour day for me with driving). I am 10 weeks post-op and I feel better than I have in 12 years!

5

thank you so much for your reply. It means a lot. I'm soo sooo scared and like you said, just with in this little amount of time of being diagnosed in June, my symptoms are getting worse. I know I need this, but biggest fear is not waking up. I'm so very scared of dying on the table. I've come to terms with the surgery, it's the anestetic or my breathing or something now going right. I'm just so scared and already suffering from anxiety/OCD & depression doesn't help any. I truly hope I'm doing the right thing and that I'll feel better once it's done. Thank you for your reply! It is very comforting.

WhatsForDinner said:

I am almost eight weeks post-op, and glad I have had the surgery. It has taken me what feels like a longish time to recover, but I am truly beginning to feel almost normal. I'm not talking normal pre-surgery, but healthy normal.
Believe it or not, the pain after surgery was actually less than I anticipated. I think in the hospital, the highest I got on the pain scale was a three or a four on a scale of one-to-ten. I was certainly stiff and weak and tired, but I just focused on getting through each day, knowing (from watching my son go through a similar surgery for an unrelated reason) that the next day would probably be better.
The other thing I worried about a lot was nausea post-op. I did have some of that the first day in the hospital, but after about 24 or 36 hours, they had that totally under control.
Ask your doctor in detail about what they will do for nausea and pain post-op. In hind-sight, I wish I had known two things.
First, in the hospital, I didn't understand that the painkillers they were offering me were two types. One acted very quickly, in two or three minutes, but wore off in about an hour or maybe even less. The other took almost 30 minutes to kick in, but lasted for four to six hours. I didn't get it. So, after taking the fast acting one, I'd be trying to gut it out, wondering why I was back in (a little bit of) pain again. So, figure out how long it is supposed to last, or have a spouse or partner or friend keep track of that with and for you.
Second, out of the hospital, I didn't really understand how important the muscle relaxants would be. I didn't feel that stiff, so thought I didn't need any! Wrong. I developed a monster headache about ten days post-op. After trying to treat it with just pain meds, I called the NS office. They helped me understand that for me at least, I still needed round-the-clock muscle relaxants and an anti-inflammatory to deal with the tension--the cause of the nasty headaches post-op. (I am almost off these drugs now, but not quite.)
It was also really tough for me to read my body, and know when I needed them. If I taper my dose, I feel fine for a few days, and then around day four, I would get headaches creeping back. Sadly, it took another four days at the higher dose to get the (mild) headaches back under control.
I consider myself a really lucky Chiari patient. I had very mild symptoms at the time my MRI revealed the Chiari, only noticing tingling and numbness in my left hand because the doctors asked about it. I opted for surgery, though, because a test called an EMG told us that my syrinx had been damaging the nerves on the left side of my body for at least five years. I had just been coping with it, however, not really noticing.
I hope that by having surgery now, I am preventing further damage. I was SO ready for surgery! During the three months between diagnosis and surgery, my health degraded noticeably. I was getting dizzy prior to surgery, and often refused to drive myself because I didn't feel right.
At any rate, I think fear is normal. I wish I could say, "Don't worry. There is nothing to be afraid of." I can't, because this is serious stuff. But if you trust your surgeon, you are doing a good thing for yourself. He (she?) is there to take care of you.
Keep us posted. We are all hear to listen, to help you think through things, to help you cope.
It sounds like you have a lot to gain. From what you describe, this is something you really are right to try.
Our thoughts are with you.

6

Becki thank you so much for your honesty! and like everyone else, I'm in the same boat I suppose. Saying you would still do it again means so much. I love this site and how helpful and honest everyone is being. Thank you Becki and I wish you many great things and fast healing !! Normal Life Here You Come!!

Becki Bowling said:

Not to put a negative spin on things but surgery was one of the hardest things I have ever been through. I really had no choice by the time I had it my symptoms were so bad. I was also terrified as you are. That is completely understandable. My pain was not well managed in the ICU. I usually have a very high tolerance for pain & I would put mine at a 10. My husband said I was screaming & he could hear me down the hall. Then I had complications & had to have a repair surgery when I was 3 1/2 weeks post op. Luckily that time I knew what I was facing so I made sure my NS was more on top of my pain management. It was much better controlled the 2nd time. I also had my husband keep the docs number in his phone in case he felt the nurses weren't paying atttention the way they should. All of this being said if I had to decide knowing what I know now I would do it again. Many of my symptoms are gone & I am slowly getting my life back. I could not have gone on the way I was. The NS said when he got in my head he found that mine was so bad I had only begun to show symptoms. I would have been disabled in no time. As it was I couldn't drive, had trouble speaking, and was afraid to walk without someone by me because I would fall all the time. I just started driving again this week (3 weeks post op from the repair). I don't stumble, I have no speech problems, I stopped twitching, the headaches are gone & I am planning to go back to work next week. It feels like a miracle to me.