I have seen people ask about surgery. I see people doing a wait and see approach. And I have seen people say they have had a rough recovery. I have even seen people ask if surgery helped. But I am wondering? And it may help those trying to make the decision on what to do. Does anyone flat out regret doing surgery? Not that they didn’t get the exact result that they were hoping for(total relief of all symptoms- ahhh to dream) not a bad dr , so things weren’t good.Etc… Does anyone truly think they SHOULD NOT have had surgery?
dont regret it at all!!
.....what i do regret is my unforseen complications, and the continued hard recovery(i was decompressed in 09)
and doctors that still dont know what the H--- they are talking about!!
I do not regret my decision to have surgery, for me it was the right one.
Crystal
I didn't have an option to have decompression surgery. My CM diagnosis came one day & I was told if I didn't get to Pittsburgh ASAP I would become a Quadripledgic. I also had my cervical spine rebuilt while I had my CM Decompression & Crainectomy. I have major post op symptoms. It would be very hard for me to tell someone to have the surgery or not to have the surgery. I would advise them it is only a treatment to open up your spinal column and remove your Cerebellum, from blocking your spinal fluid. Decompression surgery is not a cure from CM & you may have more symptoms post surgical. There is a lot of factor involved that every patient should be made aware of.
I agree with the above posts. I was also told that surgery was the ONLY option at that point and without it I would become a quadriplegic. I do not regret it at all! Surgery is not a fix all, it just ensures that the ACM does not progress. Good luck!
I have the same question in regards to me daughter. If you gather enough info, let me know! Although every case is different, I too wonder how "most" people feel afterwards. Wonder all of the time...
I hesitate to answer this as everyone needs positive stories. Well if I knew back then, yrs ago, what I know today... I would have never had any chiari surgery. Having surgery changed the quality of my life forever. I thought I was sick before but never could have imagined the huge downfall my life would take beginning on the date of surgery more than 10yrs ago.
Adria,
I believe, in a post where someone asks a specific question it's best to answer honestly. The truth isn't always positive. Your post is great. I think if I could have seen into the future, I would have never had the surgeries. Even though my vertebrae were being pushed out of my spinal column from CSF blockage. I would have lived as long as I could. Then before I was fully paralyzed. I would have taken care of everything myself. That might be shocking. I just had the surgeries because I didn't want my husband & my 13 year old daughter taking care of or visiting a quadriplegic wife & mother. I never wanted to live like this. This is a very cruel illness. You are incredibly healthy & active and then at 31 yrs old....blam...it's all taken away. I have been left with a life of unbelievable complications & post op symptoms. The pain & headaches are the worst part for me. It is very hard to be positive all the time over such a dismal existence. I try to be so positive. I have had a headache for four days & hate the thought of going to the ER...once again.
adria said:
I hesitate to answer this as everyone needs positive stories. Well if I knew back then, yrs ago, what I know today... I would have never had any chiari surgery. Having surgery changed the quality of my life forever. I thought I was sick before but never could have imagined the huge downfall my life would take beginning on the date of surgery more than 10yrs ago.
Beeba,
I had no choice my herniation was 14mm and I was a shuffling stuttering mess by the time I was diagnosed. It was 2 weeks between diagnosis and surgery and it was only that long because at the time so few doctors did it and I had to find one. It helped with my crushing headaches and slurred speech and shuffeling. I have since gone down hill and needed to decide whether to have it done again. This time it is my choice and I am going to have it done. Only because I have found the right person to do it and I have to try something to try and improve my quality of life for me but also for my kids and husband. If I had not found the ns I have I don't think I would do it. She has also offered me no guarentees because my CSF has been blocked for so long. This time I go in with my eyes wide open and 11 years older and it is scary. I just don't want the surgery to make me worse. I am hoping for some improvement no matter how much I don't think I could bear it if it made me worse.
Wendy
Hi..
This is a great topic...thanks.
There are some days when I do regret it...then there are others when I am glad I went for it. Though, I really think I traded one Sx for another...meaning, my headaches are much better now..however , my legs are much more weak and painful...more so than 4 yrs ago b4 surgery.
I look at it this way, the surgery is the only treatmernt option other than managing symptoms with drugs, right? So, do you sit on your hands when you are offered an option or do you take it in the hopes of improving your quality of life? I took it and have no regrets with my decision. Do I wish my body had responded better to the surgery? Damn straight but that's the chance I took. I felt better for about 6-8 weeks and it was like one of those fantasy movies, a glimpse of what my life COULD be like. Didn't last, coulda been the painkillers and Valium (lol) for all I know, BUT...it was nice while it lasted. Wouldn't change it.