I have suffered from headaches for years numbness in my arms and hands the symptoms go on & on. But does the surgery really work or will I regret it? And if I don’t do surgery will my symptoms get worse?
Hi there....
From what I have learned and personally experienced is that decompression surgery is not a cure..but a treatment....to help stop the progression of Chiari symptoms and also to help prevent getting a syrinx..fluid filled cyst on the spnal cord which has its own set of problem.
Once my symptoms became very apparent they worsened and I really think that if I did not have the operation I would be really bad off.
My NS said that for the best outcome...a patient with Chiari who is quickly Dx's and treated has a much better long term outcome...See, I had symptoms for years that I blew off as me being me....a klutz!! The head aches I chalked up to as being migraines...even the tingling and numbness in my arms and hands I blew off as being caused from a fall in 2002 in which I broke my left elbow and ended up needing surgery.
The list goes on...
Have you had a CINE MRI and a full spine MRI yet???
Good luck and keep us posted.
Peace,
Lori
I agree with Lori…it’s a treatment not a cure. I too had severe 19mm and even though I had a tough year long recovery (had surgery back in 2002) I would do it all again. I still deal with pain and issues from Chiari, but I couldn’t imagine where I’d be today without the surgery.
Only you can make this decision. I went to 4 different NS’s for opinions and 2 Neurologists…it’s not an easy decision . Good luck!
I totally agree with Lori and Mochico. Your symptons will only get worse and not to scare you but if you go too long without decompression it can be fatal. I apologize for being so bold. I just had a horrible experience beause I was almost diagnosed too late. Please know this is a Great Discussion Group. You can ask anything and know you will get the right answer. It amazes me daily how kind people are when they are dealing with a life altering illness.
We Will Be Here for You,
Tracy Z.
I had surgery 5 months ago and I can honestly say I have not felt this good in years. My symptoms were completing taking over my life pre surgery. My symptoms are gone and I have my life back. My recovery was extremely smooth. I had a 2 day hospital stay and was back to work part time at 4 weeks post op and full-time 6 weeks.
Dr Oro said the surgery has an 84% success rate. It’s a completely personal decision and I think you will know when something needs to be done.
Many blessings,
Diana
hi
my thing is how do you know unless you try!!!!!
it helped me,
if its left to long it can cause permament damage, it might help some problems it might not help others,
sometimes we have to face out fear to come out better on the other side
Diana, i am so glad i read your post. i have surgery in 9 days and i am so scared but i want my life back, i want to be able to work out and run my busy schedule and business without eating a bottle of pills every day. I am glad you got your life back and i cant wait to get mine back!!
Diana Smirl said:
I had surgery 5 months ago and I can honestly say I have not felt this good in years. My symptoms were completing taking over my life pre surgery. My symptoms are gone and I have my life back. My recovery was extremely smooth. I had a 2 day hospital stay and was back to work part time at 4 weeks post op and full-time 6 weeks.
Dr Oro said the surgery has an 84% success rate. It's a completely personal decision and I think you will know when something needs to be done.
Many blessings,
Diana
I also have a 24mm herniation. It's my understanding that it's not so much how large the herniation is but how much compression you have that gives you symptoms, usually over time. So basically some of us are terribly symptomatic at just a few mm and some of us feel okay at 24mm. I was essentially asymptomatic (I've always had headaches at the base of my head, thought I was clumsy, thought everyone's arms fell asleep and got tingly pretty often - but I was very functional and led a completely normal life) until age 28-29. I started getting vague signs that something was wrong and I just wasn't my normal self starting about Nov-Dec 2012. I pretty much crashed end of February, was diagnosed with a 24mm Chiari March 7th and had surgery on March 19th.
I chose surgery because I was very sick and scared and needed something to happen fast as I was gaining new symptoms almost daily. I was worried about symptoms going on so long they may be permanent and I was worried about more symptoms joining in further down the road. I'm 1 month post-op and the first 3 weeks of recovery was the hardest thing I've ever done (and I'm a pretty tough chick when it comes to pain and such). Last week, I finally started to feel like me again. My headaches are greatly decreased and I was starting to feel like a recovering surgical patient and less and less like a Chiari sufferer. Yesterday my incision swelled up and today it started leaking spinal fluid. Looks like I've developed a pseudomeningocele which is a relatively common complication of surgery. So I'm going back in to find out the next step tomorrow.
Even with that said, I'm still glad that I chose the surgery. As my neurosurgeon said, regardless of what you choose to do and what happens next, your brain is completely smushed and it needs room to be able to function. I'm not where I hoped I would be yet, but I'm learning that is the nature of this condition. Surgery was my first step, but it may not be my final step. I just have to see what comes next and deal with that accordingly. I do believe I would have continued to get worse without the surgery and I was virtually unable to function in the world, so I felt I had no other choice. The numbness and tingling that you are having, and possibly other symptoms could be due to a syrinx. If that is the case, surgery is definitely recommended sooner rather than later. My advise is to get checked for a syrinx (spinal MRI) and start asking questions, find a NS you trust, and start seriously talking and thinking about surgery. Like a lot of people have stated, surgery is not a cure. But I strongly believe it is a part of most of our treatments. Yes, you will read about complications and second, third, and fourth surgeries. You will read about people who got very little if any relief from surgery. You may even find sad stories of those who just got worse because of or despite surgery. Unfortunately that's the nature of our disease. You will also read great stories of recovery, but I have yet to find one that didn't include surgery.
Good luck in your decision and I truly hope you find some relief.