I'm new on here, so I guess I should start with a bit of backstory...I found out I had Chiari about a year ago, completely by accident. I had sinus surgery in November of 2011, and afterwards had problems with headaches and vertigo. After a visit to my ENT, a second opinion, third opinion, and a specialist, plus a couple of CAT scans, I was told there was no problem with my sinuses. But by the way, did I know I had Chiari? I had never even heard of Chiari, probably like most of you. My primary doctor then sent me to a nuerosurgeon, who ordered an MRI of my cervical and thoracic spine. The results showed that I have a partial blockage of the flow of spinal fluid, and my NS recommended surgery. He explained to me that it wasn't absolutely necessary at that point, but that there was the possibility of things getting worse, and that I would at least have to have periodic MRI's to monitor things. I opted to for the wait & watch approach, because the thought of surgery scared the crap outta me! I'm a single Mom of 3 young kids...what if something went wrong?
Now, I'm wondering if maybe I should go ahead with surgery. Over the past year my headaches have progressed to almost every day, I have vertigo that comes and goes every few days, severe neck/shoulder pain, random body pain, ringing in my ears, numbness/tingling in my hands and feet...the list goes on and on, and as a result, I spend much of every day in bed. I can't work, and dropped out of my college classes. I'm barely functioning, and this all makes my anxiety/depression (which I've had for years) much worse too.
I had another MRI last week, and saw my NS today for the results. He said nothing has changed on my MRI, but if my symptoms are worsening I should really consider the surgery. So far all the research I've done seems to be pretty evenly split between good results and no change (bad results). This seems like an impossible decision to make! Any advice from those you've been dealing with this longer? Why have you opted for decompression surgery, or steered clear of it?
Your NS gave you sound medical advice. You have asked a very difficult question. Only you can decide if your symptoms are altering your health & lifestyle to a point surgery is a necessity. I would love to know where you got those statistics. I do a lot of Chiari and Medical Research and I have never read anything 50/50.
To be totally honestly with you.....CM & symptoms do not get better without treatment. You have tried the watch and wait approach. I am sure you have tried medications. Chiari doesn't have a cure. The main treatment is surgery. It may relieve your symptoms, but the only thing any NS can assure you is they will remove the herniation and restore any blocked CSF
Please do not think I am being rude. I wish more than anyone post op CM symptoms would just disappear.
You have a major decision to make that no one can really make for you.
I would be happy to discuss post surgical symptom statistics with you or anything about CM.
Hey TracyZ. I don't have hard and fast statistics, just a rough guess based on reading other people's stories and experiences. I think what I'm really looking for is some assurance from people who've gone through surgery that it really does make things at least somewhat better. I know there is no cure, and no guarantees. But I'm at a place where I need...hope, I guess. I'm a single Mom, and my kids are 4,5 and 10, and spending most days in bed is not the way I want to raise them. At the same time, I am terrified of having the surgery. I have dealt with anxiety and depression my whole life, but am at the lowest point I've ever been before. I feel like I'm stuck in limbo, and don't know how to make a decision one way or the other. ANY advice, suggestions, statistics...anything...would be greatly appreciated! Thanks for taking the time to answer...
So I typed up this great reply and hit something and off to wonderland it went! grrr Long story short. No one can make that decision for you. What we can offer is to answer any question you might have to help you feel more comfortable in making the decision. There are some books that have been recommended that I would suggest that you read before surgery, I would tell you the names if I could remember anything. Most important of all make sure your Neurosurgeon is an expert in Chiari and even more important that you are comfortable with him/her. You may have to travel to find one, as I most likely will be doing but in the end I think it would be worth it. Tracy and Beeba have already given you some great advice and both of them have had extenuating circumstances with their surgeries. That's the tough part, none of us are exactly the same and none of us respond the same. So for me: LOTS of RESEARCH, PRAYER, diagnosis in WA state to get my husband on board. Good luck and please let me know if I can help in any way! You are not alone, the decision is yours but the support we can do and we can help to give you as much info as you need to hopefully make you more comfortable with your decision.
Like the other folks said..only you can make this decision...I just want to share my experience with you. I had so many Sx's that I was actually embarrassed to state them all, in fear they would send me to the local mental hospital!!
I had a herniated disk in my neck as well as a 5-6mm herniation ...my NS suggested he fix what was clearly wrong...do a fusion in my neck, wait 6 mths and see where my symptoms were then.
Had the neck fusion, waited 6 mths..still had many symptoms...went forward to have decompression surgery.
I am glad I had it done...though it took quite some time to see/feel the positive results. Do not get me wrong..the surgery was not a cure-all...I still struggle with balance and visual issues as well as pain..BUT..I must say I am better than I was!
Before I went ahead with the surgery I did get a 2nd opinion ..he agreed with my NS.
Good luck with this and pls let us know if there is anything we can do .
I was scared when I was diagnosed and didn't think I would ever be ok with surgery but as my symptoms progressed I saw my life getting smaller and smaller and smaller. Although I was still able to work i could work from home but had no energy for anything but that. No social life. I had to plan my trips to the store around if i was able to walk ok that day or ask for help. My irregular heartbeat got so bad at night i hoped and prayed I would wake up in the morning. Chiari made the decision for me. After surgery my irregular heartbeat is gone, many of my symptoms have improved and my world is getting bigger again. I would seriously consider moving forward. Just take alot of care and time to find the right surgeon for you and make sure you have help with your kids after surgery. It takes quite a while to recover and if you push it you can undo the good the surgery did. Good luck.