I had my surgery last year in August - I'm approaching the 1 year mark and I was wondering if people would mind sharing their recovery.
I ended up having to have the surgery as an emergency because the Chiari was causing me to stop breathing. I have Crest / Sjorgrens and Hashimotos so I have other stuff going on to it sometimes gets difficult to distinguish the differences. I really try to control my system by eating right.
I'm scheduled to have neck surgery in Sept - the Drs were hoping that taking the pressure off my spine would help. I have a lot of pain and numbness in neck and arms. I have tried just about everything to avoid the surgery but now I'm out of options.
My questions are:
1. How may of you that have had surgery still have the pressure on the back of your head? If it went away, how long after your surgery?
2. Does your eyes sometimes still bother you?
3. Do you still have the headaches and ear pain?
I consider my surgery a success as it has corrected my breathing issues [ I use a CPap machine at night to help] but I'm sometimes scared when the other symptoms come back. I have tried to talk to my Nuero but all he says is the surgery was a success and thats it. I'm not saying it wasnt I just want to know why I still have some of the symptom.
Thank you any comments or advice would be appreciated
I will try to see if I can answer, but a little background first to compare. I was decompressed on 10/1/12 after a 22 mm chiari was found. My primary problems were double vision and difficulty getting a full breath - this was what lead to my MRI and finding the Chiari. I've asked about connective tissue disorders but get brushed off - I know that my full spinal MRI found incidental "multiple tarlov cysts" however no one has talked to me about it. Anyways - I did go to a specialist neurosurgeon - they feel surgery was a success, however none of my symptoms really went away except less tingling in my head. I never really had headaches, but occasionally had head pressure sensations.
1. The pressure headaches went away for about a year after surgery. They have been back now for several months, more often than even before my surgery.
2. My eyes do bother me quite a bit. No change in them - they seemed to do a bit better for the first few weeks after surgery, but as soon as I went back to work, they got worse. I contribute them doing better at the time more so to rest.
But you also say you have Sjorgen's - could that be affecting your eyes as well?
3. I do not really have head aches or eye pain. If you have eye pain have you seen an ophthalmologist or neuro ophthalmologist?
I do have breathing issues as well, but more that seems like I can't get my diaphragm to work fully without effort and can't get a full breath. That is off and on but seems to improve with rest. But I do believe that other Chiarians have that type of breathing problems as well.
I, like you, have the same question. If surgery was a success, why do the symptoms continue? Is it permanent nerve damage? Or just Chiari itself?
Thank you so much for your replies - I'm so glad we have some where to go to ask these questions - I don't know what some of these Drs are thinking, they say a few things and than run away form me like I have the plague - I have had this with my autoimmune issues but now throwing the Chiari in the mix it so hard to find anyone who wants to treat you period.
I will keep digging and see what I find
And wouldn't you know last nigh I had a Chiari Apnea attack - omg I sure hope this problem does not come back :(