In desperate need of opinions please!

[burdzmom]

Hi Everyone. I have bounced around on this forum since my surgery for ACM in 2/2010. Ive been thru the battery of doctors and treatments and medications all to no avail. Currently, I am being seen at Jefferson Headache Center and am not thrilled with the direction my treatment has gone.
I was given the botox injections (31 needles) all over my head and down my neck (along my incision) and onto the tops of my shoulders. The explaination - that this was a procedure that was very successful in people that suffer from migraine.  Thats wonderful, but I dont suffer from the typical migraine. I have pain as a result of the ACM and the surgery that followed.  I have a boat load of ailments that I seem to be stuck with now since if crested the 18 month mark without any sign of them getting better.  So, i go along with the dr and allow the treatment, at this point I just want SOMETHING to work. Living your life and functioning at a 5-6 all the time gets to be really exhausting.
It was the worst thing I could have ever done!
Not only did my headaches not go away, my neck has been so screwed up since the injections that two different meds and a round of steroids later and Im still in tears nearly every day.  I physically is a painful struggle for me to hold up the weight of my head when ever I have to bend over. (like bathing my daughter, or pick up something off the ground) The pain is ridiculous. And along with that pain, strictly on my right side, I now have a bone chilling poping sound that happens when I can feel the muscle tension in my neck get so sore that I turn my head, a very loud poping or crunching sound happens, and the overwhelming pain that follows is often crippling. I just cry until I can breathe thru it.  I never had this poping crunching neck issue before the botox. He checks me out, actually witnesses a loud pop of my neck and the tears running down my face and says "OH MY GOSH ..... WOW"
ummmmm......yeah buddy. Thanks.
So he reccomends neck stretching exercises (seriously buddy........im sorry but WTH!?!??! im 2 years post op!!!! )and a neck collar for the time im and doing the activity that hurt my neck (huge eye roll here), and some flexeril and some other migraine med (florva i think)
I really am ready to pack my bags and find a new dr. I need at neurologist that deal specifically with ACM patients. This guys has patients but doesnt specialize in ACM.  Im beyond tired, annoyed, angry......... Im just done.

Does anyone have any input on the botox procedure or can reccomend a neurologist that treats patients post decompression or chiari??

[irislita]

I have exactely the same!!!! I update u if i get an answer.

[burdzmom]

the pain that I experience is always in the same area pretty much. There was a few times where i had some pain radiate into my ear and they did a nerve block that seemed to calm that down right away.
when my pain gets really bad, its strictly on my right side base of my head behind my ear and goes up my head  towards my eye. Ive had my pressure checked and my optic nerves - all are great.
Im guessing the popping is sscar tissue but i find it so odd that it never did it until after I got the injections. And it hurts like He**!!!
I got back over to JEFF to see my Neuro but her isnt a chiari specialist. I need to find a neurologist that specializes in chiari. My NS finished my surgery and pretty much pushed me out the door. I wasnt her problem any more so Ive been researching doctors all on my own ever since.
So frustrating. and exhausting.

[irislita]

I am so thankful for ur post.i am stuck in the same problem just on the left side.whatever includes moving or even tensing my neck a tiny bit will leave me in pain.its so horrible waking up like this and going to bed with the same problem.i am visiting a pain doctor the first time as i cant bear it anymore,but will definetly stay away from botox.may i ask the pain in ur neck does it go up to ur face also?i get ear pain and it goes up to my eye.i will talk to my ns soon as i also want to be checked for craniocervical instability.i wish u good luck and hope u find a specialist that knows how to deal with ur problems.

[Rahe28]

wow ...I am so so so sorry to hear that you are going through so much pain and missery. I wish that there was something I could suggest that would help. You will be in my thoughts and prayers, daily.

I have to agree with Selma here, from every case study and research that I have read, it does tend to lead toward craniocervical instability. Do you still have a NS/ chiari specialist? If not, maybe that is where you should start next. I know it is jsut so exhausting and tiring and annoying and the fight is beyond hard, but you have to get to the bottom of what is going on. 6 months ago, my pain specialist reccomended that I do the botox injections, now I am really glad that I decided against it. My best wishes for your well being and that you find some type of relief soon .

[selmaS]

  Hi...so sorry u r still having these issues...but something u said...[physically is a painful struggle for me to hold up the weight of my head ]

Makes me wonder if u have cerviocranial instability....it would explain the HA's and pain u r describing. Were u ever checked for ehlers-danlos?

  I wonder if that popping is from scar tissue?...did u do neck exercises post op?