Question for All Post Surgery Chiarians (Zipperheads)

Question to all of you who have had decompression surgery...

Was wondering if any of you had pain in your neck, shoulder and arm on either side of your body. I was told that my trapiezus (spelling) muscle is wasting and am having much stiffness and pain in my arm. Was told by another fellow Chiarian that had a similar surgery that she had the same issue and it was due to the cutting of the neck muscles during surgery. She also said that most post surgery Chiarians (Zipperheads) also suffer from this as well. My right shoulder looks as if it is dislocated, my arm feels very stiff all the way to the tips of my fingers and I have constant sorness as if the muscle has knots in it or have been lifting weights. I have lost lots of my range of motion in my arm and fing it to feel as if it were "stuck". Did or does anyone else have this and how are you dealing with the pain? I find the pain causes me to have a headache and feel sick to my stomache (or at least I think it is the pain in my arm). Any remedies or suggestions on how to deal with this?

Many Blessings and Much Love,



OMG! This is exactly what I deal with EVERYDAY! I wish there was a cure or remedy for this particular pain, but I have yet to find it! I am 3 yrs post-op and deal with this constantly. I don't know what to tell you or what to suggest to do for it. If you find something that works, please let me know. I have muscle relaxers, vicodin, massage, physical therapy, etc. None of it works for me!



Crystal and Carla,

I had 1 treatment with the physiatrist (sp) rehab doc..on that same area...under neath the shoulder blade, right??? He got under the blade and really worked on the muscle..he said it needed to be manually worked out..just that 1 time..helped a lot...PT's cannot use least up here in NY they can't...My doc uses Lidocaine to numb the area 1st..he didn't do that for me, b/c I was there for my hand/arm..RSD problem(s).

I just saw him yesterday for my mom...he used the Lidocaine ..and OMG..did he work on her lower back...just one side..he explained he wanted to see how she tolerated it after..b/c once the Lidocaine wore she is old!!LOL

Then after that he put on a "Russian Stimulator "...much like a TENS UNIT....

IMHO...I would seek out a Physiatrist (sp) rehab doc....He was right on the money with my arm/hand ...between diagnosing it and treating it with the Prednisone.....Sorry to say that I must go back on the Prednisone b/c of the LATEST week ago I fell and goofed up my rt. fracture....Yesterday was the 1st day my rehab doc saw it ..he took a few minutes looking at it, feeling it ect...and Dx 'd it as RSD...Reflex Symathetic Dystrophy. But the good thing is..he is treating it quickly...I did have good results from the steroid with the arm and hand....still hurts but nothing like b4....

He was so humble and said basically.."I am not sure why your injuries turn into RSD...I wonder if it has something to do with the malformation?" He calls Chiari.."the malformation"...

Sorry this is so long...but Crystal and Carla..I really think it is worth a shot trying to find a Physiatrist.

Love ya's,


i have a very similar issue mine didnt start tho however until i went for a 6 hr car ride (12 hr total) the josteling was too much which affected the neck and the left shoulder, to undeer the left pblade the left side of the neck mostly and the spine to mid back with this deep burning sensation...I have been in PT movement makes it qworse, message and manipulation of the neck and ever since depending on how i hld my head i lose sensation in my L fingers, hand and forearm- and even left me with weird numbness of facial muscles which to this day i have NO explaination for...

I have a tens unit and am on medication for the pain see pain management, I can not do very much at all with my left arm/hand. oh yeah i had steroid shots that did absolutely NOTHING to help me at all!!except hurt me more


I have not had the surgery yet. However, I will tell you that my left side of my body has been affected terribly, especially my shoulder, trapezoid and elbow. I've been suffering with this for a year now. My shoulder is frozen, I have 2 tears and my elbow is screwed up. It's all from the pressure my chiari has put on my neck. Thought and was told for the longest time that my shoulder was causing my neck and head pain. God forbid it could be the chiari. Doctors put their head in the sand for the longest time with this. They're now seeing things differently. I've had some PT with the TENS and that helps alot for me. Muscle relaxers are helpful, but make me too dopey. I need surgery, but all my doctors don't want to put thru it til I have my decomp surgery. They say it's too risky to have the shoulder done right now because of the chiari.

Now that I just rambled on about myself. I do hope you find relief and that your recovery will continue to get better. Only 5 days in the hsp? Is that the norm? How was it when you woke up after surgery? I'm very scared to have it, but know I need it. I have so many questions and so many fears.

All my best to you!

Love, Christine

Hello Crystal, I just had my surgery done May 26th and my shoulders and head have been giving me a fit. I think mine may come from the way that I was sleeping, so most of the night I’m up and unable to sleep. So I think it maybe be from the surgery because I never had this problem before.