Question for VNS patients: Should I be concerned?
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Hi all,
So, I've had both simple and complex partial seizure since I was 15 (wasn't diagnosed until I was 22). And it seems that I have grand mals at night. I wake up feeling like I have been beat up and often my shoulders are both dislocated. My shoulders are so bad now that they pop out really easily and hurt pretty much all the time. So, I went to see an orthopedic doctor last week and he said that they have dislocated so much that the ball of the shoulder has eroded and the only way to fix them is to have surgery and do a bone graft on the balls. Has anyone been through this? Does anyone have shoulder problems related to thier seizures? Thanks!
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I HAD THE SAME PROBLEM WITH MY RIGHT SHOULDER IN MY 20S. IT STARTED POPING OUT IF I JUST MOVED MY ARM JUST RIGHT. WHEN I WENT TO THE ORTHO, I TO WAS TOLD THAT I HAD ERODED IT. MY ORTHO PUT A PIN IN MY SHOULDER TO HOLD IT IN PLACE. I COULDNT MOVE IT FOR 6 WEEKS AFTER THE SURGERY, THEN I WENT THRU PT FOR NUMEROUS MONTHS. THEY TOLD ME I WOULD BE LUCKY TO GET 65-75% MOVEMENT BACK. I GOT 95% BACK. IT WAS A PAINFUL ROAD TO RECOVERY BUT WORTH IT. I AM 50 NOW AND EXCEPT FOR SOM ARTHRITIS IN IT NOW AND A FUNNY HOOK LOOKING PIN ON XRAYS, IT IS GREAT. NEVER HAS GONE OUT OF SOCKET AGAIN. EVEN WITH THE LAST 5 OR 6 YRS THAT I HAVE HAD OF CONSTANT TCS, IT STAYED IN PLACE. WHAT EVER THIS ORTHO DID WAS A GREAT FIX. NOW IF ONLY SOME ONE COULD MAKE MY LOWER BACK STOP HURTING!!
I TYPE IN CAPS FOR THE VISUALY IMPAIRED
GOD BLESS,
BANFFGIRL
LIFE IS FRAGILE, HANDLE WITH CARE.
My seizures have recently began giving me physical pain, my left shoulder hurts right now because I had a nocturnal seizure last night. Nocturnal seizures have only recently started for me, those are the ones that usually leave me in some type of pain. Being cold is a trigger for me, lately I've been having more seizures because I'm cold all the time. Is being cold all the time a symptom of Epilepsy, or is it just me?
Hello,
Well all I can say is my Dr. told me that I needed to get the seizures under care for a time before he would look at "fixing" my shoulder. It does happen to me as well usually during the night (Grand-mal). I then wake up feeling like I want to die because it has been seperated. My husband has gotten in the routine of things now where if I have a "Popping" noise as I am having one he just waits until I am done and simply rotates my arm back into place. He figures it probably hurts so badly but while I am in that frame of mind I cannot feel what he is doing. I really have to say Thank God for my husband! He has been right so far!
The reason I do not know what to do about "fixing" my shoulder is because the next question my Dr. did say was what if I did get them under control, fix my shoulder with the rods and screws that are needed and then have a seizure out of the blue again? This would probably end up tearing the shoulder.
I hope I could help in some items but you are not alone believe me. Anytime.
txsgirl
I have the same problem with my left shoulder. i never knew it was a common problem. It happens anytime I have a seizure and the tendons go lax and the joint dislocates. I have not gone to an ortho doc. I just minimize Range of motion, and my husband does know how to "pop it back in".....sad.....
I am a nurse, so I will ask an ortho doc at work about the surgery
Yeah, my orthopedic said the same thing about getting the seizures under control before fixing the shoulders. He also said that he just recently put artificial shoulders in 6 pts who had had thier shoulders repaired as mine would be 15 yrs ago (they were my age, 20s, when they had it done and they were seizure pts). So, it seems that even if they are under control, there is always the chance that it can come back. I don't know, it just really scares me that I could need an artificial shoulder when I'm 40. But they hurt so much all the time now that I need to have them fixed. It's just really frustrating. Well, thanks for letting me vent!
peace R.C.
hi
Yes I have or are having now although I did not go to the doc. thinking it was szs. that caused it .
I have bulging dics in my lower back that were assumed were caused at work BUT after not working AND having szs the problems got worse so it is most definatly related.
I have a "pulled" shoulder now from szs while sitting up and worse that I don,t beleive I have done before. when I was strapped in a bucket seat and had a sz. I pulled my hips and both shoulders out ??? I happened to have a broken foot and a cast at the time so it forced me to push down ??? i guess ??? forcing my hip out??
It pays to talk because will now take your ? to a doc. about my own "parts" Rick
peace R.C.