United Brachial Plexus Network, Inc.

This is my first post here so forgive me if I fail to make complete sense.
As backround my wife had surgery 12-99 and in recovery complained about pain in her shoulder she was told not to worry that that was very common yada,yada,yada. The pain never did go away it just grew daily, scapula(SP?)winging, and intense pain under her collar bone and down her right arm to her finger tip. So we went from doctor to doctor ending up at a specialist that did an EMG and told her she had a BPI.He never said weather it was torn or intrapment just damaged. He then sent us to a nerologist(sp?)who told us it was dystonia. We have been told its a BPI by two doctors, RSD by a 2 pain management guys, Dystonia by another doctor. the pain management guy has gone thru the botox, methodone,meds, and a DCS and now he wants to pull the stimulator and put in one with 2 leads.
Some things have helped short term but the pain is always there at some level. I dont really know what to do. She was a very strong person and now she seems to have lost hope. I understand that its not uncommon to have some or all the above conditions with a BPI but you really get the feeling after a while that these guys all want to sell you somthing and the treatment they recommend depends on what they have to sell. My wife is now having problems swollowing and her neck is also in pain most of the time. what do you guys think, other than I can't spell. Feedback from somone who has gone down the same road would be helpfull. Thank you all,God bless.

Hi Jim, Im sorry to hear about your wife! i would get her to see a BPI specialist ASAP especially beofrey ou have some thing implanted in her! Pain is more than normal for those of us with the injury! I live with it daily! SOme days are worse and I love the better days but its a fact of life! My pain will NEVER go away! Check here http://ubpn.org/medicalresources/ and look for a doctor who treats adults with traumatic injuries. Good luck!!

COurt

Jim I forgot to add... my physiatrist seems to think that I ahve RSD on top of my BPI. I have heard others say the same... hopefully someone else can be of more help than I can.

COurt

i'm very sorry to hear about your wife's struggle. i have a ltbpi and i also have rsd in l arm & hand. it took they over 4 years to diagnose me with rsd. i had a similar problem, no one could tell me what was going on.

i ended up going to see an rsd specialist, a doc who medically manages rsd. i suggest that you do the same to see if that is what she really does have. what area are you from? check out www.rsds.org and www.rsdhope.org. my doc is dr knobler of the kind clinic in fort washington pa. i have never felt better.

all the best of luck, you'll be in my thoughts,
gillian

hi courtney
if you have any questions about rsd let me know. i've had a crash course in it during the past year. i hope that you do not have it.
in my thoughts, IM me sometime at Danzia.
Gillian

Hi Jim,
My heart goes out to you and your wife. This kind of pain can wreck and change one's understanding of what life about. I have a BPI in my right chest, shoulder, and arm. And the pain has been the last stages of my battle to understand and deal with my injury. This past spring I spent two months in a pain clinic at Stanford University going 5 days/week from 10-4 each day. The best outcome was the education that was drilled in, and meeting folks that have learned to live with circumstances they wouldn't wish on anyone. The isolation pain can set you into can compound the situation and drive you towards severe depression (which in turn sensitizes and increases one's relationship with pain) . Which was the case with about 80% of the patients there.

The main reason I'm responding, is that you wife's situation sounds very similar to a about 4 or 5 of the ladies at this pain clinic. Some had stretched their Brachial Plexus during a fall or their arm was pulled extremely hard and another 2 had Thoracic Outlet Syndrome(TOS). TOS can be caused by impingement of the BP nerves by the Clavicle (collar bone) & 1st rib.

I don't know what event initiated your wife's pain or what kind of surgery she had, so it's to difficult to give any real comparisons. But two women had TOS and the description you gave of the pain sounds very similar. It took both of these ladies a good long while to get a proper diagnoses and they both had RSD as well, which can be caused or onset by surgery or some kind of trauma. The best cure for them (and the rest of us) was the 2 hours/day of physical therapy (using the effected area as opposed to guarding it) and the meditation class (which simply teach you to reset your stress levels back down to zero, and stress is directly linked to one's pain).

Simply put, learning how to redirect one's attention while staying relaxed and continuing on with life are what all research and exerienced BPIs are pointing to as the best drug/surgery free solution at hand.

Dr. Steven Feinberg, Faculty and TOS Surgeon at Stanford, thinks surgery on someone w/RSD can multi the pain problem. He stated he would feel comfortable performing TOS surgery on a very small percent of patients w/RSD. So please check in w/qualified Pain Specialists before your wife considers any more surgery.

Below is a recently published study, 12/05, from Stanford which looks into mind control (building/training your mental muscles) and it's effects over pain. W/practice and bio-feedback using a functional real-time MRI of patients brains, patients were able to reduce there own experience of pain up to 64%. They are currently looking for volunteers in a larger form of the same study...


http://paincenter.stanford.edu/research ... study.html

------------------------

a list of all current research at Stanford's Pain Clinic...

http://paincenter.stanford.edu/research ... udies.html


Best of Luck,
Christopher

RSD VS BPI
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Thank you all for the kind words and the sound advice.
It feels awkward to speak of Kelly’s situation as if I have a true understanding of her daily struggles. Truth is I really have no more of an understanding than that of a concerned observer. As all of you pain is deeply personal, and by its very nature can never be truly expressed to others. The courage and fortitude that must be summoned daily by both Kelly and all of you on this board is amazing to me.
Kelly’s BPI injury occurred during a hysterectomy (she was 37 at the time), as best we can tell the injury came either as a placement injury or when she was being transported. The hospital and her surgeon both did a fine job of covering up their mistakes, files removed, notes and odd notations added. We will never know what happened and that maybe just as well.
Since her injury came at the hands of healers and the subsequent mistruths and out right lies, you could say our trust of the medical profession is guarded.
Christopher it’s interesting that you brought up Stanford, because the doctor from the Cleveland clinic that did a second opinion for us specifically pertaining to the RSD and the appropriateness of the first DCS is now on staff at Stanford.
Dr Henderson is the only doctor I have come across that seems to have a real passion for his work. I was going to contact Dr. Henderson soon and ask for his advice and thoughts about coming off the pain meds. It seems the cruelest cut of all is that when chronic pain survivors get fed up with the drugs, they must go thru the hellish nightmare of withdraw.
For the past few months I was feeling good about the progress Kelly was making. She was more positive than she had been for a while; she drove her car, for time first time in years.
The realization that she would never really have her life back as long as she was burdened with a drug induced intellectual haze prompted Kelly to start self medicating in reverse by reducing her daily dose (from 90mg per day of Methadone to less than 30). (no soma and no klonapen)(sp?) Kelly being an A+ type person may have gone to far to fast and I’m afraid the stress from a rapid unsupervised reduction in her meds may set her back months if not more. She is going to go back up to 50 mg per day until she can find someone that will help her do this as part of a total rehabilitation program
I am going to contact Stanford this week. I went to their web page and it looks like they are doing wonderful things with rehabilitation both physically and emotionally.
We live in Louisville, Ky this area has many top notch doctors (cancer and cardio factories) unfortunately none of them seem to know cr@p about BPI, we also have a huge sports rehabilitation clinic in town that brings in athletes from the world over for sports injury but not one physical therapist that specializes or has done work in RSD.
The reply’s to my post meant quite a lot to both me and Kelly; we will keep you up to date with our progress.
Thank you all and God Bless

Hey Jim, I had my first op in Lousiville with Dr. Thomas WOlff. http://www.kleinertkutz.com/tww.htm I would highly advise you to check into him. When I Had surgery he was just getting into BPI the last few years before. Its definitly a local doc that DOES know baout BPI. Good luck and let us know!

COurt