United Brachial Plexus Network, Inc.

Hello every one my name is George,
i became injured on jan 18. My Dr had said i had a C-4 avulsion and that the c-5 - t1 were stretched. He said 90% of the time people don't operate. This concerned me as any one who has looked through these forums see that surgery is not uncommon. In the beginning i really had no movement. I have done therapy with stim MWF for the past six months. Today i can almost make a complete fist, my pinky can extend but not close all the way, my ring can do both, my thumb index and middle can close, my pinky and ring have hypersensitivity, while the others are numb. I have extension in my arm but no flection. In therapy i use a hand and arm skateboard which i am able to do "WAX ON, WAX OFF" motions in large wide circles. In a pool i can lift my arm up in front of me extremely slowly about 4 or 5 inches. This allows be to believe i am getting some return but i dont want to trick myself into believing im on track. As one thats injured you do alot of research online, the problem that exists is that you want someone thats has cred for doing the right things for patients at the right time. Im not looking for a TV lawyer DR if you get what im saying and there is no way for me to distinguish that online. I know people say that you have better chances of recovering with stretched nerves but i dont want to leave it at that. I want to looking for what may be my best option in TX. Also incase anyone was interested i found a site where there may be more supportive arm braces than just a good ole sling, http://supports4less.com/bodyparts/shoulder/ I figure this may help some one as it helped me to have more comfort and support. If any one can toss me some advice or help please dont hesitate, It would be much appreciated. also i had forgot to mention that i had a emg done and the damage seems to be a shoulder level.

Hi George,

I'm not familiar with any specific providers in Texas (I went to Mayo in MN), but the consistent message you'll hear from folks here is to find someone who specializes in BP injuries specifically. My ortho surgeon was keen enough to see that I had a BP injury but did not have the background to treat it, which is why I was referred elsewhere.

Best,
MW

Thanks MW ill see if an ortho guy may be able to point me in the right direction. Also in case any one is interested i just posted a vid online of my progress feel free to comment on it as well. http://www.youtube.com/watch?v=1SSAaKjloz8
thanks guys

At the approximate 5 month post-injury stage, isn't your doctor quite pleased with your progress so far?

I'm assuming that the movement you have at the moment is recovered since your injury.

Howdy Partners> Please put in DOC NATH as a search on web. HE IS BIG TIME- TBPI,ETC GUY, For real and he is in TX_ SAW his work in Chicago , He travel to other states to! Maybe a Source for doctors in other areas?????? MAYBE???

Please BUG YOUR DOCTOR more THEY NEED TO GIve you A REFERRAL even for PAIN its a most !!! I have read this many times in POST over time about doctors and lack of direction and have seen way to many Doctors , Driving a 18 wheeler is a contact sport. Funny thing is NO doctor ever gave me any hope for my ERBS ever or a referral:shock: Please get a referral from the DOC that treating You. LEAVING you off a cliff with NO DIRECTION , That just WRONG!!!! and .

WHAT amazing here is what you can find out from so MANY ,So much STUFF !!!! and treatment and WHAT EVERS_ ITS GREAT!!! Is there a book as a CAN get direction for newly in-juried of birth injuries to ?? ITS all about direction, I think than DI-SPARER LIVE that life To

MR POSITIVE FOREVER, BY experience not treatment

The best thing you could do is get to the Mayo Clinic. I went and had to pay for it myself. I have since found a Dr. Here in NC that is excellent that the Mayo tried to bring on board (His name is Dr. Li at Baptist Hospital of Wake Forest University). The problem with waiting too long is you have that 8 month window for a successful nerve transfer (some even say 6 month window). If indeed it is stretched, obviously you will eventually heal and retain a good among of your arm strength. If it by chance avulsed and you do nothing....you could pass that window of opportunity for the nerve transfer. I did the transfer and have movement in my left arm that was paralyzed for over a year. I do not have full strength by any means, but I do have strength...and I have learned to live with it fairly good. It cost me around $4000 dollars for the mayo clinic trip....but it was worth it.

I wish you the best. Let me know if there is anything i can do to help you any more along the way.

Jeff Jones

Awesome guys!!! thank yall for your input. It helps to here from others that have an inside scoop! I will see what i can do. Plus if possible ide like to hear more details about exactly how you recovered, like at what point you saw what and when you felt the biceps twitch the way you wanted.

hi i flew frm from ny to texas a month ago n had surgery his name is dr armenta n he is n houston texas.... texasbpi.com hope tht helps !

hilltopfwb wrote:The best thing you could do is get to the Mayo Clinic. I went and had to pay for it myself. I have since found a Dr. Here in NC that is excellent that the Mayo tried to bring on board (His name is Dr. Li at Baptist Hospital of Wake Forest University). The problem with waiting too long is you have that 8 month window for a successful nerve transfer (some even say 6 month window). If indeed it is stretched, obviously you will eventually heal and retain a good among of your arm strength. If it by chance avulsed and you do nothing....you could pass that window of opportunity for the nerve transfer. I did the transfer and have movement in my left arm that was paralyzed for over a year. I do not have full strength by any means, but I do have strength...and I have learned to live with it fairly good. It cost me around $4000 dollars for the mayo clinic trip....but it was worth it.

I wish you the best. Let me know if there is anything i can do to help you any more along the way.

Jeff Jones

Jeff,
While I absolutely agree that the Mayo is one of the nations (and the worlds) top TBPI facilities, there are many very qualified specialists outside of the US (and with in the US) that would argue that the science proves different on what you have stated above in regards to surgery time frame. I only mention this, because people rely on these forums for life changing procedures and I hate to steer them wrong.

In the UK they are preforming surgery with in days of injury and having maximum benefit of return considering the specifics of individual case nerve damage. Waiting over 6 months is OLD neurosurgery thinking established over 25 years ago. While one can still have positive return waiting that long, it is not always the best option. Please don't help propagate this myth. While "waiting" to see what can be restored naturally can be crucial in some cases (because the risk of operation on microscopic nerves in severely traumatized & scarred tissue is out weighed by the benefit of natural healing), this is not always and is seldom the case in severe injuries.

Time is of the essence. 6 months is pushing the time frame by international standards. There is plenty of data to back up what I am saying. If anyone is interested, just google it.

This is the very reason why after 8 years I am still on this forum. Misinformation is deadly in the medical field. Even if your neurosurgeon "says so" make sure they are correct. Advancement in neurosurgery is unfortunately extremely slow with this injury, for many reasons.

I wish you all the very best, and by no means want to inhibit communication and dissemination of good information. We need each other, with out this forum many people remain paralyzed and untreated or improperly treated.

Best,
Christopher

PS anyone curious about what I'm taking about in terms of progress of information should read this web post by one of the world's top neuro-specialists/researchers:

http://sci.rutgers.edu/forum/showthread.php?t=116651

Originally Posted by Wise Young
EDIT...
...EDIT

Finally, I want to point out that Martin himself will not be doing surgery on patients. There is much confusion about what a scientist does and a clinician does. The surgery has to be done by a neurosurgeon. The block is at the translation step. Part of the problem that you refer to is not a problem with scientists not doing their work. The problem is that there is no method of translating basic science into clinical practice. There are too few neurosurgeons who are committed, who keep up with the research, and who are willing to spend the time and risk to move such techniques into the clinic. At least in the United States, there is almost no incentive for a neurosurgeon to do anything new and a lot of disincentives for the neurosurgeons to do anything risky. I am spending a lot of time bring individual surgeons and rehabilitation doctors to China, for example, to show them. Many won't believe until they see with their own eyes.

A lot of this should change as we get more clinical trials going in the United States. We have had so few clinical trials in the United States over the past decade that doctors get use to practicing without clinical trials. In short, we have just created another generation of doctors who are not used to spinal cord injury clinical trials.

Wise.

http://sci.rutgers.edu/forum/showpost.p ... stcount=13

Advancing surgical practice is even slower than drugs or other types of therapies. This is because it must be taught, often person-to-person, in the operating rooms. That is one of the reasons why peripheral nerve bridging has not caught on yet in the United States. It is because so few neurosurgeons were trained to do such nerve grafts.

Please understand that I was Director of Neurosurgery Research at NYU/Bellevue Medical Center for 20 years. During that period, most of the residents spent time in my laboratory. But, in the end, after spending 20 years trying to change neurosurgical practice, I realized that I was not having much impact on neurosurgery of spinal cord injury.

Even in China, dissemination of surgical procedures is very slow and frustrating. So, for example, while there are individual surgeons with very substantial experience using peripheral nerves to graft one part of the nervous system to another, it is not yet practiced widely. Surgical techniques are being taught one-on-one in an apprentice-style approach.

One of the most important functions of the ChinaSCINet is that it has gotten many of the surgeons who do spinal surgery together in regular workshops and meetings. I believe that this has markedly speeded up transfer of surgical approaches from center to center. Since 2004, for example, three other centers besides Hongyun Huang's group, had tried OEG cells.

Having a network disseminate the treatment techniques is one of the most efficient ways of advancing surgical practices.

Wise.

So DOC,
Repairs to nerves has to be in a window of time and I should of seen you sooner . Facts are FACTS But wait , When I was 10, doctors told me they could not operate or do any thing else for my ERBS Like a few years ago I found this sight and found posting for treatment. Facts are Facts , THEY are not hammed in stone, I think by experience. You will find new treatments over time or you will adapt like so many posting SHOW Time changes and treatments do to What scares me is the Anxiety you get from doctors statements and What they do to you emotional over a life time Determination to try is a great thing to have. Ever one here has determination to try , Determination grows over time , by fact to over time I stay Positive by fact of experance and not just Hope, you guys have a bright future , but it does take time by fact to

Tom