United Brachial Plexus Network, Inc.

Hello everyone,
My son and I went to his drs appointment on yesterday. This dr is suppose to be the best in our area an orthapedic surgeon. Well first of all he has very little "bedside" manner!! His first comment to Jay was that our "best guess" is that you have lost all use of your arm. He did not examine him at all. He also told Jay that "if he was a girl that he would recommend him going to Mayo clinic to get some use of the arm, but since he is a guy he can just learn to deal with it. Maybe on down the road we will get him a hook or something." I told him that we had already been in contact with the Mayo clinic and he said yeah I understand, but he had seen patients that had been cut up one side and down the other and even after two or three years they had very little movement in the arm so he was just wondering is it really worth it. I do beleive that drs are suppose to encourage rather than discourage...right? Isn't some movement/function better than none? Can anyone believe this? We left that appointment with a new sense of purpose and I am so proud of my son because he said, "mama he didn't tell me anything I haven't heard before, I guess our summer vacation will be spent in Minnesota". I said way to go son! If this has happend to anyone else please let me know. I would like to know how did you handle it? Oh yeah he also said that because Jay is not in any pain he feels sure that he has pulled the nerves from the spinal cord and I told him in all of my research a complete avulsion consists of excruating pain. His response, well he probably has one good nerve and its so beat up its not functioning properly!!!!!

Hi Rosaline,

We just spoke - and that story is just WILD. It's hard to believe a doctor would be that insensitive. I'm of course thrilled you're pursuing the appointment with Mayo! You still might want to see about scheduling something with Belzburg in the event he has an opening sooner, since he can offer the same surgical options as Mayo & they respect each other.

Take care,

Ellen

When Dustin was in the hospital after his accident one of the Physiatrists told us a similar thing. When we said we had heard of people who have gotten some funtion of the arm with surgery (yup they were all the wonderful people on here), he said, Well they cut you all up and there is no guarantee that you will see results. I'm looking at my son who by then was covered in scars from the surgeries and procedures following the accident and thinking what difference will more scars be if you have use of the arm. Bet the answer would be different if it was their child with this injury. Dustin does not have any pain either, which seem to be unusual for this injury. Dustin has no avulsions or tears, so I kind of think along your lines, that people with the avulsions are having worse pain. However, this does not mean he may not have pain in the future, I am just thankful he doesn't now. You definately need to see a specialist in the BPI field to get better answeres, others just don't seem to be able to admit they have No Clue on this injury.
Sue

Thanks for all the support. We just came from the physical therapist and he is very encouraged. When he put the e-stem on Jay he was able to move his arm at the elbow and had tingling in the fingers. I am confiedent that we are staying with our decision to go to the Mayo clinic. I am just glad to know that I am not the only one who dosen't think that the drs are always right.

Sue can you give me a little more information on your son? Has he had surgery? If so how did it go?

Ellen, I have told you how wonderful you are. I just want thank you for listening and allowing me to vent my frustrations.

Rosaline

Rosaline,
My daughter and I had a similar reaction to a doctor soon after she found out that all 5 of her brachial plexus nerves were "probably" avulsed. The neurosurgeon told us she might want to think about amputation. This was at out first appt. since getting out of almost 6 weeks in the hospital. She was already so "cut up" from all the surgeries to correct the other trauma to her body. This was a 20 year old girl who took great pride in her appearance. To make a long story short, we got our thoughts together (and our emotions) and headed off to Mayo. She had multiple surgeries there with successful results. She is able to flex and extend her elbow and is able to carry and grasp small objects with her affected hand. More importantly to her is that her arm looks so much better. The scars are fading and she is very happy with all that the Mayo team has done for her. Good luck with your trip - I know you will be pleased too. Sue (mom of Melanie - rtbpi).

I'm so sorry about your experience. Ours was simliar. My husband was released from the emergency room with an uncasted borken hand and told to see an orthopedic the next day to have it casted. He was told in the ER that the tissue in his shoulder was just swollen and his arm would be fine. The following day the orthopedic told us about TBPI and told him it would get better or it wouldn't, there was nothing that could be done and he shouldn't have been riding a dirtbike in the first place. Needless to say we were in total shock and my husband went into an emotional tailspin that last a good 3 weeks. We then saw another dr who was able to explain the injury better and told us it would probably get better on it's own and if not they would do a nerve graft and he would be just fine and not know the difference- while his bedside manner was better, his false sense of optimism was just as damaging in the long run. Dr. number three told us his arm would never get better and there was nothing that could be done, and wasn't kind about it. At that point we made the treck to Mayo and finally felt like we were talking to doctors that truly understood, could explain things well, were positive, but also realistic about his recovery. I'm so thankful for that entire team and clinic for so much more than just their medical expertise, they really have amazing interpersonal skills with patients as well. we finally felt as though we experiencing medical care as it should be.

Rosaline,
Dustin's accident was 11/2/05. We took him to Mayo after finding this site. I think we went in March the first time. Then back in May, at that time they did do surgery because of the time frame. His arm was improving but if they needed to do a nerve graph 6 mos is getting to the outer limit. So, he was prepped for a nerve transfer but when they got in there they found nothing was avulsed and felt that "natural" healing would be best. He had been making slow progress. At this time they did remove scar tissue. We returned on 2 or 3 occasions to have the gracilis transfer, but they kept wanting to wait until he was not making any more progress. The last time we went they decided he had made enough progress for a muscle transfer where they would take the muscles just below the elbow and move them above to get flexion. However with this procedure they are moving the muscle between the nerves below the elbow and there is a chance to lose hand funtion. Since he does have hand he decided not to do it. The drs assured him that muscle transfers can be done at anytime so now he is just putting it on the back burner. HIs arm has gained a lot since the accident but he doesn't have much bicept. Well it's there just not strong enought to bend against gravity. We keep coming up with new contraptions to try to get over the hump. He seems so close.

I'm sure Ellen can tell you more than I. She was wonderful to hear from when we needed to make these decisions. You can't go wrong to at least be seen by Mayo.
Sue

Bensmom put it very well, that was how we felt too. They did tell us that Dustin would not be 100% but that he should be able to have function. That was all we hoped for. His was a terrible accident and I was not surprised at all that he would not have full function.


Message was edited by: ptrefam

Hi Rosaline!

I had a motorcycle accident when I was 22. BPI in right arm. Let me tell you I went thru the same experiences: stupid doctors, etc. I know how frustrating it most be for you to hear all those coments from the Dr. But you know, this should be more encouraging for Jay! just like when they said Lance Armstrong would never be able to ride a bicycle, or have kids! he wont the Tour de France 7 TIMES!! beat cancer, and had children!
So, tell Jay to be strong, dont pay attention to those coments!! Hang in there!! Always be positive!

Gunnar
Mexico.

Hi Gunnar,

You mentioned Lance Armstrong. When my son John got his bp injury (age 15, hit by a car while training on his bike), ends up Lance's teammate and friend George Hincapie called John while he was in the hospital! A month later, there was a charity ride in Atlanta & George came down for it, met John and gave him a U S Postal jersey signed by them both. Really cool guys.

Ellen