United Brachial Plexus Network

Hello All,

First of all, thank you so much to everyone for so freely sharing your stories and experiences. My husband suffered a TBPI on his left arm 6/30/08. I just found this site a few days ago and can't seem to spend enough time on it as I gather info and advice.

We go to U of Michigan tomorrow for his first appointment with a specialist after his accident. He will have an EMG done prior to the appointment. I'm wondering if anyone can offer suggestions of questions to ask. I see that many use Mayo and that will be one of my questions for the docs at U of M. Another is pain management. We are in a rural town and no one seems to understand the amount and type of pain that Rick is going through. In fact, his primary care physician is already talking about weaning him off his pain meds! And that so stresses Rick...

Any thoughts or advice you can give would be great. We're so new to all of this.....

Thanks! Kim

Yes - Pain - this definantely re-defined what the top of my pain scale was- you know the old 1-10 scale- what is this? I would say about 5 higher than my previous level 10 at least. And when people (Doctors included) ask me, I make sure to tell them that. And I know there are others here who have a lot more continuing pain than I do. I count myself lucky that mine has leveled off for the most part.

Tell your doctor I've had 3 babies without any pain relief, and the pain of my tbpi arm in the first few months was worse than that. BUT it does usually get less with time, especially if you don't have avulsions or they are fixed, and I also have to say it became easier to deal with the pain after I was weaned off pain meds. This is a really common view, I don't know why but somehow this happens. It's still early days for Paul, almost everyone gets relief in time, sorry he's suffering now. Hopefully the doc may have some good news from the EMG, keep us posted.
JenNZ

Hi Kim,

My husband's injury was Oct 2006. We didn't realize that Glynn had surgical options and by the time we did it was almost too late. The Mayo docs like to do any nerve grafts or transfers within 6 months of the accident. Be very careful waiting beyond that point. (Glynn had EXCELLENT bicep and brachialis return)
Our hometown docs just didn't have the knowledge to care for Glynn's injury, but they were proactive and sent us to Mayo. Glynn just had his 7th surgery (the 2nd at Mayo) and has been able to regain some external rotation, shoulder flexion, and abduction.
Good luck to you and I'd be happy to help further if I can!!

Good Luck!
Alecia and Glynn

Kim,

How did everything go?

Sorry I am so late in reading this... I am in the Detroit area (originally from Saginaw)

Feel free to email me personally (courtney@ubpn.org)

I am getting married next weekend but maybe after that we can get together!

Courtney
28 yr old TBPI

Hello Kim,
My husband suffered serious snowmobile accident 2/28/08 in northern Michigan, because of his numerous internal issues he was flown via air helicopter ambulance to Saginaw hospital where he spent 8 days in intensive care, then another 10days. We brought him home for a week and he had to go back in for 2 1/2 weeks. During the entire time numerous doctors treated him, no one noticed he had TBPI. He had extensive shoulder damage, we thought the reason he could not move his left arm was due to the broken bones. It was not until we saw an orthopedic surgeon at St.Joes Ann Arbor who identified TBPI, he put us in contact with Dr.Yang at U of M - we are so very thankful to have this great hospital here in Michigan and we are extremely blessed to have a doctor who has studied the Brachial Plexus nerves her entire life. She is fantastic! My husbands surgery at U of M was mid July...he has physically therapy 3 times a week and is determined to regain use of his arm! Please update me if you can on your UofM doc, surgery plans, etc. Thank you and keep reading this board, it does help!

Courtney,

Thanks so much for your reply. Congratulations on your upcoming marriage. That's such an exciting time of your life! Rick and I just celebrated our 20th in August!

We would love to meet you. We have felt so alone and isolated in this and to hear from two people in one week has been a blessing! Thank you!

Kim

Hello,

Thank you for sharing your story with us. We have felt like no one understands this injury. It's so good to hear others are out there, experiencing the same things. Your husband's injury is a few months prior to Rick's, so he has tons of questions for you...

Rick was in the hospital for a month at Hurley with his accident. He had other injuries as well, but they picked up on the brachial plexus within a couple of days. It took emergency workers 30 minutes to get him out of his car. They are amazed he even lived from the accident. Unbelievably, he didn't have any broken limbs!

The EMG showed that he has some areas with no conductivity. Dr. Yang says his injury is at C5-C6. Thankfully, the nerves are not avulsed, as originally thought from the MRI. So, we go back on Dec. 3, do the EMG again and look at surgery options.

Rick's curious - what type of surgery did your husband have? How long was he in the hospital for this? Is the pain better or worse? Is he regaining movement? What pain meds and dosages was he on prior to and after the surgery? What sort of support does he wear?

I was pretty impressed with Dr. Yang. I'm so glad to hear that you feel the same.

Do you still head north at all? We are only a short drive from I-75. We'd love to meet you in Saginaw or elsewhere.

Thanks again for your help! Kim

Hi Kim!
Dr Yang was able to preform a nerve transfer, taking nerves from my husbands back and chest and reroute to his shoulder & arm. They did have him prepared to take nerve from leg in the event his other nerves were not long enough to transfer, but it worked out fine. The hospital stay was only one day after surgery, basically to monitor pain.
My husband has home excerises each day and goes to PT 3xs a week. His pain level is slightly better than say 3 months ago, but it is not an overnight thing, it is not something that will easily go away. He struggles with pain each day and has difficulty at night trying to sleep, he goes from chair, to chair trying to find a comfortable position.
Prior to the surgery he was in a simple arm sling, after the surgery, arm sling and now Dr.Yang said he only has to wear the sling when he feels he needs it. The pain med that works best for him is vicodin, he has tried several others that did work well to cut down the pain, but side effects get in the way, so he trys to deal with the pain and the vicodin helps some.
How is Rick handling BP mentally? I find that is an equal challenge with my husband, things he can no longer due that he once could.
HagarH

Bump