Newbie Need Help!

[KathleenTyler]

I am 32ys old and have BPI Right shoulder, this happened by picking up a stool in May 04. On March 3, 05, I have to make a choice to either do the muscle transfer at Shands Gainesville, Fl. or try the decompression route with Dr.Nath in Houston, Tx. I dont know what to do, my family doesnt understand, I am in such pain today from bike riding this weekend on a family trip. My veins are bulged out my wrist hurts the muscle under my arm throbs and the hydrocodone isnt working, I am being referred to pain management center, but that doesnt solve my problem, what do I do, wait it out, muscle transfer, decompression HELP HELP, I am going crazy, bad day today with pain makes it all worse!!

[cbe411]

Kathleen... im not a doctor nor am I aware exactly of the damage you have to the brachial plexus but muscle transfers and decompresison surgeries are two very different procedures. To my knowledge they do different things as well..... I would question why such a difference in procedures with different doctors. I know that they all do things differently but... those are REALY differnt!

COurt xx

[admin]

Have you had either surgery? How long have you had your injury? Is it any better? We want to expand our family but cant until I am off the meds. Any insight would be greatly appreciated!! Thanks for answering. Kathleen

[cbe411]

Kathleen, can you give us a bit more insight into your injury. I remind you that we are not doctors here though and the best person to talk to is your doctor. Personally I see Dr. Nath and have been very pleased. We are talking about doing the muscle transfer for me but not for another year or so. I cant bend my arm! Do you have lose of function?

COurt xx

[admin]

Thank you so much for the help. I can raise my arm straight out in front but no higher. If someone holds my arm it will go straight up but if they let go it falls. I have had an EMG and they said the thoriac nerve is damaged but still some function maybe the reason I have so much pain. My serratus anterior does not work at all. It feel like "jelly" in that area. I have major winging and the shoulder blade goes up & out which is killing my neck, the trap muscle is starting to degenerate but I get massage therapy 2x a week. Today I go to pain management. I was concerned if I do the surgery with Dr. Nath if I get releif from the pain, my insurance is giving me problem for out of network and I may have to take a personal loan but if the pain wont get better there is no point in doing it. Did your arm ever bend or has it been that way since the injury? How long have you had this? Did it get worse or better, how about the pain?? Thank you for helping me..its hard to get other people input when they dont really understand the day to day living. I am pretty good at hiding it except when I have days the meds dont work. Maybe pain management will help today...Thank you again, PS I am in Florida

[cbe411]

Good luck with pain mgt! I have heard great things about it! I have had mine almost 4 years and have not been able to bend it or raise it at all since my accident! Fight with the insurance companies, appeal their decisions... I had to with mine, 3 appeal letters! Fight for what you want! Explain to your insurace that you need to go out of network, prove that there is no one in network that can help you. however if there is someone in network, talk to them! I am NOT a doctor but I cant see how a muscle transfer would help this..... where is Ellen when i need her???

COurt xx

[EllenB]

Hey -

Just got back in town late last night from John's checkup at Mayo - and all muscles are firing now!! But sorry I've been out of touch.

I agree with others, in that about the best I can do is refer you to a well regarded bpi clinic. We're very pleased with Mayo, in Minnesota (I know it's a long distance, but we live in Georgia - and it's worth it.) Since you mentioned there might be issues with insurance with Nath, you might give a call to the Mayo business office (800-660-4582) & see what you can find out. Mayo was out of network for us (Blue Cross Blue Shield of GA) but our insurance was able to work with their counterpart in MN to treat everything as in-network.

Not only that, we've learned that the costs of surgery at Mayo is a LOT less than many other clinics. My thinking is that it's because the Mayo doctors are on salary, whereas at other clinics they're trying to make a profit. Just something to think about.

But - not only are the costs of surgery lower & likelihood is good of insurance coverage - the Mayo doctors are truly phenominal. It's a team of three (Bishop, Spinner, Shin) who have different specialties & work together - and are thus able to offer surgical options that aren't always available elsewhere. For John, they've done a crosslateral C7, phrenic nerve transfer, gracilis muscle transfers & sural & intercostal graft & transfers. All have been successful (John has lost all five in his accident & can now move his arm in different ways & make a fist).

Lastly, re pain: in my opinion, the surgeries were worth it if for no other reason than the reduction in pain John has had. He was on massive amounts of daily pain meds (3600 Neurontin, 200 Topomax, 100 Amitriptyline) and now just takes 600 Neurontin whenever he nees it - sometimes just once a week. We feel like we have John "back" now - his personality - as opposed to somebody in a drug-related fog for the previous two years.

Hope this helps! Email me directly if you have other questions.

Take care,

Ellen

[admin]

Hi there:
My first advise is to hang in there and to think positive. I have had 2 TOS surgeries, on both of my left and right hand side. I am being treated by the physicians out of UCLA Medical Center, in Westwood California. The surgeries were rib-resections, whereby they took out my first rib (on both sides) muscles surrounding the ribs, and tried to re-work the nerves to regain proper bloodflow. The surgeries are extremely painful (and i thought childbirth was difficult - that is a walk in the park!) but it does get better. Work with a subsequent doctor whom is a pain management specialist as you will need it as you may be dealing with it for a very long time. My injury occured on may 1, 2001. the surgeries occured in march 04, and january 05. I have an extremely severe case and i do get impatient. I have been out of work for 1 1/2 years. My family doesn't understand, and i don't think they'll ever understand. Find a good support group of friends that can help you through your decision making process. My surgeon today recommended a 3rd surgery on my left hand side, and i'll deal with that later. Try some alternative treatments for pain relief... try massage, heat, a TENS unit or accupuncture - all work for me as pain medications don't do alot for me any longer.

hang in there

[admin]

your case sounds so much like mine...except I injured my long thoracic nerve in a auto accident but i also have nerve avulsion at C5 and C6..If you have any potential by EMG you have a chance at recovery..you need to see a LTN specialist like Dr. Nath no question about it. I know there is one in Mobile Al and there is also one In Birmingham Al..I plan on seeing him possibly next week. If I dont get guareentees I will go to Dr. Nath. I used to live in Gainesville..I miss it..but there are some good docs here in Alabama If you'd like their names feel free to email me at ameliamcknight30@hotmail.com. Also see my wingingscapula car accident thread on here it will give you my history..good luck..Id say no to a tendon transfer until you get some second opinions..Amelia

[admin]

If you are thinking of the decompression to help with the pain-think again. It does not help a lot of people, it's more to help with function. Dr Nath says this himself.
Check the Mayo team, they specialise in adults only, they may be able to offer something that helps and they have a pain clinic.