United Brachial Plexus Network

I guys! I'm sorry that I haven't posted in a while. I like all the changes to the place, it's nice. Dr. Nath said that I would not need Nerve Transfer surgery however he wanted me to continue in pursuit of Scar Tissue Removal surgery, he said that he does not do that. I was finally able to get in with the doctor who was sick that I have been trying to get into for 6 months. He says that where the nerves/veins/etc. pass under the shoulder but over the first rib is where I have a lot of bursing and swelling and that if I don't have surgery it won't get any better, infact, it will start hurting more and more. So I guess I'd better have the surgery... But is scares me. They want to take out the first rib, to give the nevers/veins/etc. room to heal. They will have to go in under my arm and take out the rib from there. I will be in the hospital several days. He said it would be urgent surgery because of how bad my EMG numbers are. Normal numbers are like 85 and mine are 36. I check in on 11/27/01 (Tuesday) and won't go home until Thursday or Friday, depending on how well or not I do. Does anybody know anything about this type of surgery. This is something that I totally did not expect. It not only scares me, but my whole family too and that makes me even more scared. Kathy, Nancy, Ryan, Mamma, all my buddies that I meet at Camp 2001, please e-mail me. I need your input. I have nowhere else to go for information on this. I need someone to tell me something. Please....Debra Rangel MsPinkShop@aol.com Please.

Hi Debra,

I wish I could offer insight into the surgery that was recommended for you, but I have not heard of it.

I can only offer my thoughts and best wishes, I hope that whatever direction you pursue, that it will bring relief for you.

Take care, keep us posted,
Bridget

Hey Debra,

This was something that was presented to me as well. I was told that removing a rib would give more room for the nerves. I was bad enough they talked about removing my collar bone. Seems to me I kind of need my collar bone. I spoke with my family doctor who I trust completely and he said that actually you can function without the collar bone. I still had my doubts! LOL I agreed that they could take my rib if needed. When they got in to decompress the nerves they decided to leave the rib. That was 8 years ago this month. Truth be told, Debra, I wish they had taken the rib. I still have a great deal of pain and swelling in the collar bone, chest area. I can't help but wonder if they had taken the rib if some of that would not have been less.

As far as the surgery (removing the rib) from what I was told at the time it is a difficult surgery. I am not trying to scare you in anyway, just letting you know what I was told. They said I would be sore longer than normal but they end result would be worth it. Have you ever had bruised ribs? They said it would be like that. I have had bruised ribs, it is frustrating. There is little to nothing you can do for the soreness. The area is to deep for heat to work... everytime you breath it hurts and you can't stop breathing LOL... finding a comfortable position is hard...it takes sometime for them to heal enough that the soreness goes away. At least mine took awhile. I would say if you can deal with that, with a possible light at the end of the tunnel, it might be a good idea for you.

Have you had surgery before? Drop me a note I would be more than willing to email with you regarding what I have had done. I have had a total of 6 operations (not all BPI related), so I am kind of an old pro! LOL

Joy

Joy, If you have any information on paper that you can fax to me my number is 972-636-9379. Did they go under your arm to take out the rib? Who was your doctor? Is there anything at all that can be done for the rib pain after the surgery? Did taking out the rib help your brachial plexus to heal? Did it take away the brachial plexus pain? How long were you in the hospital? Did you have any complications and if so, what were they? I sure appreciate you answering my post, but if you can give me any more information at all I would appreciate it. Is there somewhere on the net that I can go and find out about the suregery? I am so full of questions. Debra

Bridget,
Thanks for the reply. Im sorry that I havent posted lately. I have been in and out of doctors and EMGs. And then there a my kids and their doctors, and all of the family stuff. Anyway, have your heard of anyone at all that has had this type of surgery, besides Joy that also answered me? I have little time to research this topic, they call it Thoracic Outlet Symdrom. If you have anything more for me, please post or e-mail, MsPinkShop@aol.com Thanks. Debra.

Debra, I know nothing about this surgery, but I will be praying for you. I wish you the best and pray for an end to the pain and misery.Good luck Rhoda

Debra,

I don't have any information to offer, sorry. I would just have recommended that you post your question here to see if anyone else knows anything about it!

Best wishes,
Bridget

I don't know anything about the surgery you mentioned Debra. Sorry....no help. I have a friend who suffered a temporary bpi in both arms from a motorcycle accident, and he told me yesterday that they had to actually take out a portion of his collarbone to relieve pressure on the plexus. Not sure if that was the only reason. Anyway, he says he suffers no pain in that spot now.

Wanted to say Good luck with your surgery, and that our thoughts are with and your family.

George

Debra

I need to go pick up my son from school BUT I promise to respond as soon as I get back!

Real quick...They decided NOT to remove a rib once they got in there but they had me prepared for that. The doctor is at Philadelphia Hand Center. The hospital is Thomas Jefferson University Hospital in Philadelphia. I think I have a site for TOS and will post it for you. If I have anything on paper it is in a box somewhere... we moved in April and I have not finished filing all my papers back in their proper place.

Questions are good!!! Don't ever stop asking.

http://www.ninds.nih.gov/health_and_med ... ic_doc.htm

http://neuro-www.mgh.harvard.edu/forum/ ... .Menu.html

http://www.nismat.org/ptcor/thoracic_outlet/

http://www.tos-syndrome.com/

http://health.discovery.com/diseasesand ... /1794.html


Those are the sites that I had bookmarked. The one is actually a message board. I would think it would be helpful.

To answer a few more of your questions. I had the surgery on Monday and went home on Friday, the day after Thanksgiving. The only complications I had were from the IV and anesthesia. I have no veins thus making it difficult to start an IV. The anesthesia makes me sick! Luckily with my following surgeries I was able to tell them and they gave me medicine to combat the sickness.

After my surgery I noticed, or I should say my parents noticed, immediate improvement. When they took hold of my left hand it was not cold. That was while I was in recovery. The following morning I was taken to PT. The key to this surgery working, from what I was told, is to keep that area moving so scar tissue will not build back up. With surgery there will always be scar tissue but the goal is to keep it at a minimum. Each day I had PT with a therapist except for Thanksgiving Day. It was very difficult. The pain was bad during these sessions.

The doctors and myself considered the surgery relatively successful. Meaning, it did not solve all my problems but it did help them. All of my surgeries have helped. They did not cure me, I don't think that is possible, for me anyway. I was told early on that the goal was to give me a few good days amongst all the bad. That was accomplished.

Debra, if you do not feel you have enough information to go ahead and have this surgery WAIT!!! TOS is not life threatening. Painful, yes but you will not die if you do not have the surgery. Be comfortable with having it done, don't rush into it without having all the information you need. If you and your family need some more time wait until after the holidays. Do not feel pressure from anyone to have this done. Exhaust all your resources first. I know I say that a lot but I feel strongly about folks making sure this is the right thing for them.

Anymore questions contact me. I am off to my appointment. Thursdays are nuts around me house... my son has an after school class that lasts until 6, I have an appointment at 5 every week, and at 7 my son has Boy Scouts. We collapse on the sofa at 8:30! LOL

Joy