To all the oldies who have known me in the past two years Im back and doing wonderful. I have gotten off all narcotics as they made my life completely unmanageable. My doctor was kind but being on all those drugs nearly killed me. I have had 4 car accidents due to slowed reaction time.
Yes in the beginning I needed the medication..the Topamax, Avinza, Soma, Valium etc....now Im back on Neutontin and that is enough. I am pain free as long as I watch what I do.
Tamara, Law, Kim, and all you others that knew me here when I first came know my story. Many of you are new to me. I was just ginnybean if you want to read my story. I have had to change my name as I forgot my password....lol.
I was diagnosed with TOS in November 04 and had surgery in November on the left side to remove my cervical rib. I then had a severe car accident on January 3, 05 that nearly severed my long thoracic nerve. I went through **** to find a doctor that could help me. I had surgery in May 05 in Houston with Dr.Nath who saved my life. I was in so much pain on the left side and my right TOS had become so bad from using that arm so much I nearly had surgery again.
But now Im doing well. Im able to do laundry and even clean my home to a degree as long as I listen to my body. I just wanted to come and check in with all the peope who got me through the worst part of my life and the prayers that kept me from suicide at times. To the new people listen to your body...only do what you must. There is nothing wrong with medication. Im not implying that...just wanted to show there is life after TOS surgery and even though it may take a few years it will get better..at least it did for me.
I guess the main reason I have come back is I was so afraid to get off the medicine because I was afraid of that suicide pain coming back. After all my car accidents I came to realize that the medicine was just causing me to exist, isolate from my family and dwell on myself and I realized that I just may could do without it....I detoxed in a hospital off of it and now as I said my life is so much better. Im so much clearer and actually more pain free because I dont do what hurts me now.
On medicine you do things you would not do..and end up hurting yourself more. Im not everyone though and one thing I learned going through this hellish diagnosis is that everyone is different and their needs are all different.
I just wanted to share my story even though its abbreviated just so newcomers can know when you learn your body and after some time at least for me...life does get better...the pain after surgery will get better...and with alterations in your lifestyle you can enjoy life again without constantly dwelling on the pain.
Thanks for letting me share...anyone may email me. Amy

Also to the oldies if you have my number give me a call...if you dont ask me in PM....

Hi Ginnybean.
This is a whole new site- not JLs BT - that's why you had to re register here.

some of us changed our names and some have the same name as at BT{ it had crashed for months}.
DocJohn {not JL} made this forum as a temporary one at first one but so many liked it here he made it permanent- and we are able to help make it our own.

Do you still have kim/butterfly123 contact info - I lost her email when my hardrive crashed. and I don't think she had posted for a long time before that.
I often wonder how she is doing.
If you have her info send her a link to this forum- I'd love to hear from her.

quite a few haven't found this new forum yet - or the old BT since it came back online, all our old posts/info are still missing over there anyway.

It's great to hear that you were able to get off most of those meds- and doing well- so happy for you.
Jo

Hi ginnybean

I'm glad you found this place, and I'm so glad to hear you are doing so well and feeling so much better - that is fantastic!

I remember all the crazyness you went through with the pain and the surgery... If I remember correctly you had a serious lung injury at one point from an EMG gone bad, so it's great to hear that you are doing so well and have recovered so much.

I hope that things continue to go well for you

Take care,
Liz

Hi Wittesea,
Yes doing pretty great as long as I listen to the body...Yes they did puncture my lung and whenever I get sick with even a cold I run the risk of pneumonia which I have had twice since my lung was collpased....too bad I could not sue for that...Too much trouble and too expensive...would have had to pay experts....Not worth it....But I did settle my car accident and every penny nearly went into getting my dream home Bill bought for me. 5.5 acres for the ginnybean to run as well as the kids....we are definately more happy here...not busting out of the seams....lol...and I now I can clean my own home...no more maids needed....I just have to watch it and do what my body can do. I have a clear mind now and for that Im grateful...The drugs sure did take on a life of their own at least for me. When I was detoxing off of them I met so many woman and men who also had been victims of some malady or other that their doctors like mine meant well but the drugs took or for me had taken over my life....That is no way to live either....Of course I can say this now. Im two years out from surgery and my LTN injury and really dont need them anymore...I just wanted to let others know...at least for me and I use I just got to a point where my family and I all knew I did not need them anymore...You can telll...when the medicine goes from helping you exist with some pain to having no pain its time to go down.
I believe we all need to feel just a little pain so we dont do our bodies more harm. That is what the pain is for...to tell our bodies not to do too much...so if your meds keep you sedated and unable to function in life at least again for me that is too much. Thats my 2 cents anyway....Thanks again for the welcome back and I wish all of us pain free days and as many as possible. Amy

Hi Amy! Glad you found us here!!

I agree, if I didn't have some pain, I would push myself and do more damage. I'm lucky in that I don't take my meds out of habbit, it's strictly when symptoms arise, or as a prophalactic (sp?).

In April it will be 2 years since my pec minor release (bi-lateral). I still need muscle relaxers at night (4 of 7 nights) and a pain or nerve med maybe every other week if I'm a good girl and don't hurt myself. The Anti-Inflamatories tho, I neeed every other day it seems.

So glad to hear about the new home! Hope we can meet sometime after the Holidays. It's crazyness here and the first Holiday for my Mom since dad died.

Anne

So nice to see you here with this wonderful group of people here!!!!! You belong with us all!!!! Love it here can't say enough good things glad to have you with us again!!

Take care,
I pm's you!

Victoria

Gnny it has ben so long, but not forgotten... The news of the accicdent is a bad thing, though hearing of your recovery is a great thing! Blessings and thoughts go with you!!!!!!!!!

Mark-n-Goober

Yes I am glad to be back, mainly pain free but I still do take some meds as I said and yesterday had a block to help keep me symptom free....My right side is not painful but Im sooooo noticing the lack of strength, always dropping things so I know it wont be long until I need that side done...Not looking forward to more pain but dont need to hold off too long as I dont want permanent damage...I'll be seeing my thoracic surgeon soon here locally as he did a good job on the left and dont want to travel so far to Colorado...plus my mother couldnt stand not to smoke there...lol....I heard you cant even smoke in a car there now....Thanks Mark n Goober for the welcome back and I'll see you guys here often now...Amy