Newly Diagnosed with TOS
 

Hi, my name is Shellie, and I was diagnosed with TOS in December of 2006. I had a car accident in 2001 and had a whiplash injury, and I've never been the same since. I did PT in 2001 and 2002 for my neck injury. In 2004 I started having numbness in my thumb, and happened to mention it to my neurologist. I did more PT for a "pinched nerve" in my neck. The numbness eventually spread to all of my fingers and up my forearm. She diagnosed me with CTS, and sent me back to PT in 2005. When my CTS had not resolved, and she was ready to send me to surgery, I did my own research and ran across an article about TOS being misdiagnosed as CTS. I mentioned it to my neurologist, who then did the 90-90 test, and immediately diagnosed me with TOS and referred me to a surgeon. The surgeon was not impressed, and sent me to PT AGAIN. This PT only made things worse (they believed in no pain, no gain). Back to the neurologist, she recommended a different PT office and for me to find a surgeon who specializes in TOS. I found Dr. Bottsford of Foothills Cardiothoracic Center in Spartanburg, SC--he's the best, so I've heard. He reviewed my medical records, did a 90/90 test and some other tests, and confirmed the TOS dx. He recommended surgery, but told me to try PT a little longer. After 2.5 months of unsuccessful PT, he has scheduled me for TOS surgery on August 21st of this year. I am happy, because I've felt like surgery was the answer for several years now, but I am terrified at the same time. I will be having some muscle cut and a partial rib resection on my right side. He's is going in under my arm. I've been told I'll be in the hospital a few days, to bring a pillow to prop my arm, that my head will be heavy, and that it will hurt. He advised me to "take as much time as I can from work" after surgery. But I don't want to use up all of my sick leave and vacation leave because I will need to go to PT post-surgery. I would love to hear from others specifics about their post-surgery experience, such as how bad the pain was, how long until you could drive, dress and bath yourself (I have long hair, it's going to be very difficult to wash with one hand! My husband will have to help me), type on the computer (I do a lot of that at work), etc. How long were you out of work and do you think I can go to the beach a month after my surgery? I've already paid! Thanks in advance to all who respond.

Hi Shellie,

I am Shelley and a TOSer and I had TOS surgery in Dec 2006. What are the odds? Maybe we are twins :D

I am sorry that you have TOS but happy that you found us. Below is the link to the TOS forum

http://neurotalk.psychcentral.com/fo...aysprune=&f=24

We have lots of members who will be able to chime in on both PT and surgery.

Hi Shellie...
 

I don't have TOS, but it's still nice to meet you! It'll be great to have another Shellie on the forums! I hope that your surgery turns out to be everything you want it to be, and you feel great afterward. Good luck! :)

Idealist

Shellie,

Hello and welcome to NeuroTalk. You will find a lot of caring people to help you out in any way they can. Looks like you are off to a good start meeting Shelley and Idealist.

Hope to see you in any of the forums. My thoughts and prayers are with you.

Darlene:hug:

Hi, Shellie! :Wave-Hello:

Welcome to NeuroTalk! I see that you have been provided with a link to the TOS forum and I want to encourage you to feel free to jump right in.

This community is filled with useful information and supportive people.

Welcome again.:)

Hello and Welcome
 

unfortunately, your story is not uncommon at all for a TOS'er, shellie. i am so sorry this is happening to you and i really hope that you will join us over on the TOS forum because i think you will find some great information and meet some incredible people there in the process...;)

lots of us went through years of misdiagnoses, unnecessary surgeries and damaging PT before finally receiving the accurate (if not welcomed) dx of TOS and landing here.

listen, one thing jumped out at me from your post and hopefully it is just a misunderstanding. it is extremely important that your surgeon remove your entire first thoracic rib when he performs the rib resection on you. naturally, he will have to partially resect both the anterior and the middle scalene muscles in order to get that rib out, shellie, as those structures are anatomically attached to your first rib. but your post says he's only taking part of the rib out, too - PLEASE say it ain't so, girl!--:confused:

because believe it or not, there is a danger of the rib growing back (and causing compression problems again, and worse) unless the TOS surgeon very carefully removes the whole first rib. i believe you stated that your surgeon was using the transaxillary approach; that is what my surgeon (dr. steven annest of denver, CO) used, as well. he then reattached the cut end of the middle scalene to the cut end of the first rib in order to leave a smooth surface for the nerves to glide on. most of the top TOS docs have their own, slightly different approach to things... just to keep us on our toes i guess (like we don't have enough on our minds already? puleeze!). lots more about these general approach issues on the TOS forum.

PM me if you have questions about this particular aspect, though, and i'd be happy to point you towards the scientific research or we can even talk on the phone if you'd like. if you're anything like me, you're starting to get pretty nervous right about now - august is right around the corner, after all!--:eek:

this is a good support group and we'd be pleased to help see you through the perioperative process, shellie. you have been through so much already and i know you bring a lot to the table as well. i'm looking forward to getting to know you.

if i were you, i'd be careful of that other shelley, though... she bears watching! --:D

alison

Hi Shellie and welcome to this great community.

I hope you find it as wonderful as I do. :hug:

Hi Shellie, I had surgery in 2000. I had a rib resection and scalanectomy. I had been pain free for 6 years but I was unwise and re-injured my neck. It is very possible to have a successful surgery. I am trying very hard to be careful. Since my surgery I have had a baby with no complications. Please feel confident and be careful of how you use your arms. Best of luck. Linda

Hi Sea Pines,

Thanks to you and others who have replied. I feel so loved already! And I apologize for taking so long to get back to you...I've been away from my computer for several days. To answer your question about my rib resection, I am about 90% sure that he is only doing a partial rib removal. But because you raised the question, I am now skeptical. My pre-op should be Aug. 14th (I'm waiting for a call to confirm the date), and I will definitely ask him about it.

Thanks again for your support, and I'll "talk" to you again soon!

I am a TOC'er too and have herniated and bulglings discs. I too had thumb issues. I've not had surgery. You can go back and read my Post if you like. I was misdiagnosed and took the wrong advice. I've suffered because of that and have very bad ill feelings toward the doctor who did misdiagnose me. I've been in PT since 2000. It keeps me working. I also try alternative things that seem to help in some way. 3" balloons under the arm pit opens up the area and seems to help my symptoms down the arm.

I don't know what test you're calling the 90-90. What test is that? I'd like to know.

My symptoms have decreased a lot over the years and I'm not ready to have surgery, although I'm still very symptomatic. I've learned the hard way about the dos and don'ts of TOC. It's very life altering. The pain patterns will change as time goes on.

I do think surgery can be successful, although I've read some pretty bad results and secondary complaints. You must have confidence in your surgeon. Ask him more questions about your particular procedure. Each person is different, thus each surgery has to be cretiqued to your anatomical structural condition. Rib resection and scalanectomy is also recommeded for my TOC. I'm at a mild stage right now but can exacerbate to moderate. I'm not severe any more but it's a chronic condition.

Best of luck with your future impending surgery or whatever you choose. I do think we're lifers with this condition, though... surgery or not.

:hug: