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.

I'm not the one to tell you of their surgery experiences, but your story is familiar to all of us. I wanted this thread to get bumped up and not disappear so that one of our many "surgery people" can advise. Also, look at the stickies at the top of the page for further information.

Welcome to our forum and although I'm sorry you have to be here, it's a great place for information and caring people. phoebe

Hello and welcome,
here is the Useful Stickys link - some of our polls and articles listed in the newest posts.
http://neurotalk.psychcentral.com/showthread.php?t=84

I haven't had surgery either - but I believe it can take many months to recuperate - slow and steady is the key - not something to rush.

I don't think you would be comfortable at the beach at 1 month post op.

Have you had MRIs and xrays of the C & T spine?
to verify no c- spine vertebral cause and that there is no extra cervical rib?

have you considered seeing an expert chiropractor or body worker?
To address any postural or alignment issues?
see the stickys post #1 for chiropractic info {C1 C2 misalignments}

Shellie, I posted on another site to you but just so you you know, I spent a long time in horrible pain. Hospital traction, misdiagnosis, disc replacement that was unnecesary. After finding the right doctor I had rib-resection and scalanectomy. For six years I was COMPLETELY pain free. I am suffering a flare up due to my own stupidity. The difference in my life from before and now is unbelievable. One reason you do not see the success stories, is, once you are "better" you don't go back to the site. I still e-mail DiMarie ocassionaly, but I think you want to forget the pain. The support should always be there. I also think that there is guilt. When I feel better and others don't. But we all share the same thing. Keep writing to this forum. Everyone is great with information. They have helped me alot. Linda

i just had surgery 8 weeks ago on one side, and waiting to have it on the other side.

post surgical pain/healing is different for everyone and seems to be dependent on what kind of shape you are in going into surgery.

I was driving short distances two weeks out. I still cant drive long distances because i get back spasms- but if you don't have those driving may not bother you. i was also washing my own hair within a week and a half, though maybe not very well

My neurologist (who was NOT my surgeon, but treats many people who have had surgery)suggested to me before surgery that he sees wide variance in surgical recovery. He told me to expect 6 weeks to 3 months before i could go back to work for one surgery. Given that i am having two i expect to be out more like 6 months.

My surgeon told me I'd be back to work in 4 weeks...needless to say he was a bit optimistic!!! However, if i had a lesser case of TOS, the SURGICAL pain was well under control by the 4th week. I'd say by 6 weeks i was back to my pre surgery self, and now I am starting to make some progress past that.


If your beach trip is an easy vacation where you expect to be laying around a lot, it probably will be fine, but you are the only one who knows how you are travelling and how you can generally withstand that. Adequate pain medicine will make it all much much easier.

this is just my experience...like i mentioned, very different for everyone.

best of luck to you.

Johanna

PS, I has a complete first rib resection coming in at the armpit as well with Dr Ahn in Los Angeles.

hi, it's me, the dead horse beater...

is your surgeon really planning to only remove a portion of your first rib?

i had posted this question to you i think in the general part of the forum a couple of days ago (hard to recall because i've been in a pretty bad flare).

thanks.

alison

I've had MRI's of the brain (to rule out MS, Lupus, etc.) and of the cervical spine, and x-rays of the cervical and thoracic spine. In 2005, I was diagnosed with degenerative disc disease (at 27 years old!!) with protrusions at the C6-7. No extra ribs. I've been seeing a chiropractor and massage therapist (although not experts in TOS) since the accident in2001, and we've addressed posture. My posture isn't great but it's definitely better, but my symptoms have not improved.

After surgery, I plan to go to Palmetto Pain & Rehabilitation in Spartanburg, SC for PT. The doctor there is supposed to be very experienced with TOS.

Thanks for the info, and I welcome all comments/suggestions.

Thanks for all the great info Johanna! I hope that I recover as well as you are. Like I said earlier, I will be having surgery on my right side only. I have minor symptoms in my left side, but not enough to warrant surgery. I pray I will never need the left side surgery! I've been pretty freaked out by reading so many posts about folks who are in a lot of pain, recovering slowly, and/or not working anymore. I'm only 29 and my career is well on the right track--I'm not ready to give that up yet. I would be SO bored for the next 45 years!

My surgeon told me to take as much time as I could from work, and that I could not lift my arm above a 90 degree angle for at least 4 weeks. I have about 6 weeks of leave to take from my job, but then I'll have little to no time to take for PT appts and bad days. So I really hope that I can get back to work, even if it means I am sitting in my office all day doing nothing. I am in social work, so I can do the counseling piece with no problem. It's the documentation and the driving that I worry about. I did purchase voice recognition software (Dragon Naturally Speaking, it's great!!) which will help a lot with documentation. I usually drive about 300 miles a month on the job, some local, some long distance. So again that will be the biggest issue, next to managing the pain.

My beach trip should be pretty low key. It's a 3.5 hour drive, which my husband can do, and then we'll pretty much be either on the beach or at the house we are staying at. Most of my friends that are going will be partying, but I guess I will be feeling pretty good on my pain meds so I won't need to party. I can just sit and be mellow and laugh at them while they make fools of themselves.

Hey there,
I cut and pasted my reply from the other forum so that people over here could see my reply.


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!

Hi Shellie, Best of luck with your surgery. Mine was in 2000. I am suffering a set back right now but have had great success after surgery. Just do not over do anything and don't rush recovery. Recovery takes time and patience. Best of luck. Linda