[trix]

1991-rear ended minor whiplash
1993-rear ended minor whiplash
1994-I rearended someone minor whiplash
2005-rear ended
march 2006 diagnosed with bi-lateral TOS
June 2006 put on surgery wait list
I did 6 months of physio and and continue to do chiro1 or 2x per week.
I am remodeling my basement and deck, and I run a daycare from my home. My pain levels are growing week by week.
My lawyer is on leave for cancer treatment, and my husband works 50 hours per week.
With any luck at all, the surgery will come soon, and hopefuly I will get better, get retraining and be able to go back to work.

Injured 11/02-Bilateral TOS

11/05- (YES 3 YEARS LATER!!) supraclavicular decompression surgery -removed 1st rib and 2 scalene muscles on the left side, my dominant side
mild disc tear in c5, c6,

recovering- still unalble to shop, cook, clean, drive...... in other words no life...

post op. experience - less pain on left, less swelling of arm and hand, no more discoloration unless I over do, some relief in numbness and pins and needles, still have a numb pinkie finger

post op complications- new stabbing pain in my shoulder blade, weaker neck (duh ! 2 muscles gone ! ) twitch in L eye lid almost constant. L eye, dialates less then R, some difficulty with breathing, voice changed,(not for the better ) TMJ symptoms worsened.

I still would do the surgery again, the pain relief was worth it!!!
Believe it or not I am optomistic I will get better and be a self sufficient individual again, maybe slightly different, but I will have a life again!!

Gromlily~

[tonia]

Hi ALL!!!...
I am a long-time sufferer of dodgy arms (especially elbows), rotten neck and lower back...
I had heart surgery in April '06 to remove Aneurysm and replace Aortic-valve...
Connective Tissue Disorders suk!

[Krankie]

Hi guys...

I'm 30 w/ bilateral TOS due to a work related injury that occurred in Feb. of '03. I have been out of work for 2 years now and ambored out of my mind!!!! But I feel much better since I'm not working. I am awaiting a hearing for disability and I am presently on W/C, which is another story all together. I'm glad to have a forum back so I can listen to what everyone has to say about TOS and all the other problems that I can relate to. Hope to hear from everyone soon!!!!


Krankie

[beth]

Hi everybody,

When BT went down I was fine for a while. But I REALLY started missing my friends after 3-4 weeks, ya know? Very happy DocJohn put this up for BT users!

Here's my story:

2/2003 Td vaccine reaction causes BP neuritis, RSD, central sensitization, leads to rt-side TOS due to pre-disposition (extra scalene muscle wrapped around lower BP)

2/2003-8/2003 Pain meds, muscle relaxants, sleep aids, MRI, EMGs, PT/OT, chiropractic, physiatry, rest, Doppler sonogram, more PT, see numerous Drs looking for answers

8/2003 Diagnosed w/ TOS, RSD w/ central sensitization - Dr Togut

9/2003- 12/2003 TPIs, stellate ganglion blocks, pain management program (biofeedback, counseling, pain education, massage, ultrasound, interferential, more PT/OT), EKG, MRI, narcotic pain meds, nerve pain meds, anti-depressant,

2/2004 Rt first rib resection/scalenectomy- Dr Annest (re C-8 EMG)

3/2004-1/2005 Nerve glides, PT, Feldenkrais, Tae Chi, massage, warm water therapy, counseling, narcotic pain meds, nerve pain meds, anti-depressant, TPIs

8/2004 Diagnosed w/ lesion rt lateral cord (re 2 EMGs) - Dr Sureka (Peoria)

10/2004 Surgery - pec minor release - Dr Annest

11/2004 Left side TOS diagnosed - Dr Togut (10/2004 Denver EMG supports)

11/2004 Appt w/ Dr Schwartzman - diagnosis severe, full-body RSD.

1/2005 Hahnemann Hospital, Philly, 5-day Lidocaine IV infusion, react to Lidocaine on day 3, relief attempt fails.

9/2005 Hahnemann Hospital, Philly, 5-day Ketamine IV infusion, have really good response, day 5 have zero RSD pain!

10/2005-2/2006 To Philly for boosters, 1st every 2 wks, then every month. Relief now abt only 50% due to the ongoing nerve damage and because I'm always worse in winter. But things stay stable all winter, and it's the best winter I've had in the last 3!

5/2006 Time between boosters extended to 3 months, and it's as though the "magic spell" has started to wear off. One by one pain and sx come back. Stress from frustration w/the insurance co. and legal battle cost me greatly as well.

Which brings me to where I was when BT went down - insurance has denied paying for any ketamine treatments and I've tried most everything else, treatment wise. And when will I hear about the decision on my compensation case? All my RSD sx are back, esp. the pain. Counseling is helping my mental framework, but nothing else is happening. Somethin' has to change! WELL........

I HAVE NEWS - see my post "Good News"!!!!

beth

[Horizontal One]

Hi

1990 Bi lateral c7 ribs excised with stellate ganglion sympathectomies

6mnth recovery but car crash - rear impact left with bad whiplash --injections in neck for headaches etc and neck pianfor several years.
Viral illness left with neuropathy to lower limb
R SIJ problems - pain +++
All seemed ok til 04 - L wrist pain....within 10 days raging bilat arm pain..only relieved by being flat hence my sign on name Horizontal. Then that did not help.

Lots investigations.....CXR, MRI, EMG ruled out hind brain herniation but do have narrowing/disc degen down c spine.

05 - had exploratory surgery L brachial plexus ----adhesions, rib end excised, muscle cleaned up, nerve fibres pinned down, released...recon work to sub clavian art...
Have colour change, cold hands, grip probs, sensation issues
Very tight thoracic outlet space......lots nerve damage.

Post op......still pain probs persist....lots of drugs inc Ketamine
Breathing problems - have L. hemidiaphragm paralysis and partial paralysis to R. on oxygen and SOB minimal exertion.

Review with surgeon very soon...also under pain doc. - both great docs.
Getting lower limb problems - both knees jointly (no pun intended) giving me pain...despite the pain meds I am on...so this is giving me trouble getting up and moving about.
Had to retire from work.....fed up but maintaining ability to laugh as if get depressed wont be able to drag self out of hole with useless arms.

That's me....like you found myself here and made some great friends...great help and useful advice.

[sandy1955]

I was diagnosed with tennis elbow in MArch of 03. I worked until was laid off (due to company filing bankruptcy) on December 31, 2003. By the time I stopped working I had to have not one but 3 procedures on the left elbow. Ulnar, radial tunnel release and tennis elbow release-Jan 2004
July 2004-right ulnar release
December 2004-right carpal tunnel and radial release
Since all that cutting didn't help with the pain in my neck and all the numbness, discoloration and tingling up both arms I finally was seen and diagnosed with bilateral vascular and neurogenic TOS. Treatment started a year later with the rib-resection a year after the PT. April 2006.
I am better but can't do much of anything without pain or swelling. So now they are ready to do carpal tunnel release on left hand.
I have said I will never let them do the reb-resection on the right side-I would sooner cut my whole arm off-than suffer the intense post-op pain after surgery on an outpatient basis.
I, too am bored out of my mind...So I eat and eat and eat.......30 pound weight gain attributed to neurontin and Hershey's!!!!

[evie]

Hi all

My name is eve and I live in Switzerland. As some of you know, I have bilateral, wide cervical ribs and vascular (arterial) TOS which, however, is but a small problem area in my body that seems to be intent on picking rare forms of joint, connective tissue and other problems. The latest one of these is hnpp which was confirmed by genetic testing just 2 weeks ago. It is the cause of quite a few of my neurological problems and mimicked neurological TOS enough to fool the docs for 4 years.

I've had too many surgeries in the past and already have too many lined up for the future...if ever I get a spare decade, I might tend to all of them and get myself fixed up for good at which point I will change my name to bionic or cyber woman. In the meantime, I just try and live as normally as possible....a little bit more difficult right now as I have received the labels "incurable and untreatable" and am still digesting that.

As the choice in dealing with all of this seems to be to cry or laugh, I try hard to laugh...it mostly works but people have told me that, for some weird reason, my humour keeps getting blacker and blacker...

cheers
eve

[Donna7]

Thanks, Tracy, for posting the link to this on the MSN Groups TOS message board.

I'm Donna, in Colorado...
Had an MVA 5/02 with a drunk driver; had a lot of shoulder injuries including a SLAP lesion and torn middle glenohumeral ligament; arthroscopic repair to these and other problems in joint in 9/03. Still continued having problems with clavicular instability, numbness in left hand/shoulder and face, pain in shoulder, shoulder blade, neck, head, arm, clavicle. Also had a whiplash with bulging discs at C5-7.

Like everyone, had numerous MRIs, lots of doc visits, almost all of whom have diagnosed TOS, with some differences as to recommended treatments. Since I live near Denver, I was able to see Dr. Sanders for a consult and have Dr. Centeno for a PM doc, and an excellent neurosurgeon at Pres/St. Luke's.

I am now 6 weeks post op from an anterior cervical discectomy with fusion at C5-7, which my neurosurgeon was hoping would help with some of the numbness and pain in my arm/neck/head. So far, neck spasms are better, headaches gone, but left arm hasn't improved. I just got the collar off a couple of days ago, and that seems to have flared up the shoulder some, as well as some swallowing problems (I've lost about 20 pounds, though...one benefit!)

I'm very thankful to have good doctors and a supportive family. My husband has been so patient and kind... I also have a very good attorney who is helping with all insurance issues (we just maxed out the auto insurance and have to switch to our private insurance) and working on a settlement.

It's nice to "see" you all again! Anybody know how Sea Pines (Alison) is doing?

Donna

[astern]

haha... TOS humor.

I'm F/44, had bi-lateral cervical ribs and an extra left scalene muscle that decided to start giving me sx at age 35. Diagnosed in 2001, had cervie and first rib resections in 2004 in Denver. (I won't mention the first FAILED attempt at a resection in Florida: mangled a nerve in my arm so bad it had to be removed ) Sx persisted, so had bi-lateral Pec-minor disinsertion April 2005. Overall only 10% improvement... but a 10% I accept happily.

Applied for SSD/SSI in 2003... still awaiting court date, another year out for GA. Divorced in 2005. Going to try a letter writing campaign to plea for help. Living with family until I win my case. Surviving on State supplied medical care (minimal and poor) and food stamps.

I'm super-glad that we are coming back together!!!
Anne