Hi everyone. I've had TOS since halfway through laws cool, and am about to finally start working full time as an attorney in a demanding environment (probably 100-hour weeks of nonstop computer usage, which I'm mentally very excited for but will physically destroy me within the first week).

I've been in physical therapy and also see an acupressurist and chiropractor several times a week. However, the time I have to invest in these things to maintain any sort of basic functionality is certain to create a conflict with my work obligations, as it already exhausts me to keep up with it given my ordinary levels of pain and fatigue. I barely graduated from law school and am struggling to manage basic things like laundry and housekeeping, and not being able to pursue any sort of social life has been an additional difficulty (loneliness, depression, no support network etc.). I'm not sure how much longer I can continue fighting just to keep my head above the water, and although I'm extremely capable in every way other than physically, I'm very reasonably concerned I won't last more than a few months and will be devastated if my career is over before it even starts because I can't do something as simple as sit in a chair clicking a mouse for a few hours.

Here is what I've tried so far, medically:

1) inconclusive nerve conduction and electromyography tests from a neurologist who ended up saying he couldn't find anything concrete to treat me for despite major long-term symptoms on both sides - a couple fingers on either hand are numb or have burning/tingling/itching nerve sensations with the slightest movement at any given time, and often get "stuck" for months on end (e.g. my right thumb and left index finger have both been about 75% numb for most of 2013 so far)

2) diagnosed with neurogenic TOS by an ortho-muscular specialist and a separate sports-medicine surgeon; vascular TOS specialist at NYU disagreed, but X-rays show disc issues in my cervical spine that seem to corroborate the neurogenic diagnosis

3) several inconclusive MRIs and CT-scans

4) escalating pain management with:

- NSAIDs (oral every day for the past 2 years, and intravenous on several occasions where pain has gotten so bad I've gone to the ER) - aleve or meloxicam daily in the morning, and I switch to ketorolac/cataflam/voltaren on days when pain is worse or I feel like I need a second dose in the evening

- daily muscle relaxers (tizanidine, flexeril, and now klonopin; xanax seems to help, too)

- oral prednisone occasionally (short 5-day intensive courses seem to buy me a little time when things are getting out of control and lying in bed motionless covered in ice packs for 2 weeks isn't an option)

- epidural injections of cortisol on both sides of my cervical spine - haven't really noticed any significant long-term pain relief on either of 2 occasions

- Botox injections into my scalenes and armpits - felt great for 2 weeks and was desperately hoping it would last for 6 months as my doctor told me to expect, but I'm now barely 2 months out and already feel just the same as before

- constant ice packs, kinesiotape on both forearms, and as many hardcore massages/PT sessions as I can manage physically and financially

- pretty much every ergonomic gadget on the market (Kinesis keyboard, vertical mouse, etc.)

- tried and rejected a few other medications like Neurontin (made me stupid!), tricyclic antidepressants with off-label chronic pain uses (worked for a while for blanket pain reduction, which didn't last, and eventually the side effects - increased lethargy, weight gain, lack of motivation - made me decide they were no longer worth it) and weaker muscle relaxers (seem to be mostly placebo effect)

What next? My neurologist has dropped me, and my other doctors keep saying "let's keep up with what we're doing now, you seem fine" but I am desperate for some actual improvement, and feel like despite their good intentions, they don't fully appreciate how bad the status quo has been for me. I also simply can't get away with the status quo once I have to start showing up for work every day and billing hours for clients - I learned how to get away with the bare minimum in school by spending all but a few hours a day in bed/on the floor stretching and icing myself, only washing my hair once a week, leaving the house only for treatment/tear-and-bruise inducing "massages," etc. but this just won't be acceptable back in the real world.

I am willng to try absolutely anything but hope to avoid surgery, and there are no extra cervical ribs or other clear targets for surgery in any case. I just want to be able to work and take care of myself again, at any cost. Apologies for the long venting and thanks very much for any constructive advice. I am in NYC, if that's relevant.

Oops, should be 'law school' at the beginning, obviously.

A couple more things I forgot:

- tiger balm and various supplements seem to help (magnesium, B vitamins, high doses of vitamin D)

- I've developed a very bad tremor in my hands recently (and am generally very clumsy/shaky, drop things all the time and have markedly worse fine motor skills) - it often looks like I have Parkinson's but it comes and goes with upstream pain & muscle tension so I see it as just another TOS symptom. Taking natural L-dopa supplements for this and they seem to help a bit, along with muscle relaxers, but after a certain point the relaxants make me too tired to be productive so it doesn't help overall.

I'm sorry you are experiencing all this. I can't imagine enduring all that and being in law school, too.

I was a lawyer when I developed TOS. It's a tough profession to have with TOS for all the reasons you stated. If at all possible, opt into long term disability (LTD) insurance. My insurance saved my bacon when I went through surgery and afterward.

I wish you the best.

Kelly

Have you been able to get to any of the TOS specialists that are listed in our Drs & PTs sticky thread, or those mentioned recently in members posts?

Have any drs mentioned the type of TOS, nerve, vascular etc?
MRI c spine - what was shown do you have the MRI report?
Some w/TOS also have c spine issues..complicates things..

I don't know if bruise inducing therapy is needed or beneficial.....do you feel the therapist is fully knowledgeable in TOS , posture, myofascial conditions?

Chiro or PT - do they do any trigger point work, top rib mobilization, posture work/awareness?

do you have forward head/shoulders? that can happen with lots of studying/desk work..

If you decide to go into law def get some good ins and LTD, and save for a rainy day, as I think you will need it..sorry but being honest for your own good.

Can you work part time at this job???

Another option is seeing some TOS specialists and getting an opinion about surgery. It seems you are pretty deep into therapies & self care already , unless some more advanced therapists would be more helpful, sometimes you have to more on to get the best for yourself....

Please explore the other threads and the stickys for for info..much more than I can remember or type it all out..

Usually or at least in my case,TOS affects the ring finger and pinky. and the disc issues are what can cause numbness in your thumb and index. I have C-5-6 disc bulging and narrowing of the foramina, but my pinky and ring finger were the ones getting numb, which led to the TOS diagnosis.HAve you had an mri to rule out disc/nerve issues in your neck? The 2 are confused alot of the time.Disc issues are easier to resolve. In my case it is still not completely clear although I found some releif in rib mobilization/pt which has helped my pain alot. i am still trying to go back to work too, I work at a drafting table all day so I'm scared to go back too. Lots of Luck to you-Where are you located? JKL

Yes botox last only 2-3 months.

What to say ? Stop taking pills that don't work much.

What can help ? Nitroglycerin if you can tolerate it. Maybe l-carnitine. see more http://www.doctorellis.com/iAltTreatment.php

Hello Xanthippe, welcome to the forum. I'm sorry to hear about your story. It sounds like the same story we are all going through. First, I want u to know I'm praying for u. I've been dealing with TOS for 20yrs, and it hasn't gotten better. Your story was and is my story. I think u might want to cut back on some of the items u are taking. For me, chiropractors, neurologist, PT, etc., did not work. Injections didn't work, and the list goes on. I'm heading for my third surgery. I think u might want to really find a doctor who can at least point u in the right direction. U do not want to get worse. Please note, I've been told by plenty of doctors, TOS is hard thing to figure out, and doctors do not know how to correct it. U might have to step away from that position, because it's only going to flare it up every day. GOD bless u, and keep us updated. If u get a chance, u can read my story about my 20 yrs with TOS.

By the way u are not alone. So whenever u are having a bad day or need someone to vent, feel free to send me a private email. I'm willing to listen, because I know what u are going through. It's affecting my job every day, and I'm thinking about leaving my position. I do accounting work, so I'm on the computer every day. So u are not alone, u have a family on this forum. May GOD keep and heal u.

Myofascial release, self-treatment with trigger point therapy workbook and back buddy tool, self treatment with Triggerpoint massage ball (cheap at amazon), chiropractor for a couple of years, and my best so far has been massage every week for the past year (finally moved the needle) and like I said the triggerpoint work. Hellerwork also helped my arms and wrists. Didn't help the neck or shoulders. With massage I had to keep trying therapists (went to Massage Envy) until I found the ones that did it for me, but now I am returning to a functional existence after dealing with this horror since 1995. Also stumbled on the vitamin D and magnesium. For whatever reason the D and magnesium really help. Just started with the chinese cupping (12-cup set on amazon pretty cheap) and I like it alot. I don't leave the cups on long, I use it massage-style like a few vids in you tube show. I don't want the "bruises".

Hi,
I sympathize completely with your situation. I also was partway through school when diagnosed. I totally understand how much effort it takes to keep yourself functioning, it's really the same thing for me. Sounds like you have tried a lot of things so I will think over something more practically constructive, but just wanted to say I am so sorry you are going through this and if it helps to know you are not alone with it.