Help in Minnesota
 

First time poster, long time lurker. I've recently been diagnosed with Neurogenic TOS, and looking for opinions and other options. I'm a 34 year old male from Minneapolis who works as a local truck driver hauling gasoline. I work 60-70 hours a week, and average 250 miles driving a day. I am also the provider for my wife and young son. For the past year, I've been having increased numbness, tingling, bicep burning, scalene (stabbing pain). I'm starting to get some numbness and burning on my left side as well. I've tried PT, and it had no effect for me. I've been seeing a chiropractor for 2 months, and didn't have any left side issues prior to seeing the chiro. I have had dry needling in the past, and relief for a day or so, then back to issues.

I'm losing my ability to perform as a husband and father to my young son, and I'm looking for a second opinion. I've undergone an MRI of the brain, thoracic spine, and left/right brachial plexus. The right brachial plexus MRI showed nerve inflammation/swelling of the c8 nerve, which my vascular surgeon said was rare to see. Neurologist concluded I have non specific Neurogenic TOS. Doppler test was negative. I have an EMG scheduled next week. I've been advised to have a rib resection, or to try botox injections of the scalene muscles to see how I react. The health system I use has no one performing this technique, so I'm at a bit of loss as to what/where to go next. Both of the Dr's listed in the sticky are in their 80's, and I can't find them in their respective clinic websites anymore.

Is there anyone on this board from MN who has had luck with MN surgeons, Dr's, therapists, etc? I'm an hour and half from Mayo clinic, but don't find much information about them in dealing with thoracic outlet. I'm basically looking for a second opinion before I have a rib possibly removed. Ironically my mom had a rib removed 30+ years ago for TOS as well, so it very well could be my anatomy. I should also mention that I had 3-5 concussions in my youth, struggled with headaches for 5+ years (10-15), and started noticing pins/needles (hot/cold sensations in 1998 ish. From there I would get burning/fatigue while shoveling snow, sweeping, digging a hole, etc. Basically anything with push/pull activities. This has increased, and brings me now to my numbness, burning, etc etc. I have always been a truck driver, farmer, machine operator, etc. Had a fair amount of computer use in the past, but try to limit it now as it flares me up terribly. So my symptoms very well may have started as early as 1991/1992 with concussions, headaches, and has slowly progressed from there.

I'm rambling now, and it is a bit unorganized, but looking for anyone in MN that might have a suggestion where to go or who to see. I'm not afraid of rib removal/surgery, just trying to make sure it is the right fit for me, my family, and my recovery.

Did the chiro do upper cervical adjusting? the c1 c2?
with the past concussions that might be a bit of help..but not instant, it takes time as the ongoing injuries took time to get this bad..

I went to a very good chiro for many years, he used many modes of treatment, ultrasound, IF stim, NIMMO, trigger point, top rib mobilisation, whole body posture , the upper cervical & low level laser..
Early on during my worst spasms , it took him 2 months (2x a week) to resolve the worst of my issues.
I continued seeing him for quite awhile ( monthly or every other month) until I felt I had reached my max improvement..

I will say the arms forward posture of truck /car driving is very irritating for most w/ TOS...
It won't go away or improve unless you do something and make changes...

You may end up making it a work comp claim, I don't know the comp system for MN.. you might explore that option.. privately don't announce it to anyone at work.. work comp is a pain!
Not an easy system to deal with, but the job & long hrs are a big factor.. can you apply for any other jobs in the company, with less driving postures? less hours?
I'll be blunt.... if you do continue working as you are now ... it won't be a good thing..
Others had big income jobs and pushed themselves past the point of no return.
Nerves get mad and stay mad a long time..

Poor PT can make you much worse..
It took years to get this injury and may take years to recover with the best of treatments..
You can call nearby pro sports clinics and PT places to ask about who they recommend locally for TOS.. be ware of those that say they know all about it.. most times they do not really know.. so if you haven't explored all our stickies... do that and learn as much as you can so when you see Drs/PT , DC you can tell if they are knowledgeable or not..

How did your mom do with her surgery? Everything went well?

Sorry,,, if you lurked , you have read most of this kind of info already..:o

My chiropractor is very basic and doesn't have any "tools" aside from his hands and table. So I will seek a more advanced chiropractor. I failed to mention that I also have moderate stenosis on the right side at c5/c6 and moderate foraminal narrowing on the left at c3/c4, so I have a journey ahead of me. Not sure if poor posture, tos, concussions etc caused what issue, but I'm now chasing TOS as my main issues.

I'm in the process of reducing my work hours and ultimately finding new employment. I spent the past year and half taking 4-7 online credits to finish my bachelors degree I never completed 10 years ago. I'm not proud to have to quit a career as it makes me feel like a failure, but I'm coming to terms with this condition, and realizing I have to!

I filed for work comp last spring and was denied before the ink dried on the paperwork. I haven't decided if I will pursue it again. My job is preventing from doing my job, and I don't do anything outside of work because I'm here 70 hours a week, and between sleep and TOS don't have energy for much else.

I'm going to try PT again, massage and possibly botox injections before deciding on surgery. I am starting to get issues on my left side and that has me now more worried than before.

My mom started having walking issues 6/7 years ago, and dr's discovered a missing/fused disc at c5/c6 I believe, so they "fixed" that, only for her issues to get worse. She has since lost most walking ability, speech, eating, swallowing, etc. She has been diagnosed with PSP (progressive supranuclear palsy). It is a terrible disease to watch a loved one go through. No cure, nothing can help her. So I guess it could be worse for me...

I have some anterior spurs in the C spine per 2005 MRI, but chiro said to avoid a lot of extended/extreme looking up or repeated extreme looking behind me to not aggravate it.. but no stenosis back then..

Often Work comp does deny first off , to make it harder to for any possible claimants. To discourage any frivolous claims...

We did have another member long ago that drove fuel /oil truck , long hrs, hauling the heavy hoses too..

With TOS and the other complicating factors, I suggest you interview or do some preliminary meetings with a few wc attys , run it by them and see what they say...
But don't sign on right away with any, take notes then do some research on each before selecting one..
Often they will give you a sell job, and then may not follow thru after you sign with them... TOS and complicated injuries need a good atty & good drs to back you up..

We do have a wc forum here, not super active but has info in stickys and past posts for searches.. It is quite a stressful system , but if your livelihood at young age is messed up byt the job you do, it might be something to explore.
glad you are taking clases & looking at options for change..

My neurologist told me my issues are TOS related and not neck for the time being. I'm going to assume that my TOS caused my neck issues, but I may never know. For now I am pursing TOS and getting better, and if more neck issues arise in the future, I will tackle them.

Still unsure about work comp, not sure If I need to file before continuing to be tested, and I'm getting a second opinion in a few weeks as well. I'm also thinking about traveling to either St. Louis or Boston to see a specialist to ensure the best possible diagnosis, treatment and care.

Be aware of any time limit on possible WC claim, just in case you do need to go that route.
But private Ins will get you faster treatment & better care, wc is full of delay & denials..and they will try to blame most injuries on past activities..so it is a battle..more so if you had high income..
WC would have to approve all tests, meds, PT etc...

I hope you can avoid that stress and get good care & resolve most of your issues..it often takes time to see improvements. And may be a lifelong awareness thing..
Sounds like you have a good plan ..

I am also in Minnesota. I sent you a PM with the name of a good physical therapist. I do not believe you'd want surgery with anyone in Minnesota and I have probably seen them all so I'd know. I ended up having surgery in Boston. I sent you a PM.

Hey I saw that you used to post on here quite a bit but have taken a hiatus for the last year. How are you doing now? Getting better?

I'm still in recovery mode. 2 1/2 years post op. As everyone knows, nerves heal slow. I am not in the mind frame to say 'this is what surgery has done' because I am not done yet healing. Having said that, I am doing well. =)