What are your symptoms and imaging results?

Which medical profession has a policy of not charging for services rendered if you are not satisfied? MD? Chiro? Massage? Osteopath? Nurse? PT? Surgeons in any field?

I understand your complaint, but it's universal across the medical field.

Well the person said that you leave once your pain is gone. So if the pain doesn't disappear in the 3-5 days, you could end up spending weeks, months, or years there? All under the same fee or is it a daily rate?

There is an episode of Curb Your Enthusiasm in which Larry David makes a deal with an acupuncturist that if his neck gets cured, he gives the acupuncturist $5000 dollars. If Larry still has pain after the treatments, then the acupuncturist gets nothing.

So clearly it's been done before.

http://www.youtube.com/watch?v=0oVqqD0YFq4

I'm new here, and have read through this thread.

I'm trying to find someone who is willing to even do whatever he/she needs to do in order to get me a diagnosis of TOS or say I don't have it (but symptoms tell me I do have it--7 months now).

In NE PA, so there are no TOS specialists near me, I'd have to travel.

I'm curious about the above post by Msudawg89. He/she talked to "him"--does that mean Dr. Stoxen himself? If so, I'd love to find out what your gut feeling was about the man. Fast-talker? Listener? Enough info passed along for you to be satisfied with the conversation?

I think I might be able to due a conservative treatment approach, and I'd like to include yoga poses that stretch the appropriate muscles, which I think are the scalenes and maybe the muscles across the chest area?

I've read that a good MT who knows about TOS can work the scalenes thoroughly enought that it's painful, but relief from some pain from TOS is the end result.
Has anyone heard of this technique?

So why don't you go to a nearby vascular surgeon or two to get a diagnosis?

How far are you from Cleveland or Boston? Daniel Clair is at the Cleveland Clinic, and Dr. Dean Donahue is in Boston.

Dr Stoxen
 

If you research you can probably find a chiropractor or a DO that can diagnosis for sure TOS. I emailed Dr Stoxen at Teamdoctor. Google for the exact email. He gave me a time to call. I did talk to him. He does sound like he knows his stuff. One suggestion I have living with TOS is to have a MRNeurograph. I think you said you live in PA. There are two MR Neurographs in PA. One in Pittesburg and one (Kin of Prussia). This would tell you exactly what type of TOS you are dealing with and which treatment is right for you. Many specialist believe removing the rib is always the answer and that simply is not the truth. Once you know what is involved you will know where to go for treatment. If you want any other information from me please just send me a message. I would be happy to talk to you about mt experiences. I spent hours researching TOS and haven't stopped. I was scheduled for a rib resection at Baylor in Dallas. My neurologist disagreeded and sent me to Santa Monica to Dr Filler. The MR Neurograph showed I had compressions before and after the rib. My surgeon was able to confirm exactly which TOS I had.

I had three MRI guided procedures that worked on releasing the scar tissue with medication. I ended up having surgery. My Neuro surgeon removed all the scar tissue that was wrapped around the thoracic bundle and scalene muscles. He also cut the occipital nerve away from scar tissue on both sides and that relieved the excruciating headaches. I am still suffering from nerve pain. I have MRI that shows herniated disk at C4-5. I have reports from DO that i am winging and have swelling in shoulder joint.
Is that what you were asking for?

Why? Because until you wrote that, I didn't know which type of doctor can properly test for TOS. I'm at a total loss at how to find out what's really wrong, but all my symptoms are those that occur with TOS. My doesn't believe it's a possibility because my hands are blue, that's her reasoning.

Also, a vascular surgeon deals with arteries and veins, correct?

I get severe pain when I move my arms behind my shoulder or raise them above my head. That would suggest that nerves are being impinged, I guess. WIth my arms resting on my lap whilesitting or at my sides,there is no pain. I don't have any numbness or tingling.

Would a vascular surgeon put my arms into the positions that cause pain and be able to diagnose my problem? So far, a neurologist and orthopedic surgeon haven't found anything. Both tests by these doctors did not involve touching my arms once. I'm lost, and scared, and don't know who I'm supposed to go to for a diagnosis.

I'm 350 miles from both Cleveland and Boston.

Are those M.D.'s or P.T.'s? Thanks :)

I'm seeing a DO--one that I had to find that was highly rated. I travel over an hour to see her, and she doesn't seem to want to address TOS at all because she thinks my hands should be blue and there should be pain all the time, which isn't the case for me.
I'm new in my area and the closest doctor of any kind is 45 minutes from me.
I found the list of DRs & PTs in NY, so I guess I'll have to go to one of those to get a diagnosis.

I never heard of a MRNeurograph. Can my DO prescribe this? I would go to King of Prussia if it would help me. Thanks :)

Hey MIM,

I also didn't know about vascular surgeons until I got to this website. You need to start seeing several vascular surgeons right away.If it's not too much trouble, set several appointments so that you can get as many opinions as possible. If they are good vascular surgeons that know TOS, then they will put your arms in different positions. Just search for vascular surgeons in your area and call them up and ask their assistants if they treat TOS and if so, how frequently. Go to the ones that have many TOS patients.

I'm not sure how far you are from Pittsburgh, but the only guy I know of is Dr. Timothy Wu. He answered a question of mine on healthtap.com and he knows about TOS. Also, it looks like he takes many different insurance carriers.

http://findadoc.upmc.com/PhysicianBi...?EPCDID=138997

Another thing you can do is to request a brachial plexus MRI with your arms above your head, so that it will hopefully show the compression causing your symptoms.

Surgeons/MDs

Maybe you should start a new thread and we will do our best to help guide you in navigating treatment options.

My DO didn't believe I had TOS either.

By the way- I got an MR Neurogram, which didn't show anything at all. Then, I went to Dr. Collins at UCLA Radiology, who may be in the top 5 people in the world that understand TOS, and he showed me all sorts of compression with a MRI/MRA/MRV. He said to throw away the MRN and that it is complete crap. MRN's also are tough to get approved my insurance.

If I were you I'd stay away from chiropractors at least until you figure out what's wrong. --by someone with an MD, and really knows about TOS and similar problems. Many doctors don't know TOS even when they claim they do. I went to Mayo Clinic and was told by one of their top Neurologists that I have an "unknown brachial plexus problem and should continue taking pain managing medications until symptoms improve" even after I told him I'd already gotten the TOS diagnosis, but he and his colleagues rejected it- without doing any arm maneuvers. (I went because i had the appt date for several months and only got the TOS diagnosis days before the trip)
I insisted on an ultrasound just hours before my flight home, and he called me the next week with the results with his tail between his legs, telling me that my subclavian artery experienced high velocity with my arms in the 180degree position.

If the DRs don't touch you , that is a big sign, IMO.
At the very least they could refer you to an advanced PT for evaluation, those PTs that are highly skilled w/ extra training & experience will do the hands on tests. Then a eval report can be made to the Drs.

But it sounds like you need a lot of help getting thru this, please make a new thread for yourself, or let me know and I can make one for you if you need help with that.

Many drs say or think they know about TOS, but they only have a very limited or mistaken idea of it.:(

See or drs list sticky thread and our useful sticky thread, it will give you a major crash course on TOS.

What did the collins mri show? And do you think it is worth it?

Oh yes, I really don't think there's anyone that knows TOS more than him. He saw all kinds of compression both in relaxed and hands-up positions. He told me what my symptoms were before I told him. for example, no doc has been able to explain the leg pain/tingling/numbness that I have developed in the last couple months. He knew that it was there because of blood getting diverted away from my spinal canal and to my arm because of compressed arteries that weren't getting blood to my arm.

After the 1-1.5 hour MRI, we sat in his office for around 4 hours going over all of my images. I just wished that I had more pain medicine with me because I wasn't able to fully concentrate, ask questions, or enjoy the great man that he is because of how much pain I was in. I hope to talk to him on the phone in the next couple of days to ask my remaining questions.

The report hasn't been completed yet, he normally takes about two weeks to finish it. He said he spends the initial 4-5 hours with the patient, and then spends another 4-5 hours doing the dictation for the report later. I'm definitely going to post the report on here once it's done. I'll never go to any other radiologist for TOS again.

Thanks- I just have NTOS and Degenerative disk disease with Osteophytes and foraminal narrowing in my neck.do you think he would be able to tell where the pain is coming from? Is your insurance covering it all?

Yes, he will be able to see what compression, if any, is going on. I don't believe that he does cervical MRI's and I don't know if he'll be able to comment on that. I also have an MRI report that mentions foraminal narrowing, but I've had several spine surgeons say that it is very mild. I plan on getting a cervical epidural in the next few weeks just to make sure I don't get any pain relief from that before I go into TOS surgery in a month.

My insurance does contract with UCLA but my claim got denied because I unfortunately wasted authorizations getting a brachial plexus MRI from a radiologist that doesn't know TOS and also a (according to Collins) pointless MRN. Hopefully the doctor that ordered it will help me to appeal it.

He also says there is no such thing as only Neurogenic. He says that by nature, nerves have blood flow, so it is always vascular as well.

MR Neurograph
 

You don't ha e arterys involved if you arm doesn't turn blue. A vascular surgeon wouldn't help. The MRNeurograph would help diagnosis exactly which TOS you have. You probably have nerves involved and as long as you don't raise the arm you are not irritating it. Doesn't mean you don't have TOS. Sounds very possible. Google MR Neugraphy. I don't think you need another doctor to order it. They can probably just work it out. Hope this helps.

I had same experience at Mayo Clinic and Cleveland Clinic. They both said I needed a psychiatrist. I have tried to talk to both about their diagnosis. I have absolute proof I have TOS that involved a couple of kinds

My arm has never been blue or white or experienced any other discoloration, but Dr. Collins' MRI/MRA/MRV showed compression of my subclavian artery. An ultrasound that I mentioned earlier shows it as well. A vascular surgeon will help you. I hope that you listen to the good advice given on these threads and weed out the poor and uninformed advice.

Have you chosen a surgeon for your surgery? Did Dr. Collins recommend surgery for you? Just wondering because a few ppl on another TOS forum said he has steered them away from surgery.

I'm meeting Dr. Gelabert tomorrow and I'm pretty sure that I'm choosing him. Dr. Collins said that he doesn't tell patients what to do because that is the surgeon's job. He did say that he would definitely give PT a shot before going into surgery, and if I do go into surgery he recommended Gelabert. I've been in PT for the past year (without the TOS diagnosis) and currently seeing Ando & Aston. Unless something changes soon with Ando, I'm going forward with the surgery.

That's fascinating because I also have the leg symptoms on the same side as my TOS and often felt there could be a connection between them, but didn't know what it would be.

Does the MRI help show the specific areas of compression, such as scalene triangle, clavicle and pec minor? Did you get more details out of this on why/where you have compression? And if you did, would that help the PTs?

Quite a few of the long timer's w/ TOS would eventually mention low back or hip pain.

I think there is an image or sketch in the sticky thread.. on how we can get tilted , partially due to pain or protecting of the worst side..hmm can't find the one I was thinking of.. it was a simple stick figure drawing...

Basically it is partially due to how the fascia is all connected, and the whole body compensations we make for usage or to avoid pain.

this site touches on the "whole" misalignment issue-
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2953353/

A well rounded whole body therapy approach is best, don't focus only on hands, arms, neck etc..

Make sure u dont have a trendelburg gait re: legs and tos

So if i passes my doppler test, i do not have vasc tos right?

Yeah, look into the Batson's Plexus.

Yes the MRI showed the compressions. I'll post or send you the report when it's complete. I was in too much pain during my visit with him to comprehend everything that he was saying.

I'm not sure if it will help the PT's much but I plan on sending everyone I work with a copy of the report as soon as it's done. (I also plan on sending a mass e-mail with the report to every doc that has misdiagnosed me in the past 2 years)

Dr. Collins thinks the reason I developed TOS is because I put on too much muscle for my small body frame. I'm currently 6' 170 pounds but when it first started I was a muscular 6' 210.

Did you see my response to you about deferred payment for medical treatments?

Hmm, no. Link?

And how much is it anyway? His page at http://tosinfo.com/ doesn't say or give a link or other contact info to make appts afaict. Maybe I missed it...

Here's the link that proves my point
http://www.youtube.com/watch?v=0oVqqD0YFq4


How much is it? it's done at UCLA radiology not private practice so it is whatever your insurance company's contracted rate is with them. search UCLA dr. collins and you'll see his page and appointment line. it may take around 1-2months to make the appointment.

Vascular surgeons
 

Not every vascular surgeon who claims to treat TOS is knowledgeable enough to treat TOS. I had all the MRIs and ultra sounds as you did and nothing showed up. TOS is very hard to diagnosis. The MR Neurograph was the only test that showed my compressions. Doctors usually prefer their own test. There are several types of TOS and not all involve arteries and veins in big degrees. I think we all end up at the doctors who are more specialized with our conditions. My compressions of the artery were not see or found until I was in the operating room. We all are just relaying our personal experiences and they are not all the same.

Much about TOS is dependent on plain old luck, IMO
Some tests will show things , some drs will know things and lucking out by finding good help early on is usually the best thing.

Long Thoracic Nerve Injury (Palsy) and Brachial Plexitis
 

Hi guys,

I am a 28 yr old female who was diagnosed with Long Thoracic Nerve Palsy and Brachial Plexitis, if that means something to you.
I had a terrible accident on a boat and shattered my ankle but didn't notice any trauma to my shoulder. it was only after a month or two of being on crutches I noticed scapular winging and an inability to lift right shoulder over my head.
I assumed it was tight muscles due to crutches and ignored until a Physiotherapist urged me to see a Neurologist. The Neuro said that nothing could be done about my nerve injuries and that it may heal, and may not.

I have very little quality of life, have severe chronic pain in my neck and haven't been able to work in over a year. I have seen a chiropractor, and massage therapists and all the treatments help only very temporarily and are very expensive. I have run out of money and am running out of will. I just saw a rehab physician who told me it could take 3-5 years to get better. How is one supposed to support themselves and live with chronic pain on a daily basis. Even sleep is very uncomfortable I am sorry to whine on here but feel VERY lost and alone.
Any ideas or suggestions would be greatly appreciated. For anyone else suffering with similar problems, I have switched to an electronic toothbrush and many kitchen gadgets such as the slap chop and a blender to help with cooking as that was a serious contributor to my pain. I have not noticed any improvement in 1 year. I am considering acupuncture, but again, is costly and may not help :(.

Hope to hear from someone, anyone!

Thank you for listening

He. Doesn't Believe in surgery Bc he's a DC!

Long Thoracic Palsy
 

Be careful with acupuncture. You might try acupressure. The acupuncture irritated the nerve. I have damage to the long thoracic nerve as well my NeuroSurgeon says it takes a long time to heal. He did prescribe some compound pain medications. They help some. I feel your pain. I can't use my left arm much. I have chronic pain. Butrans patch has helped with pain. Also taking three 200mg twice a day helps the muscles. It is a natural relaxant.
Hope this helps. Happy to talk anytime.

Are you able to apply for Social Security Disability?

Did you ever check him out?