Anyone in Berlin have Thoracic Outlet Syndrome? Need specialist, PT tips

4 posts in this topic

I've recently been diagnosed with NTOS.  Does anyone know of or have personal experience with TOS specialists or Physical Therapists in Berlin? 

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Hi Fernie,

I know that was an old post but maybe you'll read this.

I think I have a problem like NTOS, I'm a guitarist and since years I've problems at my shoulder and arms, paresthesias, frozen arms, pain in the clavicle and scaple.

I already tried some doctors and phisioterapic treatment but with no result.

Which specialist did you go to get your diagnosis? And was you able to fix it at the end?

I'll be very thakful for some help. Best

 

Davide

 

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Hi Davide,

 

I'm sorry to hear if you might be struggling with TOS. After 10 years, I did find a specialist, had 2 surgeries, and am now doing my best to improve my quality of life. I'm bilateral VAN, so the surgeries improved my vascular compression, but I'm still in the period of higher post-op nerve pain unfortunately.  There are not always quick fixes with this condition, as it can be hard to diagnose and hard to treat, but many have good outcomes if they get a diagnosis & treatment early. You must see a TOS specialist, because you often just get shuffled around with other doctors because very few tests will show it.  Many doctors know of it and feel qualified to diagnose, but it takes a specialized knowledge of how it presents as it can be complicated.  It is a diagnosis of exclusion, it does not show on typical tests - MRIs, CTs, X-rays, or Nerve Conduction Studies/EMGs.  These tests are very important though in order to rule out other conditions or anomalies.  If you've read up on it and feel you match the symptoms, just go straight to Dr. Dollinger, don't mess around.  If he rules it out, and it's something less complicated, then wonderful.

 

The specialist in Berlin is:

Dr. Peter Dollinger

DRK Kliniken Berlin Mitte

http://www.drk-kliniken-berlin.de/mitte/krankenhaus-mitte/klinik-fuer-vaskulaere-und-endovaskulaere-chirurgie/

He's a vascular specialist & will do observational tests, a vascular ultrasound, and possibly an angiogram.  And send you for X-ray, MRI, EMG if you don't have recent ones.

 

He'll give you a referral to Dr. Josef Böhm, a neurologist.  Dr. Böhm does a neuromuscular ultrasound that can see nerve compression, a cutting edge and usually impossible to get test.  Without this test, you just get bumped around neurologists who give you EMGs that generally show nothing.  https://www.neurologie-adenauerplatz.de/de/team-neurologische-privatpraxis-berlin/dr-josef-boehm-phd

 

For general neurological tests he also sent me to Dr. Roland Nohr.  He's familiar with TOS and has been working hard to help me reduce nerve pain.

https://www.hilfelotse-berlin.de/detail/db/berlin/Arztpraxis-fuer-Neurologie-Dr-med-Michaela-Schlote-Dr-med-Roland-Nohr/aid/3468/

 

If you'd like to read posts in a support group to help diagnose yourself better/learn more, join  https://www.facebook.com/groups/TosSupport/

It's the biggest TOS support group I know of, peeps are mad smart, and there's a files section. There are over 3,000 people so there's no pressure to talk or introduce yourself.

 

 

Don't hesitate to ask anything else or send me a message. Best of luck!!!

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Hey Fernie

 

I just answer now because I was not hoping to get something from that old topic and I didn't think about it anymore.

But I went on the page and I find your great answer. Thanks a lot for the great suggestions!! I just got a prescription for a neurological visit and I was starting that moment in which I ramble between doctors that say different stuff, losing a lot of time. So, I'll go to the neurologist that you suggest me and I'll get a prescription to go also to the vascular specialist. My problem are not big (in terms of pain), but as a musician are really annoying and I'm always playing with frozen and half paralyzed hands.

So really thanks a lot for the advices, I let you know how things go, hope you'll get better soon.

Cheers!

 

Davide

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