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

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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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As another possible solution:

 

I had TOS symptoms for two years.  Every doctor said something different...nerve tests (painful!), plenty of drugs and no results later, I finally had surgery which actually made it quite a bit worse.  

 

About 5 months after that, I went for a massage with a therapist I had never visited before.  I told her about my arm problems and she poked around in my back...felt my neck and collarbones...and delcared it wasn't TOS, but that I had "trigger points" that were causing these problems.

 

I'm not into hippy/alternative medicine but more out of desperation than anything else, I went to her twice a week for a month and I kid you not, I was completely cured by the end of that month.  After that I went to her for bi-weekly maintenance, and just for the relaxing effects overall.  Never had a problem again.

 

Note it's very hard to find a masseuse who is really knowledgeable about trigger points - lots of them say they are, but...  anyway if you can find a good one, I'd recommend you give it a try.  In the worst case you'll just walk away at least having had a nice massage.

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Hi @lisa13, just wondering if you are currently in Munich or Berlin?  I'm looking for a good trigger point therapist in Berlin so I'd love your recommendation if you're here.  I had it done at a rehab center and it helped with the nerve pain component, but I haven't been able to find anyone to do it regularly after that. 

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I'm in Munich, as per my profile :)

 

my massage therapist was in the Boston area.  If you found somone at reha who you liked, you could ask them for a referral or even check to see if they do private work.  They might.

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Dear @fernie, can we stay in touch for the case of searching for the good trigger points specialist in Berlin?

Thanks @lisa13 - Can you tell me if myofascial release is somethinh like trigger point theraphy, or this is something else?  I wonder how to aproach searching for the good specialist here in Berlin.   

I have NTOS and don't know if surgery will help. Anyway, I will try to get to  Dr. Peter Dollinger  asap.

Thaks guys!
 

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@jeremiasz, yes of course!  I saw this review on yelp some time ago saying this person is good with trigger points, but I haven't seen them myself. Yelp is not generally where I look for treatment, but asking every doctor & rehab specialist & physical therapist for years has gotten me nowhere.  Not sure if you'd want to try them out - https://www.yelp.de/biz/yvonne-reichelt-berlin?hrid=044QpsY43eG1RRPjmJNc1w&osq=Trigger+Point+Therapy.    I wish I had awesome TOS therapist recommendations, but I've seen a lot of people over the years here, and only found people with just a basic understanding of it.  The only really experienced therapist I found was at ZAR Rehab.  But in order to go there you need to do a full program of swimming, weightlifting, writing class and so many things that make you worse. Really counterproductive.

 

Myofascial release & tpt are different, but related. Myofascial tissue is a structure that runs through the whole body.  It's the fibers holding all organs, muscles, & bones together. I like the analogy of it being like all the white fibrous tissue holding all the sacs of juice, seeds, & rind together in an orange. Myofascial release kind of tears & breaks up this tissue where it's sticking everything together too much & restricting movement of muscles or nerves.

 

Trigger points are tiny, extra tight irritated knots/nodules on the fascia.  It's a painful pinpoint that can also cause referred pain to other areas.  Both methods are often really helpful for TOS, especially if you have overlapping muscle dysfunction like T4 Syndrome or Upper Cross Syndrome.

 

As far as seeing Dr. Dollinger, I definitely recommend it.  I thought I only had NTOS, I was 100% against surgery, and I thought seeing him would not be very helpful.  But it turned out I had a really high percentage of vascular compression I was totally unaware of (I could see it clearly myself of the ultrasound which was really nice, you don't have to just take a surgeon's word for it), and the neuromuscular ultrasound revealed I had thick fibrous bands on both sides.  The years and years of conservative treatment I'd worked so hard at had only made me worse, irritating my nerves & putting me in danger of a blood clot.  It's super important to know exactly what your individual cause for compression is and what percentage (if any) your vascular compression is at. Then you can choose & proceed with conservative treatment with confidence and a better way to gauge your progress or regression.  If you have no anomalies, conservative treatment is effective for something like 60% or more of people, so there's tons of hope to improve without surgery.

 

If you do need surgery, it's not 100% successful as you know, especially for NTOS.  It is a hard road with a lot of uncertainty & difficulty.  But it's important to first know if you're one of the people who has a chance with conservative treatment or surgery is the only way.  I really hope things go well for you!! :)

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@fernie Thank You very much! Your post is very very helpful. 

I wil try to get referal for Dr. Dollinger from my Orthopedic doctor. I hope he can help to narrow down my problem.  

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