[Rachiebabygirl]

Hello I was wondering if anyone who's been diagnosed with TOS happened to have a venogram that ended up negative? I have been having severe pain/swelling in my neck/shoulders, that presents itself with supraclavicular swelling, pain that radiates down my arms,extreme fatigue/weakness of my arms especially when I raise them above my head,cold/blue extremities (but no swelling of the arms or legs), and just overall extreme fatigue. This started 8-10 years ago. This happens when I am under ANY stress, physical or mental,when I get excited and happy or sad. Every Dr I have ever been to (and I've been to quite a few!) Has been clueless about what could be the cause of this and I have had multiple thyroid tests,uptake, CT scans (for thyroid and supraclavicular swelling) MRI of the pituitary,and countless others. All of which have disappointingly come back negative. The only positive test I have ever had was for Primary Sjogrens and that was diagnosed just a few months ago. I just had the venogram today and it too came out negative. All my research points to me having TOS, which leads me back to my question: Has this ever happened to anyone else that was diagnosed with TOS? Sorry for giving you basically my life's story I'm just trying to put all the facts out there I am at my wits end and am really looking for some help. Thank you in advance for your help!

[Rachiebabygirl]

I just wanted to update my post. Since writing my post I have done a lot of research and feel firmly that my problem is undiagnosed TOS. I did recently have an X-Ray and cervical/thoracic MRI,arranged by my chiropractor, who saw something on my X-Ray. Both of which the radiologist when reading them said they were both negative (so my chiropractor is going to have a second opinion on them). I also got an appt with a local thoracic doctor that I am praying and hoping will be able to diagnose me. I have also have had another symptom come up. I now get a tingling/fuzzy feeling in both my hands and my fingertips. Thank you for reading my posts and I look forward to hearing from you and getting to know you.

[Jomar]

Often testing will show/prove nothing ( that's why many drs, don't get it)...especially if mainly soft tissue or repetitive injury related, but can still be TOS related..

[Rachiebabygirl]

Thank you for the information . I was beginning to think people thought I was crazy and that was why no one was responding. I hope you don't mind me asking but have you ever heard or come across anyone that did not have the arm swelling but had bilateral shoulder swelling (where the brachial plexus is I believe) instead? I haven't been able to find much information on it and wasn't sure if you or anyone else had heard of anyone like that. Thanks again! You'll have to forgive me if this posts twice I tried posting it a min ago and it never said anything about it needing to be checked first or showed up.

[Jomar]

Posting has slowed , usually cold/wet weather slows those w/ TOS down a bit too.

I recall past members mentioning swelling up near the collar bone/shoulder junction, some even had a specific soft but firm lump area..

Most of those posts were years back, but the TOS forum search should find some of those for you. try - clavicle or collar bone, swelling as key words..

[booklover]

Originally Posted by Rachiebabygirl

Hello I was wondering if anyone who's been diagnosed with TOS happened to have a venogram that ended up negative? I have been having severe pain/swelling in my neck/shoulders, that presents itself with supraclavicular swelling, pain that radiates down my arms,extreme fatigue/weakness of my arms especially when I raise them above my head,cold/blue extremities (but no swelling of the arms or legs), and just overall extreme fatigue. This started 8-10 years ago. This happens when I am under ANY stress, physical or mental,when I get excited and happy or sad. Every Dr I have ever been to (and I've been to quite a few!) Has been clueless about what could be the cause of this and I have had multiple thyroid tests,uptake, CT scans (for thyroid and supraclavicular swelling) MRI of the pituitary,and countless others. All of which have disappointingly come back negative. The only positive test I have ever had was for Primary Sjogrens and that was diagnosed just a few months ago. I just had the venogram today and it too came out negative. All my research points to me having TOS, which leads me back to my question: Has this ever happened to anyone else that was diagnosed with TOS? Sorry for giving you basically my life's story I'm just trying to put all the facts out there I am at my wits end and am really looking for some help. Thank you in advance for your help!

left side-pre-tests didn't show up my TOS until surgeon went in though i think there were some clinical suggestions. hardly move neck.Can't remember details so long ago. Left side one clear sign beforehand was loss of pulse when I held up my arm. Swelling not really issue blueness pain etc Had fibrous bands and damaged scalenes. extra cervical disc and vertabrae. Neurosurgeons were suspicious enough based on symptoms to do exploratory surgery.

booklover

[Rachiebabygirl]

Thank you both! When I get a chance I will use those words in the search bar. As of right now I have taken a leave from work until the first of the year, I'm hoping this Dr I am going to see will diagnose this. I'm going to start physical therapy before I see him since it seems that's what most Dr's start off with first for treatment.

[Jomar]

Please make sure the PT is well qualified and TOS knowledgeable... many in the past got worse due to standard /cookie cutter PT protocols..
PT for TOS needs to be adjusted every time due to the delayed pain aspect,if you have an increase in symptoms after PT can even a day later... then PT needs to go back to a no sx (symptoms) increase, then slowly baby steps forward.
Posture & head/shoulders forward is a issue so that needs attention..
Trigger points assessed.. if in muscles you cannot stretch or massage them away..
Trigger point information {TrPs} for short

Explore all our TOS sticky threads to learn the most possible.. for best outcomes with PT , selfcare & dr visits..

[Rachiebabygirl]

Thank you I will do that. I did call around to the PT places around me and found one that has treated TOS before that's the one I picked. I have never been to physical therapy before (not even when I broke my wrist when I was younger) so I'm a little nervous. Thank you for the TrPs info that was really interesting I will definitely keep all this in mind when I go Monday.

[Jeneu]

Hi there, I had my surgery for rt sided ntos March 2016. The surgeon I had was from Mayo...she said she NEVER orders emg, venogram, or MR because they come back negative. These tests are subjective and she bases diagnoses on symptomology. I did have all of that testing..emg was negative and venous MR study was reported as negative but a second opinion said there was some venous compression. Regardless of those test results all the symptoms were there for tos and the surgery was offered to me. Good luck, don't get bogged down with negative results..you just have to find a knowledgeable Doctor on TOS.

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