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-   -   Long first post. Are these symptoms TOS? (https://www.neurotalk.org/thoracic-outlet-syndrome/253838-post-symptoms-tos.html)

Jaug 06-19-2019 10:36 PM

Long first post. Are these symptoms TOS?
 
So hereÂ’s the long story of my last six months for anyone with time and energy to help. Thank you in advance!

In late January I started noticing chest tightness and pressure, it increased quickly and within a few days I was in severe discomfort at least 85% of the day.
First visit to a fast clinic: Chest X-ray, d-dimer and EKG all look good.
Four days later I was sitting in floor playing with my daughter (with near ever present chest pressure) when I suddenly had a sensation radiate through my upper body. Hard to explain this sensation, it was like a radiating weakness, somewhat tingly, almost like a flood of relief (like if you almost fall but donÂ’t), loss of grip and blurred vision. It lasted less than one minute. I went to the ER.
First visit to ER: they did the cardiac blood work, chest X-ray, EKG. I did have high blood pressure but nothing looked abnormal like any cardiac event (switched to plant based diet and no longer have high blood pressure) had happened. They told me to take care of my hypothyroidism (something I had been neglecting) because it could cause vasoconstriction.
I got back on thyroid medicine. The chest pressure, now accompanied by throat tightness continued. Some days it was present 50% of the day, some days it was 100%.
I was sent to cardiologist. I had another EKG, a stress test, 48 hour heart monitor and echocardiogram all within the next two months. Everything looked normal. My symptoms continued.
I was sent to gastroenterologist. I had upper endoscopy which came back with some inflammation but nothing notable. I was given proton pump inhibitor and instructed to take it for 14 days to see if it alleviated symptoms. By this time I had realized my only consistent relief was while lying flat on my back and my symptoms began within 10 minutes of being upright without ever eating or drinking in morning, so I felt there was no way it was acid related, but I finished the 14 day treatment anyway with no relief of symptoms.
I had the nerve-y sensation radiate through my body 4 more times in the last three months along with shortness of breath and left side neck pain, left shoulder blade pain and occasional headache.
At this point I was almost crazy with worry. I saw online something called cervical angina so last ditch effort I went to the chiropractor. He asked many questions and said “I’m pretty sure I know your problem and I know I can help. You have thoracic outlet syndrome.” He asked about things I’d never taken note of before, like how I woke up with my fourth and fifth finger numb often, how my left shoulder ached often and my left wrist and forearm burned often. I have experienced those things for a few years but just never worried about it. He told me it was all connected and we decided the high intensity workout program I began January 1 and continued until chest pain was bad around January 23 may be the culprit to the TOS presenting as chest pain. With xrays we also discovered I have mild scoliosis and have lost curve in neck from forward posture.
I’ve been going faithfully for six weeks. He’s a wonderful and caring doctor and I certainly feel better when I leave his office. I can physically feel the tightness in my left side of my neck and collar bone area so I know there’s a problem there. . HOWEVER I am not sure all of these symptoms are TOS or if it’s a “flare” like I’ve read about on here, how has it lasted six months? I’ve searched this site and others and I haven’t yet found many accounts of such prolonged, severe chest discomfort with TOS. And my symptoms are so often I can’t find what may be triggering them or making it all worse.

My daily symptoms that inhibit quality of life:
-Chest pressure (6-9 on a 10 scale) for the majority of the day mostly just left side of chest begins within 10 minutes of being upright and resolves almost fully within 10 minutes of lying flat on back.
-Shortness of breath
-Neck pain most just left side
-Feeing of being choked
-Left lower rib pain

Daily symptoms that take a back seat:
-Left shoulder ache
-Left elbow ache
-Left shoulder blade pain sharp

Weekly symptoms all left side:
-Burning feeling in armpit
-Numbness in 4th and 5th fingers
-wrist burning/pain
-Forearm pain

Has happened since January:
-Radiating nerve sensations
-Dizziness
-Fatigue
-Left side headache
-Left eye blurry vision
-Ringing in ears


Anyone have these symptoms? Anyone have tos present this way?

Jomar 06-20-2019 12:09 AM

Yes many of them.. check out the sticky threads above on TOS thread list page..

[-Chest pressure (6-9 on a 10 scale) for the majority of the day mostly just left side of chest begins within 10 minutes of being upright and resolves almost fully within 10 minutes of lying flat on back.
-Shortness of breath
-Neck pain most just left side
-Feeing of being choked]
OH Yes!!! My top rib was stuck in raised position due to severe muscle spasms

If you read the thread just before yours I mention top rib mobilisation by expert PT & then by very good DC (after I told him about what the PT guy had done and how many symptoms had went away after) ) along with other things that can help..

It is not a quick fix condition, I went to DC a lot durign the worst of it, eventually tapered to once a month then every other month..plus all the home posture work & far infra red heating pad, IF stim and tennis ball trigger point work..
If working or doing problem activities it takes a lot longer..

Jaug 06-20-2019 07:32 AM

Quote:

Originally Posted by Jo*mar (Post 1276673)
Yes many of them.. check out the sticky threads above on TOS thread list page..

[-Chest pressure (6-9 on a 10 scale) for the majority of the day mostly just left side of chest begins within 10 minutes of being upright and resolves almost fully within 10 minutes of lying flat on back.
-Shortness of breath
-Neck pain most just left side
-Feeing of being choked]
OH Yes!!! My top rib was stuck in raised position due to severe muscle spasms

If you read the thread just before yours I mention top rib mobilisation by expert PT & then by very good DC (after I told him about what the PT guy had done and how many symptoms had went away after) ) along with other things that can help..

It is not a quick fix condition, I went to DC a lot durign the worst of it, eventually tapered to once a month then every other month..plus all the home posture work & far infra red heating pad, IF stim and tennis ball trigger point work..
If working or doing problem activities it takes a lot longer..



Thank you for your response. I’m still figuring out how to navigate the site. I’m looking at sticky threads now. My chiropractor told me it takes time. I just haven’t felt any consistent improvement so I got to wondering if it’s possible other things are happening. Good to hear TOS can cause these things. Maybe I should check into PT also?

Jomar 06-20-2019 09:21 AM

My chiro did PT type modalities also, massage, trigger point, ultrasound, IF stim, low level laser, plus the upper cervical (c1 c2) adjusting.

If yours dosen't do anything but adjust - then yes, search out an advanced PT for the best experience & knowledge..

The more you learn from the stickies will help you to decide if they are good or not..
Don't stay with anyone that is not helping, or makes you feel worse..

gigicnm 06-24-2019 11:45 PM

PT may help in addition to chiro, but getting an accurate diagnosis is important. You will most likely need a referral to PT, so start by seeing a doctor that specialized in TOS (often a thoracic surgeon). If you let us know what state you live in someone on this forum may be able to suggest a local doctor.

Jaug 06-25-2019 07:28 PM

Quote:

Originally Posted by gigicnm (Post 1276893)
PT may help in addition to chiro, but getting an accurate diagnosis is important. You will most likely need a referral to PT, so start by seeing a doctor that specialized in TOS (often a thoracic surgeon). If you let us know what state you live in someone on this forum may be able to suggest a local doctor.

That’s my main thing. I just want to be positive that TOS is accurate diagnosis.
I live in Tennessee.

Also I have an appointment with a neurologist in mid July. Could that help get accurate diagnosis?

Jomar 06-25-2019 09:30 PM

Often a TOS dx is a process of ruling out other things, then factoring in your sx..
TOS is a slow dx process.. Many MDs have partial knowledge if any.
They prefer something to clearly show up on testing or imaging.
For best results , find a well known TOS Doc..

Dontbeamelvin 06-28-2019 02:01 PM

Please read my droopy shoulder syndrome post and see if it could pertain to you. Best of luck in your recovery. I know your pain.


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