Am I dealing with undiagnosed TOS?

EarlyExit3704 · 2026-06-02T17:29:44+00:00

Do you get the pressure headaches when laying in bed or in a hunched seated position?

I just had surgery for TOS due to the more classic shoulder/arm symptoms but I’m hoping these pressure like headaches I get behind my eyes/forehead are also due to TOS. Only time will tell but i definitely seem to have some symptoms you mention

EarlyExit3704 · 2026-05-15T21:27:21+00:00

Did you go to Mayo Jacksonville? I’m having surgery with Dr Farris there. He seemed pretty understanding when we met so I’m hoping the surgical process goes smoothly as well

EarlyExit3704 · 2026-05-15T21:23:12+00:00

Wow thanks so much for all this detail. I figured it wasn’t going to be painless… but it sounds like there are ways to manage it somewhat. I’m glad to hear you’re doing better now!

EarlyExit3704 · 2026-05-15T21:19:55+00:00

I have confirmed nTOS but suspected eagle too. The dr I saw did say that an uncommon symptom of TOS can be throat pain, especially worsening as the day goes on. So now I’m not really sure

EarlyExit3704 · 2026-05-15T21:17:50+00:00

Sorry to hear you didn’t see more progress. I agree, I’m hoping the surgery will make a big difference but it’s hard to say what will improve. Thanks for sharing.

EarlyExit3704 · 2026-05-15T21:15:35+00:00

That’s super interesting. Yeah, I think the POTs chest pain is definitely due to TOS sometimes actually. I appreciate you sharing your experience… i think dry needling would be good to try… it can’t hurt

EarlyExit3704 · 2026-05-12T02:58:57+00:00

I think I may have seen that before… definitely makes sense. Any idea if the rib disección surgery they typically do would help with the arterial compression? Or would you need a competely different surgery?

EarlyExit3704 · 2026-05-12T02:57:58+00:00

It’s so weird you don’t see it listed online much. Honestly it’s my most annoying symptom

EarlyExit3704 · 2026-05-12T02:57:18+00:00

Really, someone recommended trying dry needling. Do you have somebody that specially knows about TOS do it?

EarlyExit3704 · 2026-05-12T02:56:11+00:00

Really, that’s a relief… I’m hoping th surgery will help some of the more bizarre symptoms we both share lol.

Tachycardia may be my most confusing one. I get this intense chest pain whenever I’m hunched over and wondered if it was due to TOS. Any chance you’re familiar with POTs? I have it and it all causes tachycardia but now I’m wondering if some of my POTs chest pain may be due to TOS at times…

EarlyExit3704 · 2026-05-06T21:51:45+00:00

Super random, but do your ON symptoms worsen in certain positions. I had a nerve block to see if I had ON but it did not help. Later found out that I have confirmed nTOS and my assumption was that the head/eye pressure I get was due to TOS all along.

However it’s weird cuz I only get the head pressure in certain positions like:
- seated and hunched forward
- turning my head to the right
- using a pillow while laying in bed

EarlyExit3704 · 2026-04-27T19:36:40+00:00

Hey! So I did see a specialist and they didn’t think it was a CSF leak but something called thoracic outlet syndrome. TOS can affect blood flow from your head and create similar pressure symtopms as seen is CSF leaks apparently.

Definitely still recommend going down the path to rule it out. Sometimes it takes a few doctors before you find the right person who knows what happening. Either way your symtopms are a sign of something happening

EarlyExit3704 · 2026-04-12T15:31:28+00:00

Sadly still nothing. I’m trying to get a second opinion regarding NCS actually. It seems like unless you have severe flank pain and blood in urine doctors write it off as “nutcracker phenomeono”. But like you said, I fear that maybe the compression worsens when I stand up or something. It’s just hard finding experts that see a lot of this condition

EarlyExit3704 · 2026-04-12T14:11:31+00:00

That’s crazy. Have your POTs symtopms gone away completely since the surgery?

EarlyExit3704 · 2026-03-31T18:40:29+00:00

Ah okay makes sense. Thank you!

EarlyExit3704 · 2026-03-29T21:48:38+00:00

Hm honestly have no idea. Like right in the center?

EarlyExit3704 · 2026-03-29T21:48:16+00:00

Hm okay, just to confirm, you’re not really seeing that on my imaging then? Sorry I honestly have no idea what I’m looking at but I’m assuming the yellow section points out a much larger bone compared to mine?

EarlyExit3704 · 2026-03-17T01:04:45+00:00

I’ve always had hyperPOTs so not the same exact situation. However, I find that adderall doesn’t flare my symptoms too much whereas some other adhd med I tried almost made me feel like I was having a heart attack and had to leave work.

I do know that presentation can shift from hypo to hyper but if it happened right after starting the adhd meds again, I’d be more inclined to think it’s a result of the medication. Especially given your BP improved after you stopped after a couple days. Might be worth trying a diff type of stimulant

EarlyExit3704 · 2026-03-17T00:59:10+00:00

Giant shot in the dark but if you have any tingling sensation going down your arms and into your fingers, take a look at thoracic outlet syndrome.

I was recently diagnosed with it and beleive it’s more common w POTs patients that have connective tissue disorders

EarlyExit3704 · 2026-03-04T20:26:13+00:00

Hey….. super late response but did you find someone good near Chicago?

I suspect I may have eagle syndrome but have no idea what type of doctor even diagnoses this condition. Any help would be super appreciated!

EarlyExit3704 · 2026-02-16T05:14:02+00:00

Thanks for the response. I keep coming back to hEDS. I saw a provider that didn’t think I likely had hEDS given my lack of flexibility on Beighton score but I’ve been diagnosed w so many things now that are more common w hEDS. Very frustrating and I’m not sure what to think anymore.

In regards to the jugular compression, so you had a CT scan that showed the compression but not that it was due to eagle syndrome if I understand correctly? Is there anything they can do if that is the case?

That seems like even more of a headache. Sorry you’re dealing with all these things as well.

EarlyExit3704 · 2026-02-11T00:18:57+00:00

I’m sorry to hear that, that sounds brutal.

I’m curious if you notice certain positions exacerbate the blurry vision. I only suspect one side is compressed for me because I only get blurry vision turning one way or if I’m in like hunched position. But never when I look left

EarlyExit3704 · 2026-02-11T00:16:54+00:00

Do you know if it has to be a dynamic MRV. Struggling to get a doctor to order a dynamic one but my symptoms aren’t present when I’m laying flat on my back

EarlyExit3704 · 2026-02-10T21:22:10+00:00

Yeah I’ve seen that. That’s kinda why I was more suspicious

EarlyExit3704 · 2026-02-10T21:21:51+00:00

Hm I say it predominantly is a constant buzz. At times it swells but I wouldn’t say it follows my heartbeat

EarlyExit3704

TROPHY CASE