A lump under your collar bone could be your first rib. My understanding is the physical therapists (in US) can work with this (move it)… Could it be that your first rib became elevated and stuck in that position when you collapsed? I too would consider a consult with Kjetil Larsen @ mskneurology. Would be better to see someone in person, but Kjetil may be able to help understand what happened and provide guidance as to how to proceed.
Also, have a look at subclavius muscle and first rib. That muscle can spasm pulling up the first rib.
I saw an nhs vascular surgeon as a colleague from work arranged it. He was useless and said it’s a cardiology or neurology issue he organised ultrasound of jugular but I believe that was clear as I’ve never heard back.
My neurologist today said wait for the blood patch as symptoms might be all leak related but I know some of my symptoms are definitely not leak related. Think I have been functioning with a leak for years but this is different.
There is a private vascular surgeon who specialises in TOS but I can’t afford to pay out for more scans and treatment. I will go for a consultation and advice then I really do give up🥲
Everyone I read about on this group and csf leak group seems to have a procedure and realise there is another issue that needs looking at and operating on probably due to connective tissue issues. I’d have a million ops if it would fix me but it’s the cost now
It’s so frustrating that even when you pay privately in the UK you still don’t seem to get the help- I’s starting to wonder if they realise that some of our members have quite complicated medical issues and they know they can’t fix all of it, & maybe don’t want to go ahead with ‘their bit’ because a patient will complain that they’re not cured So instead of being honest they do nothing? We’ve had a few members who’ve seen some of the most experienced doctors privately here but been fobbed off…
As @Isaiah_40_31 says, it’s like ‘peeling back the layers of an onion’ sometimes to get diagnosed & treated! But no help for you
I am sorry for your terrible experiences. Normally I would not insist on seeing any particular doctor, but in your case I think I feel confident in strongly recommending that you do a teleconsultation with Kjetil Larsen at MSK neurology, as he is THE expert on TOS-CVH.
It’s definitely a vein that bulges up when I cough. My jugular also looks all knotty.
I feel because Dr T only does certain procedures he’s passed me back. Also I’m self paying so these drs know I’ll need further testing and it’s expensive.
I can’t believe we can’t even have faith in drs to read our scans correctly and I’m starting to realise that drs don’t really have a clue about a lot of things.
If you’ve not seen someone for TOS, it just might be that the ones you’ve seen are not the ones to fix your issue(s). And/or there are multiple issues which clearly can be the case, and this needs to be dealt with first. I do understand how difficult this is, just hoping you won’t give up without getting help… And perhaps you need a smidge of a break before proceeding.
And if you are moving toward the source of the problem, while incredibly frustrating, it could be forward progress by eliminating other isssues (?).
I don’t know where he’s currently located but the link above indicates he’s in medical school since 2021. His bio is interesting.
I’m so sorry for your very difficult situation especially that you’re still undiagnosed & now there’s financial hardship that may make getting diagnosed slower. I am praying that your next appointment will shed light on the cause(s) of your symptoms and you no longer feel simply dismissed.
Thank you everyone. I think I do need to take a break for a while. I will speak to the local consultant about TOS just to rule it in or out as a possibility for my vascular symptom’s.
I have my blood patch on the 15th Feb and am not expecting it to help so who knows miracles might happen.
I’ll upload my ctv scans on here as soon as I receive them. I trust the opinions of people on here over any Dr.
@kel34ban did you have your CTV done in Leeds or London Bridge? I had my CTV this week, and i guess i will have to wait for my follow up with consultant but was curious how we can actually request the scans?
I had it done in Leeds at the Nuffield hospital. I believe you can request your scans via the Nuffield but I have asked Dr Timothy’s secretary to request mine.
When do you or did you have yours done? Let me know how it goes. I feel like he didn’t discuss everything on mine but it’s my fault for not thinking of the right questions at the time as he’s happy to answer any concerns you have.
@kel34ban had my CTV done this Tuesday and appt with Mr T is 14th Feb. Thanks for advice on appt and also how to get scans - will ask his secretary once I’ve had the appointment.
These are the only images I can view and download so cannot see the ones Dr T was looking at with blood flow. Also have not got a clue what I am looking at here🤦♀️ where are the styloids in the images?
@kel34ban i think what you need to ask for is the DICOM files, they should be able to provide this to you, or at least if you submit a freedom of information request for your own medical data. Here in these images you can see only the blood vessels no bone.
@kel34ban - I have edited your images to remove your name. It’s best not to post anything that has your full name on it. If you need help removing personal details in future images, please feel free to send them to me via PM before posting on the public forum.
I’m sorry I couldn’t give you any helpful information from these images Thx, @LimeZest for providing helpful info.
I looked at your pics more closely, @kel34ban, & see what looks like your left (?) jugular vein is being compressed by another vein or artery. I don’t know the pattern of the veins & arteries well enough to know what’s what in an image like this but wanted to comment on my observation.
I’ve circled the compressed area in aqua & partially outlined (in yellow) the distended part of the IJV above the compression point.
It’s crazy how drs do not report this stuff. I don’t even know who will listen regarding this. I do know I have vascular symptoms and these will not go away with a blood patch Thank you for looking at the pictures. I haven’t got a clue what is what when I look.
he organised ultrasound of jugular but I believe that was clear as I’ve never heard back.
So instead of being honest they do nothing? We’ve had a few members who’ve seen some of the most experienced doctors privately here but been fobbed off…
and I’m starting to realise that drs don’t really have a clue about a lot of things.
Thank you for that 