This is a more latent view of the right jugular
Your left looks less compressed at the top but looks much more compressed lower in your neck. I think the topic of possible TOS has come up in our discussions about your left side, hasnāt it, @Deanm?
We have not talked about it though Iāve read about it and am curious to learn more and how it can relate to me
I have a lot of hyper trophy muscles from weight lifting
When I engage my shoulder blades back hands fill with blood fast
Will definitely mention it in my consults
Also been told I have small caliber right transverse sinus wonder if it related to right ijv compression and a small arachnoid granulation in left sinus as well
You can look up thoracic outlet syndrome to get more information about it & about its symptoms. There have been some discussions about how itās tested for on our forum, but it does have something to do w/ raising your arm(s). Canāt remember what reaction is looked for though.
This is also worth discussion at your consults. I donāt know the significance of either but I know they are not normal & can cause negative consequences.
Thank you @Isaiah_40_31. What sort of people are we putting our faith in to let us down so badly? How can we feel so ill, knowing something is not right, to be fobbed off and gaslighted for years? It makes me angry, makes me want to cry, Iām so weary of it, for me and the thousands of others like me. If it wasnāt for this forum, I donāt think I would be writing this, I would have ended up in a psyche ward or overdose on whatever cocktail handed out to shut me up. You guys first gave me support and a listening ear. You educated me and I learned how to have a modicum of ability to peruse thus, to get scans, to put them into 3d etc(albeit slowly and not too well).
As I wait for fusion not ES surgery at present, I still need to discover the cause of repeated infections(left ear/face), currently course 36 antibiotics. No more help from GP, no referrals, extra bloods, scansā¦. Booked a private blood test to look at IGG3 sub class to look for defiency. Years ago it was my discovery to be b12 def, vit d def and now I look after that myself.
Kind wishes and massive thanks to you all in this group ![]()
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Iām glad weāve been able to help you in a small way @Mcwelly , I just wish we could help more & get you the answers & right treatment! ![]()
@McWelly - I second all that @Jules said & especially want to emphasize I wish we could give those doctors whoāve turned you away, a good shake to wake them up!! Your situation is a travesty of medical misdiagnosis. I wish I could put you on a plane to the US so you could get some opinions on this side of the ocean. Too bad the financial cost is so high for us to get āfixedā. ![]()
Thank you @Isaiah-40_31. Yes, it would be prohibitively expensive but on the plus side, all you guys have done it, researched it and provided the information and support to let others know more than we started off knowing!! Adding to the pot of knowledge and getting diagnosed is super helpful ![]()
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Belated thank you @Isaiah_40_31
Yes my left IJV is massive - maybe due to doing all the work for the right which is very compromised? No one seemed worried about these images - PA and JH found nothing odd! Iām still waiting, yes hard to believe. I havenāt posted much as Iām very debilitated now, mainly with the most severe headaches imaginable. Iāve queried a cranial leak due to the severity of headaches, tinnitus and dripping nose but just told I canāt have or Iād be really ill with meningitis. The ear pain is excruciating. Iām having Botox of left masseter next week (new consultant, private but wants to help) to see if this helps facial pain as now possibly atypical trigeminal neuralgia as well.
I hope I can report something good soon and send everyone kind thoughts for healing and help x
Unbelievable, @Mcwelly, that youāve been told you canāt have a CSF leak or youād be really ill w/ menigitis?!?! Thatās ridiculous & sounds like gaslighting by a doctor(s) who donāt know much about that sort of thing. It sure sounds like you have the symptoms that coincide with a CSF leak.
I just donāt understand how two of Britains most notable doctors could look at your scans & dismiss you. I believe youāre owed an explanation!
Iāll be praying the Botox injection(s) help relieve your pain to a great extent (completely would be ideal!). I applaud you for sticking with the hunt for answers over the long-term but am sorry that hasnāt produced more helpful answers & solutions so far. I continue to be hopeful that all youāve done will produce healing in the end.
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@Isaiah_40_31 - I can only conclude that itās my age! I have no other co morbidities - even now, only take analgesics- so as they are not incompetent- it must be age/sex related ![]()
I do wonder if it is your age, or otherwise the degeneration of your neck, as youāve said that would make it a more complicated surgery, & might not make as much difference yo your symptoms as in some patients? Just beyond belief how they can dismiss your possible CSF leak too, not many people get meningitis with that!
Thinking of you
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@McWelly - Is age discrimination a problem in the UK? Iād never thought of it being a situation encountered with medical care only with employment, but what youāve said makes sense that it could be. I still think outright dismissal is just wrong & it would be better for a doctor to be upfront with a patient about why (s)he isnāt willing to proceed w/ that person than just denying thereās a situation!
Hi @Isaiah_49_31 - I believe there is discrimination in the forms of age and sex and race. We are an ageing population fact. Here in Dorset, particularly so. Women are more likely to be dismissed, misdiagnosed and wait longer for diagnoses. Deaths from cardiac causes are higher in women who are diagnosed later and receive poorer treatment than men. Elderly people spend longer in AE waiting and being treated in corridors. Black women receive less analgesia than whites women and mortality rates are higher for black women giving birth. Iām not citing references, these can be checked out.
If you add any potential anomalies of anatomy, co morbidities etc, surgeons, I believe, will choose the easier patients to get the lists down/improve their kudos/gain their notches.
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Sadly I have to agree with you ![]()
