@GiGi67 I have PT as well. Everything that you mentioned in first post and in order of occurrence is often found with those that develop PT, but my feeling is that they are not primary for you. I also agree with you that certain mentions probably have no involvement. One mention is IIH and with even being young, female, with maybe some weight, I doubt that's your problem. There are three areas of close relation; eyes, certain medications such as vitamin A, steroids or just brief upsetting moments of hypertension.
What you did mention that probably does have input is sinus, jaw and reducing noise by turning neck a certain way. This would indicate a vein or artery within the neck that's slow in return blood flow. Most likely it's the internal jugular vein, but it could be the vertebral artery if you ever had a hypertension neck injury. This could be just caused by lifting neck and holding it in that position for several minutes from a sitting or laying back position. If it was a twisted vein it would have shown up on your testing, but the vertebral artery which wines thru the C spine is most difficult to notice.
None of your tests would confirm the internal jugular vein except the ultrasound, but the doppler needs to have repeated movement going to the ears. A simple X Ray is another important test to note joint space narrowing, sclerosis and most important is osteophyte formation in the medium atlantoaxial joint.
Your involvement may be the internal jugular vein with sternocleidomastoid influence to your sinuses and C1 influence to the jaw as all often goes hand in hand. Any hypertension or stress can then trigger PT. A question to ask is did you have any single long extended dental care or operation where your neck was hyperextending? Another question is your PT a hum? If so, I will give you links to articles that describe my thoughts. I think that you are safe to fly and travel.
First, THANK YOU for calling me young, LOL! I am almost 52 so I will take it. To address all you posted, in regard to the vascular aspects, I would think I've had enough testing to tell if there's anything up with the internal jugular vein? I will email my friend who's the tech that did the initial U/S. I told my vascular surgeon about the PT and she ordered the carotid u/s and he (my friend) was pretty thorough but I want to make sure nothing's missed. I also do recall seeing images of all the vessels in my head from CT/CTA, MRI/MRA, etc. Nothing seemed amiss? I don't recall if my neck was done so your info re: the possible vertebral artery involvement is something I will have to check out.
I've never had a hyperextension neck injury that I recall but in 2007 I did have a bilateral submandibular sialadenectomy (due to stones in the ducts) but I'm not sure of the OR positioning for that. I would imagine my head was tilted back as the incisions are across the front of my neck. I was in the OR for about two hours, I think. I don't recall specifically having PT after the surgery. Thinking back, I do know I had intermittent PT for some time before it became 24/7 in 2015, but not back in 2007, and that seems a long stretch of time to have had an impact now, yes? I have noticed new onset intermittent PT in my right ear as well, but it's very infrequent. I've been an RN for a long time and my career ended due to a debilitating hip injury that resulted in surgery, and I also do have occasional muscle pain in my neck and upper back. I have enthesophytes in multiple spots throughout my pelvis and I do have mild arthritis in my lower and mid spine as noted secondarily in a recent abd/pelvic CT w/ IV contrast, so I would imagine it continues up into my upper spine and neck. My neck is often very stiff and does give the occasional crackle when I turn it, to the point that I am mindful about how quickly I turn my head, etc. Osteophytes wouldn't surprise me.
The neurotologist seems to think my PT is caused by thinning bone in my inner ear and that, combined with hearing loss in the left ear, is allowing me to hear the blood flow through a vessel that lies near that part of my ear. He did offer a surgery that would reline the inner ear bone but if the PT is not something that's potentially fatal, I'd rather whoosh 24/7 than go under the knife, esp. since I have a history of DVT and PE blood clots and I'm a lifer on anticoagulant medication.
As to the sound of my PT, it's synchronous with my heart, it's 24/7. Due to post-thrombotic syndrome from my blood clots, I get doppler studies done of my legs every six months, and my PT mostly sounds like that, or maybe like a fetal heart monitor if you've ever heard one of those. My bilateral ringing tinnitus is a high-pitched squeal/hum that is low level in terms of volume so it's barely noticeable but the PT is more like that whoosh of a doppler. It varies in noise level, I can change the intensity of the pitch from high to low with a very specific move - turn my head to the right then tightly tuck my chin to my shoulder - and I can make it mostly go quiet if I clench my teeth together really hard, but in both instances it only lasts for a few seconds and goes back to its usual noise level even though my teeth remain clenched or my chin tucked. While typing, I've been sitting here moving around and pressing this and that and I am able to make changes in the sound level and the pitch, so... I dunno.
Anyway... bottom line, the combo of PT of unknown cause and being anticoagulated, then purposely subjecting myself to a pressurized cabin and zooming through the air, is very disconcerting. I need to feel safe if I utilize airplane travel and my anxiety is not letting that happen despite reassurances from the doctor. I'm just going to have to say, "F*ck it!" and climb on a plane. A successful "I'm not stroked out or dead" round trip flight is the only way this will resolve for me mentally.
Thanks for your very specific thoughts, they are appreciated, and I would very much like links if you have some to share.
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