Hello, I am new here and hoping for some guidance please!
I have TOS and have had 3 TOS surgeries. At a TOS follow up last week, I had an ultrasound.
It shows IJV velocities from 44 cm/s in the proximal segment, 132 cm/s in the mid IJV and 55 cm/s in the distal IJV. The mid subclavian vein appears narrowed with a peak recorded velocity of 88 cm/s. No clots were seen.
I have a pretty terrible dental pano to try to find my styloids on and it really wasn’t a help.
I have a CTA/CTV scheduled next month along with an appointment with Dr Hepworth.
From what I’ve learned in my ES crash course, is it reasonable to think I may be put on blood thinners while waiting for a surgery date? Possible stenting of the subclavian?
fully understand none of us are docs, just people with long medical journeys
In the middle of a couple things, but just wanted to send a quick note to say if you did a CBCT dental panoramic… You can download radiant viewer it’s a free trial. And that should give you a good view of your styloid in relation to your cervical structure C1 C2 etc…
There are tutorials on radiant viewer, just search in the search bar. It’s super simple. As I said, it’s a free download, you upload your images and then there is a 3-D selection at the top and you should get your 3-D view.
I’m not knowledgeable about the velocities in the veins, so I can’t comment on that, but would say that it’s great you have an appt with Dr Hepworth, many members have seen him and he sounds pretty thorough, and keen to get to the bottom of all issues.
Yes, lots of members have been put on plavix to help while they wait for surgery. I would read up about stenting; it can cause pain and can’t be removed, so should be thought about if you might need it. Not sure about the subclavian vein, Dr Hepworth works with a vascular surgeon as well.
Hopefully one of our other members with more knowledge will comment!
Hello and welcome to the forum @Nikkimm
So sorry to hear your going though TOS,Did they do a complete rib removal , or other types of decompression for the subclavian Vein?
I saw Dr Hepworth as well and have had the best results with him. He is pretty awesome to work with and has made me feel very comfortable as a patient while keeping me informed as to his findings and suggestions .
I also was put on plavix (blood thinner)after the IJV was seen to be an area of compression, and oh boy was it the best thing for me at the time.
I am not usually one to just pop pills and see if it works kind of person, but I was desperate for some sort of relief from the head pain and tinnitus. Because I saw a great reduction in symptoms, my doc told me this was a good indication the the decompression of the vein would likely also provide lasting relief. And so far so good
Dr H did my left syloidectomy as well as a right ohmahyoid resection to free up the right IJV compression.
Prior to my surgery with Dr H, Two vascular surgeons did assessment for TOS as well, but my compression was found mostly to be in the brachiocephalic vein, and told that the Right IJV compression was likely not the cause of the arm problems.
Told not classic TOS
the rib resection was the only option offered from the two TOS doctors who did the op in my state. I had suffered a loss of strength in my right arm and forearm felt cramped and got worse when I tried to grip or use my arm,
After my evaluation with Dr Hepworth For VES he suggested the omahyoid resection, due to adhesions as well as styloidectomy.
Although my mind had raced as to other options or maybe just do one area at a time of go back for another docs evaluation or etc…
I went ahead and put my faith in his abilities to read my individual needs and prescribe the best treatment he could offer.
Now going on just over a month after surgery,I have my arm strength back and my arm feels normal again after over a year of limited use and pain.
As well as major reduction in head pain and brain fog,etc.
It feels like I am finally getting my life back on track.
I am hopeful that he will be able to help you find some answers and that you are pain free soon
Wishing you the very best
My TOS was thought to be all neurogenic until last week! I’ve had my rib, scalene and PMR out, as well as a redo due to scar tissue. I’ve had a couple other nerve related surgeries as well- it’s been a very long journey- several years like many of us here. I am hopeful something as simple as a blook thinner can make a difference!
I’m so glad to hear you’re feeling better! How long was your wait for surgery after you saw Dr. Hepworth?
I had my first meet in beginning of March and the op was scheduled out to September 13th. They also may have a wait list for cancellations that you could request to be on, The day before my op I was told there was a cancellation and my op was moved to the morning instead of afternoon.
I have the same problem understanding the blood velocities as @Jules. Though one or more people on our forum have explained how that works, my brain hasn’t retained the info. It does sound like your numbers are sufficiently off to be causing symptoms, though.
One request…It’s probably common knowledge for you, but please define your acronyms. Example, TOS…What is it? One of the problems common to the forum group members is traumatic brain injury. Having a blocked jugular vein complicates it because of the constricted blood flow. Thank you …Happy Bear
TOS is thoracic outlet syndrome…
Good explanation here from @vdm
“Elongated styloid processes in my case, seemingly, would constantly irritate various nerves and other structures in the neck, causing bunch of muscles to spasm trying to immobilise the whole neck. Some of those muscles are… scalenes. And scalenes are attached to the first and second ribs (not going to go into the details which scalene is attached where, that’s not the point). So when they contract, one of the effects is… the 1st/2nd ribs elevate. That helps to inhale deeply as it expands the volume of the chest. But if the scalene muscles remain spasmed and don’t relax, those ribs (or one of them, usually the first) remain elevated. And potentially pressed against the clavicle… …compressing everything in between. That’s exactly what TOS formally is. Blood vessels and/or nerves compressed between the first rib (or cervical rib if one exists) and the clavicle.“
Dr. Hepworth is the bomb!
He first put me on Brilinta. It didn’t do much. I am now on Plavix. Not much of anything yet. I have pretty bad blocked blood flow so I am not sure it will even help.
Surgery is scheduled for February in Denver.
I tried Brilianta for 2 weeks. I have only been on Plavix for a few days. I am not overly hopeful. My right collateral vein has constriction at base of skull constricting flow capacity and affecting my jugulars. My right jugular is compressed between my C1 process profoundly. Hepworth also noticed my thyroid isn’t even sitting in the right place and being croweded by my omyhoid muscle and it is impinging on my jugular vein. He will also do a partial or full thyroid removal.
This is incredibly helpful, thanks so much. Very reassuring to know it’s possible to have surgery pending while trying meds. Also new knowledge that the thyroid can be involved. I’ve had thyroid issues for years and recently nothing has been able to keep my numbers in check.
Thanks Brandy. I hope you have some relief soon and surgery helps!!
Hello @HappyBear
I also suffer from mTBI( mild traumatic brain injury) and many times have a hard time following along with the wealth of new information as well as the many acronyms.
Your not alone here and please forgive me for not being more clear
Trying to become informed to make good decisions is difficult with brain fog and the many symptoms of vascular eagles syndrome, TBI, venous congestion …etc
TOS like has been mentioned is “thoracic outlet syndrome “ an area between the anterior and middle scalene muscles, called the scalene triangle or thoracic outlet where there is compression of arterial or veinous structures that are symptomatic and causing problems. There is also a nerve compression type called nTOS which would be neurogenic TOS, that in general affects the brachial plexus ( bundle of nerves) and has a different symptom pattern than the vascular type.
There does seem to be a group of people that have both TOS as well as eagles syndrome, although I am not well researched in this.
Here is a link to my favorite source on TOS
“Tos MRI “ Scott has many really good informative videos and Doctor interviews that help to explain it well.
I chose this video because they talk about vascular health and what we can due to help heal internally as far as vascular goes.
I enjoy this site as well there is just so much info here on many many things
In general I am led to believe that TOS can be in more than one spot, and treatment is specific to the area of compression.
With a first rib removal being one of the common most successful procedures.
Just a patient, but if I can be of any help at all please reach out to me here or personal message
As a confused patient overwhelmed by all the possibilities of treatments and syndromes I often have been just so over it all.
However finding this forum has been one of the many blessings I have received. I am so grateful.
It has really helped me to connect with people going through similar struggles, I had felt so alone in all this for so long, but no longer.
None of my pear group could understand what I was going threw daily
We were here for you my friend
Sending you positive healing energy your ways today
