My name is Cristian, after a throat infection in 2017 things started to go downhill for me, I am 31 years old from Romania. I have been seen by a few specialist in Europe everyone coming with a possible hypothesis and diagnostic. The single diagnostic that stands is Mast Cell Activation Syndrome, Hypermobility without a hereditary component and cervical instability, and vascular compressions.
I have a mild CCI/AAI instability diagnosed by a uMRI, and in-person consultation by Dr. Gilete in Spain, which I am managing doing remote PT with Doctor Mike:
I have improved and gain some quality of life with the PT.
My disorder became worse in 2022 after Covid-19, I have brain fog, diziness, insomnia, shoulder pain, neck pain.
Since 2022 I am partially disabled by my disorder.
I have been diagnosed with vascular compressions after a CT with contrast, I did a remote consult with Doctor Ferdinand Hui who is a very knowledgeable doctor in regards to ME/CFS and how compressions can cause cognitive problems.
I have joined this forum to share my journey and to read stories about people in my similar situation.
I have:
-left brachiocephalic Vein (BV) compression
-TOS
-C1 compression.
So are you going to be evaluated & treated for TOS as well given the narrowing of the brachiocephalic vein? All these venous compressions, like May-Thurner & Nutcracker seem to be noticed quite a bit with ES patients, although why/ how there’s a link we don’t know…
Dr Hui has helped with diagnosing quite a few members, we have a research paper written by him in that section & I think he’s taken part in a conference about venous compressions which some members have posted links to, so we’re aware of how thorough & knowledgeable he is, but haven’t heard of Dr Sandmann!
@CristianSerious - I’m sorry you have several compressions in your body all at once plus AAI/CCI & MCAS. That is a lot to deal with! It looks like you’ve found some good remote help in Dr. Hui, Dr. Gilete, & Dr. Mike, your PT. I’m glad PT has helped you feel better & improved your quality of life. It’s good to know there is a PT clinic that specifically helps people who have hypermobility.
I can’t remember if I shared this name with you, but Dr. Kamran Aghayev in Turkey does both TOS & vES surgeries so would be worth consulting if you can travel outside of your country for help.
If a patient has vascular thoracic outlet syndrome and left brachiocephalic vein compression is there is a connection between those two conditions and what is the treatment for someone with both ?
Quite a interesting response, I have attached the pdf here.
@CristianSerious - Interesting article. It makes sense the two would be related. I’m not absolutely sure, but I think most of the people on our forum who’ve had TOS haven’t had the vascular version. It sounds like a more major surgery to correct it especially if the brachiocephalic vein is also compressed. Thank you for the link.
Thank you everyone for their input, I will post a’n update after I contacted the mention doctors, I do have a list of doctors now and will see based on consultation, surgical option and costs.
I did not find anything new regarding literature of TOS and Brachiocephalic Vein Compression, and its solution.
I have made my mind and will go for surgical intervention for TOS, I did find a lot of information here:
There are a few centers I am still thinking on who to contact, I have joined a Facebook Group and reading there opinions o boy there are a lot of negative experiences so far in Europe this looks promising:
Dr. Kamran Aghayev has been mentioned here I do not know what to believe regarding he’s TOS surgical intervention I have joined the TOS Facebook Group and found not everyone did well after surgery.
You have certainly done your homework, @CristianSerious! Thank you for sharing the information you’ve found about doctors who do TOS surgeries in Europe & Canada & for the links to the sites that have been helpful for you.
I am glad you’ve made the decision to have your TOS taken care of surgically, but now the hardest decision has to be made - who will do the surgery for you. Obviously a lot of experience with TOS surgeries & overall good outcomes bear a lot of weight when choosing a surgeon. Next, as @Jules mentioned in another post, is the cost & location convenience i.e. how easy/difficult is it to travel to the doctor, find affordable housing in the area, purchase medications, etc.
Please let us know who you choose once you’re done with your investigation and thank you for opening the door to a more significant variety of TOS surgeons than we knew of before.
On our forum, we readily acknowledge that there isn’t a surgeon in the world who has a perfect “track record” with surgery. Every patient responds a bit differently to the stresses of surgery, & even a well done surgery can end up with less than ideal results because of the way the patient’s body heals.
Sometimes mistakes are made in medical practice which is why a doctor’s job description is called a “medical practice”. Doctors are constantly learning from the things that go wrong & work to improve & refine their techniques so that problems are less likely to occur in the future.
@CristianSerious , do you have any screenshots of your brachiocephalic vein compression? I’d love to see imaging, as my brachiocephalic vein is severely compressed in 2 places. From what Dr. Middleton could tell, it’s not compressed from any boney structures. Which is extra puzzling to him/us.
We’ve been in contact with Dr. Hui/Queens Hospital, and are hoping to hear more next week, likely on Monday, they said.
Hi, I think sharing images it is not that helpful depends o each patient, there is a case of someone who had the compression and had C1 shave with styloid process there article is mentioned on this forum.
What I can tell you from a fact at least in my case being in Europe talking to multiple doctors in Romania for opinions is that before any surgical intervention as Doctor Hui wrote in my report posted there is a need of exploratory angiography in provocative positions, which is not a standard procedure everybody does it in their own way.
That being said from my point of view the steps are follows:
1.Find a surgeon that is trustworthy and has experience and discuss my case with him
2.Based on he’s experience do the exploratory angiography as he wants or at the doctor he works with. Because if I do this investigation without having the surgeon he may require other kind of technique or the investigation. I talked with a neuroradiology’s in Romania which is opened in helping me do this investigation, but we do not know what we are looking for because the purpose of this investigation is to have a surgical intervention we need to know what to look for based on a surgeons input.
These compression are dynamic, I did a Angio-CT in 2021 nothing came and the Angio-CT I did in 2024 my vein was bruised and had the contrast inserted in my fist I had my hand over my body and the compression was visible.
Except… a C1 shave will not change a brachiocephalic vein compression, right? The BVC is in the upper chest, not the neck. Maybe you were talking about IJV compression?
No worries, we’ll wait and see what Dr. Hui says. Maybe he’ll say we have time to decide whether we go to Hawaii for stents or to Germany for external decompression. Or maybe he’ll say we need to figure out what’s compressing it in the first place! (as that’s still a big question)
“Specifically, CT and catheter venography identified focal narrowings of both jugular and the left brachiocephalic veins. Treatment of brachiocephalic obstruction was not feasible. However, in separate surgical procedures, relief of jugular venous obstruction produced incremental and significant clinical improvements which have proven durable over the length of follow-up.”
Thank you for the reminder about that article, @CristianSerious. Again, you are serving as a good example of being thorough in your investigation of doctors & their surgical procedures, so you can choose the doctor you think will perform the most successful surgery for you. That can be a difficult path to take when you don’t feel well & want to get help sooner than later.
