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.
