Due to my experiences images need to be able to even show the pathology, they need to be done correctly and even read correctly. I am looking for a doctor who is extremely knowledgeable regarding the whole venous system, also the neurovascular and can shed some light of all my problems and how they relate to each other. Who know about the haemodynamics and drainage patterns.
My issues are separated into disciplines, meanwhile my problem runs through the whole body from brain to cocyx, depending on gravity, body position and so on.
What I know till now: nutcracker of the left kidney vein (hypoplastic kidney) and a May Thurner. What is different: The Batson Venous plexus of the neurovascular system compensates that. So the pressure is pushed into the neurovascular system, before and behind the spine. This plexus drains also the brain. My issues in the brain and cervical spine are the worst. Due to fainting in the past I have C1 issues and a cervical spine instability. A swollen jugular vein was seen by one doctor, another told me I have TOS (“no big deal”). I think I could be a candidate for the vascular eagle and also TOS (maybe due the drainage pattern). I am offered no treatment. I want to know the whole picture, treating only one stenoic process when there are being more will only increase the pressure on the remaining ones. I cannot tolerate more pressure in my spine or brain. I am also a candidate for secondary damage like tethered cord and CSF leak. I am 45, my issues are 40 years old with onging progression.
Hi! I’m sorry that you’re having all these symptoms, & I agree that it would be great if there was a doctor who would consider the whole circulatory system & multiple venous congestion syndromes, but unfortunately if there is we’ve not heard of them!
One of our members has mentioned Professor Sandmann Prof. Dr. med. Wilhelm Sandmann - Clinic Bel Etage as being very knowledgeable about abdominal vascular compressions , @GeorgiaKay I think might have seen him?
Dr Aghayev in Turkey is knowledgeable about TOS and Vascular ES Dr. Kamran Aghayev | Neurosurgery, Brain & Spine Surgery
One of the doctors most experienced in the US suggested for treatment with multiple venous compressions syndromes that it’s best to start at the top and work down, but I don’t know if that’s his preference because of his experience with the brain and neck, or whether there is any evidence for this though…
There are several doctors in Germany on our list, but it’s unlikely they’d be knowledgeable enough with VES to be able to treat your situation, here’s a link to the list: Doctor Lists – no discussion - Symptoms and Treatments / Doctor Information - Living with Eagle
I hope that you are able to get some treatment, in the mean time there might be some helpful tips or info about medications/ supplements Here: ES Information- Treatment: Pain Relief, Medications and Alternative Therapies - Welcome / Newbies Guide to Eagle Syndrome - Living with Eagle
Thinking of you and sending you a hug
“One of the doctors most experienced in the US suggested for treatment with multiple venous compressions syndromes that it’s best to start at the top and work down, but I don’t know if that’s his preference because of his experience with the brain and neck, or whether there is any evidence for this though…” → this sounds extremeley interesting, would you be so kind to provide me with the name of the doctor who said that? The German option is for 100% out of the question. I am more interested in state of the art abroad. Thank you! This is so sweet, thank you! Many greetings back
I think that this was Dr Hepworth in CO, USA. He’s treated many members with VES and CSF leaks, and is very knowledgeable:
Dr. Edward Hepworth, Denver Sinus Care, 3150 E 3rd Ave, Denver, CO 80206 (720) 899-9489, FAX (720) 953-5151, email: info@denversinuscare.com or for initial consults - kcurry@denversinuscare.com
Is travelling to the US a possibility?
It’s so frustrating when you potentially have to travel abroad to not be able to see someone aware of all these conditions!
Thank you so much! To be honest - when it comes to our health we cannot be careful enough and as long as I hear “never seen that thing” “we could try” - I have to decline. Do you happen to know if he also would offer an online consultation first to give me his opinion? At the moment nobody seems to care that the whole system is affected and this “first top to bottom” sounds really great to me! Things like TOS or eagle or CSF in combination with Nutcracker or May Thurner I have never come across before… I would travel, I was once damaged by a doctor, So never again
Pr. Sandmann fixes the abdominal compressions, ie May Thurner’s, Nutcracker, SMAS, MALS, etc. Dr. Schmitz in the same clinic as Pr. Sandmann does the IJV compressions and C1 shaving, etc. He told me it’s possible he’d also be able to fix the brachiocephalic vein compression in my upper chest, which also goes along with TOS.
In the meantime, we are also getting a couple US surgeon’s opinions on the next step. In two weeks we see Dr. Fargen in NC, who would deal with the upper neck compressions. Our interest in going with him is to get a angio-venogram with angioplasty done, where he goes in and checks out all the veins, measuring pressures, looks for blockages/compressions, etc. (That’s a $60,000 self-pay study procedure, or with insurance, which we don’t have, it’s $120,000!) So far all the doctors/surgeons we’ve been seeing stress the importance of starting at the top and working down. I suppose symptoms also play a big part in that picture. For me, my major symptoms are headaches, syncope, losing total vision and hearing, etc. For others, abdominal pain and gastrointestinal issues are the biggest symptoms, so they might want the abdomen fixed first…
We are also hoping to get scheduled with Dr. Hui in Hawaii in the next 3 weeks. They spoke with us on Friday and said their paperwork is going through for accepting new patients (which was a LONG process to get figured out – we reached out to them in Nov. of 2025…) Because of the complexity of all this, we want enough opinions before proceeding. Extra opinions are expensive, but we already learned the hard way once when we took the first opportunity for cervical spine surgery during the days of Covid. That incident cost us many dollars and horrible pain and … near death, due to an artery in the neck nearly being severed. So we plod along, trusting the Lord will make a path through this “Red Sea”.
I hope you can find answers @Lisa81 and don’t let the “no big deal” comment about TOS deter you. TOS is a big deal! and needs to be fixed. I cannot lie down for more than 10 minutes before my left hand goes totally numb. The numbness creeps halfway up my arm too, and when I wake at night so numb I can’t bend my fingers, or use that numb hand to turn over in bed, it’s no fun! Keep hunting for reputable doctor(s) who can help you!
@Lisa81 - Welcome to our forum! @Jules & @GeorgiaKay have given you excellent information. I will add that if you come to the US, Dr. Petra Klinge in Rhode Island is the top doctor in the US to see for tethered cord surgery. I have heard she has cancer & is doing her best to continue to practice so if she is unavailable there are others, & I will try to find names for you if you need them.
Or Dr. Fraser Henderson, in Maryland. He also does tethered cord release surgery. Another of his specialties is fusing C1 and C2 to correct severe CCI.
well I had (IJV) compression surgery about 1 month ago. It was a revision from styloidectomy in 2020. I had a c1 shave on one side among a few other things on left.
My daughter has just got a DX of the same but some different issues a part of her case. She has POTS/Dysautonomia, MCAS, SFN. We have hEDS. I have nTOS, her, maybe. She CCI?
I recently (DEC) had a consult w EDS specialist and advised to get check for vascular compression. I have been having severe left flank pain that seemed to wrap around and up to my mid back and kidney. I saw vascular surgeon who did US and said I likely have May-Thurner and possible Nutcracker. I saw a thoracic surgeon for consult for Slipping rib and told I had MALS anatomy.
My daughter does not have May-thurner but US and past CT I reviewed indicates Nutcracker. We just got the IJV DX a couple weeks ago. I have to say it is a bit overwhelming trying to sort this out between her and I.
I know @BuckeyePrincess took her daughter to Germany for vascular compression I think for MALS/SMAS? She spoke highly of those docs. I and my daughter will probably get an catheter angiogram with IVUS (intra-vascular US). This is supposed to be the gold standard for these compressions.
I have hired a vascular surgeon to review my entire medical records, scans, etc. He no longer does surgery but you can hire him as a consultant (cash pay). https://avcsconsultation.com
I just had a 4.5 hour zoom call with him last week to try and help me sort it all out and it has been worth the consult fee (he takes payments). We are not done either. He has suggested my daughter get a full spine MRI from neck to tail bone to check for other abnormalities.
You are not going to the right docs, yet. Your in the right place to learn. Hope that helps. Feel free to private message me too.
