Me too… I have Nutcracker syndrome, VES and EDS…
Here is a research paper, where Dr. Higgins explains how he makes IJV balooning prior to styloid and C1 TP resection to check if the problem really lays in the compressed IJV (and it shows, yes it does):
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May I have that links too?! 
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@Irina777 just sent you a pm
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I’m really sorry you have all those health challenges, @Irina777. Since you’ve found a doctor or doctors who’ve been able to diagnose those problems, do any of them do the surgeries to help them - VES & Nutcracker Syndrome in particular?
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For Nutcracker syndrome, I found a doctor in Russia, Alexander Vasiljev, who is fond of vein compressions like Nutcracker syndrome, May Turner syndrome and vein compression by TOS, but not of VES. He makes vein stenting. I came occasionally at his video on youtube on EDS, where he also talked on Nutcracker syndrome. And there I understood that I most probably have it… Doctors in Belarus who I turned to, all have heard of this condition being students, but never diagnosed it (now I see, they didn’t even know, what tests are needed). They didn’t take my assumptions seriously and refused to make any tests. So I went to Moscow, where that doctor made a selective CT venogram, and my assumptions were confirmed. Later it was yet also confirmed in Belarus, through additional tests.
Dr. Vasilhev is the only one in the whole country who makes stenting for the NS, although, as he himself admitted, not always successfully. I visited him in 2020, and by that time there were just around 30 people, who received this treatment from him. First I was considering it, but then came across FB group on Nutcracker and understood, that this option might be not so good.
I was considering renal autotransplant or even nephrectomy, but the doctors in Belarus refused it, meaning the vein pressure gradient was not high enough in my case, and hence the OP not indicated. The symtoms I have did not count. Later Dr. Vasiljev explained, that measuring pressure gradient is not informative, since it changes constantly, depending on many factors, including body position. My symptoms aggravate when sitting, while tonometry was made in supine position.
What concerns VES, I can’t say exactly for the classic type and carotid type, but for the jugular type I have, there’s absolutely no specialist neither in Belarus, nor did I find him in Russia. I found the ES and IJV compression on my CT scans myself, (having already gained experience in reading it from experince with the Nutcracker syndrome). Dr. Vasiljev played a role in it, since he checked my cerebral veins during the CT venogramm too, and found a huge aneurism on my right condylar emissary vein. He didn’t know, where it comes from, or what it can cause, and what one can do with it. But for me this turned out to be a clue, which later helped me to come to the right diagnosis through deduction method, and know where to look at at my CT scans (thanks God, this area was captured OCCASIONLY on a CT scan, initialy made to check for another condition).
First, I turned to some neurologists, who turned out not to be competent at all at this area, couldn’t read CT scans, didn’t take my assumptions seriously and ascribed all my symptoms to depression, anxiety disorder, panic attacks and tension type headaches. Until I found a neurosurgeon in my city, very curious, ingaged and open minded, who agreed with me, admitting, that I am a very unique case, have definitely more knowledge about this condition than he himself, and that there’s absolutely NOONE in our country, who is fond of cerebral vein compression issues.
He sent me to a clinic in Minsk, the main clinic in our Republic for neurology and neurosurgery, where it turned out to be just one spinal neurosurgeon, who had made an OP for classic ES, just once, not knowing the outcomes of it, since the patient never showed up again.
There was a consillium on my case, out of 3 doctors: 1 spinal neurosurgeon, 1 endovascular neurosurgeon and 1 neuroligist. Officially, they confirmed that I have the jugular compression on both sides, mainly through the C1 vertebra, but it “is compensated through the venous outflow”. Since there are no signs of intracranial hypertension on my MRI. They didn’t make lumbar punction or any other investigations to check the IIH. When I noted, how come, it is compensated, when the symptoms are there, and the collaterals are so extremely delated, the answer from the spinal neurosurgeon was “compensated through this delation”.
There’s an outdated common postulate which I had to hear quite often, which sounds like “there are numerous pathways for the blood out of the brain, the blood will ALWAYS find its way out”, so my symptoms can’t come from the IJV compression.
When I talked later in private with 2 other doctors from the consillium, they admitted, that they know absolutely nothing about this condition, and the research base for it is still very small. And that they would put their competence under question, if they prescribe a surgery they have never made, with unclear outcome, which is also so extremely dangerous (they admitted, I need C1 TP resection, just styloidectomy would not help).
They offered me to turn to Burdenko clinic in Moscow, this is the main and most high rated clinic for neurosurgery in Russia. I sent there an email with all my CT scans more then 6 weeks ago, but no answer arrived. I also sent an email to Dr. Konovalov, very famous and high rated spinal neurosurgeon in Russia, working as head of the spinal neurosurgery department in the Burdenko clinic, and the answer came short: surgery not indicated. Just these words, without further details. So I left the idea to find a surgeon close to my area. The neurosurgeon in my city agreed, that it doesn’t seem that anyone in Belarus or Russia is competent enough in this area, and I have to search for a doctor abroad.
So this is how in the end I came across this forum, and am really glad, that it happened…
Actually, I was not going at all to make this post THAT LONG…)) But somehow it all poured out of me on itself. Feels like I just needed to share it with someone, who really CAN UNDERSTAND… Since there is no such person in my surroundings at present.
I find this forum amazing. I can’t describe, how grateful I am to all, who share their experiences, ideas, insights, studies, other information and support here. It is incredibly helpful.
Especially huge thanks to @Isaiah_40_31 and @Jules You are just great, guys. And your contribution to helping us is enormous 
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It’s crazy that doctors are so unaware of VES, when there are published research papers by experienced doctors…I’m so sorry that even having seen top neurosurgeons, no-one will help you. I’m glad that you’ve found the site helpful, at least we do understand here 
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@Irina777 - I love that you shared your story & all you’ve been through to try to find answers & get help. I agree w/ @Jules that is very sad that among all the medical super-specialists you saw, not even one had understanding or experience to help you. Even worse is the fact some of them didn’t believe you really have a problem.
The good that has come out of this is you have educated those who can now see in your scans the things that are wrong because you were able to point them out. Great job teaching yourself how to read your scans so you could advocate boldly for yourself! I hope these now “educated” doctors will choose to pursue even more understanding & learn surgical techniques to help others who are in your situation in the future. I expect there are others in your country with similar problems, you just haven’t met them yet.
I understand that traveling for surgery may not be possible because of the cost, so I wonder if you’d be able to get a prescription for a blood thinner like Plavix or Brillinta (not sure of their names in your country). Taking a blood thinner has helped reduce the vascular symptoms from IJV compression for many of our members as they awaited surgery. Since you have no surgery in sight at the moment, getting some symptoms relief would be helpful.
I am happy you found us & are very thankful to know you’ve found good support & information on here.
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Thank you for your kind words
Indeed, the neurosurgeon in my city, the only one who agreed and believed me, and did everything he could to help, said he is very gratefull to me for all the new knowledge I showed to him, and now he passes it on to his students (he is also a professor in the medical university)…
At least to know that my efforts have made the ice broken a bit, is already a very rewarding feeling.
Big thanks for your advice on a blood thinner! I was already considering it… Was not sure if it is safe enough… Especially if taking for a long time…
What concerns the surgery, I am determined to find the opportunity to come to Dr. Axon or Dr. Timothy in England, or some other doctor, and have it done. Will probably have to sell a flat for that, the only one I have, but I don’t see any other way out. I can’t live in the condition I am in now. Can’t work, can’t function, can’t socialise. It’s really hard.
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There is one surgeon in Poland, which might be closer to Belarus and also more affordable (not sure about this):
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That would be a huge sacrifice to have to sell your home, but I understand the urgency of your need for surgery so you can lead a normal life again. I hope that you are able to see the absolute best surgeon for your case, @Irina777.
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Great suggestion, @vdm!
Wow, thank you!
But how have you come upon him? Do you know, if he does a C1 shave? This is my key problem: I definitely need C1 TP resection, but there are just several doctors in the whole world, who are able to make it… Turning to a specialist, who would make it for the first time without proper training, might be really dangerous I guess…
Or what do you think?
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AFAIK he doesn’t touch the C1…
That’s a pity…
Hi @KoolDude, I am new here and dealing with IJV compression. Wondering, who is your vascular surgeon in Canada. I am in southern Ontario.
Thank you!
Hi Reemz,
First, welcome and I hope you find a lasting solution to your IJV compression issue. My Vascular or Neurovascular surgeon, as they call it, is Dr. Vitor Pereira who practices in ST Michael’s Hospital in Toronto. Here is his profile (Vitor Mendes Pereira - Unity Health Toronto).Hope this info helps. Wishing you luck.
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hi! did you end up seeing him or any others for styloidectomoes in BC? trying to find one and preferably someone familiar with intraoral approach but that seems like alberta only n they’re not taking out of province referrals right now apparently
@campsay - from our members experiences and medical research papers, the intraoral approach often doesn’t give as good long-term results as the transcervical (through the neck) approach to styloidectomy. the intraoral approach is also slower to recover from. One reason the transcervical approach is preferable is that the styloids can be removed closer to the skull base & the stylohyoid ligaments (if calcified, too) can be removed which reduces the chance of regrowth.
I’m just offering this as food for thought. If you find a surgeon you’re comfortable with & who’s known to have good results from his/her styloidectomy surgeries then that’s the best way to go regardless of which approach that doctor uses.
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Hi, I am also from Manitoba.