You are totally right, I want to avoid any other radiation but how else do I know that IJV compression is only due to SP ? It could also be for other factors, isn’t it? I also wanted to take spine MRI just to check if I have tethered cord or something maybe I can do both at the same time somehow!
When Dr. Aghayev decompressed my left side, he said he also found the occipital artery strangling the left jugular vein, and so he decompressed it by (I think) dissecting the occipital artery.
The idea that the occipital artery can compress the jugular vein is something that there is no literature about, so I was seriously impressed that Dr Aghayev knew to do this.
The only other case where I knew that to happen was with @KoolDude , who’s extensive and thorough analysis of his own scans showed unambiguous evidence that his occipital artery was strangling the jugular vein. That’s why I highly encourage @KoolDude to consult with Dr Aghayev.
I was joking with my family that Dr aghayev simply knows everything there is to know about what’s inside the head and neck. If there are any other sources of IJV compression I am confident he will find it.
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@gramos, There are several different ways the IJV can be compressed. The one we see most often w/ ES is the IJV getting squashed between the styloid & transverse process of C1 but a number of our members learned after their surgeries that a nerve (most often the spinal accessory nerve), another vascular tissue (as @Bowser mentioned), scar or muscle tissue was also involved w/ the compression.
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So are you basically saying that whatever examinations we do, it’s still not enough to know where the exact compression is until the surgeon is inside and views what is going on ?
I would say “yes”, not with absolute certainty because I am no expert, but my opinion does generally lean in this direction.
You can only truly know what’s going on inside during the surgery, and the skill of the surgeon and his ability to make complex decisions on the fly within the limited duration of the surgery matters a great deal.
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I agree with @Bowser which is why I chose an experienced vascular neurosurgeon who has the skillset to address multiple issues that could appear in the surgical field. I mentioned in another post somewhere else that Dr. Nakaji and the other handful of surgeons who are really trying to understand venous hypertension are sharing information with each other about different things they have found causing compression so they can be aware of things to consider when looking at the surgical field.
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I agree with @Bowser & @Chrickychricky that other structures compressing the jugular vein don’t always seem obvious from the scans, like @Isaiah_40_31 says we have had members who’ve had a nerve compressing their IJV too, I don’t know for sure, but I think that would be hard to see on a scan.
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I have been vacationing at sea for the past few days, so I did not have access to a computer to reply.
I saw your post that you have surgery next week.
What did you agree and how do you do it? Will you do CTV?
It would be useful to see the IJV and see if C1 is causing problems, but since you had a CT four months ago, it’s not very good to be exposed to radiation in such a short period of time.
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Good to hear you are able to do vacation in sea.
Yes its true I already posted in FB, and wanted to tell the forum here as well. I am flying to Istanbul this week meeting with Dr. Aghayev. And hopefully I can do the surgery as well, he recommended me a bilateral surgery so will have to decide on this while I am there. He will probably do more examinations to me so, don’t know what exactly, it would be nice to have CTV as well but I am not sure what will he ask for. So guys wanted to thank you all for all the info and support you provided. And please keep me on your prayers as well. With gods will everything will be fine.
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Yes, vacationing at sea helped me a lot with my back and leg pain.
I want everything to go well and you make the right decisions. You will be in my prayers and I will be waiting to hear back from you on how it went and hope for good news.
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Praying your tests and surgery go well @gramos, let us know how you get on 
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I’m so glad you’re appointment w/ Dr. Aghayev is coming up so soon, @gramos. I will also be praying for you to make the best decision re: surgery for yourself i.e. unilateral vs bilateral & that Dr. A will refer you for the tests that will help him best understand what the situation is in your neck so he has an idea of what needs to happen during surgery.
I wish I’d had the option for bilateral surgery as it would have saved me the extra months of recovery my second surgery required. It’s a slower start to the recovery right after surgery but once it gets going, it’s quicker overall if both sides are done at once. Most doctors won’t do bilateral surgeries because of fear of swelling in the patient’s throat post op, however, we don’t know of any of our members who had bilateral surgery who had a serious problem with that post op. We do recommend requesting a steroid medication such as prednisone to help reduce the swelling in the week or two after surgery.
Please let us know what you decide & when your surgery will be.
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Hello guys, just wanted to give an update. I have successfully done bilateral surgery. I am already 6 days post-op. Doctor Aghayev said it was one of most complicated surgeries he has done so far in ES. Since mine were in small pieces! The surgery lasted almost 7 hours! It was estimated at 3 hours! Family were very worried! But thanks to god everything went ok.
Dr also did bilateral C1 shave and mentioned that he had to remove som weird muscle attached to C1 transverse.
So far I don’t have any significant pain but neither I did before surgery. The swelling is going away mostly by using Ice. Since day 4/5 I am having diarrhea and a tearing pain in left lower abdomen, it looks like appendicitis but someone mentioned I should check for Abdominal aortic aneurism!
Will have another post-op check tomorrow with doctor, I will probably have more info!
I know it’s to early to evaluate the success of surgery, until now I can’t see any significant improvement, in some parts currently I have worse symptoms but with great hope things will improve.
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So pleased that you’re through surgery, sounds like alot was done, so there will likely be significant internal swelling, it would be very early to expect to see much improvement… I hope you heal well from that, and especially that you get this stomach pain diagnosed and sorted…an aortic aneurysm would be pretty unlikely but whatever it is it sounds like you need to be seeing a doctor.
Praying that you feel better soon
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HOORAY that your surgery is done. All your concerns about surgery can now be put aside since Dr. Aghayev confirmed by his findings that you REALLY needed the surgery! I’m glad he did it bilaterally so you won’t need to go back for another round. It sounds like he was very careful & thorough. Recovery & reduction of symptoms will take some months as @Jules noted, it takes patience.
I’m also sorry to hear about your abdominal pain & diarrhea. Are you taking an Rx pain medication? Those can cause that sort of side effect sometimes. Might be worthwhile checking into that as stopping the medication would possibly be a simple cure. Talking to/seeing your doctor is most important though.
Please let us know what you find out about the abdominal pain. I hope it’s nothing serious.
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I’m glad you had the surgery and I wish you a speedy recovery!
It is also good for me to hear that Dr. Aghayev does the entire work in one operation and that he is thorough.
I hope your stomach problems go away soon. Somehow I think that your Vagus nerve has suffered a lot and that it will soon recover and your stomach will work properly.
Since I see Dr. Aghayev as the closest doctor who can fix my condition, I need to have financial plans for such a procedure, so I will send you a private message on fb, to see what the approximate amount is.
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@tesla001 - You can send a private message in this forum by clicking on the screen name or avatar as they appear above @gramos post. That takes you to a page to send a private message.
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@gramos, how are you doing? Thinking of you
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Hello guys, I am fine for now, first two weeks post-op where not that bad, I had a very tough third week, especially with tachycardia episodes coming back and weird nerve/vascular/muscle I don’t know what it is on my left part if chest and left arm. Everything looks like it comes and goes. Now in fourth week it’s like a rollercoaster, I hope with time everything will resolve and hopefully there is not something else I need to deal with. I suspect TOS but hopefully not!
I will post soon a more detailed update for 1 month post-op.
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It is indeed a rollercoaster! I hope things settle down, sometimes as nerves heal they can cause weird symptoms, pr pre-surgery symptoms to come back a little. Make sure you take things easy & don’t overdo it too, that can set healing back…looking forward to your update!
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