@Inegoti84u - Do you have a surgeon/surgery date set for your next surgery?
I also hope the Botox helps!
Not yet. Need to try to relax the muscles with Botox then schedule up. Hopefully in September or October.
Regards,
Jason
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No one had suggested it yet. Wonder if it can get that deep since it’s behind the SCM muscle.
Regards,
Jason
Might be worth looking into? I don’t know how deep it goes…
Another Update:
Unfortunately I am still feeling very dizzy in addition to other IIH symptoms. Mainly working from home and lying on the couch. I also feel that my muscles are very tense in my neck, shoulders and jaw.
I finallly was able to get another appointment with Dr. Heim who did the surgery. As written above the CTV Report showed that muscle Musculus Stylopharyngeus is pressing the vein against C1. Dr. Heim said that this muscle is normally removed while surgery and he thinks that this info is wrong (especially hard to tell from a CTV). Also he thinks that the compression is not related to any muscle, but mainly to the TP of C1.
I asked him if Ballooning/Stenting makes sense and he said he cannot recommend that. The reason is that the Veins (in comparison to the Arteries) are very thin and the chance is high that they don’t stay open afterwards. He compared veins with paper and arteries with a garden hose, you use watering the plants. So it’s quite risky and should of course only be done by vein experts.
He suggested to do an ultrasound in different head positions, and if the vein opens up, he would suggest removing also the right styloid as this is my dominant side - but of course he cannot tell if the vein will open up.
I hope getting those results on 7th of December in Uniklinik Mannheim, Germany. But not sure how familiar they are with IIH, just talked to the receptionist.
So in general my situation is still bad unfortunately, but hoping for better times.
Regards,
Marco
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I’m very sorry to hear your IJV is still compressed. Dr. Heim gave you very wise information. It is not good to get a stent when the IJV is still compressed especially when a bone (the transverse process of C-1 in your case) is causing the problem because that same bone will cause the stent to bend & block the blood flow further since it also takes up space in the vein. There are images on the internet of stents that have bent & have been made useless when they were put in veins being compressed by bones.
It is a reasonable suggestion that you have your right styloid removed to help open up the right IJV, however, if the major cause of the IJV compression on that side is from the TPs of C-1 then the vessel may not open enough unless you have the TP of C-1 slightly shaved to give more space for the IJV. The other option is to move the IJV away from C-1 & anchor it in a new position where it isn’t being pressed on by bone or muscle.
Did Dr. Heim offer to do your right side styloidectomy? If so, you are fortunate since he has told other members of our forum that he is no longer doing styloidectomies.
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Yes unfortunately he said he is still in discussion with some hospitals, but seems more difficult than expected. He’s definitely no employer anymore at Uniklinik Bonn, but self-employed doing consultations.
He also said that he wouldn’t recommend shaving C1, as it is very risky, too. Also in Germany I didn’t come upon anyone doing it.
I fully agree with you that the resection of the right side might hit the same problem, but from the picture there seems to be at least some light compression from the styloid.
Also I feel that my head posture is not the best, like the back of my head is going down and the chin up (see the picture below). Maybe cause this moves the styloid away from C1. But that head posture of course worsen the compression of C1 itself as the vein needs to bend more around. So it’s definitely connected all together 
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Sorry that you’re still getting IH symptoms, and that you get more clarity with your results and ultrasound testing if you can have that done dynamically. WE have had members who’ve had compression of the IJV with muscles and have had that muscle resected, so it is possible. I hope that if it is felt that having the right side removed too will help that you can have that done too 
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Another (short) update - So I finally got my ultrasound in Uniklinik Mannheim.
The doctor told me that the venous blood flow looks absolutely normal and she wouldn’t recommend having second surgery for the right side.
I am not sure if this is good or not, as this was the only explanation I had for my intracranial head pressure and dizziness/brain fog. As both sides jugular veins are narrowed to 2-3 mm, I am absolutely suprised and a bit skeptical.
But she was a quite young doctor and very motivated to discuss this case as a case study with the other doctors. So maybe they’ll have ideas for further screenings.
Also she will send me the results as email so I can try to research on my own.
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A shame the ultrasound didn’t give you conclusive results…I hope that maybe when your case is discussed with other doctors they can see something which she hasn’t, very difficult for you…
Will you have another appointment with Dr Heim?
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Thanks Jules.
No I won’t see him again, as he’s not working for Uniklinik Bonn anymore, every appointment is about 300 Euros.
But I just had a conversation with a person having the same problems… And also for him the Ultrasound looked normal. So I am not sure how meaningful it is at all.
I’ll research the forum a bit
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@Dersen, A number of our members, including @TheDude who is also in Germany, have had negative US results regarding IJV compression but the reality is there is compression there. In the US Dr. Hepworth has a specific protocol for doing the IJV US which measures blood flow velocities at certain points along the IJV. The flow velocities can help demonstrate where the compression(s) is/are. Even with the Dr. Hepworth’s protocol in hand, it seems some technicians outside of his sphere of infulence still don’t do it right, though.
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Thanks @Isaiah_40_31
I just got a phone call, and the director of that vascular center at Uniklinik Mannheim wants to see me again to do some more investigations. That feels quite good as it’s rarely seen that doctors are that motivated.
He seems a bit more experienced, and I will definitely take the protocol from Dr. Hepworth with me. So if anybody has some more handy tipps, they’re warmly welcomed.
Otherwise I will update you hopefully on 18th January.
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That’s great news, @Dersen! I hope the doctor is very thorough & you come away with helpful information.
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@JSwing see here about inflammation and spinal accessory and vagus nerve…
(in thread above)
"I found a PT who was trained in neuro and they spend a lot of time working on trigger points in the neck and around the dorsal scapula. I’ve found that when the styloid moves around in the neck it causes a lot of inflammation in tight spaces including the Vegas and Accessory nerve. Both of which can make it feel like you’re short of breath or not getting enough blood to the brain. General compression that can’t been seen on an X-ray or ultrasound is almost zero. I’d suggest you consider the mechanism of action of everything and not assume it’s just as simple as straight compression. In my case they have done the left side twice and I am lining up for a third. Not so much because of the styloid, but because of the scar tissue hittin and rubbing the nerves which then fire off and cause muscle spasms and extreme pain with localized pain. In fact, my case is so bad the muscles are so tight it has caused 24 degrees of thoracic scoliosis.
Regards,
Jason"
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So I had my second appointment at Uniklinik Mannheim, this time with the ladder of the department, having 30 years of experience. He did a Doppler Sonographie and he took his time - the whole session including discussions took nearly an hour, which I really appreciated. I also showed him the protocol of Dr Hepworth, which he only checked for about 5 seconds, so not sure if he took that serious. Results:
Arterial flow is normal on both sides
Right Side:
- Jugular Vein is also normal, but got a relative compression on the level of the carotid bulb, which is opening while “Valsava Maneuer”
Left Side:
- clearly the non-dominant side
- Also compression on the level of the carotid bulb, also opening while doing the Maneuver, but still way less than the right side. We also see that the blood flow speed increases at that point.
Afterwards he did a “Crossover Test” (means pressing on the right vein, see how the left one develops and vise versa). When pressing on the right side we saw the left jugular vein clearly opening up. When pressing on the left side the right one only slightly increased (explainable as the left side is non-dominant + stenosis). So the result was that my right side (and also the collaterals) are fully compensating the stenosis, as otherwise the flow of left side would increase (as it would be able to, like we saw in the crossover test).
last sentence: “So a vascular cause of the symptoms can be excluded.” (and there’s no need for a surgery of the right side, at least from vascular side).
I was really thankful for the detailed explanations and they all made sense to me. On the other hand that was the only explanation I had which was matching completely my feelings and symptoms (dizzy, head pressure, fog). So my feelings are a bit mixed, as he proved the stenosis on the one hand but disproved it with the tests he did.
What are your thoughts about it? I know some of you have also a lot of experience already with those examinations.
Side note: that’s also why ballooning does not make sense at all, as we saw the left side closing immediately again after he released the pressure on the right vein. About stenting the Jugular vein he said that this is forbidden and shouldn’t be done at all as it’s very very dangerous.
Well that’s all a mystery; if any compression is being compensated for, why are you getting symptoms…I do agree that stenting isn’t a great option…Just very, very frustrating
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It sounds like he didn’t do this testing dynamically i.e. w/ your head in positions other than neutral. IJV compression isn’t always visible in neutral or at least not the full extent of it. I speculate that you do have IJV compression that is more severe when your head is in other positions (looking down, left or right for example). We have also noted on here that for some people, even very minor compression can cause big symptoms.
It seems to me the tests he did were a bit “forced” to check to see if one IJV (+collaterals) is compensating for the other. Perhaps under normal circumstances, your two sides aren’t helping each other out as much as the testing showed.
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Hello!
I know it has been half a year since the last post.
Do you mind me asking if you got the other styloid removed?
Or has your symptoms resolved/ improved?
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Hey @Alice, you had a quite good timing asking this question, so I wanted to post an update either way thank you.
Yesterday I scheduled the appointment for surgery on the right side. It will be at 10th of September in Hilden (Germany), executed by Dr. Martini and team.
He said that unfortunately the second surgery won’t solve my dizziness, as he thinks the TP of C1 is responsible for my stenosis. But I still think it’s the right decision as I developed some other symptoms (ringing in the ears and some more). Also I got the feeling that there’s some scar tissue which is having negative effects on the jugular vein (was the way on the left side, too).
It’s a bit unfortunate that it’s very hard to find somebody having a look on C1, too. He mentioned that I maybe want to check for a Neuro Surgeon, but to be honest I don’t know if there’s one in Germany doing those surgeries.
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