After jugular vein compression surgery, still having problems

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Hello everyone,

I’m back to give you the latest news on my husband’s health.

We finally had the long-awaited appointment with the vascular eagles syndrome specialist in Montpellier.

As a reminder, my husband had had an appointment with him last year, and he was ready to perform the operation, but in the meantime, we had found a surgeon near us who was able to perform the removal of the stiloids.

We come from Belgium and the journey from Brussels to Montpellier takes 10 hours by car and 6 hours by train. At the time, we chose a surgeon close to home.

My husband had the operation in February. The operation went well. Afterwards, the neck position (and jugular vein compression) no longer had an impact on my husband’s health. But the symptoms persisted (diplopia, blurred vision, headaches, hypersensitivity to light and noise, etc.).

The doctor in Brussels didn’t want to go ahead with the operation. The operation was a success, and the symptoms would disappear. So we got back in touch with the doctor in Montpellier. He suggested we have another angioscan to check that the jugular vein had regained its shape. This took place last week.

In the end, all’s well on this side. There is no longer any compression at the level previously detected. The blood is circulating perfectly. So the February operation was a success, as the doctor confirmed. However, when manual compression is applied to the jugular vein areas, my husband’s eyes react instantly, making him squint. The doctor tested it and found that it’s not normal, it’s not supposed to happen (we tested it on the doctor and myself, nothing happens when we do the same thing). The doctor speculated that it might be a hypersensitized 6th nerve that had been overstressed for so many years (it’s been 15 years since my husband’s symptoms progressively worsened) and that now that the compression has been removed, we need to give the system time to recover. He suggested waiting another three months, to have six months post-operatively to see if there’s any improvement. And maybe he’ll prescribe diamox at that point.

Have any of you had this diagnosis? hypersensitivity of 6? do you have the same symptoms? have they improved over time?

At the same time, my husband has managed to find an optometrist in Belgium who believes that my husband’s eyes have been trying to compensate for a problem for too long and that, unfortunately, the medical path punctuated by medical errors (+ compression) have completely derailed the visual system. Now that the compression has been lifted, the eyes have to be taught to function normally again.

There’s still a long way to go, let’s hope that these doctors are the ones who will be able to help us in our distress.

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Thank you so much for the update, @ChristinaBabylon. What good news that the IJV is open & blood flow through it is good & some symptoms are gone.

The information you’ve been given by the doctor in Montpelier & the optometrist makes sense. We regularly note on here that nerves can take up to a year or more to recover after injury. I had a terrible case of first bite syndrome (caused by the glossopharyngeal nerve) after my first surgery. It never fully recovered, but I continue to notice it decreasing in intensity & frequency nearly 10 years later.

I don’t know if anyone has mentioned this, but if your husband’s vascular compression was bilateral, & he’s only had one side decompressed, he may need to get the other one done, too, for the best end results. Dr. Hepworth in the US has commented that our vascular systems are circular & as long as there is a kink somewhere in the line, there is a chance of negative symptoms. That doesn’t hold true for everyone, but we have quite a number of members who found their symptoms didn’t fully go away until both IJVs were decompressed.

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I’m glad that the surgery was successful in that the blood flow is good now, I do agree that it can take a while for the nerves to heal, so I hope that your husband’s vision symptoms do improve :hugs: :pray:

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Thank you @Isaiah_40_31 and @Jules , for your answers.

Yes, the compression is bilateral in my husband’s case and the operation was performed on both sides, so unless there’s something else going on elsewhere, vascular eagles syndrome is no longer an issue at the moment. The doctor in Montpellier - who tends to suggest stenting quite readily - didn’t seem to be convinced that stenting would significantly improve the situation.

What worries us in my husband’s case is that the symptoms are getting worse (okay, the neck position no longer has any influence, but the symptoms haven’t disappeared or improved). My husband has reached the point where he’s having anxiety attacks at night, waking up with a headache like hell and dizziness and tinnitus that’s like banging his head against a wall.

We would like to find a solution so that he can rest. Knowing that remission will be long, it’s still bearable if he knows there’s at least something to give him temporary relief, or if only he could have a hobby to distract him from his chronic illness.

Do you have any advice on sleep? We’ve tried lots of things (raised ears, soft ones, hard ones, neck supports or not, drugs that help sleep that make it worse, meditation, etc.).

Thank you for reading
Good evening/day

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Has your husband been checked for inner ear problems? One thing that is a bit obscure but can be very troubling with dizziness & tinnitus is Semicircular Canal Dehiscence Syndrome (SCDS). It’s caused by thinning of bone in the inner ear & is detectable by a tri-planar CT scan of the skull base. There has been some discussion about SCDS on this forum as we’ve had a few members diagnosed with it. If you search SCDS using the magnifying glass image in the upper right, the posts where it’s mentioned will be listed for you.

Has your husband tried sleeping with his head elevated? It may take some experimentation to determine how much his head needs to be elevated if that seems helpful. Has he been tested for food allergies (I know this is a stretch but some food allergy responses are very severe) such as dairy or gluten or…?

I can imagine how frustrating this is for both of you. He’s gotten some symptoms relief but is still plagued with very difficult to deal with problems. I will be praying for him & you, @ChristinaBabylon. :hugs:

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I’m so sorry that you and your husband are having such struggles. One thing to consider is that there is a stenosis somewhere else other than IJV. It could be inside the skull and you would need an IR angiogram to find it. But it could also be somewhere else in the body such as the abdomen. Also, I don’t know if you have looked into dysautonomia or not. There are several types that include some of the symptoms you mention. My dad has a type that involves poor control of his blood pressure and has a lot of ocular issues and tinnitus.

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