Decompression unsuccessful

General
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Hello all,
I wish I had better news, but I am here to say that my jugular vein decompression failed.
After the surgery, I slowly was returning to old symptoms (because I had spontaneously/miraculously improved prior to surgery and almost called it off). Symptoms have returned with vengeance.

Surgery was performed on the dominant side, which also was the hypoplastic side, 95% closed. Other vein is 60% compressed.

On post imaging (MRV,) The vein, appeared hypoplastic on the top, and the rest of the vein was unable to be seen.

I have some new theories on what’s going on after much thought:

Either:
*** I have other compressions in my body.
*** the jugular vein was not the problem, or we did the wrong side.
*** or this is a CSF leak
***this is CCI

My main symptoms are: severe head, pressure, being upright, and now laying down, dizziness, severe brain fog, a numb like sensation in my face, stiff neck that comes and goes. My symptoms have always been extreme. My Neuro interventional radiologist told me I had the highest pressures he has ever seen. I cannot really leave the house or drive. Life has done a 180 in the last 2 years! But when I healed for that time. A few months ago, I was able to do many many things again, and I felt so blessed! How could I not know how I got better? I don’t know much about leaks, but I was exercising strenuously. And straining for a few days. Doing a lot of core and straining. The next day I woke up a debilitating headache that lasted for 48 hours without relief for medication.

Please let me know your thoughts. Especially on the spontaneous recovery prior to surgery.

Also, how would the neurosurgeon go in to do a revision?

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Hello!

What kind of surgery did you have? :slight_smile:

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Jugular vein decompression with C1 shave, carotid sheath. ,

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I’m sorry that the symptoms have returned, especially as you had a small window of feeling better…
I guess a CSF leak before your surgery when you did improve could have been responsible for the improvement in vascular symptoms, although usually if there’s much of a leak people get a low pressure headache which improves with laying down, & it doesn’t sound as if you had that then? (Not sure if I’ve misunderstood the timeline- did you exercise strenuously after surgery which has caused more symptoms, or was it before the surgery & when you improved?) It’s common for exercise, especially strenuous to make intracranial hypertension symptoms worse…
Obviously we’re not doctors here, but from what we’ve seen, it’s hard to judge any success with surgery unless both sides are removed- my concern would be that maybe your hypoplastic IJV is too small to re-open enough to improve the intracranial hypertension symptoms, and that although the dominant side is less compressed, it’s still a significant compression, and if that’s carrying all the blood flow then it will likely be causing symptoms? Rather than consider a revision surgery, my choice would be to get this side decompressed and then see what happens…
I don’t know if you have any CCI symptoms; I’m sorry I can’t remember? Even if this is a possibility, it would still be difficult to decide if it’s an issue and causing symptoms until the other side is decompressed, and the same really for any other vascular compression symptoms…
Have you spoken to the doctor who did your surgery ?

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Hi Jules,
Thanks so much for your response.

I was thinking also that I could’ve had a CSF leak unknowingly. And I was chasing after jugular vein compression and CCI, When my symptoms got so much better.

My symptoms got about 75% better during that time, enough to make me second-guess having a surgery. I was able to be upright without a headache or pressure. The dizziness went away. Pretty much everything. There were a few lingering things though. I thought I was on my way to recovery after Two years of living in this Homebound world!

After the jugular vein decompression, my symptoms were slowly returning, including pressure, minimal headaches, and just not feeling well. I was wanting to lay down a lot more.

Two months after surgery I was trying to get in shape and started doing core, which consisted of Bearing down with intense straining. I also was Starting out with cardio and my heart was pounding again.

The next day I woke up with a debilitating headache for 48 hours. After 48 hours, the headache went away, but the pressure was all the way back, and it’s been accelerating since. POTS symptoms are back, feelings of despair, heavy head, extreme pressure/dizziness, full ears. I catch myself gazing constantly.

I also have transverse and sigmoid sinus stenosis. But from what I’ve read, you only need one side. Not sure if that’s true!

I do believe I have CCI also. When I had my second opinion appointment with Dr. Bolognese, he spoke mostly on my intercranial hypotension and intercranial hypertension. He thinks I have CCI, but none of my images show it. He has never given me a measurement. I do have neck pain however I’m not sure if it’s from a”leak”, Or atlantooccipital joints by my skull. .

I will be speaking to Dr. Nakaji after he receives my post imaging.

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I’m confused by this statement. A hypoplastic vein is typically not dominant as it’s very small & can even be considered under-developed (thus the hypoplastic description). Your dominant IJV would be the vein that looks more normal which in your case is likely the one that’s only 50% stenosed. With that in mind, what @Jules said about having that IJV opened more fully instead of doing a revision on a vein that is very small & not likely very functional.

This description makes it sound like your decompressed vein closed further rather than opening as expected. Sometimes a venoplasty (i.e. ballooning the vein) can get it to re-open.

I assume this is post op which is scary information.

CSF leaks often heal themselves once the cause of the IH is removed. What might have happened in your case was the intense level at which you were exercising was too much for a still healing brain & IJV & caused “an old wound to re-open” i.e. if you had a leak, & it was healing, the patch your body created may have popped off which put you back into a cycle of pain & other nasty symptoms.

With a surgery as serious as IJV compression, it would be best, EVEN if you feel great, to start back slowly into exercise. Try an exercise at a much lower level than you would normally do it then wait a couple of days to try it again if you have no increase in symptoms & move forward by baby steps. I realize though that this advice is coming a bit late.

Just so you know you’re in good company, I did the same thing after my first surgery i.e. too much too soon in the realm of exercise, & it set me back. I wasn’t dealing w/ IH & IJV compression. My setback was increased nerve pain.

We know for a fact that ES symptoms, even vascular ones, can come & go w/o reason. I can’t explain the symptoms respite you had prior to your surgery, however, I can fairly guarantee that at some point your symptoms would have returned & perhaps with a vengeance. I think you made the right decision to deal with the cause of your symptoms vs waiting for more time to pass & more potential vascular & nerve damage to occur.

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Hi Isaiah 40:31,
Thank you for your response. Always so helpful!

Yes, my dominant side was my small hypoplastic side according to my NIR. My brain kept trying to send the blood over to that side for drain. I know this isn’t very common, but this is how my jugular was. It probably was not hypoplastic from birth.

Yes, it sounds like it closed off completely now. We will see what my NS has to say about wanting to do a venoplasty. I’ve not heard much about them. Do they work? Do you know?

No, my NIR said I had the highest pressures he has ever seen PRIOR To my surgery. I am wondering if this could be heart related due to the compression Causing fluid? And yes, it is very scary!

I’m having such severe dizziness and chronic heart palpitations, which give me a dry cough. My heart is skipping beats- 6-7 per minute. I know the jugular drains to the heart. One NS said heart is not involved, so I didn’t think about it again. But I know they’ve got to be related.

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@Luckee7, Dr. Arcot in NY wants to also do a venoplasty on when he does an angio-venogram to check out the vein compressions in my upper chest, neck and head/brain. We already know the brachiocephalic vein is compressed in two spots, and the jugulars, too. He said while he’s in there looking around, he’ll do the venoplasty – or ballooning – to open the veins up. Said it might give minimal relief until we can do stenting, or a bypass, if he sees it’s necessary. We are eager to see the ballooning makes any difference or not. Remember, it likely won’t be a long-term fix, but possibly could buy a bit more time if you need. Best wishes, your case sounds frustratingly familiar, including the heart issues! (Mine was checked into, and besides likely vagus nerve involvement, am also dealing with PAH - pulmonary arterial hypertension, elevated pressures and enlarged right ventricle. I’m 36 yr. old…)

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Thanks for the response. I’m so sorry for all you’re going through. Snd have been through! Best of luck with your procedure. Does the balloon stay in the vein? I’m assuming not.

Were your heart issues secondary to or a result of your compressions? Also can I ask what your symptoms were for your compressions?

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I do remember you being unsure about whether to go ahead with the surgery as you were feeling better, & I’m sorry that you’re experiencing symptoms again- it does all sound quite confusing as to what’s going on and as to what might be the cause :hugs:

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Ah…that makes more sense. I think a normal vein can become hypoplastic due to severe compression & lack of blood flow through it, but I could be wrong. Makes sense to me though.

Venoplasties can help re-open a vein that hasn’t responded well to decompression, but as @GeorgiaKay noted, it’s often not a long-term fix. I believe we’ve had a few members who had successful venoplasties i.e. the vein stayed open after it was ballooned, at least for a while. I truly don’t know if that ever provides a permanent fix to a vessel that won’t stay open. The “balloon” (it’s not really a balloon) is not left in place. I’m not exactly sure how the procedure works so hopefully your NS can give you those details.

Still scary, but I’m really glad this wasn’t post op!!

Interesting thought. I went through a period where I would get pretty extreme heart palpitations when I exercised, & they also made me cough so I know what you’re dealing with. Now that I think about it, that hasn’t happened in a number of years. It just occurred to me that if it was caused by my vagus nerve (which I knew nothing about at the time), getting my styloids shortened might have allowed my vagus to heal & that stopped the palpitations & cough. Regardless of my situation, I’m very, very sorry for this huge setback you’re experiencing. I will be praying that one of the doctors you’re working with will find a fixable cause. :folded_hands:

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