Lightheadedness non stop with IJV

Symptoms and Treatments
1

Hello Everyone,

Would dearly like your help.

Symptoms that remain after IJV vascular decompression surgery and stents placed in left IJV.

1. debilitating non stop lightheadednes

2. high resting heart rate

3. stiff neck

4. flushing in right arm mainly but improved alot since surgery

5. If I sleep on a few pillows or sleep wrong on pillow the lightheadedness gets worse and can take a day or 2 to settle back to base line.

6. Blood still pools in feet when upright but less so than before surgery.

7. Legs and particular at ankle level get itchy when walking but not as severe as before surgery

Had IJC vascular decompression surgery with one stent placed at C1 level as the IJV couldn’t stay open by itself. This got rid of the headaches but the lightheadedness remains and its severe and the intensity of it was getting worse before surgery and the intensity of it getting worse stopped at a level and stays there or gets a bit worse if sleep wrong and can take a day or two to go back to baseline.

Have had a catheter venogram with manometry carried out and 2 more stents were telescoped into the stent at c1 level as there was still collaterals at c1 level, ijv was closing in below stent and was causing vertigo with head turning to the left. Had catheter angiogram of the carotids and vertebral arteries and checked for Bow Hunters syndrome too, all ok there.

Did an MRI with leak protocol, nothing showed up on that, did one myelogram, nothing showed up on that.

This severe lightheadedness which is non stop (no position is better but can get worse if up for a while or if walking too long ie over 15 to 20 minutes) is the worst symptom and is debilitating. Its not POTS, as this has been covered and the meds and treatment didn’t work at the start of this journey 8 years ago and symptoms were only getting worse due to IJV compression which nobody spotted for along time.

At the moment, trialling celiprolol for the high resting heart rate, 6 weeks into this but it doesn’t seem to be helping (only with when get up fast there is no head rush feeling).

Could there still be some residual vascular problem? When arms are moved forward the flushing gets slightly worse on right arm (but flushing not as bad as it had been before surgery).

Anyone had anything similar and did anything help?

Thank you.

2

I’m sorry that after surgery & stents you’re still feeling like this, it sounds horrible & is obviously hard to exist like this! I’ve not experienced this personally as I was lucky & surgery resolved my vascular symptoms, just off the top of my head a couple of things the might be causing issues spring to mind…
I’m sorry if this is a silly question, but what is your right side like, is there any compression that side, could that be contributing at all?
The high resting heart rate could be a vagus nerve issue, whether it’s being irritated by the positioning of the stents perhaps? Another possibility is whether with all the venograms you’ve had done, did they look for any compression at the jugular foramen? One of our members recently posted imaging showing a very narrowed jugular foramen (jugular foramen syndrome), so wonder if there could be any compression there?
Some people have found it can take quite a while for the head to readjust to the new change in pressure- I’m sorry I can’t remember how long ago you had your surgery? Have you had a lumbar puncture to see if there’s still high intracranial pressure, do you feel as if you still have head pressure?
Also have you looked at TOS? The arm symptom might be from that, we’ve had quite a few members who have vascular compressions in different areas, like May Thurner and Nutcracker in the pelvis?
I hope that maybe others who’ve had vascular issues still can chip in as well. Sending you a hug :hugs:

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@Shauna - I’m very sorry for what you’re still dealing with but am glad that it’s all not as severe as before your surgeries. @Jules has suggested everything that came to my mind when I read your message. I agree, too, that I hope other members who have had similar experiences to yours will share their knowledge.

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Just at thought about the lightheadedness, is it very much like dizziness? We’ve had a few members who have also been diagnosed with Superior Canal Dehiscence Syndrome- the theory is that if there’s been high intracranial hypertension for a while, the pressure can wear away the little bones in the ear & can cause dizziness…It was just reading @EaglesWin 's discussion which reminded me about it.

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