This Is MS Multiple Sclerosis Community: Knowledge & Support

My wife has permanent whistling in her ears, and sometimes painful throbbing, both of which seem to be getting progressively worse. Has anyone else suffered from these symptoms and had subsequent relief from CCSVI? More importantly does anyone know of any medications, exercises, or anything at all, that can alleviate the discomfort?

I've had issues again since my procedure for CCSVI, but for a long while after I didn't have the throbbing/pounding in my ears. I get vertigo (again, that was about 6 months after that it came back), so I sleep inclined rather than flat and that seems to help. I haven't had issues with whistling. Hope that helps give you some ideas on solutions that may help some.

My left ear had a whooshing sound it before treatment, but that is gone now. It was never painful, just really odd.

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CCSVI procedure May 31, 2010
RRMS - Official diagnosis January 2009
MS symptoms since at least 2000 (EBV trigger 98?)
75 - 80% Resistant Stenosis in Left Jugular - Stent
Tokuda Hospital, Bulgaria (Dr. Petrov)
Immediate and substantial results!!

Before the venogram, I had some occasional whistling in my ears. After, it's become much louder and more frequent. And in the last couple of weeks, one ear keeps closing up and I can't get it popped open until it's ready to open by itself.

Rosegirl, have any medications been suggested for you to alleviate the symptoms?

Hi all--
Jeff developed objective (meaning the doctors can hear it) pulsatile tinnitus due to blood flow he can hear in his left ear. Before angioplasty, he had no flow thru his jugulars, now that he has flow thru his tight left jugular, he can hear it, since it's right up against his cochlea. Not much to do, he uses a white noise machine at night so he can sleep...but it's annoying. It makes a whoosh sound along with his heartbeat (that's why it's called pulsatile)

Ask the doctor about pulsatile tinnitus...it can actually be a sign of a venous malformation in the jugular (Jeff's stent causes the blood to make a whoosh sound)...and may be an indication of CCSVI. Hope that helps--
cheer

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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
dual stents placed 5/09
CCSVI in MS

GeoffB

I don't have anyone to ask -- yet. I had my venogram at Georgetown U in DC, but they're not doing it anymore for lack of good results, and the IR who did it has moved to another hospital.

When I can find someone to do the second one, I'll ask about it. I suppose I could go to an ENT, but I suspect that things will change again with the next venogram, so I'm not going to waste time and money in the meantime.

My symptoms are annoying, but I can cope in the meantime.

GeoffB - I've too have permanenet whistling in ears, and a dial-tone sound overlay. I've learned to ignore it but in a quiet place it is impossible - at those times I understand why Van Gogh cut off part of his ear. I am hoping treatment helps this. I've heard stories where it did and stories where it didn't so...fingers crossed for your wife.

SaintLouis what stories have you heard where treatment has helped?

Cheerleader thanks A LOT for this explanation, which my wife desribes as very clear and exactly what she feels. She had a venous scan recently which apparently showed very little, so we were a little despondent about that. One question - what's a white noise machine?

My MS headaches were daily for 5-6 months - none since my 1st procedure. Ringing in my ears is still 24/7 but the volume is about half as loud now.

GeoffB: search on Google in "White Noise machine" or "white noise generator". It's a machine that makes a background sound to block out sound in your environment. They often have nature sounds, like rain or waves. It masks tinnitus, blocks distractions, etc.

I swear by my Holmes air purifier as a white noise generator. It serves double duty by circulating the air too.

I found that things quited down after the procedure, but became loud again and I've learned that I most likely have re-stenosed. I have much noise in both ears but the pulsatile tinnitus in the left ear when laying on the right side can become pretty loud.
I have been seeing an upper cervical chiro. (there is a thread on the forum on this subject) and I have noticed that the heartbeat has become much quieter now in the left ear. It used to wake me up if I flipped to the right side but now it doesn't. So I feel the atlas adjustment has helped me in some areas.
I do think the white noise machine would be a wise purchase though.

I had tinnitus in the left ear after my venoplasty. It went from a mild intermittent whistling to a louder more continuous sound. I'd been taking nattokinase and serrapeptase. After my GP thought I might have a blood clot (I had an elevated d-dimer blood test) I increased my dosage from 1 pill each (2,000 fibrinolyitic units nattokinase and 40,000 serratio units serrapeptase) to taking each pill twice a day on an empty stomach for a few days.
The tinnitus decreased markedly, the places I'd been ballooned 8 months ago hurt, the tinnitus went mostly away. I stopped taking both enymes. I can still hear it sometimes at night faintly after a stressful day. I'm up for round three in a few weeks, and I got the blood test while testing for any hyper coagulation issues (none found).