New to the Forum, Not New to Pulsatile Tinnitus

[JaneFromBoston]

I've just joined the forum. Seems good for us! We really are suffering and people underestimate just how much.

My story is that I had surgery for a brain aneurism back in June (the procedure was the insertion of the Pipeline Embolization Device) and when I woke up from the surgery still in the operating room I heard this awful pulsing in my head, on the left. The anesthesiologist was standing behind me, the intern in front of me, and they were trying to figure out how to get my blood pressure down, which had apparently gone up to 235.

Then I conked out and woke up again in recovery. It's my neurosurgeon who diagnosed it. He also ordered a MRI and MRA of my brain (with contrast) but the radiologist didn't report anything that alarmed anyone. What do I know!

Since then I've gone from physician to physician and they all say the same thing: NOTHING to do about it. The ENTs say this; they didn't even include the "pulsitile tinnitus" on my report. THANKS to WOOSHERS for getting a diagnostic code, tonight I wrote my neurologist and asked him to get that on the record.

I am here because I don't accept that there's nothing that can be done. There are even diagn to bring it down.

Today I was out in the snow to xc-ski and I used to enjoy the quiet of nature, and NO MORE. I hate it and couldn't want to put my iPod on and go home. In fact the exercise makes it worse because it makes my pulse increase which increases the pulsing!!

Thinking of trying this Dr. Shapiro in NYC. There may be hope!!!

All of you - thanks for writing your stories and hopefully we can all find some relief!!

 

[billy43]

Hi Jane.Sorry that you now have to deal with Pulsatile Tinnitus following such a serious surgery. I have PT . I get by fine but the first 2 years were an extreme struggle. I saw several specialists. Dr Shapiro was by far the best. He's a nice person.Extremely knowledgeable with PT. Will take the time to thoroughly look over your previous test and run further test if he thinks it will help. Ok good luck with things and hopefully your PT will resolve or at least diminish. Billy43

 

[JaneFromBoston]

Billy, sorry for taking so long to respond. The 3-hr angiogram and ballon occlusion with Dr Shapiro showed that my blood flow is just fine. There isn't even any plaque! (Which means I don't worry any longer when I swim in the lake.) And I had a great time in the Big Apple. But still thump thump thump. Now I'm doing weekly chiropractic plus PT to help loosen the very tight neck and SNM muscles. Very good. NO quieter pulsing, however. On the plus side, I'm sleeping through the night again. Plus a lot of prayer. Maybe acupuncture.

How do you deal with plane rides?

Maybe the Univ of Michigan study will have something to help us. It's a long haul, I think.

Keep in touch!

 

[VictorDedalus]

@JaneFromBoston, I'm writing to commiserate, although my story is somewhat different. I underwent a craniotomy in Dec. of 2016 for resectioning of a meningioma. I awoke to a slew of complications, including 4th nerve palsy (double vision), balance issues and extensive nerve damage in my left arm. I also had pulsatile tinnitus for about a week during recovery, but it gradually faded. Seven months later, I spontaneously experienced the activation of a severely intrusive high frequency tone in my left ear - same side as my tumor. It's plagued me ever since.

Brain surgery is life-altering, as is tinnitus. I wish you well in your recovery and hope you achieve greater clarity concerning your PT.