Suggestion for Those with Pulsatile Tinnitus — Get a Scan and See a Specialist

[HeidiB]

Hey all! Just a suggestion here to make sure if you have PT you need to be getting an MRI/MRA or a CT scan and get to a good ENT that specializes in the ear or a neurosurgeon even. They discovered I have possible mild dehiscence of my right sigmoid plate which is probably causing this. I've been too probably 3 ENTs 3 audiologists, pcp, neurosurgeon you name it! Finally someone knew of this and did the CT and that's what they found. Don't stop looking cause someone tells you you have to live with this. Maybe you do or maybe don't. Pulsatile T Isn't the same as regular T. Just some advice here.

 

[GregCA]

Hey all! Just a suggestion here to make sure if you have PT you need to be getting an MRI/MRA or a CT scan and get to a good ENT that specializes in the ear or a neurosurgeon even. They discovered I have possible mild dehiscence of my right sigmoid plate which is probably causing this. I've been too probably 3 ENTs 3 audiologists, pcp, neurosurgeon you name it! Finally someone knew of this and did the CT and that's what they found. Don't stop looking cause someone tells you you have to live with this. Maybe you do or maybe don't. Pulsatile T Isn't the same as regular T. Just some advice here.

Very true! It took half a dozen docs to look at the same data (CT, MRI, etc) until I found one that figured it out. Persistence is key.

 

[Tinniger]

They discovered I have possible mild dehiscence of my right sigmoid plate which is probably causing this. I've been too probably 3 ENTs 3 audiologists, pcp, neurosurgeon you name it! Finally someone knew of this and did the CT and that's what they found. Don't stop looking cause someone tells you you have to live with this. Maybe you do or maybe don't. Pulsatile T Isn't the same as regular T. Just some advice here.

What did your tinnitus sound like, - exactly ?

 

[Tinniger]

Very true! It took half a dozen docs to look at the same data (CT, MRI, etc) until I found one that figured it out. Persistence is key.

Sigmoid plate dehiscence, too?

 

[GregCA]

Sigmoid plate dehiscence, too?

Otosclerosis.

 

[HeidiB]

@Tinniger I still have the tinnitus. I haven't done any surgery or anything like that yet. I'm taking diuretics which my doctor told me half to 2/3 of people have success with the diuretics. Success meaning it resolves itself or it's not as loud and intrusive. if that doesn't work then I will investigate further. The T Sounds like a high-pitched kind of hissing there's also some other sounds maybe that sound like crickets or cicadas and all of its pulsatile… In sync with my pulse or heartbeat. Hope this helps!

 

[Margaret21]

@Tinniger I still have the tinnitus. I haven't done any surgery or anything like that yet. I'm taking diuretics which my doctor told me half to 2/3 of people have success with the diuretics. Success meaning it resolves itself or it's not as loud and intrusive. if that doesn't work then I will investigate further. The T Sounds like a high-pitched kind of hissing there's also some other sounds maybe that sound like crickets or cicadas and all of its pulsatile… In sync with my pulse or heartbeat. Hope this helps!

Hi Heidi, thanks for sharing this information! By any chance was your Doctor able to hear your pulsatile tinnitus with a stethoscope? Also which type of Doctor did you see? Again thank you so much and best wishes.

 

[HeidiB]

No he cannot hear it. I went to an ENT but he specializes in the ear. I went to two other ENTs who had no clue and sent me on my way...there's a clinic in San Francisco that specializes in PT and a guy Dr. Shapiro also in NYC that you can send your scans too for a fee and they will take a look at them. If they think they can help you they will recommend you go there. My Dr is in Chicago. I'm going to get a second opinion by these other two because they are telling me surgery works half the time...and this diuretic is making me feel terrible and my tinnitus is getting louder and driving me crazy. It was tolerable and now it's not and I'm not sure why. Hope that's helpful.

 

[Margaret21]

No he cannot hear it. I went to an ENT but he specializes in the ear. I went to two other ENTs who had no clue and sent me on my way...there's a clinic in San Francisco that specializes in PT and a guy Dr. Shapiro also in NYC that you can send your scans too for a fee and they will take a look at them. If they think they can help you they will recommend you go there. My Dr is in Chicago. I'm going to get a second opinion by these other two because they are telling me surgery works half the time...and this diuretic is making me feel terrible and my tinnitus is getting louder and driving me crazy. It was tolerable and now it's not and I'm not sure why. Hope that's helpful.

Hi Heidi, thanks for getting back to me. I know how you feel. I've been at this for 11 months. 5 ent, 1 audiologist, 2 pcp, tmj specialist because one of the ent said I had tmj. I am not sure if I have pulsatile tinnitus because the constant sounds I hear are continuous since onset, only about 5 times upon waking I have heard a fast pulsating sound in my ear similar to a heart beat but it goes away quickly. I'm sorry to hear you are not better. I never knew of tinnitus until the day I woke up with it very abruptly. I keep trying to get used to it but I'm not there yet. Since onset I've learned of so many people I personally know that have it and are doing great. I just don't get it because it's been a life changing condition. I hope we all find some type of relief. All my best to you.

 

[HeidiB]

You're welcome Margaret! Yes there are MANY people that live successfully with this! I have good and bad days so I'm hopeful that it's gonna continue to get better! I too went to a neuromuscular dentist and was told by an ENT I have TMJ so I now I have a mouth guard. I don't think that's what mine is from. I think it's the dehiscence or a vascular issue which has been brought up too! There is a Dr named Dr. Allen Rohe who is based out of Arizona. He's been a life saver. You can google him. He has a program that really helps people accept and habituate to their T more quickly and helps with anxiety and stress. If you're having a hard time maybe give him a call to learn more about what he does! Big hugs!

 

[Margaret21]

Thank you again Heidi! Truly appreciate all the information. I wish you more of the good days. Hugs!

 

[RichJ]

"The T Sounds like a high-pitched kind of hissing there's also some other sounds maybe that sound like crickets or cicadas and all of its pulsatile… In sync with my pulse or heartbeat."

My PT has a similar sound - high pitched. I have had all of the tests and have been to three neurosurgeons. The last one that performed my angiogram only saw a bit of "a loop" in one of the veins behind my left ear. He had no definitive answer if that could cause the PT. These scans / tests are getting expensive. I suppose my next stop will be calling the PT clinic in San Francisco and have them look at the scans.

 

[Margaret21]

Hi Rich, Heidi provided some great information. May I ask was your angiogram a ct angiogram of the head with iodine which usually takes half an hour or was it a more extensive one that includes more than just the head and with sedation? I agree these tests are very expensive. I don't know if mine is pulsatile though. Thanks and best wishes.

 

[Vimercati Ailton]

hi I just had a surgery due pulsatile tinnitus. there is no other way for this kind of tinnitus apart surgery. At the same day it stops but in the very deep of your head you can feel something trying to bring it back but no. As soon as the whole is blocked with bone wax it stops. Normal Tinnitus ringing still there but at least pulsatile gone hope forever. Dr S Freeman done it for me, thanks

 

[RichJ]

"Hi Rich, Heidi provided some great information. May I ask was your angiogram a ct angiogram of the head with iodine which usually takes half an hour or was it a more extensive one that includes more than just the head and with sedation? I agree these tests are very expensive. I don't know if mine is pulsatile though. Thanks and best wishes."

I believe it was the 1/2 hr test. I was awake for the whole procedure. I also had a CT scan and MRI before this one.

 

[Error404]

Yup. Though I was relieved that there is no serious cause, I'm annoyed that I can't do much about it. Turns out I have a "high jugular bulb" and something about the sigmoid sinus vein protruding into the mastoid. My mastoid bone is also opacified (cloudy) but not from infection - seems to be a result of cochlear implant surgery. These are fairly minor anatomical variations but have resulted in a sort of low hum, occasional hearing of my heartbeat, and a whoosh/roar whenever I yawn or turn over in bed. Very occasionally, I get sound distortion from my implant. I'm trying to keep it in perspective as I CAN HEAR after thirty years which is much more important than an aggravating noise.

 

[Margaret21]

"Hi Rich, Heidi provided some great information. May I ask was your angiogram a ct angiogram of the head with iodine which usually takes half an hour or was it a more extensive one that includes more than just the head and with sedation? I agree these tests are very expensive. I don't know if mine is pulsatile though. Thanks and best wishes."

I believe it was the 1/2 hr test. I was awake for the whole procedure. I also had a CT scan and MRI before this one.

Thank you Rich.