Tired of Being a Mystery

[Rachel1018]

Hi, I am currently 24 years old. When I was 22 I started having pulsatile tinnitus in my left ear. I have seen 2 different ENTs and 4 neurologists in the last year and a half. I had an MRI, an MRA, an angiogram, 2 CT scans, and a lumbar puncture since all of this started. The first CT scan I had showed that I was missing a piece of bone that separates the ear canal from the brain. My ENT and neurologist agreed that I should undergo major surgery (middle fossa craniotomy and left mastoidectomy) to fix the issue and put a new bone in where mine was missing. So in December I had my head cut open and had to be off work for 6 weeks. I'm still recovering now, as it can take a full year for everything to heal. About 2 weeks after surgery, the pulsatile tinnitus returned and it hasn't gone away. I am beyond frustrated that I put myself through all of that for nothing! Neither the ENT or neurologist can figure out why the tinnitus came back, because the bone was supposed to block out the brain pulsations I'm hearing. Since the surgery, I have had another CT scan and the bone they put in looks like it's supposed to. I don't want to live with pulsatile tinnitus for the rest of my life! I'm only 24 and want to experience so many things, but having the noise constantly there annoys me to the point where I don't want to do anything but lay around. It makes it very hard to focus on my job and living a happy life.

 

[glynis]

Aww I have just read your story and what you have been through .
I hope over time you get some relief from your pulsitile tinnitus.
Have you tried beta blockers to see if it helps reduce the pulsation if your doctor agrees

Please don't give up hope.
My youngest son is now nearly 21 and when he was 7 he had his ear bones removed and a mass removed when 16 in his middle ear....
He is doing well and getting on with life ,has a job,car and at uni .......
Stay positive your life will get better too....lots of love glynis

 

[Karen]

Hi,@Rachel1018,

I read your story, too, and am so sorry you went through all that, only to see the pulsatile tinnitus return. I have pulsatile tinnitus, too, and I agree that it is beyond annoying, and can really make you feel like not wanting to do anything.

In reading your story, I was wondering if the lumbar puncture had any effect at all in reducing the sound? Some people with PT have benign intracranial hypertension, which causes pulsating. Did the doctors test you for that?

Best wishes, lots of sympathetic hugs,
Karen

 

[Rachel1018]

Yes, they did test me for that. I actually had a CSF leak that they fixed during my surgery. But my pressure level was normal when they did the lumbar puncture.

 

[Karen]

Well, since your pressure was normal when it was checked, that's good. Will they be monitoring it, going forward, to be sure it remains at a normal level?

 

[Rachel1018]

They will be monitoring it. If I start having bad headaches they will do more testing to make sure it's still at a normal level.

 

[Baxette]

So sorry about all you've been through. Hugs.

 

[Magik]

Was your pulsatile tinnitus constant (24/7) or it appeared only in certain head positions/movements, and for few moments?

Be strong!

 

[Rachel1018]

I've had it both ways. There are days when I can't seem to escape it and then there are days where I only hear it when I'm laying a certain way or change positions.

 

[Rachel1018]

I've also noticed that it seems worse after drinking alcohol or exercising, like when my heart rate is up or blood pressure is raised. But I've had all the testing done and they didn't find anything abnormal with the blood vessels near my ear

 

[12Valve98]

Im in the same boat. I have had PT since August 2015. 2 weeks ago I had surgery to reinforce the sigmoid sinus and rebuild the bone. I had a hard recovery with bad migraines and just not feeling well. Im finally starting to feel good except the whooshing came back to today. Its very dim compared to how it was before the surgery but I fret that it will soon return stronger than ever. Im thankful for the two weeks that I had though. The doctor said give it 6-8 weeks but honestly I feel that I am now stuck with this. I feel defeated and angry right now. I thought it was done and maybe with a little luck it will go away on its own but Im not confident. I traveled half way around the country to get it done and will be dropping most of our savings on it just to hear the sound again. Please let me know what you find Rachel1018 as I will do the same! Maybe together we can find a permeant fix for this damn curse!

 

[The Red Viper]

My view on this is that the definition of "normal" test results just doesn't cut it. Normal for one person is rarely what medicine considers to be statistically "normal." Thus when an MRI, MRA, CT, etc. come back "normal," it just shows that there isn't something life-threatening. It's like inspecting a car. A thorough workup by a mechanic can tell you that the car will run fine, but there might still be some unique "kinks" to each car that most mechanics will either look over or ignore.

 

[Rachel1018]

I agree, but doctors are always comparing results against numbers. I appear to be healthy with no concerns, yet I still have pulsatile tinnitus. Luckily, I only have to drive 2 hours to see my neurologist and ENT. But it seems like such a waste of money to keep having these appointments and tests done when there is no relief. Thank god for insurance, or I would owe upwards of $100,000 over the last 2 years! I have to change insurance next year and will probably have to change doctors. I guess that could be good or bad. Maybe I need a fresh opinion.

 

[WestCoastGirl85]

Hello, I also know the pain and heartbreak when you finally have hope and you get let down. Doctors say it will go away once you do this, and it's still there. I got my T when I was 25, just over a year into my new marriage. You can do this. you are strong. If I can do it so can you. You should see the videos on my youtube channel showing how scared I was in the beginning and where I am now.

 

[whale]

Hello, I also know the pain and heartbreak when you finally have hope and you get let down. Doctors say it will go away once you do this, and it's still there. I got my T when I was 25, just over a year into my new marriage. You can do this. you are strong. If I can do it so can you. You should see the videos on my youtube channel showing how scared I was in the beginning and where I am now.

whats the name you your youtube. You don't want to know what comes up with a WestCoastGirl85 video search.

 

[Hannah181088]

Hi,

I have been having these symptims for 5 days now.

Please tell me, are you still suffering from tinnitus? Do you know how to cope?

 

[Hannah181088]

Is there any hope? Has anyone been cured?

 

[GregCA]

Is there any hope? Has anyone been cured?

It depends on your root cause... You list anxiety in your profile, but it's generally related to something wrong with your hearing apparatus (which is not always detectable unfortunately).