6+ Months Pulsating. Help Needed!

Hi,I just wanted to give you a brief overview of my situation and ask for your advice. My PT (subjective) started in Jan/Feb with a bad sinus infection and otitis media. Since then I've had an MRI, MRV, MRA, CT scan, and everything else under the sun. All normal. The thought of having a vascular condition that could just kill me or cause a stroke out of the blue is absolutely terrifying. Despite this, I've pretty much given up and got used to my PT. The only option left is an angiogram, yet given the dangers associated with it, I really dont know if its worth it. I also find it hard to believe that it could be something like an DVT etc, based on the fact that it began during an ear infection. Have any of your guy's pt start after an ear infection? If so, did any of you get a diagnosis? Also, I would appreciate you're opinon on getting an angiogram. I'm at a crossroads between acceptance or taking the next, potentially dangerous, step. Some advice would be great. Thanks for your time

 

Hi @adamj

I have PT due ear infection ! Mine isn't to bad NOW( in the beginning i was in a very very bad shape emotionally ),but bothers me sometimes . I had all the exams you had plus angiogram . Everything came fine. Honestly i don't think you will find much doing angiogram once everything was fine w the others exams. Took my exams to the best doctor in NYC Dr Shapiro at NYU. He's a very nice and professional doctor . We spent an hour looking into my exams on the screen . Also my pt sounds more like a car alarm than whooshing.

@Karen congratulations for always being very kind and helpful!

Rog

 

Hi Adamj.I also have PT.and also have all the same scans you had.mine is also subjective.i saw several specialist including Dr Shapiro.who like Rog says is excellent.only dr Shapiro recommended I go for the angiogram.i have decided against that for now. it just seems like such a longshot to me that an angiogram will find anything especially when the Pt is subjective like yours and mine.i agree with Karen.get a second opinion on your scans before getting such an invasive test.for a fee Dr Shapiro will even look over your scans if you were able mail him copies.well good luck with things the rest of the way. billy43

 

Hi @Karen . If haven't done the angiogram it would bug me . So decided to get it done . You know we try EVERYTHING and ANYTHING that could possibly help us with tinnitus . But after the angiogram done I don't think it was much of a help once I already had a lot of test/exams done. So I don't think he will find anything in the angiogram .

How a manage my PT? Family , God and girlfriend .

 

I think the worst part for me is just the not knowing. Although my PT (which is a long "whoosh") is pretty bad and apparent, I would be fine with living with knowing it was nothing serious. Thank you Karen and others for your advice and suggestions. Although I am seeing highly acclaimed neurotologist (not neurologist) at USC in Los Angeles, I still think it may be a good idea to shop around my tests.

 

Hi Karen, adamj, Rog and Billy43, I have had this PT for more than 6 months. It started after a whiplash-injury. It is extremely loud and always present. Each moment of my life. I also was about to have an invasive angiogram, but in the very last moment I canceled the appointment. Before, I hat MRA/MRI/CT-native and Doppler. All perfect.

My question: I heard their is a very special CT of the temporal bone. (Hope, that is the right translation). As I already had those exams above, do you think it is worth to add this special exam? Shouldn't they have seen everything on the MRI/MRA/CT-native? I am not sure about it. What is your experience

I would really love to hear from you how you get along with this nasty condition. Because I have problems to manage anyhow. I am full of panic and fear.

Another point: Do you thing that the PT is comparable with regular tinnitus? Regarding treatment and habitation. (My worst case scenario is, that it might had been an objective tinnitus due to the whiplash in the very beginning, but then - in the course of months - it changed to the "normal" auditory-paths-neuronal-story. That would be dreadful, because I fear I get never used to that pulsating hissing.)
I am sorry for my poor English. I am from Germany. Hope you can understand what I was going to ask.
A big hug specially for you, Karen, and best wishes to all of you,
Catherine

 

hi Cathrine.sorry to hear that your PT is causing you so much distress.in regards to CT of the temporal bone.im not sure if that is the same as what you already had with your CT -native.Karen may know more on that,my PT is a pulsating hissing just like yours.best I can tell you is at the six month mark I was still doing terrible and felt like it was gonna be that way forever.but im doing much better at 13 months.i just try to stay as busy as possible and try to keep a positive attitude which obviously is not easy.one other positive post I saw was from Dr Nagler,who has treated a good amount of PT patients.he stated that PT patients have the same success rate with TRT therapy as those with regular tinnitus. also your PT was the result of whiplash injury so as time goes on it should get quieter or hopefully resolve on its own.ok good luck with things and hope you start to feel better. billy 43

 

Hi, @adamj
I took an angiogram and the doctor told me that he intends to take it with me awake, in order to take "still" pictures. While taking the pictures he told me to stop breathing.
I am not familiar with the dangers of an angiogram, if you want, please tell me about that.
All I want to say that maybe it's better to take an angio-MRI, cause an angiogram, let me tell you, was one of the most horrible things I went through, and after that I was staggering, I had very high Tinnitus, and I was given a diagnosis of intracranial hypertension, but not proper treatment for that.
If you are awake during an angiogram, the iodine dye they release in your neck/brain burns like sulfuric acid (I was told that I will have a "hot' sensation, but the truth is that you have a chemical burn sensation.
The solution goes also into your eye bulb, enlarges it's volume and I had the sensation that my eye will explode!!!!!!
One of the most difficult experiences in my life, with absolutely no benefits)
Although I was given in the aftermath the diagnostic of "intracranial hypertension", they didn't prescribe me the treatment indicated in those cases, that cause the production of lower quantitities of cerebro-spinal fluid, but other medicines that aren't linked with hypertension, but that was only my case, maybe if your case the doctors, if they see something, they will prescribe you proper treatment.
Angiogram while awake was the most challenging things I had to go trough, only to be given mocking treatment.
Maybe an angio-MRI is better, they fix your head somehow and maybe the solution in that case doesn't burn and maybe you don't have to be awake.
Just wanted to help.

 

@adamj
Oh, and before me there was another patient who not only had an angiogram, but during that they fixed her aneurysm, but they anestheteized her!!!!!. She came back feeeling happy, she didn't feel a thing. So don't take an angiogram while awake, my advice.