With all that said in my previous PT post, I do want to say something else:
I have the most wonderful husband who is supportive, funny, smart, sympathetic, and strives to be his best for me everyday.
I have three cute little guinea pigs that make me giggle everyday and are a testament to our financial progress since moving (we only got them once we could afford for their care, and since we made a blind move to a place without having jobs it took months before we could get pets)
I have an apartment full of things that remind me of our journey and that comfort me because they remind me of home,
I have a family of people (both blood and law relatives)that love me and that I love and respect.
We are financially stable, I have a full time job with a boss that listens to me suggestions.
I have clothing on my back, a roof over my head, and live in a safe environment.
I have not experienced trauma from my whoosh (such as a bomb or gunfire that could damage the ear) and I am not in pain from my whoosh.
I will NOT let this stupid whoosh and that stupid doctor drag me down. I will not let this whoosh out-weigh my happiness, no matter how difficult it can be to ignore it.
Sunday, May 31, 2015
PT Update #3.
Last week I finally had my appointment with the ENT. I was nervous but very hopeful and optimistic.
Turns out, hope can be dangerous.
Within seconds of him opening his mouth I knew he wasn't the right doctor. I believe his first words were "There's nothing that can be done." Other excerpts of the "conversation" (I put conversation in quotes because it was basically just him lecturing us) were "Anything you read online is pretty much grasping at straws" and "It isn't very common in people your age but it isn't unheard of. It's just a sign of early onset hearing loss", and "It's really very, very, common. Asking someone if they have tinnitus is like asking if they have a right thumb, it happens to everyone", as well as "It's just something you can't really do anything about so you'll have to learn how to cope with it." and "Sometimes once you actually reach the point of severe hearing loss, hearing aids sometimes help". Also "You probably damaged your ear from hearing a loud noise or listening to loud music."
Um, okay, first I think I would remember if something suddenly "happened" that set off this noise. AND if it was loud music the majority of my generation (and my parent's generations for that matter) would have what I do. It seems to me that HE'S grasping at straws.
Zero bedside manner. Zero awareness that even if he was correct, he was basically saying "You can deal with the endless, distracting, overwhelming, maddening pulsing noise in your ear for the rest of your life or until you go deaf."
When Justin asked about Intercranial Hypertension, something that multiple studies have pointed to for being linked with PT, the doctor pretty much smirked in his face. Not only is Intercranial Hypertension linked to PT, but it is specifically linked to young (check) women (check) who are overweight (check) and on birth control (check). The fact that the doctor dismissed it right away and said it was grasping at straws made it very apparent that he doesn't know the modern research and is not willing to even admit that it could be a possibility. He was just so arrogant and condescending I wanted to punch him.
The other obnoxious thing about this appointment is that he basically exclusively spoke with Justin. As if I wasn't sitting there. I started crying out of anger and frustration. Both of us are taking time off of work and waited weeks for this appointment just for him to tell me what a google search for tinnitus will tell me. Pulsatile Tinnitus IS NOT your run of the mill tinnitus. Yes, everyone experiences tinnitus at times. Yes, tinnitus is very common. But is PULSATILE tinnitus common? How is it that it changes when I bend down or move my neck/head? Why does it lessen if I push on my carotid artery? Why do I sometimes hear that high pitched tinnitus noise AND the pulse at the same time? How is it that I can record the noise with my phone? Why does it seem to change in intensity and pitch? Why does it seem worse when I'm on my period? Does it not seem important that it basically started once I got on birth control and gained weight? It HAS to be vascular.
It made for a really awful couple of days. Even knowing that not all options have been explored, it is really difficult to hear that kind of reply from a professional. This was supposed to be the next step to figuring out what to do. I feel like it stripped away my resilience. It seemed like when I would hear my whoosh it felt especially loud simply knowing that there would be no relief.
I wish that after his first sentence we just stood up and walked out. Instead we paid a larger co-pay than usual because he's a specialist. I don't think I've ever really had a real, full-on panic attack in my life until seconds from walking out of the building. To think that I would just hear this day in and day out for the rest of my life or until I could no longer hear anything at all was enough to put me over the edge. The callousness and obliviousness he displayed was staggering. His summary write-up told that he advised me on coping methods and that I complained of a ringing noise and had hearing loss. The coping method he told me was to listen to a fan or white noise machine at night. I didn't even bother responding that I already do and have for a long time even before the PT, because I figure it was pointless to talk to him.
Okay, but I had an audiogram and the person who conducted that and the ENT nurse said it was perfectly normal. And it is NOT A RINGING NOISE. Does ANYONE listen at this stupid office?!?
I have slowly started feeling better after 2 weeks and am back to trying to figure it out on my own. I am trying to lose weight and I'm going to go off of birth control to try and see if that helps. Hormones are mighty powerful and I would not be surprised if that is a factor.
All in all, it was a waste of time, money, energy, and felt like a huge step back. I am NEVER going to go to a doctor again before contacting them before hand to make sure that they know the damn difference between tinnitus and PT and aren't going to be a condescending ass to me and my husband.
Turns out, hope can be dangerous.
Within seconds of him opening his mouth I knew he wasn't the right doctor. I believe his first words were "There's nothing that can be done." Other excerpts of the "conversation" (I put conversation in quotes because it was basically just him lecturing us) were "Anything you read online is pretty much grasping at straws" and "It isn't very common in people your age but it isn't unheard of. It's just a sign of early onset hearing loss", and "It's really very, very, common. Asking someone if they have tinnitus is like asking if they have a right thumb, it happens to everyone", as well as "It's just something you can't really do anything about so you'll have to learn how to cope with it." and "Sometimes once you actually reach the point of severe hearing loss, hearing aids sometimes help". Also "You probably damaged your ear from hearing a loud noise or listening to loud music."
Um, okay, first I think I would remember if something suddenly "happened" that set off this noise. AND if it was loud music the majority of my generation (and my parent's generations for that matter) would have what I do. It seems to me that HE'S grasping at straws.
Zero bedside manner. Zero awareness that even if he was correct, he was basically saying "You can deal with the endless, distracting, overwhelming, maddening pulsing noise in your ear for the rest of your life or until you go deaf."
When Justin asked about Intercranial Hypertension, something that multiple studies have pointed to for being linked with PT, the doctor pretty much smirked in his face. Not only is Intercranial Hypertension linked to PT, but it is specifically linked to young (check) women (check) who are overweight (check) and on birth control (check). The fact that the doctor dismissed it right away and said it was grasping at straws made it very apparent that he doesn't know the modern research and is not willing to even admit that it could be a possibility. He was just so arrogant and condescending I wanted to punch him.
The other obnoxious thing about this appointment is that he basically exclusively spoke with Justin. As if I wasn't sitting there. I started crying out of anger and frustration. Both of us are taking time off of work and waited weeks for this appointment just for him to tell me what a google search for tinnitus will tell me. Pulsatile Tinnitus IS NOT your run of the mill tinnitus. Yes, everyone experiences tinnitus at times. Yes, tinnitus is very common. But is PULSATILE tinnitus common? How is it that it changes when I bend down or move my neck/head? Why does it lessen if I push on my carotid artery? Why do I sometimes hear that high pitched tinnitus noise AND the pulse at the same time? How is it that I can record the noise with my phone? Why does it seem to change in intensity and pitch? Why does it seem worse when I'm on my period? Does it not seem important that it basically started once I got on birth control and gained weight? It HAS to be vascular.
It made for a really awful couple of days. Even knowing that not all options have been explored, it is really difficult to hear that kind of reply from a professional. This was supposed to be the next step to figuring out what to do. I feel like it stripped away my resilience. It seemed like when I would hear my whoosh it felt especially loud simply knowing that there would be no relief.
I wish that after his first sentence we just stood up and walked out. Instead we paid a larger co-pay than usual because he's a specialist. I don't think I've ever really had a real, full-on panic attack in my life until seconds from walking out of the building. To think that I would just hear this day in and day out for the rest of my life or until I could no longer hear anything at all was enough to put me over the edge. The callousness and obliviousness he displayed was staggering. His summary write-up told that he advised me on coping methods and that I complained of a ringing noise and had hearing loss. The coping method he told me was to listen to a fan or white noise machine at night. I didn't even bother responding that I already do and have for a long time even before the PT, because I figure it was pointless to talk to him.
Okay, but I had an audiogram and the person who conducted that and the ENT nurse said it was perfectly normal. And it is NOT A RINGING NOISE. Does ANYONE listen at this stupid office?!?
I have slowly started feeling better after 2 weeks and am back to trying to figure it out on my own. I am trying to lose weight and I'm going to go off of birth control to try and see if that helps. Hormones are mighty powerful and I would not be surprised if that is a factor.
All in all, it was a waste of time, money, energy, and felt like a huge step back. I am NEVER going to go to a doctor again before contacting them before hand to make sure that they know the damn difference between tinnitus and PT and aren't going to be a condescending ass to me and my husband.
Tuesday, May 19, 2015
Happy
Summer light until 9pm, thunderstorms, the optimum apartment layout, weekend day trips, hiking, an unstressed husband, lots of veggies, and increased income makes for a VERY happy Mimi.
Friday, May 8, 2015
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