Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Now hearing loss with more pain.

I am beyond frustrated. I met with my ENT again today and I had series of hearing tests done because I have had trouble hearing out of my right ear along with incredible right face and neck pain. Turns out that ear is essentially deaf and I have the equivalent of two ear plugs in that ear and the damage is from the inner ear. Doc said that this sounds like an autoimmune nerve disease and suggested a neurologist who he refers to.

The issue that I have with this is that my hearing actually got worse from the last round of steroids. This makes me think that this has an infectious component because I now have bleeding in my sinuses on same side with a terrible pain behind that ear with a headache and a low grade fever. I did some research and the symptoms I have are a match for an infection of the mastoid bone behind the ear and I believe it has been brewing for months. I had a ct scan done in October and then an MRI of my head a few weeks ago and was told that both were normal. He said that he did not think that this is an infection but I told him that my hearing on the left side feels like the right side did a few months ago. He said that there is a good chance that I may lose my hearing on the right side as well if its autoimmune or infectious. Wonderful!! A deaf therapist...a lot of good ill be if I cant hear my patients. He's so nonchalant about this and combined with the amount of face neck and head pain I told him that I should be admitted in the hospital minimally for pain control and to find out what the heck this is so I DON'T lose all of my hearing. He prescribed me 4 days worth of vicodin which really will last maybe three days because of the intensity of the pain. I dont know what the heck to do. I am not a timid patient and have voiced my opinion time and time again to this doc, and my PCP and others. My PCP is essentially clueless and is more concerned about my depression, which he cant seem to understand is caused by pain from the AS, IBD and now this. And I am not on any ANY pain meds because they all, including my Rheumy, are concerned about my Barrett's esophagus and the "abuse potential of narcotics". Seriously? Instead she prescribes me Ultram which she warned is counter-indicated when taking an SSRI and may cause seizures so I haven't taken it. I asked her why she would prescribe me something that could harm me and she had no answer. I mean I am being treated like a depressed pill popper and not like a patient who is in incredible pain and worry from the pain. Should drug abuse be the main concern here when my quality of life is zero especially when I am the last person who would abuse prescription medication? I am a mental health therapist AND a Licensed drug and alcohol therapist and hate taking pills unless I have to!! I feel like every doctor doctor Ive been to doesn't listen and/or care and walk into each appt with a preconceived idea of whats going on. Like they don't take into consideration changes in my symptoms including hearing loss!!! Isn't it inhumane to endure relentless pain without proper treatment and without a plan to find a diagnosis? I'm now being pawned off on to a different doctor and once again play the game of wait another two months to see the doctor and asked again, "what seems to be the problem?". The problem is that I might not be able to hear him ask this. Thanks for letting me vent.

Vent away until it feels better! I just don't understand most doctors. If one fails then try try another.

Are they treating you for the IBD?

Thanks. No treatment for the IBD because of the barrett's and I am so grateful that its not acting up right now. I think every doctor in training should be given a medication for one month that mimics a disease. Just so they can feel it for themselves. To feel what unrelenting pain actually feels like. Would make them better doctors for sure.

IDk, I wonder if the nerve pain and ear damage may be caused by neck inflammation from fusing? Is that possible for AS to compress nerves so badly in neck and cause cranial nerve damage?

so sorry to hear all of this. wish i had doctors to suggest to you. have you tried the pain clinic at strong? that won't take care of this latest concern, but might help with the pain. i was seeing a Dr P there which i wouldn't recommend, she told me if i lost my career so be it and wrote in my notes that she told me not to let myself become disabled, but there are a lot of doctors there and one might be able to help. personally i've been more impressed with the rehab and neurology center at unity; had better luck there with doctors that could help me, and seemed more motivated to help. strong seems to have a lot more bureaucracy than unity does.

as for rheumatologists, have you tried to get in to see dr Ritchlin, the AS expert at strong? one of my pharmacists at CVS has AS and likes Ritchlin; says it can get hard to get in to see him, but if persistent, can. and of course dr Tammi Shlotzhauer, wonder if she would see you. i've been trying to get in to see her since the summer of 2006, am trying once again. but i have undiff spondy not AS, so its a challenge finding a rheumy in town. but maybe you'd have better luck than me.

i guess all i can offer is to keep trying doctors til someone can help you. i've been through 5 rheumatologists, finally going out of town for one, been through a number of physiatrists, orthopedists, pain docs, etc, until i found doctors that were able to help me. other than a rheumy, have some pretty good docs.

if you want to know my list of doctors that i'm happy with, i'll PM you if you ask. wish i could suggest an ENT, but haven't needed one since i've been up here. as you said, hearing is a serious thing. if you want me to ask people that do hearing research at RIT if they know ENTs in town, i can ask for you, just let me know. that's all i can think of for now.

can't remember if i suggested dr Mersich to you. he's my husband's and my gastroenterologist and has been a life saver for both of us. really caring too, he's called us after hours on many occasions, and always seems to have ideas if something isn't working out.

thanks!

yes, sue Id like your list of doctors. Thanks

I just wanted to give you a hug.

I hope someone can help you with this soon.

Warm hugs,

That is so scary! I hope you do manage to get some action, and soon. I just hate the way that if you have ever been seen or treated as depressed you never really get treated the same for physical problems again. Any chance of getting a second opinion on the hearing thing?