I've been told I had a suspected AN for the last few years. I suffer from bilateral Pulsatile Tinnitus, hearing nerve damage on my right side with sudden, profound hearing loss. I've recently developed searing headaches, mild facial weakness on my right side and minor loss of tongue sensitivity on the right side. I've recently developed regular Tinnitus in my right ear to accompany the in.ncredibly loud Pulsatile Tinnitus.
When the first symptoms started, the Pulsatile Tinnitus, i under went an MRA/MRI (in 2014) without contrast as I have third stage kidney disease and the contrast was considered at that time to be an unnecessary risk. Those tests came out normal showing no tumors or any structural causes for the Pulsatile Tinnitus. An AN was still strongly suspected but without contrast my doctors felt wait and see was the best course of action. But over the last 6-8 months more and more symptoms aligning with Acoustic Neuroma began piling up. My doctors and I finally decided it was time to test my creatine levels to see if my kidneys could handle the contrast. The results came back acceptable.
I had the MRI with and with out contrast on Wednesday. I was notified this afternoon that I did not have an acoustic neuroma. In fact the MRIs, both of them contrast and without showed no structural issues at all. Nothing.
While this might seem good news I'm still suffering from all the symptoms. These are as prevelent, painful, quality of life diminishing as ever. My ENT's response to my question of where do I go from here was to 'get a hearing aid'. Mind you my hearing loss is permanent from extensive nerve damage. Her response seemed flippant, even if not intended that way, but she made it clear her department was done with me. No other help would be forthcoming to try and find out what's causing all these problems.
I'm totally lost at what to do. I'm in an HMO - Kaiser - and I feel they are utterly washing their hands of the matter. To get a second opinion outside of Kaiser requires a referral I know I will not get. I have put in a request to my Primary Care Physician to have mother Radiologist read the results of both MRIs but my request won't even be seen by her until Monday.
Does anyone know of anything that so closely mimics acoustic neuromas but isn't that? I was assured for several years this is what I was facing and would one day have to deal with. I'm 62 and not in good health but those issues have nothing whatsoever to do with the acoustic neuroma symptoms which are impacting my life in major, limiting ways.
I feel abandoned. And ungrateful. Instead of being happy I don't have a brain tumor (at least not an acoustic neuroma) I'm terrified because all my symptoms are caused by something. I'm back to square one with no one willing to look for any other cause. I'm on SSDI and Medicare so am limited on where I can go.
Any advice, experiences, options, suggestions will be gratefully accepted. Right now I'm in tears as I had thought the cause was assured and only the size and position of the acoustic neuroma was in question. My wife and I spent many difficult hours formulating a plan and a way forward depending on the MRI results. Now I'm left in pain, my quality of life is severally diminished and I have absolutely no clue what to do.
I've asked so many wonderful people to pray for me. To send love, light and healing. I have no idea how to say your prayers worked. No acoustic neuroma was found. But how do I explain my devastation at being left with no cause for my suffering. No answers for my pain. No expectation of help from my HMO and no funds to bypass them and seek help elsewhere. I feel like an ungrateful horrible person. I haven't a clue how to say thank you for everyone's amazing efforts and kindness and not share even an iota of the relief or happiness they will most likely feel.
