Hello All,
I have not been around for quite some time, but have stopped in every once in awhile. I wanted to pass along news of my most recent tests I had to FINALLY bring some closure to my ongoing symptoms of asleep and sound-induced vertigo (tullio syndrome). I am posting this here as this has nothing to do with vestibular schwannomas, but for a while there my diagnosis was a possible tumor on my good side. Other diagnosis' were hydrops, menier's, or dehiscence.
At my doctors request, I sought out a 2nd opinion from Johns Hopkins. They did not ask me to come to them, but rather send all films and reports. So I did this, carefully and for $550 I got the controversial diagnosis of vestibular migraine and the MRI's and CT scan I had in my home town are of inferior quality to have them redone with better quality. Dr. Carey instructed Dr. Antonelli to put patient on migraine diet and if this didn't work to seek out migraine doctor. My doc and I cannot understand how he came to this diagnosis other than he saw on reports my having headaches. So to appease him I am on migraine diet, no change with headaches. They are still twice a month or rather more related to noisy environments and my own talking. I do not, at this time, agree with the migraine diagnosis so will not go down the road of multiple pharmaceuticals with their problems as most patients I've read about still have their headaches in spite of pills. I will be more diligent in avoiding noisy places and also will talk much less as even the sound of my voice causes problems. Besides ibuprofen helps and I have not had problems there.
Days before Christmas my doctor had me drive up to him where their machines are higher quality and their CT scanner has thinner slices. The diagnosis is a good news/bad news scenario. Bad news first, the CT shows bone thinning of temporal bone on the good side (Right side) so consistent with a dehiscence. Also seen is possible otosclerosis. Also looks like I had dehiscence and otosclerosis in my left (operated) ear. None of which would've been known as I never had CT of temporal bones, only an MRI which showed tumor. Also, the approach of retrosigmoid did not show all of what was needed to be seen in order to diagnose otosclerosis or dehiscence. It's possible a mid-fossa approach would've shown all. With my second surgery I did improve but not completely and symptoms increased over time. I do not in anyway blame my doctor as no one could've predicted this nor forseen this.
Good news is there is no tumor on the right, and no recurrent tumor on the left. Dr. Antonelli is not happy and couldn't believe my response of "Yay! We found it. We have an answer!" Again he reminded me of the seriousness, but I remain happy. For now he is conservative in his approach and putting me on fluoride treatment in hopes of building bone. We will reconnect in 4 months time.
It's been a roller coaster ride since 2005! I have given up teaching yoga as talking for more than 20 minutes has me feeling ill and headachey. I continue to practice on my own and have introduced jogging twice weekly. I am joined by a marine in our neighborhood and he's wonderful to "be my eyes" as my vision bounces terribly and looking left and right to cross streets has me veering off and stumbling. I will miss him when he moves on to another base, but for now I'm happy to have "my watchdog" as I fondly refer to him.
Another crappy diagnosis of recent is peripheral neuropathy of the feet and hands. No known reason for this awful diagnosis. This sets me up for falls, hence the reason to begin jogging to strengthen my legs, also I've purchased a used Bowflex to add more strength to my legs. My yoga practice keeps me flexible and strengthens the whole muscle as opposed to partial. So I am well-rounded in my exercise targeting as much as I can helping to prevent falls and it works. I have been able to catch myself better avoiding going all the way down quite a few times. I will keep this up until I cannot.
On a side note, my hubby is in the process of readying our sailboat for his farewell sail as he refers to it. He will go for 6 months. I remain behind due to my problems increasing when the engine is running to keep up the refrigeration. Besides, I have one very large bullmastiff that needs looking after here. Business for him is wayyyy down. He has not taken a paycheck in one year in order to keep 5 people employed as his partner did the same. So it's an early retirement for him I'm afraid. This is CHANGE we can do without! When he returns we will sell our beloved saying goodbye to a lifestyle we both enjoyed for the seven years we had teaching our children and traveling the seven seas. Time to move on I guess.
Sorry for the long-winded version but wanted to cover all and update those interested. I have since renamed myself "Omaschwannoma" and will look into changing that on this site, if possible. Until later, stay well, and out of trouble!
Karen
