Hello Friends,
I have been gone from this site for a loooong time due to complications with my health. Let me sum up what has happened to me and I hope what I tell you can help others suffering the same symptoms.
As some of you know after my first surgery to remove my tumor in 2005, I had much difficulty suffering daily headaches that tapered off, but never went away. These headaches were diagnosed by my surgeon as a result of retrosigmoid, then when I continued to complain--migraines. Having never taken meds for headaches I was suspicious of the diagnosis. I had trouble regaining my balance and in fact, went backwards to the point of using a cane. This brought me back to my surgeon who diagnosed me with 'peripheral vestibulopathy'! What? After discussion with him I agreed to another surgery (transcanal labyrinthectomy) as I was deaf from my first surgery. I had this surgery three years after my first. I was awake for this after being given a nerve block. This surgery proved unsuccesful over time as my symptoms of oscillopsia, hyperacusis, and headaches continued.
From 2008 my symptoms continued with new ones added. I now was having difficulty with seizures (the feeling of being 10-feet tall), I could not tolerate noisey environments anymore and began using an earplug, I became nauseous and my legs gave out whenever I was around machines that gave off noise with vibration such as the refrigeration in grocery stores, I could no longer tolerate the sound of my own voice which caused vibration and numbness to the right side of my face. I stopped teaching yoga (too much talking), I gave up sailing (engine vibration) with my husband and stayed home while he went out every year for a few months at a time--boo hoo! I had difficulty outside walking my dog whenever a bus, motorcycle, FedX truck, garbage truck passed by. The sound would leave me feeling unsteady and slightly nauseous. I began to suspect my increase in symptoms came whenever their was loud noise or vibrations so I began searching the internet and came to a support group for Semicircular Canal Dehiscence (SCDS).
It was on this support group site I discovered these people suffered for many, many years with these symptoms before being diagnosed. SCDS is a relatively recent discovered syndrome/disorder. Dr. Minor from John Hopkins first discovered this in 1984? There are not many surgeons in the U.S. who perform this surgery and much like our vestibular schwannomas one must pick the surgeon with the most surgeries under his belt. There are two in the U.S. recommended by this support group.
I went back to my surgeon with this news, insisting my problem is in the opposite ear, mentioning SCDS, only to be poo pooed, then to another neurotologist in town--again brushed aside by him. Back to my originial surgeon again after two years looking for someone to listen (5 doctors total I saw) when he recommended me to John Hopkins for a 2nd opinion. What a mess that was as I was thrown into their 2nd opinion department where I was asked to send all medical records pertaining to my ear--which I complied with, also sent a very large check to get the ball rolling. This neorotologist emailed my first surgeon with his diagnosis--what!? Why didn't he contact me the paying customer? His diagnosis was 'vestibular migraines'! This led me down the long road with a neurologist who put me on topamax due to the seizure component of my headaches. I complied like any good patient with her instructions and took this med increasing my dosage along the way for about 2 years. I had told her I didn't think I had migraines, but noise induced headaches--she just nodded her head and told me to be patient--which I was. I began to suffer from symptoms similar to Sjogren's Disease (autoimmune disorder) and told her about this, but she insisted it wasn't the meds, to continue taking them. In the meantime, I sought out an arthritis specialist and after much money and tests that came up negative for Sjorgren's, I was disheartened. I went back to this support group where they encouraged me to see the other doctor in Louisianna. It was a blessing in disguise when I contacted him and sent all my records, one more time! He found what should've been found by the doctor at John Hopkins. Clear as a bell on one of my MRI brain scans! All total now I saw 7 doctors!! Ridiculous!!
I was diagnosed with 'Posterior' Semicircular Canal Dehiscence. I emphasize the word 'posterior' as most people are diagnosed 'superior'. Posterior is very rare and not many patients exist with posterior--lucky me to have a rare brain tumor followed by a rarer than rare hole in my posterior semicircular canal bone!! Weeee! I was so happy to finally have the diagnosis and went ahead with the 12 hours of specific testing followed by surgery. My new doctor told me I was the worst vestibular schwannoma he's seen. This surgery didn't happen any too soon for me, as another symptom cropped up--drop attacks. I would literally drop down to the ground for no reason other than a truck or motor bike passing by or too much eye bouncing from walking would cause the liquid inside my inner ear to vibrate against my brain. Crazy! Imagine to my surprise this hole was in my left ear which already had two surgeries. I was convinced it was my right ear as it was this ear that kept giving me trouble. How could I be sound sensitive in the left ear when it was 'dead'?
I am still in recovery, but the symptoms of oscillopsia are almost gone (only experience them when lifting heavy loads while walking), the seizures--gone, headaches--gone, earplug--threw away, vibrations from machinery and engines--no problem, talking and using a microphone don't cause me problems, all those internal noises I had been hearing since 2005 (my first surgery) are gone. My brain fog has cleared and I can now multi task, whereas before I had great difficulty. I am a better judge of depth perception too. I had this surgery in July and am soon to return for testing to see how far I've compensated. I have 1-2 years to comensate. I was sure scared to have a third surgery as my facial nerve is dehsicent and at higher risk now of coming out of this with paralysis, but really didn't have a choice as this syndrome progresses. The doctor applied a facial nerve monitor that would 'beep' letting him know he's on my facial nerve. I came out of this third surgery with no pain, facial nerve in tact, but another scar and hole in my skull--no biggie though. I am so happy to have my life back. No more 'wonky head'. I also feel the 'stranger' that was inside me has left the room to be replaced by 'me', the person I used to be.
I think about LADavid when he described falling down while getting off a bus and wonder to this day if he doesn't have SCDS. Some people have one, some have both ears involved. This can be caused by genetics or trauma to the head/ear. I hope my looooong story and explanation wasn't too much, but I feel this so important to us to recognize that having microsurgery to our inner ears might cause this hole or thinning of bone to be created with all the drilling that goes on to remove bone. Thanks for listening and I hope I've helped someone!
