My journey

Just thought I’d post my journey here under Otosclerosis. It is already posted withing another thread on the hearing aid discussion section, but I thought there might be some benefit to posting it here.

My story:
In the fall of 2002, I began experiencing strange and very annoying sounds in my left ear. I thought that I had some fluid trapped in the ear and after waiting for several months and allowing the problem to progress to a point where I could no longer ignore it, I made an appointment with my doctor. He could not see any fluid and said that it could be deep within the ear. He prescribed some decongestants and told me to give him a call in two weeks if they did not help. They didn’t, so I called him back. He referred me to an ENT. I went in for my ENT appointment expecting to get a different prescription. Unfortunately, that’s not what happened. After examining me, the doctor asked me to move to the audiology lab and have a full hearing screening. Once that was complete, I was told in laymens terms that I had a 50% hearing loss in my left ear and a 25% hearing loss in my right. YIKES! I had been aware for a few years that I was missing some conversation and about a year before this I had started watching TV with the closed captioning on. I attributed the need for closed captioning to the noise of my children playing, not to hearing loss. Now I was being told that I was wrong and that I had been hiding the fact that I was losing my hearing. The diagnosis was Otosclerosis. It was recommended that I have a stapedectomy on my left ear and wait for my hearing to degenerate in the right before taking action. I had the stapedectomy in November of 2002.

While the stapedectomy was a “success” surgically, I had lingering symptoms from the surgery that were of grave concern. I had NO improvement in my hearing. Sounds irritated me as if someone were walking around behind me with a chalkboard to my ear and scrapping their fingernails down it. Noise input actually made me dizzy and nauseous. I couldn’t sit in church while the music was playing. I had a hard time staying in the room my children were in. Even going to the mall was far to noisy for me. I was actually to the point of not being able to function. My ENT referred me to the University of Maryland Medical System. After an initial visit, a cat scan and a VEMPS test, I was diagnosed with SCDS (Superior Canal Dehiscence Syndrome). This is a disorder in which the bones in the superior canal develop thinner than normal. When a trauma occurs (a trauma can be anything from hitting your head to a cough fit or large sneeze), the bone is to thin to handle it and it breaks away. In my case, the stapedectomy procedure caused the trauma to my already thin bone and the bone broke away. You have three canals in your inner ear. They control your balance. Each is at a slightly different angle and has spinal fluid moving through it. The canal sends signals to the brain based on the movement of the fluid as to how to balance you. Because of the hole in my superior canal, the brain was getting the wrong messages.

The Otolarengologist recommended surgery. The surgery would be cranial and in it he would attempt to “patch” with a bone graph the area of missing bone. I had the surgery preformed and for the first 4 weeks I was symptom free. But then the symptoms returned. Apparently, the bone graph slipped and I was back to square one. After much research and conversation, the doctor recommended that I undergo a second cranial surgery. This time he would fill the superior canal with bone wax and make it completely disabled. I had this second surgery preformed in June 2003 and the recovery was tough. I was in the ICU for 2 days and during that time I could not even move my eyes without getting sick. I couldn’t lift my head up off the pillow even a fraction of an inch. I stayed in the same position without moving a single muscle in my body because any movement caused me to get sick. Phil had to feed me because I couldn’t look down at my plate or follow the fork to my mouth. I spent a couple of months slowly improving and today I’m glad I had the surgery. My hearing loss has not improved, but I can tolerate life again. There are many side effects of SCDS, even post-op, that I will have to tolerate for the rest of my life, but I’m a lot better off now. Today, barometric pressure changes, looking up or bending down, lifting heavy items, and certain motions cause me nausea and virtego. But all that is much more tolerable than my pre-op symtoms, so I just learn to live with them. I never gained hearing from any of my three surgeries. and until my last hearing test on 3/5/09, I had maintained the same hearing loss with no fluctuation. However, my most recent hearing test shows that I have moved to moderate to moderate/severe in my left ear while my right has remained mild/moderate. I am now ready to say that I need hearing aids.

But in answer to your question. I couldn’t tell you if my loss is now due to the otosclerosis or to the SCDS. I don’t believe there’s anyway to tell. I can tell you for sure that it is a conductive loss. I can also tell you that my ENT now routinely schedules CAT scans prior to performing stapedectomies to insure that the patient’s canals are not thin. When I was diagnosed there were only about 30 recorded cases of SCDS, but that number has grow signifigantly as we now have the technology and the knowledge to correctly diagnose and treat SCD.

Thanks for sharing your story. I’ve had failed primary and secondary stapadectomies in one ear, but compared to you I’ve been pretty lucky .I just ended up with the stapes prosthetic completely detached. I am left with a feeling of paranoia about the ‘success’ rate of stapedectomies. Success is reported well beyond 90%, but the anectotal evidence in my meeting these patients is probably more like 75%. The surgeon gets full fee no matter what, so it is to his benefit to hype the likelyhood of success.

The guy who did both my procedures did give me a sheet on the possible things that can go wrong and cases such as yours were mentioned, with the possible solution having to be the disconnection of the auditory nerve (!). Best of luck with your recovery, I would suggest you search out the doctors with the most expertise in your condition and do whatever travel it takes to see them. Certainly seeing a neurotologist is in order, you might check ou this link.

Thanks for replying. I have seen the best of the best and I’m very blessed that they are local for me. Dr. Minor and Lloyd at John’s Hopkins are the foremost in Superior Canal Dehiscence Syndrome. I’m confident that I have had excellent care for this condition and am content with the results. I can live with my current symptoms. In fact, since getting my HA’s 6 or so weeks ago, I’ve found a lessening of my noice intolerance and a lessening in vertigo. I can only assume that I am now hearing sounds more clearly and more evenly, so my brain is better able to interpret.

Hi Mindy, I have SCDS and have been referred to Dr. Rick Friedman at the house ear clinic…is there anyone u might have come across who has been there or had surgery there.

I am looking for people who had the surgery at the House Clinic for SCDS . I have had no luck finding anyone so far.Any help would be appreciated!

Susan from Albuquerque NM…

Hey there Tonya, Rock on with your getting healthier self I know several people who have had similar procedures. You do whats in your heart to become healthy, and in my opinion I dont think anyone in the world has the right to criticize you. I am also very happy to see that you are sharing your journey with a blog. Good for you. You just never know who you might inspire Sincerely, Steve

A thing Id change for Journey of Dreams would probably be either improve the graphics or give a better conclusion to after you fight Reala in Bellbridge. Also maybe some Owl abuse…Other than that I pretty much enjoyed the game.