700km's… thats the distance we recently drove in search of HELP!!!
Drastic situations call for drastic measures… After a summer of feel in reasonably healthy, all my symptoms started up again a few weeks back. I quickly fell to the end of my rope and was struggling to see the light.
After last years decision to put a stop to my career as a mountain guide until further notice… I spent all winter and summer looking for help here in Switzerland… to no avail!!! After 54 appointments with Dr's, Therapists, Acupuncturists, Oncologists, Insurances, Disability Insurances, Allergists, Nutritionists… and I miss a few. The overall consensus was that I was having difficulty living my life, but I was going to have to hold it together and get used to it. Basically I was often being told to go home and 'learn to live with it'!
For twelve years I've lived with the symptoms of Menieres Disease, Vertigo, Tinnitus, Hearing loss. Diagnosed slowly over the first 4-5yrs by a process of elimination… MRI's, Brain scans, dental surgeries etc.
Remission, there is no word I love more than remission… the time I get between vertigo attacks. Early on my remissions were long and comfortable, life fell back into place and I was able to work. But these past few of years the remissions have been short and difficult to come to terms with, tinnitus has gotten worse, my left ear is almost deaf and the effects of a yoyo health and career have taken its toll on my psychy.
These are the feelings and events that brought on the idea of driving 700km to look for HELP!
The weekend before leaving I had had three vertigo attacks and on the morning we packed the car I was beginning to feel like hell and almost delayed the trip. I was not looking forward to watching the highway spin circles around me for 8hrs of drive time. Even the idea of engine noise for that amount of time was disturbing to say the least. Since my hearing has gotten worse I've developed hyperacusis in my left ear, Noise sensitivity is the best way to put it, the hum of the engine was going to hum again inside my head for 8hrs.
We made it and we were both exhausted.
Following morning we met Dr. Golenhofen : http://www.meniereclinic.com/information/location/ or http://www.tinnitusclinic.de
I was amazed at how quickly Dr. Golenhofen was focusing in on my situation and analyzing my symptoms. I was sent off to two different dentists to have X-rays taken of my teeth and jawbones. No sooner was I back, emailed X-ray travels faster than I do, I was diagnosed with a chronic dental inflammation in the central upper jaw. This was being caused by a dental cyst growing on a nerve that runs between the bones just above the two front teeth. I had known about this cyst and had seen a dentist about it in 2003 or 4. I had some dental work done in Majorca, and was told that all was good and that I would be fine.
I do not know for sure if this cyst has grown back since or if it was poorly removed in the first place. What I do know, is that I did have surgery while in germany and this this cyst is now out of my life for the second time and I am extra grateful to Dr. Golenhofen for having found it again. I had forgotten about it and the 54+ appointments I had this past year did not help to find it either. I do know now that this cyst was the cause of symptoms that were being mixed in with my menieres diagnosis, and therefore nothing was being done about them. It is very difficult to explain, but I feel a whole lot better already, a general feeling of uneasiness seems to have subsided.
I was also informed that although I have been diagnosed with Menieres Disease, my real problem was what they like to call Menieres Syndrome, I suffer all the same symptoms of Menieres Disease, but not for the same reasons as Menieres disease. My problem was from Functional Spine and Masticator Syndrome and TMJ Temporal Mandibular Joint Dysfunction. Basically all the muscles in my upper back, neck, and jaw are a mess. Although I have always blamed these aches and pains on my back pack and years of perpetual adventure, I was wrong. According to Dr. Golenhofen my aches and pains and troubles with my masticators could have all started when I was having my teeth straightened as a child. Thats right you read it!!! The braces that straightened my teeth may be the underlying cause of my Menieres Syndrome, not to mention my broken neck when I was 13 and the years of carrying backpacks full of adventure equipment, or flying off my mountain bike.
To keep this post short I will not go into the number of times I tried to eliminate these conditions from the causes for my Menieres disease. ALL my previous doctors including the dentist I visited just for this reason this past summer, ALL told me that my jaw and teeth were fine and that my neck pains were due to my backpack.
To keep this freaking long story short, I was now diagnosed with THREE new conditions within moments of meeting Dr. Golenhofen for the first time. The cyst, which was operated the following morning, Functional Spine and Masticator Syndrome along with Temporal Mandibular Joint Dysfunction.
After all these years of looking for answers and coming across Dr's that were not interested in my situation because their medical library could not provide the perfect pill to help me, here I was with THREE new diagnosis in less than one morning. One that I had known about and was meant to have been sorted already by a dentist in Majorca, and two new ones that I knew about as potential reasons for Menieres symptoms.
Over the next few days I met with Somatics Movement instructors and learned all the movements that were going to help me re-balance all the muscles of my upper body, neck, and head. Over the next few months I will be doing my daily program in the hopes of getting everything back in line. 45min. - 1 hr. of easy movement exercises to help the muscles re-learn their original purpose.
I also started wearing a dental splint that is going to help me regain control of my masticator muscles. Masticators are the muscles used for chewing food and are probably the first ones to have been affected by all the dental work that was done to me when I was young. I do at times grind my teeth, something I've always thought was due to the stress of being sick… turns out those muscles that do the grinding are the ones responsible for me being sick in the first place.
I'd like to wrap this up: For the first time since I started having symptoms I have been given a green light. So many times I've left the Dr's office with feelings of helplessness. Having been to the specialists and walking out thinking… this is just going to get more difficult!!! NOT SO… and I've known it all along!!! There is the possibility that Christmas 2013 becomes the most memorable Christmas ever… at least for me.
I've now been vertigo free for 3 weeks and counting, my energy levels are higher and more positive than they have been for a Loooooooong time, and I'm starting to believe that there might be some dreams coming true soon.
I'M LOOKING FORWARD TO SEEING ALL OF YOU OUT ON ADVENTURES!