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1. 

   marko

   8 Kudos

   12/28/08

   Roy,
   
   Just wanted to drop you a note and see how your doing?
   
   I never heard back from you after my last e-mail asking if you decided to go through with the operation? I wasn't sure exactly which operation you were havinng the MVD or the one Dr. Ridder does....
   
   As you know, I had MVD surgery with the World famous Dr. Jannetta. He might have even trained Dr. Ridder in the MVD procedure years ago.
   
   I would enjoy hearing back from you and maybe between the both of us we could come up with some cure for this variety of nasty T... I can't remember if your T runs in a cycle or is 24/7 although I'm thinking it is 24/7. For 24/7 tinnitus those Oticon hearing aid's I told you about can work very well for people with noise induced hearing loss. I'm not sure if you have a hearing loss or not?
   
   If you are having the surgery God bless and I hope thing's work out for you.
   
   
   Marko

   01/04/09

   Reply from Roy 43:

   Hi Marko
   
   Happy New Year.
   
   Once again I apologies for being late in replying.
   
   Firstly with regards to my MVD surgery, I REALLY do not know what to do, I think I should seek a second opinion but the neurosurgeon Paul Eldridge I've been told is one of the best but nevertheless I have been told this surgery carries quite a few complications, so naturally I am a little worried.
   
   Furthermore when I initially started with T I went to see a chap called Mr Cooper who is a maxillo facial surgeon and is renowned for his skills with regards to the TMJ, in actual fact I have recommended people from the board (TSMB) who have had problems of this nature to go and see him, they have all come back with glowing reports, he is a quiet and gentle man. When I initially sort his help he told me that my TMJ on my right side which is also the side that is affect with T, he told me that I had a sticking disc but with no guarantees if he flushed it out that it would diminish the T. Anyway I did go ahead with the surgery and although my jaw on the right hand side feels free it certainly didn't eradicate the T, he was aposed to doing both joints at the same time but did explain the reason why but also stated that your jaw is like an axle and it must run true, so your mouth opens and closes in the proper position.
   
   Now here is my problem, just before Christmas I went along to see Mr Cooper and I explained that I was in need of MVD surgery, Mr Cooper told me that he knows Paul Eldridge very well and he treats alot of people with facial neuralgia with good results, again very reassuring but if it's happening to you then you think differently. The outcome of my visit to Mr Cooper was that I was to go and have another MRI on my TMJ's amd most interestingly an xray on my teeth, Mr Cooper was aware prior to me having T I needed a tooth removing in my upper jaw directly below my T ear, unfortunately the dentist broke the molar and alot of the tooth has been left in my gum including the roots, I have started having horrendous pain in the cavity where the tooth used to live and it has gradually got worse, as I say it is directly below my T ear. Mr Cooper is indeed trying to get me into hospital to flush out my other TMJ and while in theatre he wants to remove the broken tooth before I go to have the MVD surgery, whether the tooth is causing me any T problems I'm unsure but pain yes it does, but yes I would like a second opinion with regards to my MVD but do not know what to do.
   
   Anyway many thanks for your encouraging words, always lovely to hear from you.
   All the very best to you and your family for the New Year, hope to hear back soon.
   
   Godbless
   Roy

2. 

   marko

   8 Kudos

   11/27/08

   Roy,
   
   This is Marko from the USA.
   
   I haven't heard from you in many month's since you contacted me and asked how I was doing........
   
   I have written you several times and the last I heard you were diagnosed with Compression of your 8th Auditory nerve by a Neursurgeon. You also mentioned you were looking into the surgery where they put an electrode or the like into your brain thqt in many cases will cancel out the tinnitus for some people. Have you made any progress or had this procedure done?
   
   I would appreciate hearing back from you especially since my last letter to you was very indepth explaining my situation and what I had done up to this point.
   
   Sincerely,
   
   Mark

   12/03/08

   Reply from Roy 43:

   Dear Marko
   
   Please accept my apologies for not being in touch, sometimes when you see my name on the board, 80% of the time it is not me it's my son or Lin. Firstly I must point out that I do not wish to discuss openly on the board any of my health problems, reason being I did not reply to a message you put on the board asking me whether I did or didn't know the reason for my T, I didn't answer it because as I had said to you in a private email I wanted to keep it private, never the less I have been told by my neurosurgeon after many scans that I have a MVD. He has also stated that he is 98% certain that my T is due to this problem, whether I believe him or not is another thing. As he states the 2% could be very negative. I have carried out a fair amount of research on him, his name is Mr P Eldridge. He has some fine qualifications but the operation also comes with some fine disasters, so at the moment I have tried to carry out further research and I am a lot more knowledgable now, never the less I do feel that I require a second opinion, but please do not think I am mistrusting the surgeon, I'm not, I need a second opinion on the surgery. I think you will understand.
   
   I have spent an horrendous amount of time this year with consultants, DRs, ENT and Neurosurgeon, this has cost me a lot of money as I believe when you have T that you have to be a good detective and explore every possible avenue, i.e. TMJ, Broken Tooth in Jaw, Brain Tumour, Diabetes, Medication, Blood Pressure, Liver Problems, Neck Problems, Circulation Problems, Hearing Problems or Inner Ear Problems, Vitamin Deficiency, Eye Problems, Sinus Problems, plus a lot more. I believe you have to investigate all the above and then investigate again, once you are happy that they are not the cause you shelve them and that's how I have been working in the hope of finding a cure.
   
   I have spoken with Dr Ridder quite alot and I believe him to be quite clever, he has improved alot of his techniques, he carried out surgery on a patient who was at their wits ends and suicidal with their T, he inserted a small mesh implant within the brain, this was used to map the brain to find the area where the T was being generated from, once this was confirmed he carried out a second procedure where a second device was planted within the brain and they were given a small, for the want of a better word remote handset which could deliver an electrical stimulus to the inplant, that being higher or lower to the inplant, it was extremely successful, but as he said it is for people who are at their end with T it is that type of procedure. Although you imagine it to be very invasive it's not, I am fairly confident in saying that should anyone find a cure with relation to the brain and T I do feel Ridder will be the pioneer, he is also doing alot of TMS, he is having quite a lot of success with this. After my own research I doubt reluctantly that their will ever be a medication to eleviate T, there are many probems within this area. I am also very confident that T is a brain problem, although I do concede that there are but a few other medical problems that cause T, I also believe that some governing bodies for many years have spent millions on researching in the wrong place. If the millions where available today and the correct research was carried out I do firmly believe the cause would be found to be within the brain or linked problems with the brain and a cure would be found, I think maybe we should all start our own research, everyone on the board open our own bank purely and simply so we could fund our own research just for T.
   
   Any way how are you, how is your T.
   
   Please remember this is private and my operation is scheduled for January.
   
   Regards
   Roy

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