Dr. Raffi der-Sarkissian… saved these lives.. why not mine?
Dr. Raffi der-Sarkissian - His patients call him an “angel” and even “GOD”. Certainly he has been a life saver to many, including giving selflessly of his time and skill to disfigured patients in other countries as well as home. I have said many times that he was the only surgeon who made me feel he would not let me down after I first consulted with him in April 2002. I trusted him from that first meeting for many reasons, not the least of which was his proposing a corrective surgical option which I have always known would be the ONLY possible means of improving my worsening difficulty with breathing, swallowing, severe ear pain and pressure, jaw closure, neck extension. He asked only that I try rigorous neck stretching exercise, which I did, in spite of this actually making things worse (I could feel the support to the floor of my mouth getting weaker and weaker the more I forced this stretching. The only relief I got was from manually relieving the inappropriate tension which had been literally “cut & sewn” into the tissue which prevented jaw closure, and displaced the internal anatomy to a degree that totally obstructed my airway with my head in a normal posture). He also suggested acupuncture, which I could not afford.
I was all the more disheartened when I did return to Dr. D. in January 2003 to be met with an entirely different Dr. D who now claimed there was nothing he could do for me. Please remember I was not seeking any sort of improvement in APPEARANCE.
My condition is so debilitating now that I cannot leave home and am grateful I stocked my freezer and cupboards full when I was able to get out, so I have plenty of food to last for a while. For weeks I have only been able to remain sitting for brief periods as gravity pulling on the inner structures in my neck makes it impossible to breathe and the damage is so severe now that no matter how hard I press a piece of wood into my neck it is not enough to allow me to draw in sufficient breath.
Link to video if you cannot view above:
http://www.necn.com/Boston/Health/Patients-thank-doctor-who-changed-their-lives/1205627833.html
I contacted Dr. D last year after seeing this video and begged him to see me again. I was so deeply moved by his SINCERE caring for these fortunate patients and what appeared to me to be his gratitude for being able to help these people.. I just KNEW his heart had to be big enough to HELP ME THIS TIME. He did agree to see and for the first time since 2001 I felt I might truly have a chance at restoring my LIFE. I didn’t care about appearance and was willing to sacrifice in that area if only I could be given the CHANCE TO BREATHE NORMALLY. I will never forget the HOPE I held as week by week I was lost more function because the very things I had to use to CONTINUE breathing were causing further injury.. a vicious cycle that would have no other end but total destruction of the supporting musculature which holds the system of the upper airway “in place”.
In setting up this appointment, I received a call from his office manager, Tanya, who mentioned something about my posting online an email exchange between Dr. D and myself in which I brought to his attention the fact that he did not perform the airway fluoroscopy for the HBO film which he promised the filmmakers, and which was the REASON I agreed to see him again after he crushed my hope the first time. I posted email from the HBO researcher who was Dr. D’s contact in which she related what he told her.. that he was certain something was definitely wrong with my throat/neck and he was even willing to show a “normal” fluoroscopy to contrast with what he knew mine would show. At this point I had already sent him the 2nd MSB study ordered by Dr. Mucci in December 2003 which showed the platysma muscle involvement in my inability to swallow. I never heard from Dr. D after sending him this video or a series of other video and photos with a note begging him to please look at this new evidence. Only after I gave HBO filmmakers his name and they asked him to participate in the film, did he actually acknowledge receipt of these videos and the MBS study (sent in March 2004) He evidently had not planned on reviewing them at all until he was contacted by HBO (at MY request) because a check for $100 dated in March 2004 which I enclosed for his time in reviewing the material, was cashed AFTER October 2004, which was shortly before HBO scheduled the appointment they filmed, which I had every reason to believe would be the promised fluoroscopy, but was not.
After the betrayal of what he said in the HBO film about me that I did not know until the film was aired in June 2006, I wrote to him and he prevaricated to the point where anyone could see I had, indeed, been betrayed. Tanya said that patients had brought print outs of the email exchange which I had posted on my website into the office and asked him about it. I posted the email because I wanted people to know what I was faced with in seeking help for a very real PHYSICAL problem which has literally turned me into a housebound cripple. I wanted people to know why I said doctors were deliberately AVOIDING proper physical exams and diagnostics and how they couch their words to make it appear they are trying to help you when they are not. There is an “art” to this kind of patient blacklisting. She very kindly suggested I remove this email and anything critical I had written about my experience with Dr. D, in spite of its ACCURACY. I was more than happy to do this, because I was so GRATEFUL that he was finally going to offer me a chance to SAVE MY LIFE before it was to late.
But that is NOT what happened that June day last year when my friend drove me to his office. I AM DYING. I don’t know anyone who could have held on as long as I did and survived this long. I have written the details of that meeting and the “non-examination” of that day. He was my LAST HOPE… and he threw away that final hope .. my final chance to LIVE. It is very hard for me to believe he is the same man in this video.. I am a human being, Dr. D, just like these “worthy” patients.. but what made me “unworthy”? That I refused Botox and a sleep study when you did not even EXAMINE me to feel why I had to keep a piece of wood pressed so hard against my neck all the time just to breathe? If you think things “can’t” be as bad as I say because it’s impossible for anyone to live with the damage I claim to have, you are WRONG. You called me a “survivor” but even *I* cannot do anything else to continue functioning.. breathing.. LIVING.. left the way I am and getting worse every day. How will you feel when I am dead? Yes, I remember your promise to examine my face and neck post mortem. But I want to LIVE! and you could give me that chance. Instead you chose to turn a blind eye to what was right before you on that day last June when my hope was raised so high only to have you crush it again. You could have examined me in a way that would have left no doubt about the unbelievable effort I have had to make to survive. But you did not.
Dr. X has already sold out whatever integrity he may have had, which was very little, through blatant lies and worse in an attempt to label me “suicidal”, yet I have survived by having to MUTILATE my own flesh to do so. I begged you to HELP me with no strings attached. Why couldn’t you just really OPEN YOUR EYES to what was right before you that day? You looked in my mouth, but for what? I COULD NOT BREATHE. Had you actually LOOKED with a light, you would have been able to SEE my soft palate pull down.. Had you actually TAKEN YOUR HANDS AND FELT WITH YOUR OWN HANDS THE FUNCTION THAT PIECE OF WOOD SERVES in making it possible for me to breathe, you might have realized just how **URGENT** AND PRECARIOUS MY HOLD ON LIFE WAS THEN. I am much closer to death’s door NOW. I do not need a sleep study.. I needed you to do a SIMPLE EXAM.. and simple films or fluoroscopy, as Dr. Herrick recommended in 2004.
I cannot and will not consult another doctor. I do not have the strength or extravagance of time for pointless diagnostics like sleep studies when a simple physical exam should have been the first line taken. I am ALONE. I cannot depend on the very few friends I have left to take me to appointments or support me as members of my family should have done. I am alone and the only thing I can physically manage to do is sit in one spot and type.. and I can barely do that now.. not without continual agony with every breath. You could have EASILY felt and seen that the way you left me to survive is IMPOSSIBLE. How do you think I feel when I see these people you *chose* to save, while you left me to die in this horrible way?