[size=15]Ciao ragazzi,
un grappolato Olandese mi ha scritto in preda alla diperazione..... cronico, pare che nulla funzioni..... mi dice di essere in contatto con Bussone circa l'operazione Deep Brain Stimulation...... quest'ultimo lo ha rassicurato dicendogli che tutte le persone che hanno fatto l'intervento (vedi la ns. Lussi.... Marco) non hanno + avuto attacchi, e se ne hanno avuti sono stati minimi.
Ora io non la sapevo così... mi ricordo molto bene i problemi che ha avuto Lussi dopo l'intervento... così gli ho detto che ci pensi e che valuti bene.... ed in effetti lui mi dice che non è poi tanto sicuro di quello che gli stanno dicendo....
Lussi, tu che sai tutto circa l'intervento, cosa ne pensi? Che tu sappia in quanti l'avete fatta? E con quali risultati?
Vediamo se riusciamo and aiutare Jhon
Grazie, Zazi
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[size=13]Dear Zaira,
Thank you for answering. I have been chronic since 1996 and nothing has worked to lessen my pain. I have tried all of the usual medications over the years without any relief; I did have a one year spontaneous remission from Feb 2001-April 2002, but other than that I am in pain almost all day long with just a few hours here and there when the pain will decrease from 10 to sometimes almost 0. I am now taking Sevredol, a fast acting morphine (usually 300mg per day); diazepam, 20-25mg per day and I recently started Verapamil, 240mg per day which seems to have lessened the number and severity of my attacks these past two weeks, but I am not sure if it is from the Verapamil or just one of the short, partial remissions that I get from time to time.
I have spoken with Dr. Bussone and I find it interesting that he has told me that virtually all of the patients who have had the DBS operation either have no more pain or a minimal amount. My experiences with Dr. Bussone have not been good and with the information that you have given me about the 8 patients not doing well I trust him even less.
Perhaps when I return to Maastricht in three weeks I can speak with you and tell you what happened in detail and you can also tell me of your experiences with Dr. Bussone. My number in Maastricht is /////////// and I will be back there on 23 May. I am currently scheduled to be evaluated by German neurologists and neurolsurgeons from 19-24 June in Kiel to determine if I am suitable for DBS. I have been treated by German neurologists since my chronic CH returned in 2002, with the exception of spending a horrible week in the University of Bologna last October (during which time I was evaluated for DBS operation which was to have been done in Milan in January 2005 by Dr. Bussone and his staff-the rest of that story is too long to write about, so call me after I return from my trip or send me your number and I will call you).
I still have doubts about getting the operation, even with the Germans and I would like to speak with you about the people that had it.
I considered getting the ONSI operation that is done by Laurence Watkins in England (he did Mike Pollocks) but that operation has turned out to be a failure for virtually everyone except Mike and I learned of this by speaking with other people who have had it; if I believed all of the doctors, I would think that the success rate is 90% or more, which is what they say but is not true.
Thank you again for answering me. I hope that you are doing well with your CH.
Yours,
John A. Sckorohod[/size]