I was NOT helped by Dr. Stone at Phoenix Mayo. (for more on why I went to Dr, Stone, see email@example.com) Dr. Stone did CTs of my head, neck and chest. Dr. Stone said the Blockage in my left Internal Jugular Vein goes up into my brain/cranium. So he said there is Nothing he can do to give me Increased Blood Flow. I tried to get a Consult from a Brain Surgeon and Mayo said NO, they are Done with me.
I have made copies of my CTs and sent them to Dr. Hewett of Pacific Interventionalists, aka Synergy. He called and discussed some things with me, but no immediate help. Dr. Hewett made an observation on one of my CT images, which I have sent via Facebook to Dr. Sal Sclafani in Brooklyn and he is waiting to get the full set of CT images.
Dr. William Stone of AZ Mayo Clinic has done a NEW vein by-pass surgery for an MS patient who did NOT have success with Angioplasty for his CCSVI. MIRACLES NEVER CEASE-! This is what I was going to fly to Italy for...now it so close to home. As my abilities get Worse and Worse, Day by Day, I am anxious to Stop the Progression of this disease, by fixing my veins, Unblocking the Blood Flow, ASAP. I have already experienced my Standing and Walking Improved, as well as hand tremors Faded, so I was able to write and use my hands as a Normal person. I WANT THAT ASAP -- BEFORE I DIE--!!!
Since I am at the end of the Road with my CCSVI (Chronic Cerebro-Spinal Venous Insufficiency) journey, I am starting a new path. As I said before, the docs (Interventional Radiologists)cannot complete my treatment for CCSVI, as my left IJV (Internal Jugular Vein)is occluded/blocked beyond the ability of the doctors to Correct right now. I have had my right IJV opened and my chest/azygos vein opened and I am enjoying benefits from that. I have been OFF MS drugs since Dec. 2010, my MRI shows No New Lesions and my blood-brain barrier is not being Invaded. I have heard of other MSers that are in this same predicament of Incomplete CCSVI treatment as the Knowledge of what to do is Not Here yet. I couple of MSers in Italy have been helped by a brave vascular surgeon, Doctor Salvatore Spagnolo. This doctor creates an alternate pathway for blood, using a vein from the patient's leg. You can search on the Internet for details. One patient was able to get up out of his wheelchair and walk on his own. Another lady is walking again and she can play the piano, 2 abilities she had lost. I have found an Italian lady surgeon in Scottsdale that knows Dr. Zamboni, does CCSVI treatments, and is intereed in my case. There are many steps that must be taken on this path, so I will be giving you updates as they happen.
Hi folks, the summer is HOT, so I'm going to take a Break from everything for 2 reasons - ONE is the Unusually HOT and Muggy/Humid summer. TWO is that I have gone as far as I can go with treatments for my CCSVU condition at this time. I have been e-mailing to Dr. Siskin in Albany, a CCSVI expert and S.I.R.(Society for Interventional Radiology)spokesperson. Also e-mailing to Dr. Ponec of Oceanside, associated with Hubbard Foundation, who gives CCSVI treatments at the Del Mar Vein Clinic. Both met at the recent CCSVI Symposium in N.Y. and actually discussed my case - I am honored at that. Both doctors concluded that nothing more can be done for me at this time. I beg to differ, as there is the option of ballooning my collaterals, like the 1st time. I will try to rest and recover, as my body is showing me that it is stressed out. But I will Never Give Up-!
My MS body is getting the Best of me--why do we have so many problems? I can't do the simplest things anymore. I struggle to keep walking...I'm waiting for my next treatment to correct this CCSVI birth defect...ugh! Double ugh! It's embarassing what your body will STOP doing Without your permission...
Well, my 2nd CCSVI treatment was with Dr. Arata at Pacific Interventionalists. Since I am on Medicare for my disability, I asked them to bill Medicare. Dr. Arata says in Calif. Medicare is managed by Blue Cross and they won't pay. I told them Medicare already paid almost half for my 1st CCSVI procedure which was done at DelMar Vein Clinic, thru Hubbard in San Diego, 6 months ago. Dr. Arata was surprised and said maybe it is because I am from Arizona. So in order to bill Medicare, I had to be admitted as an outpatient to Fountain Valley Hosp.,a few miles away. I'm sorry to say that Dr. Arata could Not reach my left IJV with the wire, so no work done there. But he worked on my right IJV and did something in my Azygos. I am still waiting to get Dr. Arata's report. Overall, my Brain Fog is gone, but I Do NOT have the physical improvements I had after the 1st CCSVI treatment. So I am disappointed, but looking forward to my next treatment. I think this is the Way to Go for me because of the multiple symptom improvements I experienced the 1st time.
I feel so IMPORTANT -! I got an e-mail from Dr. Gary Siskin in Albany, N.Y. --WOW--!! If you are reading this & don't know how important he is and all the work he is doing with CCSVI, then you need to Google him & find out. I feel so Blessed & Honored that he took the time from his busy schedule to look at my records from my 1st CCSVI treatment and give his opinion if I should do another treatment. And he said "it's worth a second look", esp. since I had NOTHING done to the azygos vein, due to my scoliosis. I am So Happy-! I don't care that I have to wait until November, because I'm already booked to do my next/second CCSVI in March in Costa Mesa with the Pacific IRs. So N.Y. would be a 3rd time, if necessary. I have to keep all the irons in the fire, as MS continues to Progress & I have 30 years of destruction to undo...
There is an Important Event in Seattle coming up, the last weekend in January. Doctors will consult with you ONE on ONE about your Status, so bring any tests you've had done with you & Good Luck!! For More Info. see Kathleen Lynch on FACEBOOK...