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Last week may have been boring, but this week has already been exciting and very UNboring!
On Monday I spent the morning with a friend in the recovery room after her second venoplasty. She was originally (under)treated by Dr. Neville at Georgetown, just like I was. This is just a statement of fact, not a judgement or criticism!
This time she was treated by Dr. James McGuckin at Vascular Access Center in DC. Although Dr. McGuckin is not working under his own IRB-approved study, he is asking his patients to participate in The Hubbard Multicenter Registry. According to the website: "The Registery collects the data after patient identifiers have been removed, analyzes the data and reports the findings. The primary purpose of the registry is to collect information on how common CCSVI is, and whether MRI and clinical changes occur following treatment." Hey, it's better than nothing!
I spoke with her Tuesday morning, and she is already experiencing amazing improvements in vision, pain, cognition, and walking. I am so thrilled for her!
Today (Wednesday) I had an appointment with my favorite neurologist, Carlo Tornatore. I realize that I am in a sad minority who really like their neuro. That is probably because Dr. T is one of only a small number of neurologists who are open-minded, and actually interested in learning more about CCSVI.
He evaluated my walking. and was thrilled to see that I am at an EDSS score of 3.5. This means that I am "fully ambulatory but with moderate disability in one FS and more than minimal disability in several others."
I would say still at 3.5, but when he last evaluated my walking in August, it was two weeks after my second treatment. My gains lasted for two months, then I regressed back to my sorry state of an EDSS of 6.0 (requiring a cane full time). As you may remember, I was retreated in December, and I am now back down to EDSS 3.5. Sorry. It confuses me, too!
I think that the EDSS is a poor way of measuring disability, but it is an easy one for doctors to use to quickly assess walking, a critical measure, but only one small component of MS. Had he taken me out to walk on grass, or a cobblestone street, I would have needed that cane for sure. I used to need it even in his perfectly smooth hallway, too, so it is still impressive to him that I easily walked back and forth several times, cane-free. Dr. T. had a first year medical student with him at my appointment. Boy did he get an education today! Dr. T. told him all about CCSVI, and my experience as the first person treated at Georgetown. He even pulled up the before and after pics of my right jugular vein, and the local CBS news piece on his computer to show the student! We also talked about the benefits of this treatment for younger patients. He told the student about a patient of his who was diagnosed at 20, treated for CCSVI at Georegetown last March at age 21, and is now totally symptom free! I love that story! He agreed with me that had CCSVI and this treatment been around when I was diagnosed at age 20, I would probably have similar results. He believes that young veins are more responsive to this treatment. I also added that there is less time for permanent damage to myelin and axons if CCSVI is caught and treated early. Hey, I can teach this kid a thing or two, too!
I took the liberty of telling him that the majority of neurologists are downright hostile to the theory of CCSVI. Dr. T tried several times to explain why his fellow doctors were behaving the way they are. After several stops and starts he gave up. He said that he could not understand how his colleagues could not be at least curious about CCSVI and its potential impact on their patients.
In July, 2010, Dr. David Hubbard told the crowd at the CCSVI Symposium in Brooklyn, NY, "I'm a neurologist and for the first time am a bit embarrassed about it."
It seemed to me that Dr. T. was feeling that way today, too. :o(
Towards the end of my appointment I asked if he was contemplating doing a full-blown study of CCSVI treatment. Without giving me a definitive answer, I got the impression that Georgetown may not be done with studying this condition and its treatment. When 29 other patients and I were treated last spring we were under the impression that we were actually in a study. We now know that it was not an official study, but more of a preliminary exploration of venoplasty for CCSVI. It was very frustrating at the time because there was not a lot of good communication among the vascular dept., neurology, and patients. I now appreciate how impressive it was that they tried it at all way back then!
We need good studies of venoplasty done at high profile universities. The stumbling block for so many Interventional Radiologists who want desperately to do studies is uncooperative, or downright hostileneurologists. We at Georgetown are so lucky to have a head of the MS Center who is not afraid of, and is curious to know more about CCSVI treatment. I am so sad that that makes him such a shining exception.
I told my doctor and his student that I have always thought that Dr. T was very special. I am appreciating him even more these days for the simple fact that he has an open mind. That should never be a trait that makes a doctor unusual or remarkable! But right now in the field of MS neurology it does, and he is. Now if only we could clone him!