My dear friends,
I am overwhelmed with gratitude to see the support that you all have shown me in one of my weak moments. I will not rush into the therapy now. On an academic point of view I would like to put some doubts that I would like to find answers:
I understand that stem cells may be an answer for the future but the researchers are not there yet.Who is to decide that? FDA has no jurisdiction in India or China? During 8 years of Bush rule stemcell research was banned in US as it was considered against religion. That is when US, who was a leader in the research fell behind. We have always considered US as a gold standard in everything. How come China is slowly creeping closer? They must be doing some small things better than us. Recently India sent a flight that landed on Mars (First attempt) at a total budget of 80% that of the Movie "Gravity". Did anybody know about that in US?
Most Neorologists are not updated with the latest cutting edge research. And the last to know of developments in other countries. Can a US Doctor recommend a non FDA approved procedure? He will be sued by the patient next day.
As Lute has explained, the research papers presented by Neurogen Doctors are not of the best quality. I agree with that. They also have 6 books published, they also may not be of best quality. I also sat with a Indian friend of mine, understanding "Marhati" the local language spoken in Mumbai. We found atleast 10 full length interviews on TV of Neurogen Doctors and researchers(Not advertisements) on rare neurological illnesses and use of stemcells, and they did not look like peddling their services. His opinion was that institute was not a for profit institute. The Director Dr. Sharma (a neorological Surgeon) has done his initial research in the US. He is also Full professor in a Medical University.
Today early morning, I had my second conversation the Neurologist Dr. Nadini, at Neurogen. Here is a gist of it:
They give Stemcell therapy for needy (half the people) for around 2.5 K at only operating costs.(no Doctors fees)
The actual cost of the one week program all inclusive of diagnostic test, incl CT SCANs etc is 10K US. 2 K was an approximate for my travel to and fro from US.
As Lute mentioned she guaranteed that since the stemcells will be harvested from our own bone marrow, the chance of rejection does not arise. Also they are injected into the cerebrospinal fluid in the lumber area, hence there is no blood/brain barrier.
At present they are treating about 20 patients per week. About 8 Deluxe rooms are for foreigners and paying Indians. Foreigners are not charged any higher fee.
They have treated about 30+ ataxia patients. She said their observation is that after stemcell therapy the progression of ataxia slows down considerably, also the some of the cells are regrown, they need to be coached into doing the tasks which surrounding cells are used to do lifelong, hence the PT, OT, Speech T. As the cerebellum cells are rejuvenated they send signal for better blood circulation to the affected body, usually one side of body and as the body gets strengthened it also need therapy to be used properly. In short she said stemcells will only help you if you are ready to do the hard work also. Otherwise you are wasting your time and money. (This came from the Doctor herself).You do not get a placebo effect, and apart from feeling good about yourself, you cannot feel anything in a day or two. # to 6 month period is a good time frame to see some changes. You may or may not become like a normal person ,but condition will improve significantly. She also mentioned about basics of Yoga meditation breathing exercises.
I have told her I will call again and will have some more doubts. As I get more matter from all of you I will call her again. I still have more than a month to decide weather to keep the appointment or not. Till then a lot of research and contribution from all my friends is welcome.
Sam
Lute said:
Like the first poster, I have family in India. My family in India are doctors - psychiatrists and neurologists. When I told my cousin (a neurologist) that I have ataxia, she was very sympathetic, but as I mentioned on another thread, she didn't say "hey, we have some really promising experimental treatment over here, you must come and try it".
Beyond that: I am an epidemiologist. I have just now read the papers on Neurogen's website that seemed most relevant to SCA (i.e. incurable neurological conditions). The thing that struck me immediately was that a) all the treatments they mentioned were followed up by extensive physiotherapy and other neuro-rehabilitative treatment; and b) there was no control group in the studies. What that means is that it's entirely possible that any improved quality of life patients' experienced was due to placebo and/or the rehabilitative treatment, and had nothing to do with the stem cell treatment.
The point of the papers generally seems to be to prove that it's safe to do the treatments they propose, i.e. it's not going to make any patient any worse. That's an important step on the path towards proper clinical testing, but it's not proper clinical testing.
Those papers therefore provide pretty much the lowest type of evidence of treatment effectiveness. If I were writing a systematic review of the evidence provided by Neurogen that stem cell treatment can cure SCA (or indeed any of the other conditions they claim to treat) I would say there is exactly ZERO proof that their stem cell treatment has any effect on neurological conditions.
I know you really, really want this to be the answer, but please trust me when I say it's not.
There is some "Eastern" treatment that may help, but it's not medical. Lots of people find meditation and/or "mindfulness" help them accept things/changes in their life over which they have no control. But you don't need to spend $12K or go to India to learn either of these things.