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nfbenson

New member
im neil ritas husband rita has had a cerebral hemmorrage in 2004 still unable to see or walk but mentally ,personnality and speech greatly improved.its been a long journey ive quit my job as a nuc med tech to take care of my wife 8 mnths ago sold our home and moved to my wifes indian reservation in ny so i can get more help with my wife.has any body here had any similar experiences medically or tx with stem cell.ive even been considering going to santa domingo for tx
 

barbara

Pioneer Founding member
Neil - I would suggest you contact several clinics to see how they are treating your wife's condition. If you would like, I can send you some resources. What clinic are you talking about in Santo Domingo? There is more than one I believe.
 

nfbenson

New member
Right now I've been having my wife treated with only pt-ot,exercising her at home because of the hem. stroke,she developed a stage 4 bed sore at at a 'REHAB hospital so all of my efforts were bring her home we then got the decubitus healed at home,and because of the sore they could not do a cranioplasty for 8months so that took all of our energy. But now we had to sell our house and i had to leave my job to assist her. The clinic in Santa Domingo i have forgotten the name because i didn't think at that time it was our priority but now our priorities have changed, We have bought a portable HBOT chamber at the insistence of some of her family members she has gone to about 12 1 hr tx i havent seen any improvement even though rita my wife says she is seeing better but she is not always that reliable when answering questions. Im hoping someone out there has had similar experiences and has gone with some form of stem cell tx I'm open for suggestions from reliable sources because as most of us on this forum there are a million suggestions and I SOMETIMES WANT TO BELIEVE ANYTHING tank you Neil sorry about the typing
 

barbara

Pioneer Founding member
I sent you a private message with websites for various doctors and clinics. Careful research is very important. I preach safety first. Make sure you have a set of questions that you ask each doctor/clinic. This way you can compare what they have to offer. Also, testimonials are nice, but a lot of bs sometimes.
 
TO Neil...

Neil,
We have a portable chamber that I used to use extensively to supplement higher pressure hard chamber therapies using 100% Oxygen for my son. I have fallen away from using it much but would like to start again. I never purchased the supplemental oxygen, using a concentrator, for it. Since you are in New York on an Indian Reservation you will probably be using this mild chamber as a primary treatment. I would recommend getting an Oxygen concentrator and a mask allowing her to received probably 60% to 70% oxygen at the 1.3 Atmosphere pressure, assuming you are using an Oxyhealth Vitaeris model. I have seen good things with with hyperbaric oxygen and your wife's condition sounds serious enough to go with a concentrator added to the mild chamber given that the sooner the better with brain injury treatments. Best of luck.
Dave Snow
 
Neil - continued

Stem cells - We have taken our son for a total of 4 separate treatments of human umbilical cord derived stem cells to Dr. Ramirez in Mexico. The results were OK and we are considering another treatment next springtime but the Hyperbaric oxygen therapy is a good solid backbone treatment for stroke. Here is a link to what my son's board certified neurologist feels has on his web site regarding HBOT...

http://www.perlhealth.com/hyperbaric-stem-cells.php

Dave
 

nfbenson

New member
Thank you Dave we are having a some problems with our unit out for repairs but hopefully we will have it soon My wife and I are hopefully going for stem cell tx in calif but I need to investigate it some more thank you neil
 
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Question for the group?

Anyone read this news article that came out today?
http://www.livescience.com/health/081203-ap-stem-cell-treatment.html

I am curious as what people in this listserve think about it!

I think that they have a point, however I believe that the people writing this haven't gone far enough in stating that stem cell therapy clinical trials should be going on in this country now which is why people are traveling all around the world.

Having read some of the posted threads here on Stemcell Pioneers: I do feel that there is the tendency for some people to feel that these are proven standard therapies and that they can be shopped for as one might shop going down the aisle of Walmart. They are experimental therapies and I know of people who have died after receiving fetal stem cell "therapy". Probably due to host graft rejection.

Other than the published study by Dr. Payne and Dr. Steenblock on Cerebral Palsy treatment using stem cells derived from human umbilical cord blood, there isn't much in the way of published scientific studies that I know of. Experimental treatments as such are very expensive and by their nature potentially risky with no guarantee of success. I wish the FDA and the US government would put its attentions on improving and researching stem cell therapy in this country with subsidized clinical trials!

Dave Snow
 

barbara

Pioneer Founding member
Dave - This article was posted under Research News earlier today. There are published articles if one goes to PubMed and sorts through the scads of information there. I believe that peer reviewed, long term studies are going to be few and far between however and I agree with you that if the U.S., U.K, etc. would get the ball rolling, that people would not be searching the world trying to get well. When a person is faced with a terminal or devastating chronic disease, they can easily be swayed by fancy websites and claims of cures, but there is also growing evidence that stem cell therapy is working for many diseases when conventional medicine has failed. It may not be a cure, but in many cases, it is stopping the progression of a disease, relieving symptoms of the disease and giving hope where previously there wasn't any. With all the whining that articles like the one you are asking about provide us, I would think the group mentioned would make much better use of their time trying to get more funding for clinicals like you mention.


Jan sent me this article which does mention some published studies for lung disease and stem cell therapy:

http://www.nhlbi.nih.gov/meetings/workshops/sc-wksp.htm
 

Tami03

New member
Neil,
I saw where you stated that you may go to CA for stem cel treatment. Do you know where at in CA and who is the dr who will be doing the procedure? I have taken my daughter who had a fetal stroke to two different clinics and I would like to warn you if by chance you are going to a clinic that is based out of CA.
 

barbara

Pioneer Founding member
Not SCB

Tami - Stem Cell Biotherapy is not the company that Neil would be taking his wife to. Casey Nabavi, CEO of that company for those of you that don't know, has busied himself lately by sending notices to some former patients informing them that he is closing operations in California. I seriously doubt it was by choice, but nevertheless, it is a piece of good news.
 
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