42 replies to this topic

[Sandstorm]

Hi,

My name is Sandy and am from Bangalore - India. I met with a car accident on 26th December 2005 and was paralyzed waist down since then (Paraplegic). I suffered a burst fracture in the T9 vertebrae which was later stabilized performing a surgery (Fusion). I now have 2 titanium rods stabilizing T8, T9 and T10 vertebrae’s.
Since the time of accident I have had a continuous burning feeling in my lower limbs. I have now developed a tingling feeling in my legs which the doctors say is a good start.
Clearing of bladder and bowel is done using the catheters and suppositories. I have been taking tablets to for bladder control and for reducing spasms.

Recently I came across an article stating that there was success with the stem cell transplant and the patient who WAS A PARAPLEGIC is now walking without any support. He further has control over his bladder and has regained full sensation in his lower body. This is a brilliant news for me. I have now contacted the doctors from Lifeline Hospital - Chennai, India who performed this transplant and have sent them my papers. I now have a date fixed for the transplant.

I will keep you all posted on the outcome of this transplant.

Please pray for me.

Cheers

SX


For details of Lifeline Hospital - Chennai INDIA

http://www.stemcell-...a.com/intro.htm

Case:

http://www.stemcell-india.com/news.htm

[Kev-O]

great news good luck

[hockeydahc]

ditto. please update us.

[Texaswheelz]

Good luck with it. Not to dash any hopes, but the one thing that concerns me with the case is that it was done only 10 weeks after his injury. The return he received might have came without the stem cells. I've ran across many people who have had full function return within 4 weeks to 2-3 years from date of their injury. It is good to see that studies of this type are being done some where though.

[Sandstorm]

Thanks People =)

I will keep you all updated on a timely basis. I am currently undergoing a tough physio regime as a head start for this transplant. I have been working out on a lot of spine stretching exercises.

The transplant date is scheduled for the month of September. So keeping all my fingers crossed.

I just found this link and thought should keep you all posted.

A quick reference to all the stem cell work that is being currently undertaken around the world.

http://www.sci-thera.../Stem-Cells.htm

my mail address is 'sanddstorm@gmail.com'..

Stay in touch.

Cheers

SX

[R R]

YES DEAR....
ALL THE BEST....
MY SON AGED 16 YEARS , IS HAVING SPINAL INJURY IN OCT 2004, DUE TO FALLING DOWN FROM 60 FT HEIGHT....
HE IS HAVING NO SENSATION ON LOWER LIMBS.....
HE IS ABLE TO WALK WITH CALIPERS/CRUTCHES....WITHOUT ANY TREATMENT....
WILL REMIAN IN TOUCH....
CAN MAIL ME rrp@sbs.co.in
R R PATEL
AHMEDABAD

[Sandstorm]

Hi All...

As promised to keep you all posted, I am going to Chennai for the transplant.

I will update you all once i come back on the procedure, time involved, stay, cost, medication etc etc..

Till next time....

SX

[Texaswheelz]

GOOD LUCK!

[Jasmina86]

Hi all,

I am actually doing some research on Paraplegics and the Stem Cell research.
My boss has a close friend who is a Paraplegic and recently accompanied him on an overseas trip which left him heart broken to see his friend struggle. Im trying to find the best specialists that there are in the world in order for us to help him regain his strengths through surgery and whatever else is needed. Expense costs are no issue so if anybody knows of any good specialists could you please reply back to this bulletin.

Regards,

Jasmina

[katd]

Hi
I am new to this link. I just read your post. I am soooooooooooo excited for you. I had my t10 and t11 discs burst sporadically in Nov 2006. No accident or fall--just standing and talking to a friend at work. I have no damage to my cord but am unable to walk. I have always had tingles in my legs but am starting to get new sensations in my thighs--kind of a burning sensation. I am going to Mayo in October. I developed a brain stem encephalitis due to the large amounts of steroids I received. They suppressed my immune system and they believe a dormant virus came through but no one can diagnosis it. They think the virus might be blocking the brain signals. Anyway, I am glad I found this site. And wish you all the best. Please keep us posted.

Katd
l

Sandstorm, on Sep 11 2007, 01:22 AM, said:

Hi All...

As promised to keep you all posted, I am going to Chennai for the transplant.

I will update you all once i come back on the procedure, time involved, stay, cost, medication etc etc..

Till next time....

SX

[Sandstorm]

Hello People...

Just got back from Chennai. I successfully underwent the transplant on the 13th of this month. It was a 6hrs process where they extracted the cells from my hip bone marrow and injected the cells after separating them the same day. As of now i have been asked to continue with my regular medication and go back fo a review in the next 3 months.

I landed in Chennai on the 11th evening and the next day they ran several tests which included MRI, Nerve conduction test, a test on Bladder, blood, urine ect.

I was asked to fast post 9pm and was taken to the ICU at 9am the next day. They extracted about 100ml of bone marrow which was then sent to the lab for further tests and seperation of stem cells. Approximately 5 million cells where later injected to my Lumbar area and the process was absolutely painless. (Talk about not having sensation below the waist acting as a blessing in disguise).

Later was shifted back to my room and was given medications to avoid nausea, vomiting, headache and temperature. This normally happens when the transplant is done.

The next day I was given physiotherapy and was advised a few additional exercises which i would now work on.

The docs say that I require a minimum of 2 months to start seeing the actual outcome of this transplant. The chief physio who spoke to me was all positive asking me to give meself 6months to start walking. Overall a productive trip and just crossing my fingers that all works out the way the docs have spoken.

I will post the details of my progress on a weekly basis.. I will also visit this thread regularly just incase anyone needs any queries on this topic.

I am glad that I am in a position to personally experience the outcome of this transplant. I have read a lot of people claiming successful transplants but have never managed to get in touch with the patients who underwent such transplants to check the outcome.

So here we are, The moment of reality!

Cheers

SX

[Trail-Boss]

Hey Sandstorm,
Sounds so super, hope this all works out for you. How exciting! Where are you located and how much is the procedure? Because for most of us it would probably be out of pocket. Trail-Boss is a C3/C4 incomplete. Cord was just bruised. No movement from chest down.
Good Luck to you.
Stick-Tight

[Sandstorm]

Yeah.. Totally agree...
Crossing my fingers that all the efforts put in pays off.

I also forgot to mention that I met a Quadriplegic from North India during my stay at the hospital. His name was Faiz, he had a Cervical injury and was paralyzed chest down.. Felt bad looking at the lad..

He too has undergone this transplant and have borrowed his number to stay in touch to see how his recovery is shaping up. Will post more details on the same as and when i get to hear more from him.

The cost of the complete transplant costed me Rs. 2,00,000 (approx $4500)

I complete 1 week day after tomorrow. As of now i dont feel any difference.

Cheers

SX

Edited by Sandstorm, 18 September 2007 - 05:36 AM.

[sean3282]

Hi Sandstorm,

I hope your transplant does the trick and gets you up and about on your feet again. I'm new to this forum and my SCI, I'm hoping that Stem Cell research will help me get my old life back.

In April 2007, I had a motorcycle accident and at the time prior to surgery I had almost full sensory feeling in both my legs, but was unable to move them. I was informed that I had a burst fracture to my L1 vertabrae and had metal work placed to support spine. I had surgery the day after my accident and immediately noticed I had lost all of the sensory feeling in my legs.

I too have burning, tingling and aching in both of my legs, but the consultants do not seem to be at all positive about this and ask if it is causing me discomfort because they would be able to medication to alliviate any discomort caused.

I am still an inpatient at the SCIC and unlike some of the patients with similar injuries to me I have warmth in my legs and get sweaty feet/ ankles from time to time. I've heard that this is a good sign but again the consultants don't seem to be interrested. I guess that my sweaty feet aren't going to get me walking again.
I've also developed a twitch in my right calf that occurrs within seconds after I attempt to flex and move my foot or toes. Hopefully another good sign.

I'm still full of hope and longing to walk again and get back to how I used to live my life post injury. At this stage I'm looking into viable treatments to help me reach this goal but I'm still unsure about spending money on a procedure that has not as yet given out defintive results.

Good luck and hope this works for you, me and all of us out there with SCIs.

Sean

[Doug]

I am watching this forum like a hawk. I would do anything to regain more movement and I wish you the best of luck.

[barber1]

What's the newest news?

[sean3282]

Hello again,

Did they say that you should expect those results after 1 treatment or will you need to go back for additional treatment?

Cheers

Sean

[Sandstorm]

Hello There.......

I am into my second Week of transplant... unfortunately nothing new apart from the stiffness in my limbs coming down.

I managed to get in touch with the docs again to understand how actually this transplant works.. well the deal is this way..

If the transplant is done 6 months from the date of injury period then then the recovery starts 4-6 weeks from the transplant date...

If the transplant is done 6 months to 12 months from the injury period then then the recovery starts 2 months -6 months from the transplant date...

If the transplant is done 1 year and above from the time of injury then the recovery starts 4 months from the transplant date...

I guess i have no other chances other than wait... and keep my physiotherapy rolling... I have advised to take tab Lyrica once every day after the transplant.. My dosage of the tabs for my bladder also has been increased..

Hopefully the coming week should give me some new symptoms...

Fingers Crossed!!!



@ Sean

Hi Sean: Sorry to hear about your bike accident mate. Actually as far as my knowledge goes... the twitch and the warm feeling in ur limbs is a sooper good sign.. Keep that physiotherapy rolling and lets hope ur recovery happens without any transplants or additional medications....

Sean, I have been advised to undergo a review after 3 months and the docs state that if there is a requirement then they might ask me to go in for one last transplant. Not sure how the deal is going to workout.. But lets see..how my review shapes up in the next two three months..

PS: Im from India.

allright people.. me getting off now... its 11.3pm here and its time to hit the sack..

Cheerio!!

SX

[sean3282]

Hi,

I've been in email contact with one of the Doc's from the hospital, who has been quite helpful and will be sending me information pack and contact details of some of the patients who have undergone this procedure.

Thanks for your last post and the additional information.

S x

[Sandstorm]

All the best mate

[dhavalhs]

Hey Sandstorm, Unfortunately my Mom (IN USA) got in to the accident to and she is a complete paraplegic. If you can email me at dhavalhs@gmail.com your phone number and the best time to call you it will be great. We were also looking at this doctor, and you are the first person that we have been in touch with that has an actual experience. I would like to get in touch with you as soon as possible. Am praying for you.

Dhaval

[intrin]

hello, interesting story, hope all is going well, have you had any progress ? i have been paralyzed for 9 years the 4th of october and am starting to look for alternatives to sitting in a chair all the time

take care

[kcr]

hi sandy,
how much the operation cost you?

[dave420atya]

$4500. sounds very reasonable if it works. I would sell every thing I own to walk again. I think it is safe to say we are all excited to find out your outcome .
Do they welcome redneck Americans in India? If so I will hopefully be packing my bags for your land soon!
We haven't heard from you for over two weeks now Sandstorm, I hope all is well .
We are eager for your updates.

[Imight]

Sandstorm, on Aug 11 2007, 07:27 AM, said:

Hi,

My name is Sandy and am from Bangalore - India. I met with a car accident on 26th December 2005 and was paralyzed waist down since then (Paraplegic). I suffered a burst fracture in the T9 vertebrae which was later stabilized performing a surgery (Fusion). I now have 2 titanium rods stabilizing T8, T9 and T10 vertebrae’s.
Since the time of accident I have had a continuous burning feeling in my lower limbs. I have now developed a tingling feeling in my legs which the doctors say is a good start.
Clearing of bladder and bowel is done using the catheters and suppositories. I have been taking tablets to for bladder control and for reducing spasms.

Recently I came across an article stating that there was success with the stem cell transplant and the patient who WAS A PARAPLEGIC is now walking without any support. He further has control over his bladder and has regained full sensation in his lower body. This is a brilliant news for me. I have now contacted the doctors from Lifeline Hospital - Chennai, India who performed this transplant and have sent them my papers. I now have a date fixed for the transplant.

I will keep you all posted on the outcome of this transplant.

Please pray for me.

Cheers

SX


For details of Lifeline Hospital - Chennai INDIA

http://www.stemcell-...a.com/intro.htm

Case:

http://www.stemcell-india.com/news.htm

Keep us updated! I have been looking into a mexican (california doctors working out of mexico to avoid U.S law) they run at about 10-20k.

if this works for you. I am there.

[birju patel]

Guys i just found something out that I thought I had to share with ya, do read this message, and the email below this message and this link http://picasaweb.goo...834435588273282 do maximize it

My name is Birju Patel; I have been a paraplegic since December 2002 due to a spinal cord injury.

Stem cell is the next big hope for people those are in my condition. In January of 2007 I got in touch with Dr. Ravi Kumar of Lifeline hospital Chennai. Initially he told me that his hospital was getting great results from the stem cell treatment in their 20 patients.

Treatment details http://birjupatel.blogspot.com

Dr Ravi told me the 2 of the patients were walking after the treatment, one was Ali Akbar and other was Mr. Srinivas. I had called Ali Akbar but because of the language problem I couldn't communicate much with Ali Akbar. I spoke with Mr. Srinivas twice and he said he was walking after this treatment.

So based on the two calls that I made to Mr. Srinivas I decided to go ahead with the treatment.

A while back I called Mr. Suresh raj who is the co coordinator of the stem cell treatment for the lifeline.

I found that the voices of Mr. Suresh and Mr. Srinivas were similar. Then I checked the number of Mr. Suresh and Mr. srinivas and to my amazement they happened to be the same number. I had confronted Dr Ravi with this and Dr ravi made a lot of different stories.

As my proof I am attaching a page from their website where it's clearly mentioned that Mr. Suresh's number is 9840940283 and the email that I am forwarding along this email mentions. "it below this email"

1. Mr. Srinivas, Chennai city: 09840940283

do check the bottom for the email that Dr Ravi sent me before I went for the treatment.

I asked Dr ravi why was Mr. srinivas's name not mentioned in the media in spite of getting great results. He told me that they couldn't contact him.

Then I told him that the numbers were same for Mr. srinivas and Mr Suresh, upon that he said that
Mr. srinivas was in the hospital.

Then I told him that I spoke to him when he was at his business, upon that dr. ravi said that Initially
some patients were given cell phones to use.

In other words I was tricked into believing that this treatment would work. It is clear that Mr. Suresh Raj and Dr Ravi Created this fictitious character Mr. Srinivas. Do you really believe that the hospital would loose contact of a person that started walking? Please read the email that will follow this email, plus the attachment.

By the way they have taken all the info off their website.

Ravi Kumar email ravi63_in@...

Note: forwarded message attached.

Birju Patel

Tele:- 813 649 8718 (Tampa Number that I have in india)
Tele :-91 0265 6542324
cell :- 9427352470
My Photo Album
http://www.flickr.co...03/collections/

My Writtings http://birjupatel.blogspot.com/

My Funny Videos http://www.youtube.com/patelville

Take the Internet to Go: Yahoo!Go puts the Internet in your pocket: mail, news, photos & more.

Forwarded Message [ Download File ]
Date: Thu, 8 Feb 2007 01:42:10 +0000 (GMT)
From: "ravi kumar" <ravi63_in@...>
Subject: Re: Medical Reports of Birju Patel Baroda
To: "Birju Patel" <patelville@...>

Plain Text Attachment [ Scan and Save to Computer ]

Dear Birju,
I am giving the numbers of 2 of our patients whose numbers are available with us:

1. Mr Srinivas ,Chennai city:09840940283
2. Mr Akbar Ali ,Village in Cuddalore Distt Tamil Nadu :09486279887

You may contact them in person. Mr Srinivas had started treatment 3 months back and is doing very well.

Akbar Ali is a more Complicated case ,he started treatment in December.

best wishes,

Dr RAVI KUMAR
--- Birju Patel <patelville@...> wrote:

> Dr RaviKumar,
> Sorry to bother you again, I have to convince my
> family that this works, so can you please give me
> the patient's number. It would be great, if they get
> to talk to them. I think they will feel more
> secured. I am 100 percent sure about your
> techniques, and I have full faith that your therapy
> will work for me. I feel bad to bother you so many
> times. In the mean time I will be getting both the
> tests done
> thank you very much
> Birju
>
> ravi kumar <ravi63_in@...> wrote: Dear Mr
> Patel,
>
> I will check with our associate Japanese LAb and
> the
> treating Neurosurgeons and get back to you for the
> exact dates.
> The payment by Draft /Credit card is allright for
> the
> Hospital.
> If you wish Hospital will send an Ambulance to the
> Airport/Station for transport.
>
> I will get back in 2 days.
>
> best wishes,
>
> DR R.RAVI KUMAR
>
> --- Birju Patel
> wrote:
>
> > Dr Ravi Kumar,
> > I feel very confident about you, I dont think I
> will
> > want to wait for anymore. So let me know what is
> the
> > procedure, what would you require from me before
> and
> > after I come there. Do I have to bring my MRI?
> > Please let me know about the financail part too,
> Do
> > I have to get a draft or check is fine. Plus can
> you
> > tell me the schedule of all the 3 days, so that i
> > can decide what time to fly and other stuff.
> > Thanks a lot
> > Birju
> >
> > ravi kumar wrote: Dear Mr
> > Patel,
> >
> > Of our 11 Patients with Spinal Cord injury 2
> > patients
> > have started to walk in the last 2 months. But
> they
> > may improve further in the next 2-3 months. As the
> > Therapy was started only in November These are
> early
> > days.Also no body had any side effects or
> infecion.
> >
> > Titanium Implants are no problem- Most of the
> > patients
> > had some spinal fixation during surgery.
> >
> > Stem cell therapy is a New therapy in the realm
> of
> > latest innovations in the field of Medicine. In
> > strict
> > Medicolegal terms - it is in a stage of "CLINICAL
> > STUDY " only . US FDA has not started looking at
> it
> > as
> > nobody in USA is trying it out. In India ICMR
> > (Indian
> > Council of Medical research)has provisionally
> > approved
> > Adult Stem cell Therapy NOT EMBRYONIC therapy.
> >
> > Insurance does not cover it in India- Also nobody
> > has
> > applied for it. That will take atleast 5 years and
> > hundreds of case studies worldwide.
> > Also the cost of RX is 50-60000 Rs which is
> nominal.
> >
> > I will try to send phone numbers of other
> patients.
> >
> > The yield of stem cells are about 750-1500 Million
> > cells and actually that is only 1% of the Total
> > cells
> > in 100 ml of blood sample we take out from the
> > patient.
> >
> > No side effects have been noticed till now and
> none
> > expected ,except in very few cases - Mild fever
> for
> > 1-2 days.
> >
> > I will also highlight that in case you have any
> > doubts of efficacy etc of the treatment you may
> wait
> > for 1-2 years for full results to be out as these
> > are
> > VERY EARLY DAYS for us to comment further and we
> are
> > observing final results in the majority of
> patients.
> >
> > best wishes,
> >
> > DR R.RAVI KUMAR
> >
> >
> >
> > --- Birju Patel
> > wrote:
> >
> > > DR. Ravi Kumar,
> > > Thanks for your prompt reply. If you dont mind I
> > > have a few questions.
> > >
> > > 1, Has any patient started to walk
> > > 2. I have a titanium implant, would that matter
> > > 3. is this covered by insurance
> > > 4. can i see other patients reports or talk to
> > them
> > > 5. i read that you inject .5 to 1 billion stems,
> > hwo
> > > would you get that amount in one day.?
> > > 6. any side effects of this
> > >
> > > i hope this questions are okay to ask
> > > thank you very much
> > > Birju
> > >
> > > ravi kumar wrote: Dear Mr
> > > Patel,
> > >
> > > I have gone through your Medical reports.
> > > You are definitely likely to benifit from Bone
> > > Marrow
> > > Stem cell therapy.
> > >
> > > The Initial Treatment course Involves Admission
> in
> > > Hospital for 3 days.
> > > We Extract The Bone marrow blood in the first
> day
> > > and Inject back the Stem cell the same day
> > evening.
> > > You will have take an appointment with us for
> the
> > > date
> > > as the LAb has to be free the same day.
> > >
> > > The Cost of therapy(Package) for 3 days is
> 60,000
> > RS
> > > for single Room. Any Drugs/Pharmacy is extra.
> > > Urodynamic study tests and Electroneurogram(ENG)
> > > test
> > > for lower limbs is extra. I suggest you can get
> > this
> > > done in your Hometown.
> > >
> > > The Neurosurgeon/Urologist wil assess the
> results
> > > after
> > > 6 weeks
> > > In your case since the Injury is relatively
> > recent,
> > > The chances of success is high- ie about 80 %
> for
> > > Motor and Bladder function. It is worth trying
> the
> > > therapy.
> > >
> > > Pl do contact me a at 09840955600 for further
> > > details.
> > >
> > > with best wishes,
> > >
> > > DR R.RAVI KUMAR MD
> > > COORDINATOR STEM CELL PROGRAMME
> > > LIFELINE HOSPITAL,CHENNAI.
> > >
> > > --- Birju Patel
> > > wrote:
> > >
> > > > Dr Ravi,
> > > > It was so nice to talk to a confident doctor
> > like
> > > > your, I really was happy to hear the answers
> > from

[Sandstorm]

Hello People.. Sorry was not able to login to this forum as my net connect was down for some time...

Now this is a little creepy.. Man Where were u before i enrolled myself for this transplant? Damn.. I hope i did not get conned.. Plus you are quoting about 60k where as they charged me 180k.

But to be honest.. my condition is a little better compared to what I used to be earlier. I have a lot of tingling feelin in my thighs and had this weird weird feeling in one of my toes as if something is pulling my toe down.. call it good sign or just a stupid feeling in my head..

Well I guess time will tell if I have been conned or there is anything in so called "Stem Cell" transplant..

Its a little disappointing to know that people con you..and take benefit of ur current situation. I guess I don't have any other go except wait and see the benefit or side effect of this transplant. (Assuming that the people in lifeline hospital are fraudsters from your story)

Well people.. i would suggest...wait for another 6-12months before things get more concrete in terms of stem cell research and then go for these options.

Meanwhile.. Good or Bad.. I will update you on my progress.

Fingers Crossed.

Edited by Sandstorm, 22 October 2007 - 05:56 PM.

[dave420atya]

What was that Imight posted about Mexico? American doctors working around stupid American laws on stem cells. I would like to know more.
I hope you got the real thing Sandy.
I hope you have good news for us soon.
I will be looking forward to your posts.
GOOD LUCK!!
Keep us updated on your progress. And keep working hard . Try to have no douts in your mind . Think positive so those cells know that is what your body wants them to do.
Glad your back ,now keep in touch !
stupid laws

Edited by dave420atya, 22 October 2007 - 06:27 PM.

[kewlcatkez]

Sandy,
Looking at Mr Patel's links, it appears that he too had the cell transfer 'transplant'. However, I couldnt find any other entries related to this after the procedure entry on his site.

It may be that the director ( or whatever he was ) at the hospital posed as a recipient in order to get more interest. This is unethical and immoral, but it doesn't mean that his procedure is a load or crud. I would be very wary of it all the same and it would have been better to know all of this before you went ahead. I just feel for you and hope that you didn't get conned, but equally hope that whatever his motives, that there is some benefit in it.

I hope that you do have return and that this is a success for you. Whether that 'success' means that you do have improvements or whether success means that you find peace knowing that you did everything within your grasp and more to improve your chances of walking again.

Best wishes,


K

[Sandstorm]

Yeah.. just hope things work out..

As of now.. im not feeling anything new apart from the old burning feeling... hoping the next few weeks kinda help me out