Stem Cell Study

[gr33nmind]

Recently I have been considered for a stem cell treatment in California. Unfortunately they asked me to send them my original trauma reports, including any scans I have. I had this info, but about fifteen years ago during a move I lost everything, except for my rehab reports. These discuss my injury fairly well, but do not include any brain scans. They are also written in a non complicated way, so probably omit an awful lot of technical info they would need. I tried contacting the original trauma center, but not only are records destroyed after 5 years, but the trauma center has since changed ownership. I had been in constant contact wt the person in charge of the stem cell study, that is until I revealed to them that I had no original trauma reports. I am guessing that this officially excludes me from the study, but I wish that they at least had the nerve to admit to me that I was no longer a possible candidate.

[cat3]

Stem cell treatment is definitely the way forward for brain injury ; as you know Gr it's been highly successful in all recent trials. So I'm really sorry that circumstances prevent you from participating, and can only imagine how disappointed you're feeling.

Regards Cat x

[barny1]

That's a terrible shame as stem cells are definitely hold a lot of promise based on studies done so far. I'm not aware of any stem cell trials here in the UK apart a recent trial for stroke survivors aimed at improving mobility, so as a TBI survivor, that would exclude me. These studies have very strict criteria and to qualify you'd normally have to be medication-free which is unrealistic for many.

[gr33nmind in reply to barny1]

I wonder if this trial also requires you to be off medication? I only take a low dose of both a muscle relaxer, and an antidepressant, but I'm not sure if I could go off them for an extended amount of time.

[barny1 in reply to gr33nmind]

Clinical trials are usually advertised on the internet. I think the most popular site for US-based clinical trials is clinicaltrials.gov. If you could find the study there you'd be able to see the inclusion and exclusion criteria. If a study is testing a new drug they wouldn't want you be currently medicated as that would interfere with any conclusions.

[Julesgettingthere]

Hello again grrr33mind, Jules here

Would up to date scans backed with a private consult work ?

I had to have one scan private at the Nuffield hospital, costly thou, think the scan was about £500. Maybe the GP would allow it ?

Jules

[gr33nmind]

I don't think they want to see my current brain scans, but instead want to see my initial brain scans from 20 years ago. I think I'll just send them my rehab reports, and hope for the best. The circumstances of my injury, are quite unusual, but considering most of my neuron death wasn't from force, but rather hypoxia, perhaps they might make an exception. Honestly what could they learn from 20 year old scans, that they couldn't learn from present day ones, that they might choose to conduct. Hoping for the best ...

[barny1 in reply to gr33nmind]

If you don't have the actual scan, they'd probably accept a scan report. I'm guessing you had a CT scan and seeing as it was a hypoxic injury there probably wouldn't have been any blood clots and visible tissue damage so they wouldn't be any more informed about your injury. Were the hospital records digitised? Perhaps that is your only hope. It makes me think, I don't have a copy of the CT scans of my injury, it isn't hospital policy to give them to patients, however I do have radiologist reports of the CT scans as these were released by the hospital following a request by my solicitor.

[lisadawn1970]

Hi Have you got any further with the stem cell treatment? My son is 20 and suffered a head injury aged 7 and he is looking into the treatment in america. Any info who really be helpful

Thanks ever so much

[gr33nmind]

Lisa,

Coincidence that you mentioning this. I've also been wondering if they forgot about me. I contacted them by email, and they finally replied today, saying I'm on a waiting list.

Apparently they have a pretty large list of people. I started applying last year and finally officially entered the study about 6 months ago, and I'm still on a waiting list just to be seen at a nearby rehab (an hour away.) This visit will just involve testing, to see if I meet further qualifications.

It is only the first study, but I suspect that there are going to be others, or even possibly even a real medical procedure allowed, depending on it's success. Here is the first step in the study tbistemcellstudy.ucsf.edu/s...

1970 was when I was born