Got it done - Dr. Slavin's Protocol

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Got it done - Dr. Slavin's Protocol

Postby ariehs » Sun Dec 20, 2009 2:03 pm

Dec 17th, Athens, Greece, Dr. Slavin's protocol.
50.7 x 10^6 (50,700,000) cells injected into my spine and bloodstream.

I'd never had an LP before, and didn't know what to expect. It was painful not just because of the intensity of the pain (though that wasn't exactly mild), but also because of the location of the sensation. Not just strange.

Lying for 3 hours in a prone position with my feet raised and head lowered was uncomfortable, but not too bad.

The rest of the day and night lying flat, and not so much as raising my head, sucked; but again, tolerable. My head started to ache, as expected, but I had advil extra strength liqui-gels with me, and that lessened the intensity of it. I got nauseous, and eventually puked. I felt right better after that, though. The nurses gave me anti-nausea drugs after that, but I don't think it was necessary.

I slept well, eventually. I woke up, and the nurses eventually let me stand up and go to the bathroom (so much better than the bottle!!!), and I spent the rest of the time at the hospital sitting up, and reveling it, if I wasn't standing.

I was released later. They called me a cab, and I went back to my hotel.
Throughout the 18th, I kept taking advil every 4 hours (more than the bottle recommends in a day, technically). My neck was sore and stiff all day, and my headache never completely went away, but it was all tolerable with the advil.

The 19th my headache was gone. My neck was still sore, but less so. I only took advil once. I went to museums, and for walks, and out to dinner.

By today (the 20th) the only pain was in my neck, when I would duck in and out of the door of the rental car. Otherwise I was in perfect condition (or as perfect as I can be, with my MS symptoms).

Now, I am young (27) and my symptoms aren't serious yet; Dr. Slavin said I am his first MS patient with such minor symptoms and he's excited to see how that will turn out. Maybe that has something to do with why I had such an amazingly easy time. I was very lucky.

I am not comfortable talking about other people's side effects, but I will say that the other two who had the procedure done just before me, and with whom I shared a room, had a much harder time of things. They were both brave about it, but they were in more pain (as well as other side effects) and I expect it lasted longer.

For those who aren't familiar yet - there are no reliable results to be reported for 6 weeks at least.
I'll gladly answer any questions anyone has in the meantime, and in 6 weeks I'll start discussing changes.

EDIT: I can't believe that I didn't mention this before, but my parents were with me, and I am VERY grateful for their being there. Anyone who is going should ABSOLUTELY NOT go alone. I was trying to be factual, but I left out all the little things they did for me... Don't bring just anyone, either. Bring someone who you can be embarrassed in front of. At the very least for the day of the procedure itself you will need to forget your pride.
Last edited by ariehs on Mon Dec 21, 2009 3:16 am, edited 1 time in total.
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Postby LR1234 » Sun Dec 20, 2009 3:30 pm

Thanks for letting us know Ariehs, I look forward to hearing your updates
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Postby ikulo » Sun Dec 20, 2009 9:33 pm

Hey Ariehs, I am exactly your age and also have somewhat mild symptoms so far AND am awaiting an email from Orit for my infusion. I'm totally excited to see what happens, though of course there is a slight worry regarding the side effects -- but hoping it turns out well! Anyway, I wish you the best of luck with the recovery and healing. I'll let you know how my stemmies behave once I go back, which should be in the next 4 weeks or so.
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Postby Tony » Mon Dec 21, 2009 2:38 am

Hi Ariehs!

Thank you very much for your report, that's really interesting. I am currently informing me about such procedure in Israel. Could you please tell me the more severe side effects you are mentioning the others suffered from?

Thank you! Tony
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Postby ariehs » Mon Dec 21, 2009 3:07 am

As I understand it, there is little documented about side effects - wither from the procedure itself or the treatment.

The others in the room were experiencing pain, mostly. In the legs, in the torso, everywhere. I think the most common thing is the headache, and I had one that was as severe as any migraine I ever had and then some, but the advil softened it. I had some pain in my legs, but it wasn't worth mentioning. Like I said, I think I was extremely lucky.
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Postby ariehs » Mon Dec 21, 2009 3:17 am

I forgot to mention my parents. I added a paragraph to my original post, but I can't emphasize enough just how important it was that they were there.
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Postby Tony » Mon Dec 21, 2009 4:14 am

Thank you, Ariehs. I think as long as the side effects just go by, quite a lot is tolerable for the sake of a little improvement or stabilization of the disease. Please keep us posted how things are going on!

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Postby youbetcha » Sun Jan 10, 2010 6:03 pm

ariehs, thank you for sharing your experience. I too am waiting for an e-mail from Orit in regards to infusion date.

Keep us posted with any improvements! :D
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Postby ariehs » Sun Jan 10, 2010 9:46 pm

I'm updating now because there's relevant info, even though it has not been 6 weeks since I had the infusion yet.

After the infusion, I stopped taking LDNs. I hadn't noticed any changes at all because of them, and it seemed silly to keep taking them. The Dr who prescribed them said it was ok top try going off of them.
It took me a couple of weeks to realize that my legs had become far less reliable, and I was spasming more and more. When I finally put 2 and 2 together, I started taking the LDNs again. The spasming almost completely subsided, and my legs are as reliable as they were in Greece.

I guess I have to give the LDNs more credit than I was before. It will make judging the effects of the infusion a little harder, but so be it.
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Postby Iskierka » Mon Jan 25, 2010 4:06 am

Hi, can you telus how tou feel now, few monyhs arter procedure? I had CCSVI 1,5 monyh ago, but it didn't help me so...I am looking for other ttreatment.
I will be gratefull for fvfry information.
Take care!
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Postby ariehs » Mon Jan 25, 2010 6:02 am

I don't have a lot to say. I got very tired very early the last few days, but this past week was stressful enough that non-msers might have been just as tired. I started a new kickboxing class, and it's gone so well that I thought the stem cells must have helped, but my balance was off and my legs are weak and I don't really know how to measure this stuff.

I'll update if I know anything for sure, or after my next series of MRIs.
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Postby Iskierka » Mon Jan 25, 2010 11:43 am

It seems goo...can you tell me where did you do stem cells procedure and how much it was? Aaaa...how you are on EDSS scale?
Thanx.
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Postby ariehs » Mon Jan 25, 2010 12:59 pm

I don't have an EDSS score. I've not yet settled on a primary care physician.

The infusion was in Athens, because Dr. Slavin & his team aren't allowed to administer the infusion in Israel at the moment. It's a political thing. Dr. Slavin's clinic is in Tel Aviv, and he & his team do the bone marrow extraction at their clinic. 6 to 8 weeks later the infusion is in Athens.
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Postby Iskierka » Tue Jan 26, 2010 3:39 am

thanx for replay. I think about tretments for all the the time, and about stem cells procedure in Germany. Why did you do proderu in Greece, is there higher level of procedure? Maybe you have just closer?;). I come from Poland so Germany are easier for me. And I have one more question: how expensive it was? Let me know if you feel better.
Take care!
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Postby youbetcha » Wed Jan 27, 2010 2:34 pm

The cost of the procedure is $28,000.00 USD. At least that's what I paid for the procedure when I had aspiration done in December.
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