Where do you see the water level at this point?
My friend Sandi sent me an Email the other day. She wanted to know more about things, how I was doing, cost for CCSVI. She told me she was trying to make a wise decsion. Soooo……it got me thinking…….
“Do I give people the wrong impression that things are better than they really are????”
I Dun-no???
I hope not…… I still hve MS…… I still walk funny.
So I wrote Sandy back……just to tell her I’m feeling good and happy.
****************************************************************************
Hi Sandi,
I have not spoke to anyone from Israel for some time. I will forward you my last email exchange w/ them.
I paid $10,500 for CCSVI at Pacific Interventionist.
($2500.00 – MRV/ $8000.00 CCSVI procedure)
Dr Arata. performed the procedure. I explained in this last update why I chose him over the Hubbard foundation. I am now in the process of billing my own insurance myself. Dr. Arata provided me with a procedure synopsis and the appropriate insurance codes on the invoice. Were still working on the Letter of Medical Necessity. I may just turn in what I have now and see if they will require the LOMN later.
His protocol attacks the valves that interconnect the veins. He does a little more than just balloon your veins. The “valve” is where CCSVI derives from.
Fix the valve…..and the possibility of re-stenosis is greatly decreased.
Two weeks out from CCSVI now and I’m feeling good. My “Lokomat” workout this morning was my best yet……although when I am tired……the communication to my legs is just not there. That’s MS and I know that.
CCSVI has helped me recover from these hard workouts more quickly. I’m also seeing improvement w/ heat sensitivity.
I’m a glass half full sort of guy and I hope that I have not given people the wrong impression of the severity of my improvements.
I have always remained consistent in the fact…that….these procedures are not a cure for MS……but just things that have made my quality of life much better and enabled me to keep working and providing for the family.
The last I spoke with Isreal….they were fooling around with liposuction and working on a new patent for their “Improved” ASC/MSC protocol.
CCSVI has given me a little more life here…….I’m going to see how much it will give me over the summer………then, I may think about giving Slavin a call and seeing what is the latest with Stem Cell. I still believe that Stem cell is the key to Meylin repair that every MS patient needs.
Ever since my stem cell (Sept 2009), I have been stable, happy and working a ton. I think MSC did give me greater Neural communication. It’s been awhile and I still seem to be making small strides in the gym so I’m hopefull for the future and am also broke again from CCSVI costs.
Stable for me is a win.
Is it CCSVI, MSC, Tysabri or a combination of all three????….
I don’t know…but I feel good, am working/providing,happy…and that is just where I am right now.
Your proaction is what makes you wise Sandi. And my repsect to you for your continued fight with the MonSter.
My prayers back at/with you.
Be Well,
Todd
June 17, 2011 at 7:12 am
Todd,
We are in the same boat. I am 42 years old with amazing wife and two small boys. live in Portland, Oregon. I was an athlete growing up and was diagnosed 1/2010. I can relate to everything on your thread. I am a physician and have done quite a bit of research on various off the american radar treatment modalities. I have been talking with Slavin about several things and will be heading over in late summer. I would be more than happy to discuss in detail what I have found in this crazy web and what my plans are going to be to halt this nasty disease in its tracks. my email is chadpfefer@yahoo.com.
I would be more than happy to share what I have found in my quest to halt this thing.
June 20, 2011 at 3:59 am
Hey Chad,
Nice to meet you. Glad your fighting “the fight”. Sorry it took a few days to get you up here but I’ve have just been swamped with finacial stuff and have not been writing at all. I need to update and tell people all is well. Happy father’s day….(belated). I had the weekend off. It is the only two days I will have off in the month of June.
Gotta build those planes…..and gotta pay those huge medical bills…..MS can get spendy and if you want to fight……sometimes you have to pay to get in “the ring”. If you’ve been talking to Slavin….then you know. I still think it was money well spent for me.
I’ll send you an email and well talk of your latest.
Be Well
Todd
July 6, 2011 at 12:30 pm
Todd, We’ve been following your progress. Thanks to all your hard work my husband has the Bioness L300, is on Tysabri, and Ampyra. He hasn’t had any new lesions since starting Ty (goes in for #49 this month) but his walking is worse.
He’s making the appointment for CCSVI in Seattle, he just can’t travel far at all and Seattle is closest to us. We’re not going to tell his Neuro because he fights all treatments that are new. He hated the fact that my husband wanted Tysabri but took credit for good results when talking with the Tysabri rep. Ampyra was a real fight but he finally prescribed it. We’ll let him know after the procedure is done.
Sorry your Huskies didn’t do well this year but our Ducks, as good as they are, (football that is) seem to always get in trouble.
Take care and keep the updates coming.
Dennis and Vicki
September 2, 2011 at 9:29 am
Hey Todd, I have looked for you on sites you posted on some time back, to no avail. I recently found your blog info and here I am.
Bless you!
I am glad you are doing well
I am still on Tysabri, 5 years this month and Ampyra, 4 years next month (including Fampridine trial). Thank G-d, doing well!! I now go to the Rocky Mountain ms Center in Aurora, CO. Moved here when (not so blessed like you) husband of almost 28 years, decided he didn’t want to be married any more … Oh well, it has turned out to be for the best for me. I am more independent and making a good life for me.
We have both been proactive on our journey which has improved out QOL! YAY!!
Keep up doing well
Linda (lindaincolorado)
September 2, 2011 at 10:09 am
Ms., Great to hear from you. yes I have been very busy. I have worked 37 out of the last 38 days. Feeling good and trying to keep the family in the American dream house alive. CCSVI Really gave me a boost back in February when I had the procedure done. Heat intolerance is much better walking still sucks. I am sorry to hear about that marriage thing but you Are a fighter and do not need baggage in your life Weighing you down. It’s tough when you look back but when you look forward, MS has this silly little way of bringing out the great in people. As I am sure it has brought out a better understanding part of you.
Great to hear from you and be well. Todd.