Wednesday, May 26, 2010

The next step

So I posted an intro and followed it with where I am right now with my M.S..

When I finished my intro I had said it was onto looking for someone to do the CCSVI procedure on me. Well I'm continuing from there.

So I was lucky, no blessed to find Diana Gordon to get me into Dr. McDonald's clinic for testing. After this I signed myself up for Poland, it took forever to get a response and when I did I was told I was on a waitlist for 2011 sometime. YIKES! Who knows what decline I'd have between that time to when they could fit me in?

Only a few months ago I stopped taking Tysabri. Over the 6 months prior at least I had been feeling very weak and I figured it was just very slow MS decline but then I found out I had a sinus infection. I felt a bit better than I had in ages when that was relieved but it wasn't completely relieved and next I had a chest/lung infection - scary as hell! A known possible side effect of taking Tysabri and one they take very seriously. I contacted my neuro after seeing my G.P. and deciding with her that I needed to take a break from the med to get my immune system back! His response was that it's be "okay" to take a break not that I needed to though... PFFFTTTTTT! Yeah um I needed to!

Since then I have felt better than I have since before that 6 months of decline feeling. feel stronger and more get up and go. I don't worry about PML any longer and quite honestly I'm done with Tysabri. I'd do it again if I were starting from scratch but over the 2 year mark is very, very scary!

So anyhow I was left with 2011 in Poland with Dr. Simka and Ludyga sometime. Better than never and it would give me time to get the money together. I also contacted a medical tourism site and another Polish site which I heard back from the latter recently and it said I could be "Liberated" in 4 months basically. I never heard back from the medical tourism site...

While I was searching a new friend on facebook had gotten into a Dr. in Albany only to be let down. This Dr. cancelled all his appointments with no explanation whatsoever. She was heartbroken and made a youtube video that brought me near to tears. I told her something would happen, she would be liberated! The whole thing lit a fire under that gals butt because she went full force finding all the FSIR's she could in the U.S. sending them letters with her scans and by golly she got multiple positive responses! She went with a lovely doctor who had her in I think if Ir emember correctly within 2 weeks! Next thing we knew it she was doing pre-liberation youtube videos and letting everyone know how to find FSIR's for themselves, even sharing her letter and telling people they could use it!

Soon enough her date came and within 24 hours she was back on youtube with her post procedure video. The difference was so obvious and appeared miraculous. A laboured, unsteady walk turned into your regular everyday walk with seemingly no effort! I think about a day later she brought us yet another wonderful video. Being spotted by her daughter she jumped, Denise Manley jumped! She jumped like a little girl! It had me grinning ear to ear and tears of joy were hard to cage!

Next thing I knew Denise messaged me and told me her doctor wanted me to call. I was floored and flummoxed, it was like a dream. What's more she said he was doing it for next to nothing (considering American healthcare costs for such things), she estimated $5000 USD. My husband was in his office next to our room and I called out for him to come. I couldn't yell to him the whole thing and I needed him close as I asked... can we do this? The man of my dreams, my one and only true love told me YES!!

It was a Saturday and I thought oh gosh does he take weekend calls?? I sent a message to Denise to ask but couldn't wait for her reply I was on the phone and leaving my info. I sat on pins and needles from then on.

The next weekend was my sons birthday party and I needed to get some last minute things at the store. As I scootered around my phone rang... an unusual number with an unrecognizeable area code. Could it be? It was only the Monday after my call... IT WAS! It was the doctor himself and he told me he was hoping to have me in in June. I was so elated! he was expecting tears and I told him I had had my ugly cry with my husband on the Saturday when I'd been told he wanted me to call. Anyhow all was underway.

Now because my friends and I have seen multiple closings of places offering this I didn't go canceling my other possible appointments, after-all perhaps he'd be shut down or choose to stop for some unknown reason :/

Now my date is June 7th, time for the procedure is 1 PM, time to be there to get my sedative and set up is an hr and fifteen prior. So at 11:45 I will be there getting ready to go.

This doctor wants to only do angioplasty unless completely necessary which I am good with. I am concerned about restenosis who wouldn't be but I don't want him to be too lax and I restenose quickly because the vein(s) just don't want to stay open long enough.

The sedative will be about $12 USD, the venogram $3000 USD, venoplasty $2000 USD, stenting if required another $2000 USD and I believe that's per stent. The hotel is about $500 USD - I booked it from the night before and then for 2-3 days after the procedure because this doc wants to make sure all is alright over those first few days :)

So now I'm counting down the days - it feels like it's tomorrow and yet it feels forever and ever away. Also I'm battling with my hopes for this to bring things back. I don't want to have my expectations too high only to have them trampled, however at the same time my mind can't help daydreaming about having abilities back. I dream about being able to dance with my son :o)

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