Saturday, December 4, 2010

N.Y. Trip.....the good ..the bad...and the ugly...

River feeding the lake. Man I miss the water.

Well I am back at the homestead. Tired, getting organized and catching up. Finally I have been able to sit down and put my thoughts down on my trip to N.Y.

As most of you know I left on Saturday the 27th. We left a few days early (appointments weren't until Tuesday). I really wasn't sure how I would do traveling in the car for 11 hours, no less driving parts of it. The drive up went really well. I was able to stay focused and get in about 5 hours of driving time. We switched over and I really felt pretty good so we decided to keep on going. With the excitement of seeing Dr. Siskin, my family and all our old friends I was pretty amped up. The weather was clear until we got to Oneonta. N.Y, where we were welcomed back with snow, white-outs and crazy ass truck drivers. Nothing like the Northeast in winter! Oh, and CPK, Jersey was no better…:P

We made it to Wells N.Y in pretty good time considering the snow we went through. 
Yeah, snow...ughh.

The lake.
Coffee shop at Dr. Siskins
It was great to meet up with Mark and Pat and cruise around the old home area. It's amazing the simple things you never think about once you are away. We really miss the lake and the water. I was a bit surprised at how flat things seemed in the Adirondacks. There is nothing like hanging out with old friends for a few days, catching up, laughing our asses off and having a blast. Special note: Jack, thanks for not chewing may arm off…lol (Mark and Pat's dog).

On Monday we headed down toward Albany and get ready for my appointments. We met with Barbara to go over the paperwork and get the details of the research trial. Dot the Is, so to speak. The facility was amazing and Barbara was very nice, funny and extremely helpful. Next was the ultrasound. The technician was from my mother and father's old stomping grounds, so conversation was easy. I appreciated her heating up the gel :). Of course she was not allowed to say anything about the test. This was the first of 3 areas I could have been excluded from the trial. If the test didn't show anything I was out, which makes sense. No problem, nothing to fix. This is where the nerves seriously started to creep in and my blood pressure went up. Once I finished, we met Dr. Siskin. 

Dr. Siskin was, well awesome. Very easy to talk to and very down to earth. We went over my positive test, yes, positive! I will be making another post(s) later about what we learned here. We went over everything he saw from the test and discussed ultrasounds in general. Personally, I am not a huge fan of this as a test for CCSVI as its not as conclusive as I would like to see. Venograms are the way to go. Dr. Siskin agreed to advance me to the next stage (the neurologist). Two down and one to go.

One last appointment, here come the nerves. I forgot about the traffic during rush hour on the Northway in NY. What a joy to have to deal with. Thank goodness it's not a daily event anymore. We arrived at Albany Med and to my surprise, valet parking at neurosciences is FREE! WHAT? Of course you have to tip them, it's only nice. Check in at the desk… I am sorry I don't see you on the list of appointments…do you have paperwork showing your appointment? Showed the paperwork, a phone call and all was fixed. A bit of a wait. After meeting the neuro I learned that she knew she would be late and tried to get a hold of us. I am not sure how they didn't as everyone had our cells and we rolled over our house nubbier to my wife's cell. The neuro was, well very neuro like (not is a good way). Not very personable, not wanting to answer questions and seemed to concentrate only on what she needed to do to get through what she had to, to satisfy the trial paperwork. She reminded me a lot of the head of neurology at Baptist here in NC, here is your number. After going through everything… I did not meet the necessary requirements to participate in the research trial… WTF…after all this.

To say I was disappointed, mad, and disgusted is an understatement. All this effort, time, travel, expense, and it was over just like that…

I realize the requirements are what they are and they are there for a reason. I didn't want any changes to be made or anything to be manipulated. But shiz what a back breaker at the eleventh hour.

So now what, where am I , what does this leave me? What do I do now? Well, it's a simple answer actually. We spoke with Barbara and she assured us I am still on the waiting list with Dr. Siskin for treatment. I now know I have a problem of some kind that can most likely be addressed by the surgery. So I regroup, gather myself up and hope everyone can put up with a little anger and disgust for the next couple weeks (Sorry Anne….love you). Back to waiting on the phone and raising a bit more money. Now I definitely will be going the original route, having to pay for everything.

I want to thank everyone for their support and all the helpful conversations. My road is by no means over. We just have to take another turn.

More soon…..