Wednesday, February 16, 2011

Plugged In!

Landing in N.Y

My CCSVI trip started on thursday February the 10th. The flight up to Albany NY seemed quick. I was anxious to get up there and get checked in. We decided to stay at the Hilton Garden Inn Albany Medical Center. It's attached to the hospital by a glass walkway which leads directly to outpatient check in. A brief walk through some double doors, a left, a right and you are at the elevator to radiology. Max maybe a block from my room. 

Albany Medical Center and the hotel.

The night went pretty quick, however every minute that went by the more nervous I got. Keep your expectations in check, Dave, not too high, not too low. Everyone wants to have all their symptoms gone. You want to expect that to happen. You want to start thinking and planning. I forced myself to stay grounded, limiting what I expected, remembering in the back of my mind there is NO Plan B.

Hotel Room

  I woke up early. I have to tell you this hotel has the worst clock ever made. It was 2 hours and 10 minutes off, and after 4 of us looked at it, no one could figure out how to change the time. Guess what, you can't. Anne called the desk and without a Phillips head screw driver it's not happening. Fortunately no alarm clock needed. OK, clock rant over. Took a shower and was ready ohhh about an hour and a half early.

Finally it was time to go. My nerves were up there but little did I know I was heading to a new level of nervousness. A place I had never been before. This is it! 7 months of waiting, planning and preparation all down to the next 4 or 5 hours. My life may or not be changing. My wife's life, my family's, friends'. My head started swirling with all the best and worse case scenarios. Dave snap to it, move ahead. I was not at all prepared for what I was going to be going through. 

Check in was quick and easy. Then wait to be called. Ahhh the waiting...what's a little more after all this time. Then there it was....Dave... Time to go, off to prep and get my stylish gown. The nurses immediately started busting on me. We need to exchange that gown for a longer one. When they held it up against me and measured it, it didn't cover much below the waist. Definitely need a longer one. 6'4" has its drawback. So off with the clothes and into the gown. IV plugged in, blood pressure (surprisingly decent), questions about eating and then the Quality of Life questionnaire. it all done. OK they will be here soon....enter nerves and I mean nerves. All your thoughts are amplified by 100. It seemed I was quiet a bit of the time. Thinking, worrying, hoping, scared, excited, all those feelings were swirling around.

Finally after about 20 minutes the (what I will call) anesthesiologist came to pick me up. Not really sure of her title as she seemed to be a jack of all trades once we got in the room.  After a warning on how cold the room was, off we went. Once inside I had to hop over to the main table. Again with the tall jokes. Should we leave his head or his feet off the end of the table? They added some attachments to the tables to put my arms in. On went the blood pressure monitor, electrodes on my chest and above my groin, and then...the drugs started. Only thing left for prep was the "groin". I have to say this really is no big deal, even less of a deal once the drugs start hitting you. I would however like to suggest they actually shave where they are going to going in. In my case they shaved me for no reason. Then came one of the worse parts for me. Straps...across the legs, across the upper body. I felt like Boris Karloff back in the day. Being tied to the table was unsettling. Some final balancing of the drugs and I was set to go. I was talking a mile a minute. They asked questions and I kept on rambling. This part lasted about 5 or 10 minutes. Then I was told I needed to be Shut it so we can work, please.

You may feel a small pinch in your was very small actually, hardly noticed. I guess the other meds had me in a state where the local for the catheter was nothing. From that point on I didn't feel a thing. No pain, no pressure, nothing. The monitors were up and running and time seemed to fly by. People working, talking and I was asked to breathe certain ways at times and that was about it. I remember having to move or arch a certain way as well. Seems that just as things got going it was over. Now, I was in there for a about an hour and a forty five minutes. So don't get the idea it was a 5 minute procedure. Everything got unhooked, pressure on the groin area where they went in. One of my bigger concerns was bleeding from the groin after, but it was never an issue. Back in the recovery area the drugs started wearing off almost immediately. It was slow but noticeable. Anne said I was a little dreamy. 

Dr. Siskin with me 2 hours post procedure.

Recovery was pretty basic. One hour laying down followed by one hour sitting up, with the nurse checking for bleeding every 15 minutes. Then eating, was ummm, well, terrible. Ate what I thought I had to, to get out of there and that was it. Dr. Siskin came in, we talked briefly about the procedure and that was it. Get dressed you are all set to go.

So what did Dr Siskin find and what was treated. Both jugulars were blocked, the right worse than the left. The azygous vein was fine. I'm sorry I don't have the percentages, I forgot to ask. I should have all the records and reports next week. I have to take one 325mg aspirin for the next 3 months. Tylenol was recommended for any discomfort. The night of treatment my groin and my neck (on both sides) were sore. Other than that I was in good shape.

At the recovery area I decided for that day and night I didn't really want to evaluate myself a lot. I was told right away the grey complexion I had was gone. My head seemed clear but as you can imagine I was a bit tired. Not fatigued but tired. My thoughts seemed to flow well. There was no searching for words or pausing to think before talking. We went out to eat at the hotel and it was smooth sailing. Yes..I admit it.....I HAD was damn good too.

The morning after was amazing from the start. Because of the intense day we went to bed fairly early. I woke up at 5am. To say I was different would be an understatement. I pushed Anne... I am wide awake... I can't sit still... I'm getting up. I was bursting with energy. I was plugged in to the world again. Charged with life. All these thoughts raced around. We need to do this, call him, go here. It was an unbelievable change from just 24 hours ago.  Needless to say I had plenty of time to get ready for my follow up ultrasound at 10. What a great day.

The follow up ultrasound was the same as the original. No change, all the measurements sitting up and then laying down. I guess this will now be the stressful part of things. Has there been a change? Has anything closed up. I will say this, if things do take a turn, I will be right back on the table. There is no debating that.

I spoke with a friend back in North Carolina over the phone and he commented that he could tell just by my speech that things had changed for me. Amazing what others are picking up that I don't even see.

Heading up to the Adirondacks

The rest of the day was breakfast out, shopping and running around a bit. Not too much sitting until the afternoon. All in all it was a mistake to walk so much. I was feeling so good I didn't really pay attention to things and by 1-2 my groin started to flare up and get sore. My neck discomfort was not too bad.  Anne and I decided to drive another 60 miles north to see some friends and stay over night. Back up into the Adirondack mountains where we use to live. Always nice to go back up there. The Adirondacks are special. There were a few things I had completely forgotten. Like the pot holes and heaving roads in the winter. What a mess. I was pretty uncomfortable with soreness, but I kept up all day. While tired from everything, it was not fatigue tired and my head was clear. 

The next morning I awoke, bright eyed, thinking, and once again no running to the coffee pot to try and wake up. I was plugged in from the start. The morning went great and we decided to head out for breakfast. Shower, change of clothes etc. As I got ready something very strange happened. I was standing there brushing my teeth thinking, this is fun... brushing my teeth is FUN! It's hard to explain but things like this were such an effort and such a drain for me. Anne must have thought I was nuts running out of the bathroom talking about how great it was brushing my teeth. We had another great day with friends. The rest of the time in NY was much of the same, but I can't say this enough: I was plugged in with a CLEAR head.

Now that I am home I am sure I will pick up on all sorts of "toothbrush moments" and I can't wait to feel and see it all.  

The one thing I haven't mentioned in this recap is my optic neuritis. It appears to me that I am regaining a bit of vision. The distances I was having focus issues with have become fewer. I don't have that tired eye anymore. Maybe this is something that will take some time. I can tell you this however, after three years of severe heat intolerance I went in the jacuzzi tub today. I soaked in the heat and epsom salts. No ill effects, no eye issues, no fatigue, nothing but the enjoyment of the jacuzzi. I can't wait for what's next and where tomorrow leads me.

Please, if you have MS take a serious look at CCSVI. Get tested and get treated. It will be the best thing you have ever done to help yourself.

Tuesday, February 15, 2011

Quick update

Hello all just wanted to let everyone know I made it back from NY. I am doing really good and keep seeing little things everyday...:D. I started writing my entire story up on the plane ride back yesterday. It appears I may have to have to make a shortened version for those of you that don't want to read all the details on my trip. My NY story is already quite long and I have barely begun.... I hope to have it up in the next couple days complete with pictures.

Best to everyone and thanks for all the responses and support along the way. I can't tell you how BIG you all have been in my story.

I have lots to tell everyone. Truly a life changing trip. 

Sunday, February 13, 2011

Day 2

Feeling very awake and clear this am. Even with only 6 or so hours of sleep. My thoughts are clear. The haze, clouds and fog are gone. It seems so long ago. I can't express how nice it is to wake up and not have to fight my way into an alert thinking existence.

Now the bad. About halfway through yesterday soreness has become an issue. My neck is a bit sore but is getting better and better. My groin however is really sore and got worse as the day went on. Now I was pretty active and did a lot of walking but I had pretty bad soreness in my upper right thigh and right groin by 6pm or so. Unfortunately it's still around this am. Although I have no limitations I think less activity today would be wise.

I will keep you updated as things go with the "complete story" once I get back home.

Thanks for all the emails and FB comments. It's great to hear from you all. More soon, I can't tell you how great this is!

Saturday, February 12, 2011


Well, here I sit at 6:15 am the day after. To say I feel different would be an understatement. I am wide awake, fogless, and not running for coffee to try and wake up.

I will write up an entire recap of yesterday's procedure and how it all went for me. I remember everything from the treatment! It was a great day and things have definately changed for the better for me. I decided yesterday afternoon to wait until today to try and evaluate myself and what I am feeling. I didn't think yesterday with all that happened would be a fair comparison for me. I can tell you this I wasn't tired going our for dinner last night. Even after such a long day.

I feel great this am. Kinda bursting with energy. My thoughts are going a mile a minute.

In closing up this update. I urge EVERYONE I know and everyone that has MS to get tested today and get treated for CCSVI. It will be the best thing you have done to help yourself.

I have tons to talk about and tell you all, more soon.

Friday, February 11, 2011

CCSVI Treatment Day

Arrived to snowy cold NY on Thursday afternoon. Trip was fine but tiring. Checked in at the Albany Medical Hilton. Very nice hotel and connects directly with the hospital.

It's the morning of my procedure and I am hours away. I thought I would rate all my systems on a scale 1-10. 10 being the most severe. This will give me a base line for comparison after treatment.So here they are based on the last month or so.

-fatigue 8 by far my worst symptom
-heat intolerance 7
-cognitive issues 5
-optic neuritis 3
(always there, eyesite fluctuates, has been a 10)
-leg cramping 2 hasn't been bad in awhile
-leg soreness 4
-numbness 2
-shooting pain 3 minor, haven't had a severe issue in months

Well that's the major list as of today. I am out for now and off to get ready.

Tuesday, February 1, 2011

9 Days!

Well I met with my neuro yesterday and got some blood tests back. Sticking with the plan and getting visits to everyone prior to treatment!!!! I want base line with everyone.
I am not sure why but today a light bulb went off in my head. A few of you probably already had these thoughts. Neuros treating MS patients are really only a monitoring station/service. They can prescribe the "drugs", the pain pills, the depression pills, sleep aids, etc. etc and after that…there really is nothing. They can do more tests. They can see if things have changed. They can poke and prod you. Then, frankly after that there is absolutely nothing they can do…..They can say, “Keep your chin up, buckaroo” or “Let’s try a new drug” (if you take them)…..but in the end….there you are…nothing…..ZIP. 
Off my soap box and back to my appointment. Overall it went very well. My blood tests were great except my B12 1900 is in the stratosphere. After that I listened to the "drugs" talk again. The "drug" conversation, which in no way was over bearing or anything, went pretty smooth and we moved on. Reviewed my changes in symptoms, talked about sleep apnea (creeping into my life), and of course had what I will call a weak neuro exam. As an example and I will leave this alone I didn't have to walk, take an eye test, or take my shoes off. Then the 800 pound gorilla came in the room.. I asked about his thoughts on CCSVI and guess what. What is that….:(? We then discussed it for a bit. We discussed the trials going on. He asked if I had tried getting into them. Of course I replied yes in fact I have and was denied. Then the next bomb..tic..toc… I am going for the treatment on the 11th!
To me and my wife's surprise this is where things took a great turn. My neuro said 3 HUGE things to us. One, I am not against learning from my patients, two if the interventional radiologist in NY needs any test done please let me know and three he would talk with some local IRs about CCSVI and see what they may or may not be doing. KUDOS!  Then there was me and he wanted to be in the loop on what happens. I got his email address and will be forwarding him some information on CCSVI some testimonials and my information so far. This part could not have gone better for us.
So to close this out it was a worthwhile trip to the neuro.  I now have a neurological resource willing to learn and grow along with me as I go on with my MS. Good stuff.
9 days……