Thursday, November 3, 2011

Helping others with MS.


I know I mentioned on FB what I would be writing about this time but I have changed things up a bit.

I have had a lot of things running through my mind these past few weeks. I have been contacted by a few people about MS/CCSVI recently. Every time I hear someones story, I reflect on things, my life, what's happened to me and prepare to write back. It always seems new to some extent, a bit different. Everyones journey with MS is different and so personal. What we hear, read, learn, share is amazingly different yet similar. It's very important for people who are new to MS to reach out to others who have gone through what they are now taking on. It's also important for those in the journey to help others. One person wrote to me "It gives us some hope that he can live a somewhat normal life." There is hope, a lot of it! I along with many others are better now then we were even prior to our MS. I can't stress this enough talk to people, help them, support them, teach them, but never judge them on their journey. Everyones choices about MS need to be respected.

So, here I am November 3rd 2011 coming up on my 9 month post op from CCSVI. My life has changed so much I can't even find the words. As some of you know I have been struggling lately (with my thoughts) over my MS diagnosis,  CCSVI and how it relates. Do I still have MS, did I really have MS, what's MS have in store for me in the future. That is going to one heck of a future blog entry. A short 9 months ago I would never be doing what I am today. My wife and I took a trip to Big South Fork two weeks ago (wouldn't have done this). Two hour horseback trail ride (years and yes my ass We had so a great time and loved the place so much we are picking up and moving out there as soon as we can. Life is to short to sit by and watch it. I have done enough of that. The really huge part of this is…..I am doing it..I am packing things up…I am planning….I am sorting through things that need to be done…I am doing it. Not watching, not trying to gather my thoughts, not fighting off aches and pains, not taking nap, not laying in bed…I am doing it. Awesome…… I will keep you all up-to-date as the move gets done...LOTS going on there.

In closing this quick update I wanted to pass this along. Everyone who contacts me asks similar things about CCSVI. When should I look at it, should I wait, whats the best time to get tested, am I sick enough, are these symptoms similar? The answer to all these questions is simple. If you are asking about it do it yesterday, waiting serves you no purpose. Find an Interventional Radiologists learn about CCSVI, get tested, and get treated. If you need help, information, or just want to talk please get in touch with me. I would be glad to answer any questions or get you any information I can. 

PS: I haven't forgotten. Once the move is over I am going to take on writing the "Do I still have MS?" update. It may be a long ramble but it will be coming, promise.

Best to everyone!

Monday, September 12, 2011

Reflections 7 months post CCSVI.

Chill'n Monkey.

WOW! 7 months since my surgery, my how time goes by. I remember the trip to NY like it was yesterday. I remember all the worries, the crazy ideas that kept running through my head. Was this the thing to do, is it really safe, what if this does nothing, what if this makes be worse, what if I become a burden on my wife and family…what if…..

Here I sit Monday September 12th after the 10 year anniversary of Sept 11th in reflection. I wake up, I think of Anne, I think of work, I think of my family, what's the weather? I get up let the dogs out, feed them, wrestle around a bit. Turn on the coffee machine, hmm…walking this am?…plug the iPhone in to charge, and pour myself a cup of coffee. Before I head off on my 5 mile walk I sit down to read over my Facebook…..wait a minute…..not one thought..nothing…. As I read through my Facebook, blogs and check the forums I frequent MS comes up, I have thoughts, feelings, comments and give some some feedback but things have changed….my how things have changed.

7 Months ago everyday I would wake up and the first thing I would do is look at the ceiling fan as I woke up to see how my eye was acting that am. Any blind spots? How is the Optic neuritis vision today? Next a self check of my body…what hurts..anything sore….how is my energy? OK sit up and get your bearings and try to get moving….ughh….did I even sleep doesn't feel like it. Then my thoughts would turn to Anne and trying to remember what I have to get done for the day? I better get it done early as I might not make it to lunch....stand we go..

I know I have told everyone within my reach to please look into CCSVI, your diet, what your nutritional balance is. Look at your vitamin D levels and your B12 get those levels where they belong. But truth be told my CCSVI surgery has not only changed my life with MS but dare I say a rarely think of MS when it comes to me. In truth, I don't think I have in months. Now don't think for one second I don't remember it all or the burdens that I had. I am free of the fatigue, the cognitive issues, the heat,  and the rest of "that" list.... all that matters is it's GONE! I have my occasional eye flare up but I was noticing just Friday that I believe my vision has even taken another step for the better. 

Please for your sake get tested. Take a hard look in the mirror, your life might be the next one to change.

Wednesday, August 10, 2011

23 days...17 lbs and 7% body fat later......

3 Mile walk on the weekend.

OK, I haven't been able to write this the last 2 weeks or so but I sat down this am and got it done. No more "teasing" about my weight loss!

After my CCSVI surgery in February my body started to change and adjust to the new open blood flow. We're not sure if it is a direct correlation to that, but soon after I developed hives.
My GP prescribed steroids and other medications, but when all of that was not successful the conclusion was "things should get better in a year or so". Hard to believe, but the hives cause skin and heat sensitivity that keep me nearly as housebound as MS did. It was time to take things into my own hands.

I decided to go back to what has always worked best for me - nutrition. Post-treatment I had been feeling so much better I slipped a bit off the Swank diet. Not a big surprise I suppose, but not something I'm proud of either. I considered returning to Swank but decided that a nutritional cleanse approach would likely be the most help for hives.  Through research and talking to friends and family I came across what sounded like a possible solution, Isagenix. 

The Isagenix system looked very promising. It is a high quality, all natural (and gluten free) line of products designed for nutritional cleansing and rejuvenation. Their synergistically designed program cleanses the vital organs without being invasive or depleting. They offer a ton of products and options to get you started toward a healthy balance, so many products it was a bit overwhelming at first. So my wife and I decided to try the 30-Day system which contains a good mix of products. 

We like Isagenix because it is not a diet or a fast. It is an enzyme transport system that facilitates nutrient delivery, digestion and absorption of 242 carefully selected nutrients. 

The Isagenix products are made with organic herbs, high quality vitamins and a uniquely processed mineral blend. Nutritional cleansing increases the health benefits you’ll receive from the ancient health practice of cleansing. The herbs, vitamins and minerals that aid cleansing do two things:

* Accelerate the removal of impurities from the body (.
* Nourish the body with vital nutrients to rapidly revive health.

A cleansed and revitalized body is stronger, resists illness better, is more efficient and performs at a higher level than one that is filled with impurities. 

My review after 23 days is nothing short of outstanding. It was easy to familiarize myself with the program and plan my meals. I found a really handy app for the iPhone that tracks everything, called MyNetDiary (also available for Android). I weighed in, recorded my measurements and began my journey. I was surprised to find I am not hungry on this plan! Within a week I started to notice subtle changes in the hives. They weren't gone but the outbreaks were becoming fewer and less intense.  I felt better enough that I wanted to take a walk, which I hadn't been able to do in a while. It was great being outdoors again. I noticed I had a lot more energy. A bonus side effect came when I weighed myself at the end of the first week and found I had lost 10 pounds! Now 23 days in, I am down 17lbs and 7% body fat. I continue to have plenty of energy and am increasing my walking time every day. My wife has noticed diminished back pain, increased energy, and she lost 8 pounds. Bottom-line we feel awesome. Isagenix really works.

I can't encourage you enough to give this a month and see if it helps you. There are so many benefits! If you have any questions about Isagenix or want to get started on a program email me here or call my cell if you have the number. I am able to get you in at wholesale prices. I also want to stress that to get results, you need to stay on the program. You can't expect anything to help you if you don't stick to it. I will keep you updated on my progress as I continue. I will be going right into another 30 day after I finish this one. Can't wait to see how things go next month!

More soon as always.

On Facebook here.

Tuesday, June 21, 2011

Tysabri vs CCSVI benefits, dangers, risks

In talking with several friends the past few weeks I have to bring up something, Tysabri vs CCSVI benefits, dangers, risks and what will help us best. My thoughts are as follows.

We all must decide as we sit staring as this disease and suffering from a multitude of issues what benefits we could gain if any from using any drug or other treatment. We are all faced with a terrible progressive disease. Will a drug cure me…….that answer is no. There is no cure for MS. Different drugs offer different options and do different things. Please do YOUR OWN research before blindly relying on your neuro to make the call. Be an informed MS patient and rely on yourself first to make these BIG decisions. Neuro's don't think like you nor should they make decisions for you. Sadly they are not always right and they don't always have your best interest at heart (I won't go into all that now).

Lets take Tysabri as example 1. One of if not the number one prescribed MS drugs. Tysabri basically blocks "errant" white blood cells. This drug is targeted toward patients with highly aggressive forms of the disease. The theory behind Tysabri is that MS an "autoimmune" disease attacks its own white blood cells. This causes diminution of the protective sheath that covers the nerves. This complicates communication between the brain and the rest of the body. This in turn brings on all the symptoms related to MS (muscle spasms, stiffness, fatigue and memory and concentration issues etc. etc.). The simplest, basic explanation I have seen of Tysabri is that is keeps white blood cells out of the brain. The key thing is that reduces your probability of additional exacerbations. Has this drug helped people? The answer to this appears to be yes it has helped some people. Dangers are possible development of a brain infection called progressive multifocal leukoencephalopathy or PML. To date 124 people have died from the complication.

CCSVI as example 2. CCSVI stands for “Chronic Cerebrospinal Venous Insufficiency,” a condition where people have obstructed blood flow in the veins that drain the central nervous system (the brain and spinal cord). Research indicates that CCSVI is significantly correlated with multiple sclerosis. As a result of these venous abnormalities, the blood flow rate through the central nervous system back toward the heart may become slowed, and blood may reflux back toward the brain and spine. CCSVI treatment is a non-operative, minimally invasive intervention usually performed as part of a catheter-basedendovascular procedure. CCSVI treatment employs either balloon angioplasty and/or stent placement to open or clear obstructions from the veins that drain the brain and spinal cord. Again I encourage you to Please do YOUR OWN research on CCSVI. Personally I have had a GREAT breakthrough with my MS having been treated for CCSVI. This doesn't work for everyone but does help a very high percentage of people. While the research is still being done, the help to MS patients is far better then anything currently being offered. The dangers to the CCSVI treatment and the angioplasty. Basically all the dangers involved with standard angioplasty apply. There is a possibility of restenoses on the veins (closing back up). 2 deaths have been tied to the angioplasty procedures I am aware of for CCSVI. One was a stent migration issue (can happen in angioplasty) and the other was a cerebral hemorrhage (can't be clearly linked to CCSVI).

All the complications, dangers and the 124 deaths vs 2 has to make you stop and think. What are the neuro's afraid of? I obviously have my own thoughts on what a person should or should not do based on my experience and what has happened to me. 

The bottom-line to all this is please look at the facts and do your own research. There is no right or wrong answer. MS is personal and different for everyone. The answer is what you feel is best for you after you get educated on the facts. It's not what others think is best for you. 

YOU DECIDE how to deal with YOUR MS.

Friday, June 10, 2011

We are you + MS

Great letter I came across this am. (Original post)

We are your parents, your children, your brothers and sisters; we are the person down the street; we are that lady or fellow who may walk a little 'funny' at the grocery store. We are the people that you "tsk, tsk" over because we might look "too good" to use a handicapped parking space. We are the folks who may not be able to get out...... to the Church or Temple every weekend; we are your peers; we are human beings.

We are the face of Multiple Sclerosis. A face that is nearly every ethnicity; that comes from nearly every country, that does not discriminate by social standing or class or financial or educational background or language or religion. We are both able to walk unassisted and use canes and walkers and wheelchair users; we jog and swim and partake in sports; we are housebound, we use scooters; we need respirators. We are everything in between. We are visually impaired and we are not. We are at every level of physical ability.

Of course, we "look so good" while we're doing it. We hear that phrase every day of our lives. Sometimes that phrase is meant as a compliment and sometimes it is meant to hurt or meant to shame us into doing something of which we may not be currently capable. We may be able to do that something tomorrow, though, or next week; Multiple Sclerosis is like that. We are like that.

Some of us are hearing impaired; yet all of us occasionally have people talk louder to us. "HOW ARE YOU D-O-I-N-G????" they'll scream, speaking to us as though we were either hearing or intellectually impaired. "YOU LOOK SO G-O-O-D!!!!"

Of course we do. Thank you very much. We are, in fact, the very best looking people in the handicapped community. We have secret beauty pageants every year, to decide which of our number is the absolute best-looking. Billy Crystal emcees, as his character Fernando; "..and you look MAHVELOUS my dear; absolutely M-A-H-V-E-L-O-U-S..."

We are brave. We are fragile. We want to live, and we want to end it all. We look for support and we want to stand alone. We are Everyperson. We are the People with Multiple Sclerosis. We are People, Just Like You....

I didnt write this but the words say everything.

Monday, May 16, 2011

The UGLY part of my CCSVI procedure

Canyon we think about you everyday.

The time is flying by these days. I continue to see the same improvements as I did. I knock on wood everyday. It's funny how you just move on and don't look back until something or someone reigns you in to take a look. I have to admit the "are you sure you should be doing this comments"  or my personal favorite "do you release what you just did, 6 months ago there is no way" are good to hear. All is good with my MS and its effect on my life, which would be VERY little!!!!!!!

I thought I would take this opportunity to again thank everyone again for their HUGE generosity and donations. I don't think I can say this enough or in big enough words. 

The worse part of the procedure is now staring me in the face. The bills. I wanted to include a basic breakdown of all the costs to me and what my insurance did or did not cover. A lot of people have been asking me, so here it is. I do find it amazing how much money can be spent in a 4-6 hour span when it comes to the medical field. If anyone is interested in what a particular thing cost please get in touch with me and I will give you the figure.

Angioplasty procedure. ultrasound follow up etc.
Billed: $2372.00 
Insurance: $636.30
Total bill to me: $1,735.70

Hospital (procedure done at Albany Medical Center):
X-rays, Venogram, Angioplasty, drugs etc.
Billed: $20,313.82 
Insurance: $10,698.05
Total bill to me: $9,615.00

Entire Costs:
Billed: 22,685.82
Insurance: $11,334.35
Total bill to me: $11,350.70

I will have another update soon, keep the emails and messages coming it's great to hear from everyone. 

Wednesday, April 6, 2011

April already

April already…seems like yesterday I went up to N.Y. to be treated. Guess that makes it 54 days since my surgery.  As you can probably tell by the fact I haven't posted I have been keeping busy.

Life is outside now as much as I(we) can get. Walking, hiking, horses, yard work and even cutting down, splitting and stacking of some trees. I have also spent some time at the barn doing repairs. All-in-all doing everything I haven't been doing for the last few years. Time to catch up on my life.

It's funny as I go along with my journey I don't realize all the changes that have happened me. Everyday is, well as I see it and how I think on that day. in the beginning after my surgery I was still in the mind set, be careful don't do to much, are you sure you can do this, whats going to happen to me and how many days will it take me to recover.  I no longer get stuck with any of that. My limits are physical now.  I just do things and move to the next. The only time things hit me is when I hear my wife talking to a friend about what I am doing or telling me "hey do you realize what you are saying and doing?". It really is incredible, to say things for my wife and I have changed is an understatement.

I recently got all the paperwork from my surgery. All the specifics and statistics. I will being doing a post on that soon so I will keep this one short.

Bottom-line I am doing GREAT. I continue to be where I was no changes, no reverting, just the same and just the same is awesome.

Please any of you who haven't been tested for CCSVI please do so. Get treated. 

More soon. 
Best to everyone.

Wednesday, March 2, 2011

18 days CCSVI post op!

Thought it was about time for an update and a little comparison to the old Dave. A quick note if you click the title of this post you can see some videos and pics from my procedure. It has been a great couple a weeks to say the least. I have done things I haven't done in 3 to 4 years. An amazing change for me. So what has been going on and what have I been doing? I decided to take at easy and not do too much my first week back. Week two, however was a bit different. 

On Monday 2/21 I went horseback riding for the first time in 3 years. No ill effects what so ever MS-wise, but I did get a bit sore from being out of shape. It is so nice to have my mind keep on going and my body get tired. It's really hard to explain to people who don't have MS. Prior to surgery, cognitive issues, my eye (optic neuritis)  and terrible fatigue would all kick in prior to me get physically tired or sore. After riding I decided to give the jacuzzi a try. That's right, a HOT bath, salts, soak the works. Again, no ill effects! Nothing...

After a few days letting my body catch up, on 2/25 I was off on a 2 mile walk that I haven't been able to make in 3 years. 3 YEARS!!!! Surprisingly nothing at all bothered me, not even my body, everything kept up. No soreness no MS issues, just a great walk. I thought a lot about this walk over the next couple days. It wasn't strenuous and it didn't push me physically at all.

So, on Sunday 2/27 I decided to push it a little. I am feeling great, let's do it. Off we went to Cumberland Knob to hit the 2.5 mile strenuous hiking trail (4 YEARS). The hike was serious physical work for me. Rubber legs a little under halfway through. My cardio overall was good. My body however was feeling the hike big time. So I stopped when I needed to and did the entire trail. Again my head stayed clear, no tired eyed, no heat issues, no MS crept in, just the physical tiredness anyone would have. 

The very next day on 2/28 I was off again for a walk. After talking it over with Anne I thought it best to keep it short so we settled on a 1.5 mile walk. Off we went through the woods near our home without the dogs. I felt pretty good. My body was a bit sore and tight still from the long hike. Things loosened up and I was feeling great during the walk. So good in fact, when we came upon a creek to cross I decided to go up stream a bit and jump across. Now, some would say this was a typical man not using his head but hey….maybe so…:P  I launched off the side of the creek bank, landing fairly hard on the other side. It was bit of a drop down. Landed on my left foot, then the right… Ouch….a bit of a sting in my left heel and in my hand from grabbing the bank as I landed, but I made it! Didn't think much of my foot  and we went on and I did the entire walk with no problem. Well, so I thought… All you telling me not to do so much, gather round and say all at the same time: I told you so! As the day went on my heel started to hurt. I bruised my heel pretty bad and by the end of the night was hopping around the house like a champ. It's much better now but I have some soreness from making the jump… guess I am not 16 anymore.

In reflection on these two weeks, having been so inactive because of MS I need to pay attention and actually think before I go making another jump…lol. Overall it's really hard for me to judge my body, what it can and cannot take. How bad has this Dave chassis become? We are on a mission to get things back in shape. Sooner rather than later.

Much more to talk about but I need to wrap this up as it's getting long again. In closing I am going to do a comparison of my symptoms prior to surgery to right now today.

Was: 8, by far my worst symptom
Now: GONE! All my issues now seem to be physical, due to prolonged inactivity. My body just needs to catch up.

Now: Still feeling this one out! The jacuzzi tub and the long hike have been the only real tests, but so far I haven't seen anything bother me. I can't wait for the 80-90 degree weather to see what's going to happen. Did I really just say that?

Was: 5
Now: Gone. Several people have told me even the way I talk has changed. No pauses, I don't have to search for words. No brain shut downs.

Was: 3 It was always there, eye sight fluctuated, had been a 10
Now: 2 It's still there, but I appear to be gaining some depth back. Very slow progression. 

Was: 2 Hadn't been bad in a while
Now: No issues

Was: 4
Now: No issues, just normal physical tiredness from exercise

Was: 2 
Now: No issues

Was: 3 Hadn't had an issue in a while
Now: No issues

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……

Friday, January 28, 2011


Chronic cerebrospinal venous insufficiency (CCSVI) research is still in the initial stages. 
At this time, the association between CCSVI and multiple sclerosis (MS) is undetermined, and it is not clear whether treating CCSVI has an impact on MS. Recent studies suggest that not all patients with MS present with CCSVI, and that CCSVI can be seen in healthy individuals and patients with other neurological diseases. Nevertheless, many MS patients want to know their CCSVI status.

In response to requests, patients can now be tested at Buffalo Neuroimaging Analysis Center (BNAC) for CCSVI by one of our registered vascular technologists (RVT).

Patients will undergo a Doppler examination of the extra-cranial and intra-cranial veins performed by a member of the BNAC RVT team, trained in the Zamboni research protocol. Recent BNAC studies indicate that the non-invasive Doppler ultrasound approach is preferable for initial diagnosis and for follow-up purposes. It is, therefore, safer while yielding results similar to invasive venography and, consequently, can be recommended for initial screening purposes. 
Testing is available Monday through Thursday
Evening hours are available
Patients will be informed of the results at the conclusion of the exam 
A written report will be mailed or faxed within two business days
Cost: $675

Thursday, January 27, 2011

14 days.

I quick check in with everyone at 14 days to go!

After talking with Anne I decided to go through and have all my doctors and all my blood tests checked prior to treatment. I have had my blood drawn and should have the tests back in my hands on Monday. Also on Monday I am meeting with my neuro…depending….maybe the last time for some time to come. Don't get me started on neuro's...all though to be honest mine has been really good. Unfortunately she has stopped seeing patients. I will be meeting with her husband (also a neuro) on Monday for the first time. one can only hope he is as good as his wife.

Last up with be Dr. Mehan. One adjustment and look over and I will be easy to go.

14 days until I leave…..FINALLY….

Tuesday, January 25, 2011

Follow my blog on Facebook

I have added my blog to Facebook!.

Lots to cover before my trip up to NY. More later this week!.

Monday, January 17, 2011

25 days...a follow up from Steadman.

I can't help but feel very optimistic............:) Go Steadman!


I wanted to send an update and capture much of what I have been experiencing over the past 48+ hours.  Yesterday morning, I awoke fresh and ready to face the world.  I generally stay sleepy for about the first hour and have to drag my behind out of bed just to get to work – never feeling like I have slept long enough to replenish my energy reserves (even though I generally get at least 8 hours of sleep each night).  Once I get going and out the door in the morning, I generally do not get fatigued during the day, however, I do feel more and less energy come and go throughout the day.  Yesterday and today have been completely different as I have had a steady stream of energy throughout the day and into the evening.  (Case in point - last week I would have procrastinated to send out an email such as this so I could save my energy to spend with time with my daughter) 

I can also report that my feet have been warm from all of the extra blood flow – in fact, I texted my wife yesterday while I was in MBA class and told her that I needed to take of my shoes and socks because my feet were getting sweaty!  (It is hard to believe that the some folks (neuros) feel that this is a placebo effect as I can literally feel the warmth of the blood that is flowing through my body)  My feet are also less sensitive to touch (less ticklish), and I found that I did not need to put on my flipflops or slippers this morning when I got out of bedlike I usually do (because the feet are so sensitive).  Also, I have enjoyed the ability to stand up without dizziness or pressure in the head, and having to grab onto something to help myself up (thanks to improved balance and reduction in lower back pain.)

My mental clarity and focus is still improving and my head has also been warm with the new blood flow.  Friday afternoon and yesterday I found that I had no clue how to direct my thoughts and how to ‘use’ this newly improved brain.  It is in the act of repairing itself, so I just let it go and enjoyed the ride (with a stupid grin on my face)!  I no longer feel that I am asserting as much effort to think, process, find words, and remember mundane but important facts (i.e., what was the actor’s name in the movie that we watched last night?).  Also, I feel that I no longer grumble about the little things that I used to and that my mental outlook has been changed for the better – my wife appreciates that!

I have been taking it easy and do feel that the body is getting used to working normally again.  I never mentally went into the procedure thinking that I was going to have great results, and honestly, the minimum that I have asked for is for a halt, reduction or pause of progression.  Is this procedure a cure? No!  Is my MS gone? No!  Will it take a long time to repair the damage?  Yes – because it took a long time to create the damage!  Will these results last?  Maybe, Maybe not!  Like always, I am just taking it one day at a time and I know that this is a piece of the MS puzzle.  As I mentioned before, if these results go away tomorrow, I will go back and do it again, and again until it lasts (or I feel that stents are the way to go).  I have tasted what it feels like to be almost normal again, and it is much better than sitting around feeling like I am not in control of my body.

Some of my friends have asked about the follow-up and treatment plan.  The staff will follow up with a call this coming week to check on me, the doctor will send my report in the next week (by email which I may send questions back), the doctor is always available by email if I have any questions (he has already proven this before the treatment), the staff is always available by phone and email and very prompt (and they are very knowledgeable about CCSVI including Dr. Parikh who is the attending doctor in Durham, and I may elect to go back for a consult or (follow-up procedure if he feels it is necessary) with the doctor when he is in town next (which is about once a month for a few days at a time).  He did not put me on any drugs.  I did ask about this specifically, and he said that there is evaluation on a case-by-case scenario depending on the severity of the stenosis/blockages and the patients history.  I personally feel that he takes a conservative approach to this type of treatment as blood thinners and the such need to be monitored and adjusted in periodic intervals.  He did indicate that aspirin may be taken if the individual chooses to do so (I took it before the procedure due to family history of heart-related disease, so I am continuing to do so).    

I promise to be honest and upfront with you about my experience – I will not sugar coat.  I do feel that ‘repair’ has been coming and going in waves – like a computer trying to reboot, then it is turned off for a few hours, then starts back up again.  I certainly hope that it will stay on forever, but I am just comforted to know that I have had some relief, even if minor.  Even it all goes away, I will be happy because I know that I can get the good life back again with a safe, simple (and oft performed) two hour visit (btw – the drive is longer and more painful than the procedure).  Advances in CCSVI treatment will, in my opinion, be the second line of defense in treating MS.  (The first will be steroids to reduce inflammation, followed by soon after by angioplasty).

*If you don’t like rants about neurologists, stop reading here*

I am not kissing my neurologist goodbye – but I will continue to have a few choice words to say to her the next time I see her!  If I walk away, then how we she know the benefits that I received from my procedure?  As a matter of fact, I told her that I would share this information and reports with her.  I have been known to debate the fine points of her ineffective approach to therapy and drugs (she does receive royalties for making grandiose speeches about medications that a) even the pharmacist do not know what the method of action is; and b. work in only like 13% of people) and I have been a little up front with her in past (I will say she takes it in good stride!).  I feel that these neurologists (at least the three I have seen) get used to having their power over the weak and the desperate and they understand that they have very little offer. 

It is time to challenge the position of their comfy little perch which they have come to enjoy for many decades.  MS patients need to ask about CCSVI, new therapies, and challenge the antiquated thought that they have built their practice on.  Unlike popular belief that they have no future in a CCSVI world, there is a role for them in MS in the future – whether it be diagnosing the disease (and recommending an angioplasty doctor) or working on the remylination effort - they simply need to be challenged!  There is a call to action that must not be ignored.

PS – I wrote this without my glasses on!