April 2011....wow 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.

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.

FATIGUE

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.

HEAT INTOLERANCE

Was: 7 

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?

COGNITIVE ISSUES

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.

OPTIC NEURITIS

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. 

LEG CRAMPS

Was: 2 Hadn't been bad in a while

Now: No issues

LEG SORENESS

Was: 4

Now: No issues, just normal physical tiredness from exercise

NUMBNESS

Was: 2 

Now: No issues

SHOOTING PAIN

Was: 3 Hadn't had an issue in a while

Now: No issues

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. Whew....got 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 quiet.....lol. Shut it so we can work, please.

You may feel a small pinch in your groin....it 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, drinking...food 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 dessert....it 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.

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. 

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!

After....!!!!!!!

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.

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.

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……

BNAC announces CEREBRAL VENOUS DOPPLER TESTING $675!

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

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….

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!.

25 days...a follow up from Steadman.

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

Friends,

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!    

Stead

26 days....a friend checks in

Well it is 26 days until I am treated and the days are going very slow. I received this CCSVI report from a friend who was recently treated and I thought I would share it with everyone. I edited out some specifics. If you want any information please contact me and I will see what I can do. Congratulations to my friend and I am so happy things went so well for him....I CAN"T wait for my turn....

I want to give yall some feedback about my CCSVI procedure in (edited out).  The staff at (edited out) are top-notch and treat you like family!  It made the procedure an even greater experience.  They are knowledgeable about MS and CCSVI and discuss it with you openly if you wish.  Two of the nurses at the center have family with MS/CCSVI as well, so they are very compassionate.  For those of you unsure about the procedure, they do offer consults with the doctors as well.  I had emailed my insurance information ahead of time and they never asked for the card, credit card, nothing….I appreciate that.  After signing about 8 forms (HIPAA, etc), I was prepped with an IV and was in the procedure room in 10.  I should stop here and say that there are only two procedure rooms, so you get individual attention from the staff all the way around.  None of the waiting in line, etc.

Once I got into the procedure room, they immediately prepped me (lasted about 20-30 mins) and then we started.  They use  moderate twilight sedation and you can watch the procedure on monitors if you wish.  I watched from time to time, but the sedation made me want to snooze a bit.  The doctor will talk to you throughout the procedure if you wish, and he asked if I just wanted him to be quit.  He was also training the local doctor that runs the (edited out).  I told him to keep talking by all means so the local doctor can learn the techniques and help out our friends across the state.  (The doctor is also doing research with arterial/venous flow rates and asked if wanted to participate.  The procedure would have taken 30 minutes longer, so I declined because of traveling and schedules).  Honestly, the procedure is about as easy as slipping in ice this past Tuesday.  I felt no needles going into the groin, I felt the occasional maneuvering of the wire (which is akin to  light tickle), and when the ballooning occurred, I felt that.  They warn you before-hand what and where it will be felt.  It isn’t painful, but it is very heavy pressure.  They squirt a little more juice into the IV just before the balloon!

So, what did he find?

-Right Jugular stenosed just below right clavicle (horizontal ballooning)

-Left jugular stenosed in left neck (same level as my cervical lesions…hmmm) (vertical ballooning – this area is still tender right now, similar to a strained or pulled muscle)

-Azygous vein in chest was twisted in knots

-Iliac Vein was stenosed

(THAT’S FOUR STENOSEES…or is it Stenosi ??!!!)

Technical Data

-No stents used

-Went in on left side

-I will send the report when I receive it (twilight makes it hard to interpret all of the acronyms and such)

-The procedure lasted almost two hours

-The Doctor asked to use my pictures in a presentation in California next month

Results?

-Overall, I feel much lighter!  Head feels lighter, legs feel lighter!

-Head feels like blood is moving through it again

-Cog Fog has decreased by probably 75%  (I might need sleep as well, 430am was early)

-Significant reduction of spacisity in left side of neck

-I had back pain in mid-back from time to time that may have been MS hug or back problems – well, the ‘hug’ is 75% gone!

-I feel that my lungs and diaphragm are expanded more and I am getting more oxygen

-I have a significant increase in alertness and focus

-My optic neuritis has been almost eradicated (vision wonky just a bit after some ice cream!)

-Balance feels better

-Sinuses on left side feel drained and less stuffy

-Blood pressure dropped by 15-17 points (from my historic average of ~130/87).

It's official!

Great news! It's official! I am now scheduled for CCSVi surgery on Feb. 11th 2011. When I get all the specifics (via email) I will update everyone. Let the countdown begin. 28 days…tic toc.

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…..

T-Minus 5 days

Well 5 days until I am off to N.Y. Getting things ready as I write this. We are driving up this time. Being that I am not sure how I will be on such a long trip we are leaving plenty of time. Have to be up there Monday, get a good nights sleep and it all starts on Tuesday.

Tuesday     11/30

8:15 am  Research Consent 

8:50 am   Ultrasound

9:30 am   Appointment Dr. Siskin

Wednesday     12/1

 8:45 am  Appointment (neurology)

From there I would guess we schedule the date for the venogram and the treatment (real or not).

Starting sometime on Saturday I will keep a running report and will touch base as often as I can keeping you all up to date with news, pictures, and what ever else may come up.

Thanks again for all the support and well wishes along the way. It means a lot.

....here we go!