8/29/11 Recovery Continues

Last Tuesday we drove back down to Phoenix to meet with Dr. Stone and do all the post-op normalities.  First up was the all important Doppler to ensure my veins were open and flowing.  Having been through this test several times, I laid on the table and tilted my head to both accept the transducer and to see the monitor.  I could tell almost instantly that blood was flowing, perhaps even gushing, through the new vein.  The technician had a little difficulty identifying the connection points at the top and bottom of the graft, so she had to go and get some help form the radiologist.  As she left the room, I closed my eyes and thought this might be the beginning of the end of this ordeal.  I texted Kathy who was out in the waiting room, and I felt so relieved and so hopeful that Dr. Stone and this team might, just might, have cleared the path for my health.  

I gathered my composure as the technician came back into the room, and she completed a few more tests on me.  I got up, and Kathy and I walked somewhat in a daze to the car.  Was this really happening?  Was something positive being confirmed?  We felt a lot of joy and hope as we drove to the second appointment which was to meet Dr. Stone at his office.

We were quite early, but we checked in anyway just in case the Dr. was available.  Soon we were chatting with him about how my veins were flowing freely, and he was quick to ask about my MS symptoms.  I told him that my gait was improved, I was moving my bowels better, no morning headaches, no cog fog, balance was improved, and it seemed my intolerance for heat was improved.  It was 116 degrees in Phoenix that day so I think that test was legitimate.

Then Dr. Stone and I turned to another topic...namely the Mayo Clinic becoming more of a leader in the CCSVI studies.  Dr. Stone told me that although he's done hundreds of vein reconstructions before for patients and it's a well established surgery, this was his first known case for Mayo Clinic performing it for the purpose of improving MS symptoms.  He was genuinely curious and deep in thought, perhaps even taken aback by the improvements I was reporting in just 11 days since the surgery.  

I told Dr. Stone this wasn't placebo.  I told him I know what I can and can't do.  I told him again that I was a baseball player and I've always been very in tune with my body and I don't fake symptoms or wish for improvements.  I reminded him I only used the pain button right after surgery for about 3 hours, then the nurses came and removed the narcotics bag from my IV as they realized I didn't need it.  I took no pain medications on leaving the hospital.  Yes I have aches and pains from the surgery but nothing I couldn't tolerate.  I think I am very honest in assessing my symptoms, and they either have improved or they haven't.  He took it all in and engaged me in meaningful discussion about both me and the idea of other MS patients benefitting.  We even talked about the idea of ALS, Parkinson's and other neurological challenged people benefitting from the potential relationship between the vascular and neurological divisions of the body.  Dr. Stone told me he would have the Mayo Clinic's media department contact me for an interview, and he also told me he wanted me to go back to Dr. Wingerchuck for a full workup in my functions so as to establish a baseline as I recover from surgery and into the future.  He really was quite curious about it, but of course reminded me he was a vascular surgeon and there likely wouldn't be any involvement from him unless there were any problems with my new vein or my leg's missing one.  

We departed and drove home, feeling really good about the future.  We felt like we caught a break.  We decided to go to our cabin near Yosemite for the weekend, which we just returned from.  It was a little achy and challenging driving 8 hours up and back, and I seemed to develop a bit of an infection in a couple of the surgery wounds, but I'm on antibiotics for a week or so and it seems to have knocked that out.  I'm getting up and walking a fair amount in each day, still spending a lot of time with my leg in the air when seated.  Of the 15 leg incisions, 13 of them are almost completely healed, while two are having a couple of issues, mostly because they are in tug spots when walking (top of the calf and in the quad/hamstring area).  The neck incisions are doing really well.  

I am on restrictions until 9/23, 6 weeks post op.  Walking only, no swimming or exerting myself.    

8/18/11 We Added Videos

Thanks to my 13 year old son, Jake, we have uploaded the videos of this journey to the blog.  Most of the footage is from October of last year, just before and just after the first CCSVI surgery on October 26, 2010.  I was so thrilled with the results initially, but this incessant clotting of the left jugular has been an unbelievable trying and frustrating time.  Every time I had a procedure done to open the vein, it would improve my symptoms just like those seen these videos.

I didn't take much video during the period of clotting, i.e. January through August this year, because it was always the same thing....feel better for a day or a week, then experience the let down of a re-clot.  Now that my vein has been reconstructed and we're hoping like crazy that this one took (heading back next week for the follow up), we did a video yesterday after this amazing major surgery.  I was weak in the 8/17 video, but I managed to walk 2000 feet in our neighborhood and get footage of my improved gait.  It is readily apparent that my walking has improved.  Just compare it to the videos of before October 25, 2010.

For me, there is absolutely no question as to the correlation between having flowing, circulating blood, and improved symptoms.  Some who have done the CCSVI may not have experienced this, but we often question how many people have re-stenosed, clotted, re-clotted, etc.

Enjoy the videos.  Now that Jake has figured this out for me, we'll add new ones as we continue to recover from the last surgery.  You have no idea how much I want this to be the last one I have to go through and I can get to more healing.

8/17/11 Made it Home

Woke up this morning with a wine glass in my hand.....who's wine, what wine, where the hell did I dine?  Must have been a dream.  I don't believe where I've been.  Come on, let's do it again...

Frampton's song notwithstanding, the surreal nature of this journey continues.  A few years ago, we moved to Las Vegas.  I was a little overweight, but otherwise healthy and strong, and building a little empire in real estate.  We had a young healthy child who was smart and fun to be with, and we owned a nice home.  We've been fortunate in the home and the child department, and our business continues to survive, but it is just impossible to explain all this MS mishmosh.  Read my blog posts from back in October 2010.  I was in healing mode.  I improved, my legs were moving me around, and I felt CCSVI was the answer to the MS world. 

Then the clotting of the jugular took place and my symptoms came back.  We tried numerous times to re-open the left jugular, including a 10 day stint in the hospital back in February and numerous trips to LA to see Dr. Arata who repeatedly got me in on a priority basis to help do his part.

We then get the idea to go back to Mayo Clinic and see what they could offer.  A trip there for a course of tPA and a stent within the stent was attempted and failed, so it brings me to today's post.  I woke up after dreaming I was a normal person, a dream I have pretty often.  I looked at my neck and leg, both of which look like I was in a gang fight.  Yesterday's drive home from Phoenix was a grueling, 7 hour ride where we had to stop several times to get out and walk around.  I hurt, I ache, and I wonder what happened to me again and again.  Is this really happening?

Yes, it is.  I just went through a surgery in which 4 world class Mayo Clinic surgeons worked on me, 2 on the leg and 2 on the neck, for 4 1/2 hours.  They removed the Saphenous vein from my left leg, fileted it and reconfigured it, then popped it back into my neck, somehow managing to not cut any other nerves, arteries, or just cutting my whole head off.

I last remember them prepping me in the operating room, and I remember there were some ten or so people doing things to get me ready.  I think I asked the anesthesiologist if he added something to my IV because I was starting to feel out of it.  He responded yes and I woke up some 9 or 10 hours later in my room with a pile of nurses looming around me, setting me up with things I guess I needed. 

Kathy and Jake were in the room and I soon learned the procedure was the "easier" of the two, meaning they were happy enough with the subclavean vein to not have to crack open my chest and run the new line into the SVC by my heart.  I was prepared for that, but as I mentioned before, I was pretty relieved we didn't have to do that. 

So there I was in the room, pushing the pain button from about 5 until 7:30 pm or so, and I fell asleep until about 11pm.  When I woke up, the anesthesia began to wear off, and I could feel my breathing was easier.  I wondered if, after all this, my new vein was open and flowing blood.  I layed awake all night, all the next day, the next night and day, watching TV (Michele Bachman won the Iowa Straw Poll.......saw that about 600 times), drifting in and out of various states of awareness, constantly wondering if this surgery would be successful and if my MS symptoms would obtain any relief.  In all, I was awake in the hospital about 48-50 hours after the surgery.

Dr. Stone came in Saturday morning and told me all about the procedure.  To him, it was another day at the beach, and he kept telling me he was just glad things were improving and I was ok.  He did admit that stitching up my vein in the new spiral to get the diameter they wanted was a bit tedious, taking a couple of hours of fine needlepoint.  Then he grabbed a portable Doppler unit and put it at the base of my neck, just to make sure blood was flowing through his new vein.  He was confident it was flowing, but to me, hearing the blood flow through after all these tries was sweet music to my ears.

The second night was a little weird too.  I layed awake again, and I was somehow becoming delerious, because I just didn't know what I wanted.  The nurse kept coming in and asking me, but I didn't know.  I was just out of it, and couldn't make a decision on something to drink, much less if I wanted a pillow.  I layed there, and at one point I realized I had no pee bottle, so for the remainder of the night I just peed all over myself.

In the morning, still wide awake, the same nurse came in and realized I had done this, and she kept asking me why I didn't tell her what I needed.  I never had an answer, and I eventually just broke down, started crying my eyes out,  telling her I used to be so capable, and I just hate asking people to do things for me when I feel I should be able to do them myself.  She called for help and soon my bed and my filthy, urine and sweat soaked body were cleaned up and I was sitting in a chair listening to yet another Doppler of my blood flowing out of the bottom of my neck.  More music to my ears.

Eventually I snapped out of my pity party and I started to take little cat naps throughout the day and began to walk around the nurse station a couple of times a day, and I began to realize my balance felt like it did back in October after CCSVI #1.  I was weak and felt like a train wreck, but I could tell those signals between the head and feet were working and I felt more stable.  I felt hope.  I felt there was a chance this worked.

I was discharged Monday afternoon about 4:00pm after some incredible care by the nurses and being visited by numerous doctors who all had a real interest in this surgery.  We stayed in Phoenix for the night and drove home yesterday, some 7 or so hours with lots of stops to get out and walk around.  We went to Chili's for dinner last night, and came home to a night of real sleep, which felt so good.

As I awoke this morning, I thought about this as something beyond me.  Sure I was and still am hurting, but I'm in recovery now and it's just something I have to bear down and deal with.  But more importantly, it was becoming clear that the CCSVI/MS link is gaining some traction, even at Mayo Clinic.  I don't know for sure, but I think I am their first, if not among their first, to have a vein reconstruction done at Mayo for this purpose.  They agreed to do my procedure because I had clearly demonstrated relief of my symptoms from all the other procedures, even if only for a day prior to a reclog.  This is the first I've heard of this type of procedure being done for the purpose of improving an MS patient symptoms, instead of calling it treatment for CCSVI.

So as I continue to digest the magnitude of all I have been through in the past few days, weeks, months and years in this disease, part of my recovery is made bearable by knowing I might have been a part of the future for MS patients getting CCSVI treatment in the open, instead of having to go underground because of the controversy surrounding it.

8/13/11 Finally a Break - Chest Remained Intact

People, myself included, generally think of the Mayo Clinic as a place for really sick people. And while that is probably a well founded stereotype, it sure is hard to beat for top quality care. I can't think of a single aspect of this visit that didn't completely obliterate so many other facilities. From the important things, like finding out it took 4 surgeons 4 1/2 hours to complete my procedure and also learning they liked my subclavean vein enough to graft there instead of having to cut open my chest to the little things like having a second bag for your shoes so as to avoid dirtying your clothes stuffing it all into one bag, this experience was phenomenal.

I first learned about the chest remaining intact as I started to wake up. The relief I felt was just huge. Though prepared for it, learning I didn't have to go this one major last step was unreal. It's also a real testament to Mayo and their approach. As one of the surgeons who busted me post-op said, "if you're going to give carte blanche authority to a surgeon, you want it to be here." Well said, I thought.

8/11/11 Pre-ops good, cleared to cut

Thursday I went through all my pre-op visits such as the anesthesia consult, chest xray, labs, the leg vein mapping, and the last visit with Dr. Stone. All cleared and good to go.

The surgery is simple enough: cut my neck open and take a look at the size and condition of my veins, then slice open my left leg and steal the greater saphenous vein. Then filet the vein and wrap it around a metal rod in a spiral (a bit like a paper towel tube) so as to increase the diameter, then reinsert the new, wider vein back into my neck. Simple enough for me-I just am scheduled to lay there while these guys do it all.

One last thing......if the vein below the jugular (the subclavean) isn't good enough to tie into (i.e. Not big enough, then there will be an added step of cutting my chest open to reinsert the jugular directly into the Superior Vena Cava just before the atrium. Awesome. Hope we get to do that extra step just so I can say I fully experienced this.

8/9/11 Let's see if I can make this harder

Surgery is Friday the 12th. It's quite an involved surgery so I thought it would be good to exercise everyday until I leave for Phoenix Wednesday night. So I rode a 80-90 miles over 2 rides on Saturday and another 50-60 Sunday. I took the bike to work Monday. We got to our old standby spot at Eagle Ranch for a quick run down the power line trail. One of my riding buddies couldn't make it and another fell over the weekend so it was a perfect set up for a nice easy cruise down the trail.

About 30 minutes into the ride I was rounding a corner and a fairly large boulder came up quickly. Bang went the front wheel and boom went the back. Soon I was flying and coming to the realization it wasn't controlled flight. Impact was swift and the gear did it's job, but my right shoulder was hurting pretty bad.

We quickly realized I wasn't going to be able to ride out so we called for help. By midnight I was home sleeping on the couch with my arm not moving too well.

Just what I needed. Separated shoulder to add to the challenge. Oh well, I guess this will help keep me from trying to get back on the bike too quickly after surgery.