7/29/11 Will #10 finally do it?

Just got discharged from attempt #9, and suffice it to say it didn't work. Dr Stone at Mayo Clinic thought it might be a longshot to clear my clot and install a covered/lined stent. Turns out it was. I flew commercially to Phoenix and stayed the night on Wednesday. Thursday morning I rolled into the interventional radiology unit for insertion of another course of TPA similar to what we did in hospital back in February. The difference was the catheter used also had a ultrasound built into it and the theory was the TPA and ultrasound combined would knock out the clot, giving a clear path for the stent within a stent.

This morning, after a long night laying still so as to not disrupt the catheter, I got into the IR unit. The ultrasound product rep, the nurses, the doctors, and of course I were all looking to see some nice blood flow and a stent clear of the clot. No dice. Clot was hard and didn't budge at all. Not a bit. None.

I returned to my room where Dr. told me we needed to move up to the graft and bypass we talked about 2 weeks ago. I was discharged and told to expect calls next week from the scheduling dept.

Disappointed? Yep. Mad? A little. Nervous about a major surgery? Yep. Not sure what to say or do. It's so obvious my future isn't pretty if I don't do it. The collaterals were rampant around the stent this time and it probably won't take long for more lesions to develop if I don't get the blood draining soon. The good news about all this is Dr. Stone really seems to get it, says the probability of success is high, and he will make this a priority and get me in soon.

Indeed, let's hope the tenth time is a charm.

7/27/11 Here comes #9

Heading down to Mayo soon for attempt #9 to clear my left jugular.  Dr. William Stone has researched it, consulted with colleagues, and has agreed to try and clear the left jugular with a course of TPA followed by a lined stent placement.  If that works, we might be through this 9-10 month ordeal and I can get on with the next step of dealing with this disease.  If not, I'm looking at a more radical vein graft.

Will report as it comes to light.....

7/10/11 Mayo for another look

On Friday, July 7th, Kathy, Jake and I headed down to Phoenix for a consult with Dr. Stone in the Vascular Department Specialty Clinic at Mayo.  Specifically, we visited the venous malformation clinic.  You see, after 8 attempts to keep my veins open and finding the left jugular clogged yet again, we felt it might be time to get another opinion on how to proceed.

We went to Mayo for several reasons:
1) Each CCSVI procedure provided relief in numerous areas
2) Mayo Clinic is becoming more and more open to the CCSVI theory
3) I'm already a well established patient at Mayo
4) Second opinion is a prudent thing, especially when complications keep arising

Let's be clear.  Dr. Arata at Pacific Interventional/Synergy is a great doctor and I am forever grateful to him for all he has done for me.  He first diagnosed my stenosed veins, he opened them the first time giving me a real sense of liberation, and he agreed to keep working with me despite his busy practice doing this for many other people.  He's squeezed me in on short notice, answered my emails, taken my calls, and diligently performed the surgeries, each of which had results.  I just need another set of eyes and brains to help get through the repeated complications of a repeated, chronic thrombosis of the left internal jugular, and I can't think of many places better to go than the Mayo Clinic.  I will remain in touch with Dr. Arata when we decide what to do at Mayo.

Kathy made the call for me earlier this week and we got an appointment for 1:00 on Friday.  As is always the case with Mayo Clinic, they always let you know of changes in schedule, and we got a call Thursday to change the appointment to Friday at 2:00 because Dr. Stone would be in a surgery and they wanted to be sure he would be out and ready to meet.  Appointments at Mayo Clinic are sacred, and they  actually value a patient's time, unlike many doctors in Las Vegas and other cities who cram as many patients in as possible and could give a rip if you have to wait.

We met with Dr. Stone, a vascular surgeon.  When he came into the room, he already had reviewed my whole case, reviewed the CD's that had been uploaded into their system from my last visit in April, and started asking me questions.  In a 30 minute consult, we had some direction.  Dr. Stone was highly complimentary of Dr. Arata's work as he viewed all the films of my previous angioplasties.

After some discussion, Dr. Stone came up with two solutions.  The first was to add a lined stent inside the existing one, and have it done the same way as the previous interventional procedures.  A lined stent may allow the endothelium to build up without clotting.  The second solution was to do a vein graft from one out of my leg and parallel it into the superior vena cava.  This method is considerably more radical, and will require a 6 hour operation with a week of recovery.

We opted for the lined stent first, and if that fails, go to the graft.  Dr. Stone said he would do some research and consult with his colleagues, and call me this week for scheduling and/or further discussion.  We will also see the Mayo hemotologist for a second possibility that something in my blood is causing the clotting.  We agreed this ws less likely given the right and azygos have never clotted since the first procedure back in October.

After the appointment, we checked into the hotel, had a nice dinner, and felt once again hopeful and optimistic that we might get all my veins open for maximum opportunity to recover.