Friday, April 29, 2011

Update on Clot

Actually this isn't much of an update on the clot because it looks the same on ultrasound. I'm still on warfarin (not coumadin as I previously posted) and getting frequent blood tests to check that the dosage is right.

The good news is that after such a long time I finally had a few days of feeling better! It's not a huge amount of symptom relief but enough to give me the energy to come to the computer and post about it. My life has been so very slow for many weeks and my brain power in particular has been in the doldrums that it makes even a slight up-tick feel great.

My existence is one-day-at-a-time and depends mainly on the fatigue and cog fog that shows up. I don't make appointments unless I need to see a doctor and have arranged help to get to there and back. I'm not used to needing this much assistance but don't have a choice.

Back to the good news, I'm able to stay awake and mentally alert for a bit longer today (and last Wednesday too). In between naps I'm able to think well enough to reply to messages that have waited in my in-box for weeks.

I'll keep this brief---as I'm already getting tired. Hope to update with more news sometime soon.

Monday, March 7, 2011

A Clot, a Correction and a Conundrum

Let's start with the clot. When I went for an ultra sound to check on my left IJV the Radiologist said he couldn't detect any blood flow in the vein. After my doctor (PCP) read the radiology report she told me there was a clot in the vein and immediately put me on anticoagulant meds. I'm no longer in shock about the situation and am trying to move slowly and carefully to avoid any bleeding. At some level I feel relief because the clot may explain why I've experienced practically no benefit from the procedure in Brooklyn!

Okay here's the correction to my previous post: my left IJV did show stenosis near the valves. Delete the phrase I posted about the region of valve not being thickened or abnormal---the confluens of the IJV and subclavian vein was angioplastied aggressively to get blood flow through a faulty valve. Unfortunately, that's exactly where the clot formed.

So I'll stay on Coumadin three to six months as the clot shrinks and shrinks and shrinks. Oops, I regressed to talking about the clot again.

Here's the conundrum. Actually it's a riddle that I hope Dr. Sclafani figures out but I'll accept any ideas from practically anyone on how to solve it. The upper part of my left IJV has that septum issue that wouldn't pop open during the procedure. Think of it like a funnel but turned upside down so the wide part is higher and the narrow is lower. That's what my blood is trying to pass through as it flows down the vein.

I was told I'm not the only patient with an inverted funnel thing causing problems. However I'm the only one with such resistance to balloon angioplasty to treat it. I'm forever searching for the part of me that is unique but I really DON'T want my veins to be unique!

I realize I'm a pioneer and my doctors are learning from my case but I didn't want to hear that no one else has shown the resistance that I did during angioplasty. While writing posts for this blog I usually try to end on a hopeful note but I must confess that I feel discouraged today.

Saturday, February 5, 2011

All About My Veins

Instead of doing a cut and paste job I decided to just summarize the important points of the report about my procedure. Here goes:

Right Internal Jugular Vein (IJV) demonstrated good flow and no collateral vessels. The region of the valves appeared to be quite normal. Therefore no interventions were performed in the right IJV.

Venography showed that the diameter of left IJV was narrower than on the right however no focal stenosis was seen. The IVUS (Intravenus Ultrasound) was placed within this vessel and it showed a septum dividng the lumen into two components. Each measured approx 50% of the diameter of the vein peripherally but as viewed more centrally this septum gradually funneled down. The region of the valve did not appear to be thickened or abnormal.

Because of the significant stenotic region, balloon angioplasty was performed. Multiple dilatations were performed up to 32 atmospheres with stretch but not disruption of the stenosis.

IVUS catheter was placed within the azygous vein and showed a narrowing with approx 75% stenosis. Balloon angioplasty was performed (10 atmospheres) with obliteration of the waist (i.e. problem).

To sum it up I had successful angioplasty on my azygous, partially successful angioplasty on the left IJV and no need for concern regarding the right IJV.

I feel hopeful that sometime in the future there may be a way to disrupt the septum in my left IJV and let the blood flow freely in that vein. Right now that doesn't seem to be happening but I'm staying upbeat about the future.

Friday, February 4, 2011

Procedure Report

The report about my procedure arrived today---four weeks to the day since Dr. Sclafani took a look inside some of my veins. Besides being relieved to finally see the document I was glad to read through the details of what the doctor saw. Some of it sounded like Greek to me but I managed to piece things together for the most part.

I'll try to attach it or download it to this blog but if all else fails, I'll cut and paste it into a new post later.

Sunday, January 30, 2011


Just a quick update to say that I'm feeling stronger. Last week I was able to participate in the activities that were part of my Monday thru Friday life before going to Brooklyn. It felt nice to visit with the folks who I hadn't seen for many weeks and get the benefit of the activities (like attending a yoga class as a student for example).

My energy let me do more activities than in the previous few weeks but with strictly defined limitations. I had to rest between projects (about every two hours I'd say) and for tougher activities like teaching a gentle yoga class the resting was more intense. I fell into a dreaming sleep during a couple naps last week---not my usual style. All-in-all my batteries feel close to being fully recharged!

Wednesday, January 19, 2011

Gentle Healing Yoga

I taught my first class since returning from Brooklyn and I realized how appropriately it was named. Yesterday it was gentle (I stayed in a chair and instructed using words), healing (brought me back to the community that gives and receives for healing whether teacher or student), and yoga (poses of course but emphasis on the breathing practices and meditation). This is a class that I volunteer teach (all donations are given back to the studio for letting us use the space) and yesterday it was clear that I benefitted as much as the students from our time together.

Recovery is still slow but continues in a positive direction. As for benefits of the CCSVI procedure, at most I'll say that my energy surprisingly holds for longer periods of time than I expect given my situation. I'm not dancing around the house between naps but I'm fairly functional and vertical! Sadly though I'm not going right back to some of the activities that I enjoyed pre-Brooklyn and I miss the kids, adults and swimming pools that I haven't seen since my return last week. I must be patient---oh yea, I am a patient. Now that's confusing me so I better sign off and take a nap. :)

Friday, January 14, 2011

Half Hour

So far today I've left the house for a half hour to help out a neighbor. The project I helped with did not require anything more than witnessing the signing of some legal documents. Oh, and signing my name that I witnessed the event. I handled it excellently.

It's really nice to have a warm, sunny day for recuperating today. Just seeing sunshine and hearing the stream in my backyard helps boost my morale. I keep reminding myself that it may take very long to see any results so I'm doing my best to keep a positive attitude and appreciate every little blade of grass that I pass by.

Thursday, January 13, 2011

To the Mailbox

Just to give you an idea of the speed (or lack thereof) of my recovery, today I was able to leave my house after about 48 hours of being indoors. My grand adventure was to go up to the mailbox at street level, retrieve the mail and come back.

I managed very well even in a pair of wading boots and without a cane! But that was the extent of my interaction with the world outside and my body was happy to go back to resting on the couch.

Other people who have undergone a procedure similar to mine have said that it took them quite some time to bounce back. So I'm not rushing to do more than what seems reasonable. I learned the hard way when I was first diagnosed in 1988 that if I try to get up and party again before my body is ready, I end up having a relapse and it takes even longer. Patience, patience, patience.

Wednesday, January 12, 2011

Resting Still

It seems like all I've done since the CCSVI procedure last Friday has been to enact different variations on ways to rest. My body is taking it's own sweet time to bounce back from what was a minimally invasive procedure and I'm not rushing the process whatsoever. In my mind I figure the best thing I can do right now is allow the healing journey to happen and not get in its way. Encouraging it along is permitted however!

Sunday, January 9, 2011

CCSVI Procedure #2

I had my procedure with Dr. Sclafani last Friday and it went well. I don't feel any benefits right now but it may take some time for symptom relief to happen. I had venoplasty done on my left internal jugular and azygos veins. The jugular presented some challenges to Dr. S. that he had not encountered before! He may use my case a learning case on his TIMS thread.

At the moment I'm tired most of the time and rest a lot to recuperate from the 3 hour procedure. I'll update more when I've got a bit more energy and eloquence.

Monday, January 3, 2011

Going to Brooklyn

I'm due to have a retreatment for CCSVI on Friday in Brooklyn! I'm not sure what to expect but I feel really good about the doctor doing the procedure: Dr. Salvatore Sclafani. Perhaps Dr. Sclafani will use larger balloons and treat both jugulars and azygous veins---I'm not exactly sure but that's what has been discussed. More will be revealed.