Vascular Road Maps and other Cowden’s adventures…

I sometimes hate the saying that things work out the way they are supposed to.  Sometimes I just don’t buy it.  But, then there are other times.

I have suffered with varicose veins since I was in my early 20s.  I had 2 stripped surgically before I was 30  I had 5 VNUS closure procedures in 2011.

Over the years I have tried compression stockings, switching to comfortable shoes, losing almost 40 pounds, and the veins just keep on bulging.

It gets to the point that the throbbing in my legs is the last thing I feel before I close my eyes, and the first thing I feel when I wake up in the morning.  During the day I get distracted.  And when I get home at night to take off my shoes and switch to pajamas, the size of my legs is noticeably larger.  The swelling is evident.  The blue veins bulge.

Although this is far more than a cosmetic issue, the ugliness and the irony doesn’t help.  Last summer I bought shorts.  In a size 2.

 

This is not my leg - but a close comparison...
This is not my leg – but a close comparison…

This summer I barely ever wore a pair, and despite having a pool at home, I never put a bathing suit on.

As Meghan has battled with her AVM (Arteriovenous Malformation) in her right knee since around 2009, I have learned more about the vascular malformations that can be associated with the PTEN mutation that causes Cowden’s Syndrome.  It seems the connection is documented, but small sample sizes make it hard to study the specifics of this rare disease and all its variations in detail.  See there are differences even within the PTEN mutations that link us all.  Some are germline mutations, some are frameshift, some are missense, others nonsense.  AND, there are further specific differences too complicated for me to process.  It seems, in layman’s terms, that each mutation manifests slightly differently, although there are major criteria that link us together.

And, it seems that the frameshift mutation Meghan inherited from me, is likely at the root of our vascular problems.

Another symptom I have dealt with for years, explained, but not gone after this PTEN diagnosis.

I had an appointment with a highly recommended vascular surgeon on Tuesday. I expected what I have come to expect.

There was the sonogram.  The attempt at settling out the roadmap of veins, so many of which have already been treated. It is no easy task, and I leave them at a disadvantage because I have had my vascular work done in several different facilities.  (You can read that as difficult to please.)  Though for the first time I was told that the deep veins in my left calf are so dilated that they are at great risk for blood clotting.  The blood sits stagnant there.  That apparently is not the most intense of my issues.

winding-road-4849145

Then there was the visit with the doctor.  A young, bright eyed, refreshingly competent doctor who was very interested in my Cowden’s Syndrome, and my previous abdominal surgeries.

He asked if things got worse with the vein in my leg after the tubal ligation in 2011.

“You mean the hysterectomy?”

“No, that was the following year.”  He was reading from a sheet I had given him.  He was right.

I guess somehow I had blocked the tubal ligation which had become unnecessary less than 12 months later when Cowden’s and a uterine polyp (post breast cancer) necessitated a full hysterectomy.

“I’m not sure, why?”

“I am wondering what is causing these veins to turn.  And I have to look at every possibility.”  As he places his hand on my abdomen.

“How long had that pulsing been there?”

“Um… I don’t know.  (Feeling incredibly dumb for ignoring my body) Why?”

“Well, I won’t even consider surgery without some major tests.  First I want a full abdominal CT to check for vascular malformations.”

Now truth be told I wasn’t shocked to hear this.  I had a nagging, behind the ear voice telling me to get that pulsing checked out.  But I had met with a vascular surgeon in July and that turned train wreck.  So I was a bit delayed.  I also I guess didn’t really like the fact that he could feel the pulsing too.  I thought, well I thought that was just mine….

So I left with a script for the CT, waiting for authorization, and a script for blood to assess my kidney’s capability to handle the CT dye.

And as I tried to process that, I thought of everything.  I ran the gamut from aneurysm to AVM.

As I washed my hair the next morning (I do my best thinking in the shower) I had one more thought.

MY SPLEEN!

respectthespleen

I had never mentioned my spleen.  The hamartomas/lymphangiomas/masses on my spleen, the largest of which are 4 cm round.  I was told they are vascular.  I have been watching them with periodic MRIs and I was told as long as they stayed stable I could keep my spleen.

I really hope they aren’t misbehaving.

I like my spleen.

spleen

I also like that this doctor cares enough to check everything out first.

Pain in the butt?  Absolutely.  Life-changing?  Maybe.

The other doctor was ready to take the vein out in the office with no prior testing.  This guy told me I need an ER and tons of pretesting.  You know what?  At least he takes things seriously.

So now I wait.  For authorization.  For testing.  For a whole host of inconvenient to schedules to processes.

And fortunately there isn’t much time to waste on worry.

Life is busy.  We squeeze what we need to into the crevices.

We can’t let Cowden’s Syndrome distract us from this life that needs living.

This one is a favorite of a dear internet friend :-)
This one is a favorite of a dear internet friend 🙂

 

3 thoughts on “Vascular Road Maps and other Cowden’s adventures…

  1. I love your attitude. Yes, it is important to live each day to the fullest, even when we have to detour! I am wishing for a positive outcome from your new, concerned doc!!!

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