Life with MS & EDS

April 18, 2011

Well That Did Not Last

Filed under: Uncategorized — by mseds @ 8:33 pm
Tags: , , ,

It’s been about a month since my angioplasty procedure.  I’ve noticed small improvements, but not the big things others have experienced.  I thought maybe once I was off of the Lovenox that I’d notice more of an improvement.  My incision site and band-aid disaster did heal (for the most part, but you can still see the band-aid outline!) after being off of the Lovenox for a bit and the little black and blue marks at the injection sites faded fairly quickly.  However, the fatigue hasn’t faded as much as I’d hoped and I’m definitely not seeing any improvement in my optic neuritis.  Those are my two biggest complaints, so those are the symptoms that get the most attention.

Today I think I found out why.  I finally had the ultrasound of my thyroid.  When I had my CCSVI ultrasound, Dr. Sclafani found nodules on my thyroid, so I followed up with an endocrinologist who ordered the dedicated thyroid ultrasound to make sure everything is okay.  After the ultrasound technician was finished she asked me if I knew that I had something going on with my jugulars.  I explained that I had just had angioplasty for CCSVI.  I said to the best of my knowledge, the right jugular is open and doing well.  I explained that the left side has a valve issue.  She confirmed what I thought was the case.  The lower part of the jugular was open and looked normal, but the part higher up was definitely not normal.  She didn’t expand on her comment.  I asked to get a copy of the imagery, so I’m picking that up on Wed.

I sure hope that someone, somewhere develops a stent that is safe for use in jugulars.  It seems like that might be my only hope of having proper blood flow.  It’s pretty disappointing, but I’m not giving up hope.  Dr. Sclafani and other brilliant doctors who are dedicated to helping us are bound to come up with something!


  1. I’m sorry it didn’t last, I’ve had double vision for over 16 years at first it wasn’t to bad but the images are now getting further apart and was told nothing can be done to fix it. I asked about CCSVI he said the nerve is to scared. I know what you have is different problem then mine but Seeing and all that comes with it, has been one of the hardest to deal with. Take care and never lose hope dedicated people are working hard to find ways to help all of us.

    Comment by Mary K. Mennenga — April 19, 2011 @ 11:37 am

  2. Thanks, Mary! I’m pretty sure my optic nerve is too damaged at this point. I wonder if I had my veins opened earlier if that would have made a difference. I sure hope it helps other people who have nerves in better shape. I know folks have noted improvements in their vision after angioplasty. Hopefully our docs are wrong and improved blood flow could still make a difference! I can’t imagine having double vision. Sight is such a hard thing to have to worry about. Thankfully the vision in my right eye is just dim and cloudy from the optic neuritis, but my left eye tends to balance things out. The nystagmus is pretty darn annoying though! Have you found out what your veins look like?

    Comment by mseds — April 20, 2011 @ 6:33 am

  3. My veins are in good shape, blood flow is as also. I was hit in the eye with a baseball bat when I was young,so the one eye has always been weak and the vision in that eye wasn’t as good.

    Comment by Mary K. Mennenga — April 20, 2011 @ 9:29 am

  4. You just can’t seem to catch a break! Question: Do you think it is double vision or nystagmus when things look okay and then drift apart? I never reported true double vision because I always thought it was fatigue making my eyes so tired. But lately it happens more and more unless I really fight to focus and stay focused. I had my eyes checked about three years ago.

    Hang in there, and keep pursuing every lead. I also had a thyroid issue tn years ago, and it went toxic on me so I had to have it irradiated. But my jugulars are clear as of 6 months ago. Too many things contribute to the fatigue, I really understand where you are coming from. And others think fatigue is something you can just get over with the power of your will. Yeah right.

    Comment by karen — May 1, 2011 @ 5:43 pm

  5. No it’s just double vison for me, it was the first thing missed by Doctor’s with my m.s. Fatigue is I think the biggest piece of m.s. that’s the hardest to get people to understand.

    Comment by Mary K. Mennenga — May 1, 2011 @ 6:53 pm

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