Life with MS & EDS

March 21, 2011

Angioplasty, Round 2

As a kid, I always had trouble running.  The “runner’s high” that others got left me nauseous, made the world turn black, muffled my hearing, and resulted in me falling to the ground.  Maybe I was allergic to adrenaline?  I’d also black out in warm department stores and from strong odors.  I saw a neurologist twice while in grade school, once in elementary school to find out why I was passing out while running and once in high school to find out why chem lab made me faint.   I was never given a reason for my fainting; just excuse notes to get out of whatever was triggering it.  Years later I may finally have some answers.  What does any of this have to do with CCSVI and angioplasty?  I’m getting there….

I first had angioplasty to open my jugular veins this past summer.  Things were great for several months.  The best part was that I had more energy.  The fatigue was basically gone.  Around Christmas I noticed the return of some symptoms.  I was getting really tired again, my arm strength had decreased, the toe cramps were back, my arms were falling asleep again, and the tingling above my upper lip was also back.  I was pretty sure my veins were closing back up.

I was fortunate enough to have been on Dr. Sclafani’s wait list since last year and heard from his office at just the right time.  I drove up to Brooklyn to have my ultrasound and sure enough, my jugulars were refluxing again.  We set up a time for angioplasty.

I must admit that I was more nervous this time.  Unlike last time when I was heavily sedated, I’d be awake through this procedure.  I had talked with Dr. Sclafani after the ultrasound and was very impressed with his knowledge and passion.  I had heard great things about him from people I trust, so I knew I was in good hands.  That helped calm my nerves.  His nurses were also great at keeping me calm.

Dr. Sclafani spent time talking with me and my husband for a while before the procedure.  Although admittedly not a neurologist, he did a basic neuro exam, which was pretty telling.  He was able to see that my right eye drifts and doesn’t exactly follow the way I want it to.  We talked about other symptoms and experiences, including Ehlers-Danlos Syndrome.  He had recently seen another EDS patient, so he was up to speed on the basics, but it’s still new to him.  We talked briefly about something called Dysautonomia and his suspicions that this might be something that affects me.  It was the first time I had ever heard that term.  I figured I’d ask him more about it after the procedure.

The procedure itself went pretty well.  I even got to pick the music we’d listen to.  In a way, I was glad to be awake.  It was good to be able to talk with him and to be part of the decision making process.   Not to scare anyone off from doing this, but there was some pain involved during the ballooning, but nothing worse than labor pains and Lamaze breathing came in handy.  My right jugular was still open from last time, which was good to hear.  The valve was a little off, but not enough to be a concern.  The left jugular was a problem once again.  He was able to get into it without the problems the first doctor had, but he wasn’t able to get the balloon to fully inflate.  We talked about some options.  One would be using a larger balloon and seeing if inflating it more would work, but he was worried the vein couldn’t handle it.  We also talked about doing a stent.  Stents worry me.  I don’t think they have made ones that are right for veins yet, so I passed on that option.  We decided to leave things as good as he could get them with the conservative approach, which was still more open than the vein was, and see what happens in three months.  I’m pretty sure I’ll be back on the table for the left jugular!  After that he checked for May-Thurner, but didn’t find any sign of issues with the iliac vein.  Then it was on to the azygos.  Last time, the doctor didn’t see anything wrong with the azygos.  Thankfully Dr. Sclafani has started using internal ultrasound to really see what is going on.  From the outside, the azygos looked wide open, but from the inside he could see that it was much smaller.  He ballooned the azygos in two spots.

Recovery was much different this time, too.  My husband was allowed to come back right away and a nurse was with me most of the time.  I still haven’t mastered drinking while laying down, but did figure out that if I turned my head to the side, juice wouldn’t go up my nose.  After resting a while, it was time to take out the sheath, the tube they use to thread everything in through.  That’s where things took a turn for the worse.  He pulled off the adhesive and probably underestimated how stretchy my skin is because it didn’t pull off as easily as it does on other people.  The “just rip off the band-aid” approach doesn’t work on me.  I need to remind docs to hold down my skin as they go.  After that, he started to pull out the sheath.  I instantly got nauseous.  My pulse and blood pressure plummeted.  I started to sweat.  It was awful!  He got it out and as he was holding pressure on the insertion area, my body started to cooperate again.  I almost went into shock.  Not good.  We started talking about Dysautonomia again.  It does seem like something I need to learn more about.  Apparently my body doesn’t respond as it should to things like adrenaline.  Most people feel pain and their pulse increases.  The “fight or flight” instinct kicks in.  Not for me.  My body shuts down.  It’s kind of scary.

Dr. Sclafani’s instructions were to go back to the hotel and relax and to order in dinner, so we enjoyed pizza in bed.  While lounging, I decided to do some research about Dysautonomia.  Dysautonomia is where the automatic nervous system malfunctions.  There’s a whole host of things associated with it and people with Ehlers-Danlos Syndrome seem to have this more often than others.  I haven’t yet learned enough about it, but decided it is time to finally find an EDS doctor.  I haven’t located anyone in the Philadelphia area, so it’s time to widen my radius.  I have heard some folks mention someone down at Johns Hopkins.  That wouldn’t be a bad drive.  I’ve been focused so much on the MS, that I’ve been ignoring the EDS, thinking it wasn’t a big deal.  Then a thing like almost going into shock from something pretty simple happen and it makes me rethink things.  I feel like I have a lot of puzzle pieces scattered on a table and I can’t seem to form a complete picture.  There are pieces that are clearly MS, some that are clearly EDS, and then a bunch of others that seem to be both or neither.  I wish there was a doctor out there that could put the whole thing together for me and to help me make sense of things.

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4 Comments »

  1. I have EDS, sometimes when I read your posts and you talk of your symptoms I have wondered if you have dysautonomia (questionable spelling here) sometimes known as POTS, many many with EDS suffer with it. Along with a whole host of other stuff, mitral valve issues, nerve pain etc. Although the blog I am giving the link to below is not about EDS it is a witty, intelligent story of Michelle a woman whose life has been devastated by dysautonomia. (sp) The link is to a page on her blog which was written a while ago explaining POTS, the rest of the blog is just fantastic.

    http://bobisdysautonomia.blogspot.com/2009/07/what-hell-is-dysautonomia.html

    Michelle has recently had similar surgery to yours, possibly the same but my brain is a little mushy tonight so don’t rely on me for absolute facts!

    I often think there are many similarities in symptoms between MS and EDS. Tingling, numbness, tiredness beyond exhaustion and more. Although the causes are different. I have made friends with a few bloggers with MS and find it remarkable how much we mutually understand each others conditions almost by default. I am not surprised your EDS has taken a back seat in your mind with all that you have been going through.

    With POTS/dysautonomia I have found and also through learning from others with the same condition (medical advice also) that salt and hydration are good friend’s. Sometime back now my husband required a low salt diet, well goodness me, I was spending most of my time, having white outs, grabbing for furniture as I felt the world go black around me. So those with POTS are generally advised (although always check with a doctor) to up their salt intake because it helps raise the blood pressure when those sudden drops happen. I always have in my bag an open bag of salted cashew nuts as need to pop a few in my mouth when I feel the rush of blood away from my brain. Water to hydrate an essential. I take a beta blocker too.

    Sorry for the incredibly long comment but I think this facet of EDS is often undertreated and much misunderstood both by those with EDS and unfortunately the medical profession.

    I think it essential that your specialist is up to date with his knowlege of EDS in treating your MS etc. So that your treatment is I guess in the best interests of ‘all’ of your conditions.

    I totally understand why EDS may have been taking a back seat but agree with you that perhaps its time to put it in the front seat even for a while so that its not always lurking in the background possibly causing you problems that are not addressed because through necessity you have had to focus on other things.

    There are a few good sites dedicated to dysautonomia/POTS and googling POTS will bring up a really informative site the name of which has slipped my mind. For fear of sounding trite I will be brave though and say you are not alone if you do indeed have POTS/dysautonomia ie: autonomic dysfunction as a large proportion of those with EDS do have it. Many as is common with EDS being labelled hypochondriac’s or suffering with terrible anxiety when in fact it is their autonomic system which is the problem.

    In a way I really understand why you haven’t had the EDS investigated/treated more because it is so much more rare than MS. Finding a medical professional who has a proper understanding of the EDS is so much more difficult in comparison to MS. I have great empathy for you as I simply cannot imagine what it is like to have the two co-currently. I found a medical research publication a while back which stated that those with EDS have a higher incidence statistically of having MS than those without EDS.

    Anyway before this comment becomes the longest in the history of blogging if it isn’t already! I should go but before I do. I think there may be a doctor out there who could put the two together and help make some sense. Because I live in the UK I have no personal recommendations for which I’m sorry but I do think if you do a little research you will find what you are looking for. I wish you luck and hope you don’t mind this inordinately long comment.

    Comment by Achelois — March 21, 2011 @ 10:57 pm

  2. Its nice to meet someone with the same problems as I.. I have MS and EDS.. and Dysautonomia I suffer from POTS.. I would love to become your friend so we could learn from each other.. I live in Florida. Wow you have a great blog here.

    Comment by Lori — March 24, 2011 @ 9:34 pm

  3. Hi Lori! It’s great to know there are others out there like me. It would be great to get to know you. Feel free to drop me a note!

    Comment by mseds — March 24, 2011 @ 9:42 pm

  4. I just realized I never replied to say thanks for this info! I really appreciate the long post! I was excited to know there was a blog about this and went right there to start reading and didn’t get back to you to say thanks. I think I finally found an EDS specialist and am in the process of making the appointment. The questionnaire is complete and medical records are on their way, so hopefully I’ll have an appointment date sometime soon. There are so many overlapping symptoms that it’s hard to know what is causing what. I am concerned about the dyautonomia more than I am about other symptoms at the moment. That experience freaked me out quite a bit. I’d like to know what to tell future doctors so that I can avoid things like that from happening. Thanks again!!

    Comment by mseds — April 1, 2011 @ 7:48 am


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