Life with MS & EDS

April 18, 2011

Well That Did Not Last

Filed under: Uncategorized — by mseds @ 8:33 pm
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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!

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March 31, 2011

Allergic to Band-Aids

One of the things I was most worried about during my recovery period after CCSVI angioplasty isn’t something that most people even think about.  I was concerned about band-aids.  I’ve always had trouble with them.  What they do to my skin is usually worse than the wound I’m trying to cover.  During college I had an angioma removed after it swelled and started to bleed.  When I came back for the follow-up, the dermatologist remarked how bad the skin looked from the band-aid and that the area where the angioma was removed looked great. That was the first time anyone qualified actually said I was allergic to band-aids.

I discovered that my skin could generally tolerate just one type of band-aid, Curad’s Sensitive Skin Bandages.  They became hard to find, so I bought a case of them on Amazon, fearful that I’d be stuck using gauze and paper-tape in the future should they ever stop making them.  I’ve tried other brand’s “sensitive skin” band-aids with zero success.

I can use the Curad bandages on my fingers without problems, but it seems that they aren’t quite good enough for other parts of the body.  I came home from angioplasty with guaze and a clear plastic-like cover over the incision site.  I left that on for a few days and then changed over to my Curad sensitive-skin bandages.  That went well for a couple of days, but then I started seeing irritation.  I could start to see the imprint of the bandage on my skin.  The incision hadn’t healed well enough yet for me to feel comfortable going without some kind of covering, so I left the band-aids on.  Stupid decision.  Here’s the result:

Angioplasty incision, surrounded by reaction to band-aid

You can kind of see the outline of the band-aid, even though it’s been off for almost 24 hours.  That looked worse about a day ago.  The lovely rectangle around the incision is from whatever they use to affix the gauze to the flexible bandage.  That part looked even worse last night.  If you look closely at the bandage, you can see a shiny outline surrounding the gauze.

Curad Bandage: Note the shiny area around the guaze

It is the shiny area that made the raw rectangle around the incision.  Lovely, eh?  Yesterday afternoon I changed back to using gauze, but gave up on that and decided it was time to just give up on bandages.  I’m trying to leave it open today, but when a wound is at the very top of your leg, it’s a hard area to air out when it’s 40-degrees outside and I need to be sitting at my desk all day.

I hope one of these days someone will make a latex-free, sensitive skin band-aid that doesn’t destroy my skin.  (Note that the Curad Sensitive Skin bandages are NOT latex-free.  Perhaps that’s part of the problem, but it really does seem to be the adhesive that caused the problem.  It’s hard to tell.)

~UPDATE~

A couple of days ago I spent my lunch break at CVS in their first-aid area.  I looked at tons of various bandage options and decided to try two things.  I bought a box of latex-free fabric bandages as well as a box of gauze pads and paper tape.

When I got home, I put the latex-free bandage on a random spot on my thigh to see what it would do.  So far, it’s red around the outside of the bandage.  While I still don’t know for sure if I have a latex allergy, my skin definitely has issues with adhesive.

On the angioplasty incision, I put gauze and paper tape.  Not only is paper tape really difficult to keep on given the wound location, but the parts that did stick made my skin red!  Isn’t paper tape supposed to be one of the safest things on skin?  Go figure it would be a problem for me!

My husband came up with an idea.  He covered the offending part of the Curad Sensitive Skin bandage with gauze.  Since it takes a few days for the outer edge of those bandages to mess up my skin, we figured this would at least buy me some more time for the incision to heal.  I just wish the darn thing would develop its own scab already.  I’m pretty sure the Lovenox I’m on is slowing the healing process.  It’s been two weeks and the area is still rather raw.  My fingers are crossed that his solution works.

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.

July 31, 2010

Angioplasty – FINALLY!

Filed under: Uncategorized — by mseds @ 11:12 am
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Persistence pays off!  Yesterday I finally had angioplasty.  I didn’t want to say anything prior to the procedure because I didn’t want to get my hopes up again just to have things canceled.  I told only a handful of people.  They asked if I was nervous and I replied that I was far more anxious about things getting canceled again than I was about the actual procedure.  I tried hard not to count chickens before the hatching of eggs.  That’s a pretty big challenge for me.

So, here’s the story.  A couple of months ago I started calling around to all of the major hospitals within driving distance.  I spent hours on the phone, usually getting the run-around.  I started out by asking for Interventional Radiology.  I’d explain why I was calling (“Hi, I’m calling because I have collapsed jugular veins and wondered if you could do angioplasty for me.”)  Usually I’d get the response, “I’ll transfer you to ___” and that would happen several times at each hospital.  The funniest pass-the-buck was at the hospital where Dr. Specialist is.  After being transferred several times, someone sai,d “You should be talking with neurology, I’ll transfer you,” at which point I said “Thank you anyway, goodbye.”  It was pretty frustrating, to say the least.

At one institution, I spoke with a really nice person who thought she could help me.  We chatted a bit and she took my name and number, saying that the person she wanted to talk with was not in.  I think I called there on a Thursday.  I didn’t hear back, so I thought it was a lost cause.  The following Tuesday the phone rang and they called to book a consultation with a nurse.  I was hoping for a doctor, but would be okay with baby steps, so I took the appointment.  On my way to the appointment, as I approached the highway, my cell phone rang.  It was the hospital calling to cancel.  However, this was a good thing in this instance.  They were calling to switch it to a consult with a doctor and he couldn’t see me that day.  So I headed home and we rescheduled for a couple weeks later.

About two weeks ago I drove a bit to meet with the doctor and the nurse.  We had a great conversation about MS, CCSVI, and the hope open veins would bring.  They were glad to help me out and do the angioplasty.  I asked if they’d need IRB approval and they didn’t think they would.  It seemed that most facilities were getting through at least a few procedures before being stopped, so I was hopeful this would work, but wasn’t 100% convinced.  We booked surgery for two weeks later.  I was hoping for sooner, based on the experience last time where waiting turned out to be the wrong choice, but I think the two week wait ended up being a good thing.  It allowed them to touch base with other doctors doing the procedure and to do some more research.

Yesterday morning finally came and I still wasn’t sure this was going to happen.  We arrived about 30 minutes early.  It was either get an early start or be stuck in traffic.  Best to get up a bit early and not be stressed about the drive! I couldn’t sleep anyway!  When I arrived, the administrative person at the front desk had obviously not yet had her morning coffee.  She was less than helpful.  I wasn’t on their “out-patient surgery list” and I didn’t have a prescription in hand (my pre-op letter didn’t mean much to her,) so I was told to take a seat until someone from Radiology arrived.  I guess it’s not every day that a 30-something year old walks in for angioplasty.  I can understand why this could be strange, but she could have at least been nice about it.  Thankfully that woman was called away to a meeting (I hope it was a customer service class!) and another woman took over.  She recognized me from when I checked in for my consult and she was extra helpful.  She realized I was a “special procedure” and got things moving along for me.  Soon enough I was checking in and signing all the waiver forms.

Soon thereafter, the nurse came around to take me to the Special Procedure room.  My husband came back with me and we got to talk with the doctor (let’s call him IR Doc II.)  He asked if I had any questions, which I did, of course.  The first thing I asked was if he wanted to remain an “undisclosed location.”  I warned him that if his name got out and he wasn’t ready, he could have a thousand people instantly on his doorstep and would be swamped.  He spoke with the doctor who had to cancel my original plans (IR Doc I) and he’s getting about a 100 calls a day even though he’s currently stopped and awaiting IRB approval for a trial where 50% of the patients will have a placebo surgery (don’t get me started on that topic.)  IR Doc II said his office is planning a meeting next month to come up with a strategy.  I also asked him about the approach.  He said he was going to do right side entry (most right handed doctors prefer to work from the right side and he could access all of the areas he needed that way — not sure that was completely the case given new research, but that’s okay for now.)  I also brought up the imagery from last time.  It showed problems with the right jugular while sitting up, but not laying down.  He said he was going to be measuring pressure along the way (the “gold standard”) rather than judging based on how things look.  When going through the risks, he of course mentioned that my veins could narrow again.  He said we may need to do this again and joked that it was kind of like an oil change.  I liked that reference.  We talked about a couple of other things and then I was off to get changed.

Once in the Special Procedure room, they warned me that it was going to feel like I was being attacked from all angles.  It did sort of feel that way.  I lay down on the table and a camera thing was above me.  Two monitor screens were also there.  There were two nurses.  One stuck those cardiac stickers on me and we had small-talk while the other nurse tried to get in the IV.  I warned them the IV would be the hardest and worst part of this whole experience.  Sure enough, he couldn’t make it work on the left side, so he switched to the right.  Thankfully he found a great candidate and was able to get it in on the first try.  They put a blood pressure cuff around my left calf which was set to go off every 5 minutes.  They also had to shave a bit in the area where the catheter would enter.  That was about it for prep work.

I had the option of IV sedation or no sedation.  I wanted enough to relieve anxiety.  Unfortunately I think I got too much because I was way more relaxed than I expected.  I think I slept through a lot of the procedure!

There seemed to be a lot of people in the room, but I couldn’t turn my head enough to see who was there.  I know the two nurses were there along with the IR Doc II and his assistant, but I’m not sure who else.  They gave me local anesthesia at the insertion point and I didn’t feel much after that.  They place in something (sorry, I forget what it’s called) that they use to thread everything through.  I couldn’t exactly follow what they were saying, but I’m pretty sure they were swapping out different catheters and/or different size balloons.  I know they did the right vein first.  That seemed to go well.  I can’t explain how it felt because I was pretty out of it.  I’m pretty sure I napped quite a bit.  I woke up more on the left side.  They had trouble getting into the left jugular.  They had to stop and do a doppler ultrasound to see what was in the way.  Apparently a valve or something was blocking the path.  He said to take a deep breath and bear down.  Thankfully he was able to get through.  I asked to make sure they checked the azygos, which he said he’d do next.  I think I dozed off after that again.  When I opened my eyes again, the assistant and nurse were there.  The assistant held pressure on the insertion site for about 15 min (I think) and then it was time to take me off to recovery.  It was around 11:45 by then.  I asked what I missed while I was napping.  They had to balloon both jugulars, but not the azygos.  (Based on things I’ve been reading, I have a feeling I’ll be back to have the azygos done in the future.)

I was extremely bored in recovery.  I’m used to post-op being an area where pain management is done, but that wasn’t needed after angioplasty.  As with other procedures and surgeries, I was freezing cold.  They gave me more warm blankets and I started feeling better.  Hospitals are always freezing cold and I think the IV sedation makes me feel even colder.  I had to lie flat, which was fine.  I asked if my husband could come back, but they said there wasn’t space.  They did eventually track him down (another hospital administrative personnel problem that I’ll let him elaborate on if he wants) and brought me by book.  Can I tell you how hard it is to hold up a 600 page paperback while flat with your non-dominant hand?  That didn’t go well.  I gave up and started talking with the nurses there.  They were excited to have an MS patient getting treated for CCSVI.  Some of them knew others who have MS.  I explained CCSVI and some of them wrote down notes to look up more info and pass the word along to others.  That was neat.

An hour finally passed and I was moved next door where my husband could finally join me.  I had to lie still for another 2 hours, but they did slightly incline my head so that I could sip on juice.  Eating a sandwich while almost flat was interesting.  The best part was that I could finally get to my smart-phone and email out a short update.  Unfortunately a blog post from that position on a small device wasn’t going to happen! They continued to monitor my blood pressure, pulse-ox, and insertion site.  I found it very encouraging that my pulse-ox was 96!  It had been 92 at my appointment with IR Doc I.

Once the IV was out (why is it that the thing I hate most about hospitals is the thing you have to deal with from the moment they start until the moment they do discharge?!), I felt great.  My left jugular area was sore and my body was stiff from lack of movement, but otherwise I was fine.  I think my husband was more tired than me, but he didn’t have a series of mini naps all morning.  The nurses helped me get dressed (hospital policy, I think.)  I was given a head’s up to wear underwear that wouldn’t have a seam at the insertion point, so that was a great tip.  Wearing exercise shorts was also a smart choice.  My husband went down to get the car and a nurse wheeled me out.  I was sent home with just a band-aid on my upper leg and tape/gauze across the IV spot.  I was told no driving for 24 hours, to take it easy the next day, to stay hydrated, and to monitor the insertion point.  So far, so good!

I slept great and woke up feeling refreshed.  My left jugular is still sore, but better than yesterday.  Other than the fatigue being gone (so far) and feeling like I actually have oxygen flowing through my body again, I can’t report any other changes.  I was really hoping that the optic neuritis in my right eye would improve, but no such luck.  I think there’s too much damage to the optic nerve.  Some of the weird twitches and tingles I used to get seem to be gone.  Before surgery, whenever I’d yawn (which was pretty often), I’d get a weird twitching in the area of my right tricep.  That hasn’t happened since the waiting room before surgery!

I’m taking it easy today, but plan to test out the new me tomorrow!  I’ll keep you all posted.  Thanks, everyone, for all of your thoughts and prayers!!!  It’s wonderful to have normal blood flow!!

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