Life with MS & EDS

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!!

July 14, 2010

Achieving Normal

Filed under: Uncategorized — by mseds @ 7:24 pm
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During my first quarterly Rebif bloodtest, Dr. Generalist had ordered a Vitamin D test.  As you may recall, I scored a 39.  I was told that was “normal”, but most online advice says you need to be over 50.  So, instead of keeping with my 3,000ICUs of Vitamin D daily, I added another 2,000, even though it wasn’t doctor-recommended.  My total daily Vitamin D supplement was up to 5,000, plus whatever I got from food (e.g., milk, Vitamuffins, etc.)  I absolutely noticed a difference in my energy level.  I’m still chronically fatigued, but I am no longer on the verge of tears because of it.  It becomes very obvious to me and my husband when I forget to take the vitamins.  I knew there was a big difference, but I didn’t have proof.

So, I brought this up with Dr. Specialist when I saw her last month.  I had asked her about Vitamin D at some point last year.  At that time, she wasn’t on board with its benefit and didn’t recommend blood tests to check levels.  She’s since changed her tune now that more evidence is out there.  She wrote a script to check my D levels during my 2nd quarterly Rebif blood work.  Sure enough, the results confirmed what I’ve noticed.  My level is up to 61, definitely over the 50 I was hoping to exceed.  The extra 2,000ICU daily brought my levels up by 22.  I wish everything was that easy to fix.

I’m enjoying my small victory and success with going against doctor’s orders to do something that was clearly in my best interest.

July 8, 2010

New Link between MS and EDS?

Filed under: Uncategorized — by mseds @ 10:37 am
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This morning I came across a post at This is MS that discusses a presentation made by Dr. Guilio Gabbiani from the Centre Medical Universitaire in Geneve, Switzerland to a conference in Bologna, Italy.  I wish I had seen this before as it completely changes my perspective on my diseases.

Dr. Gabbiani took five specimens from internal jugular vein tissue removed by Dr. Zamboni from patients he treated endovascularly from areas not damaged by angioplasty and compared them against healthy control tissue.  His finding: MS patients had significantly more smooth muscle cells than the non-MS controls.  He found that there are less Collagen I type fibers and more Collagen III type fibers in MS patients.  It is thought that the connective tissue in MS patients switches from collagen I to collagen III.  Apparently it’s known to happen in the arteries, but finding this in the veins is a new discovery.  This could be a critical finding for CCSVI!

During the EDS diagnosis process, I learned that one of the major concerns that needs monitoring is cardiovascular health.  I’ve had an EEG for a baseline and so has my daughter.  I was told to get her EEG done every three years and annually during times of rapid growth (puberty.)  I thought of this in passing when I first heard of CCSVI and when I found out that my jugular veins are constricted.  Somehow the link didn’t set in until I read about Dr. Gabbiani’s findings.

It makes complete sense that my vein problem could be related to my other connective tissues issues.  How amazing would it be to find out that my MS is even more related to my connective tissues disorder than to an auto-immune disease?  I think there is a ton of research that needs to happen in this area, although I’m skeptical it will ever get funded.  I’m on a mission to find a doctor who knows about EDS and vascular surgery.  Since EDS already has a known vascular connection, I think this will be a much better avenue for me to pursue than talking with neurologists, who are obviously dead-set against discussing CCSVI with me.  I’ll let you know if I have any luck!

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