I'm headed to NYC

So I haven't updated IN forever, so here it is, to the best of my ability, limited as it maybe.
I have been having tons of problems lately, and quite frankly they do not know whats causing them.  It could be TIA's, it could be seizures, it could be complex migraines, who really knows at this point, the doctors here sure don't.  My "good" doctor Dr. Foley thinks it's my FMD and hence my trip to NYC. 
I will be going out to see Dr. Jeff Olin who is the top FMD doctor in the country, and at that time (we hope) he will be deciding if I will be needing stents or maybe angioplasty in my carotids to hopefully stop these "events".  Which is what I have now started to call these almost daily things that have been happening.  What else has been going on is my right side has been going almost like paralyzed where my face droops and I cant move my arm or leg for anywhere between 10 minutes to an hour.  I then get a God awful headache and extremely tired afterwords, and it usually means my day is shot.  For those who have seen me have them they say I get totally pale in the face too and I can't smile normally either.  Its very scary stuff to say the least but really its all I can explain about it now.
I have just been re-scanned with MRI/MRA and there are no new findings at all so there's nothing to report with that, and it does show that I have not had a stroke, so this is a good thing. 
So wish me luck in New York because the whole reason we are going is to hopefully get answers and surgery.

It's been awhile...

Well it's been awhile since I've posted so I thought I'd give a quick update on what's been going on in the health department.  I can thankfully say, not much.  I have been pretty much recovered from surgery now for a while and been feeling pretty good.  I still don't have much of an appetite and still have nausea and to be honest I am not sure if this is normal or not.  The weight loss has slowed but due to the loss of appetite I am still losing some weight.  I think its a good thing but were a little concerned.  I will address this with Dr. Foley the next time I go in and see if this is "normal" or what.  But for now I'll just deal.  I also need to go in for some blood work to see if my levels are normal for my cholesterol and what not (should have done that in January) talk about procrastination!
Other than that nothing much is new, still struggling through school, its getting tougher for some reason, I took some (what I think are hard classes) this semester (Math, English and Biology) and they are proving to be a challenge now.  But spring break is just around the corner and we are looking forward to a much needed vacation to Florida to visit Leanne's parents which see hasn't seen in like 4 years.  And on a side note I get to see the ocean for the first time ever!  So that's about all for now, I will try and post a bit more often once school settles down a bit.
Love to all,
Chane

MALS Surgery & Update

A post from Leanne, to give Chane a break…

Time for an update and some more background info for the curious :-)

Last Tuesday, Chane had surgery to fix one of the two rare(ish) artery diseases she has. At this time, there has still not been surgical intervention for the dissection in her carotid artery caused by FMD. This surgery was to correct MALS, or median arcuate ligament syndrome. For those who love Google, it is also known as CACS, celiac artery compression syndrome. So what does all that medical jargon mean?

There is a ligament that runs close to the diaphragm (I haven’t quite been able to pinpoint how best to explain where it is, but this is a generalization, see picture below - it's the first item from the list on the right).

Retrieved 3 Feb 2011 from: http://www.imaios.com/en/Media/Images/e-anatomy/thoracic-wall-breast-illustrations/diaphragm-intercostal-muscle-e-anatomy-imaios

In MALS, this ligament is a bit off in one’s anatomy and it comes down to compress the celiac artery, which is one of the arteries that feeds the stomach & digestive tract. One of the best analogies of arteries is the “straw.” So think of a straw, now imagine this ligament coming down and squishing it. Might cause some blood flow problems right? Yep sure does. When your digestive system doesn’t get the blood flow it needs to function, well, stuff doesn’t function right.

So how exactly did this affect Chane? She lost her appetite. She had pain after eating, pain that continually got worse and was quite unbearable towards the end. She had near constant nausea. She lost weight, a lot of weight, especially for someone not actively trying to lose. In general she felt like crap. We didn’t test, but we believe that she was beginning to suffer from malnutrition because her digestive system was unable to effectively absorb nutrients from what little food she was able to keep down. By the time we suspected it was that bad, we knew the surgery was coming so there was no point.

The surgery itself was to snip the ligament so that it wouldn’t compress the artery. There was always a chance that they would need to do more work, such as an arterial bypass, if they got in there and found that things were worse than believed. But the surgery went well! Chane had a tag-team of surgeons working on her. The majority of people have an “open” surgery for something like this. Well, it’s been popping up more and more in medical literature that it is possible to perform the procedure laparoscopically. So there was a laparoscopic surgeon to attempt this method, but also a vascular surgeon who had performed this surgery many times before as a kind of “back-up” in case they were unable to proceed laparoscopically. It took 3 ½ hours, but laparoscopy was the way to go! Much shorter recovery period, and Chane has the distinction of being a pioneer. It was the first laparoscopic release of the median arcuate ligament done at Fairview. Pretty cool eh?

So. Now for the update, but I’ll be quick. Chane is recovering pretty well, had a bit of a set-back recently when a hematoma (build up of blood) formed near one of her incisions, compounded by a bruised muscle in the same vicinity, but doctor’s orders of heat, ice, and meds is getting her back on track. She has already had an increase in appetite, which is such a good thing! Time will tell how truly successful the surgery has been to ease her tummy woes, but so far so good. Once she gets past this “dumb bruised muscle” she’ll be feeling much better :-)

As a side note, I just want to say that this does not fix all of Chane’s medical conditions. Unfortunately this does nothing for the FMD and she will still be affected by that. But at least she will have one less thing to worry about (as her mother put, which is so true!).

Thank you all for the well wishes, prayers, cheerleading and support these past few weeks!