My friend who went to Stanford with me in 2009 and I have a mutual friend from way back.
He befriended his supervisor back in the 80's and this is his daughter we are discussing.
She is mid 30's and has an interesting history:
She lost her mother to spinal meningitis about 10 years ago, and has had MS from her 20's. As a child, she had had issues with walking properly and maintaining balance, here's the kicker; after much testing and scanning, they deduced that the issue was her posture of all things. Once that was corrected the problems seemed to go away. Then in her 20's, here comes MS, and guess what one of her main issues is now? Walking problems. Sleeping problems. Fatigue problems. I'll have to get with her more on the exact nature of what led to the MS dx in the first place.
So my friend was talking to our other friend, and just happened to mention the whole Stanford thing, so he calls me and tells me about this very special girl, and would I mind discussing this with her? Well that's a dumb question
I spent a goodly amount of time "splainin things", sent her Marie's book, and she did the rest herself. Yes, I told her about her limited options for the LA area, and if she had a rich uncle to fly back East to see Dr. S. She doesn't, is a single girl with two very protective Aunts who I understandably had to pass muster with, and thoroughly (very) explained the pro's and cons of different methods of treatment, about stents, about valves, and why we may want them etc. etc.
I was also very very specific about the possible outcomes. Keep it simple. You may get something spectacular, you may get something "meh", you may get nothing, or you could get worse. You may have to wait awhile to even find out if any of the above are your lot. That we cannot compare her vs. me or anyone else, as she seems to have had a much longer, steadier course at a slower rate than I. This was so important to get across, so that she enters into treatment with a proper mindset.
So yes, she did go to see Dr. A. Her out of pocket similiar to others was 4900 mostly for the MRI and deductible etc. She is currently on Copaxone btw after a bad stint with Avonex.
Also, I have her explicit permission for all of this, the story and the images, just to mention.
She had the imaging done, and sent to Dr. Haacke of course. Before I knew it she had an appt. scheduled and was treated, all within a few weeks of hearing about this. We discussed a little on the phone about her experience, and two weekends ago I met with her at her Aunt's house locally, and had a nice sitdown and I went through her CD's with her a little bit as she was a bit foggy about what exactly happened and we are still waiting to get the path report. I'll just number a few misc. items as I understood them. (Btw, on their way out from the initial consult, they stopped to gas up and met a man whose daughter was treated there awhile ago and is doing great. Also, while there for the follow up, they met someone from Canada whose parent had been treated there for Alzheimers. Their statement, "not just doing good, SPECTACULAR", go figure).
1. She was VERY adamant that I iterate that she had a pleasant experience and was treated very kindly at PI (which I know isn't PI anymore but you know...). From her POV, it was a great experience.
2. She knew going in that once those valves were gone, they were gone forever, and what function they served etc. etc. Assuming she even had nice functioning valves to begin with.
3. The drugs. She was prescribed the latest greatest which is good, I guess, but without much more info than "take one per day same time". The drug is called Xarelto, it's prescribed for DVT, it is not on the same level with Heparin, Coumadin, Aspirin, nor Plavix. It interrupts the coagulation cascade very early on, at Factor Xa to be specific. It is brand new, has had limited comparison studies vs. other modalities, and frankly is a bit of overkill AFAIC. http://en.wikipedia.org/wiki/Rivaroxaban
Wiki has some on it. I would also like to direct the interested to a discussion between Dr.'s about this very thing at: http://tinyurl.com/8eyhdsk
. Basically you have two lines of thought here, with the other drugs, specifically coumadin, you have a certain amount of adjustment and monitoring that is required. However the effects are reversible.
Any bleeding event can be treated with Vitamin K for instance, in the event of an emergency.
With Xarelto, because it acts very early on in the cascade, this is not an option, it's effects are irreversible in an emergency, BUT, the effects also wear off quickly. It's a coin toss but myself, I'd rather have something predictable, tested, testable, and reversible, versus something new, tested only by pharmaceutical companies, and irreversible. The Dr's at the link above discuss all this in detail and it's worthwhile reading.
OKAY enough of that, on to the good stuff that's happened. Don't mean to be harsh, just want the best treatment for the best patients in the world, period. When it's friend, it's family, and that makes it personal. Color me biased
4. Once again, for the most part she was VERY happy with how she was treated, and was insistent that I iterate that. No argument there. Her procedure was a fog afterwards, and she was not able to provide too many specifics, which is fine, for someone who just heard about this a little over a month ago, she's come a long ways... When the follow up appt. (consult not UT) happened, she was told there had been a possibility of a stent needed, in the renal area (she said "groin" so I assume renal), but after further review it was determined to not be necessary. So no stents. Good. Less the better. The interrogation of the AZY and renal veins appeared to be thorough and unremarkable. Fantastic!
5. Jugulars. Both sides were treated, both at the collarbone level. The waist is fairly evident. Here are the pics. Nothing fancy just what I cherry picked from the CD's.
Right side, front view, pre-angio.
Right side, side view, pre.
Right side, inflation.
Right side, front view, post-angio.
Right side, 2nd inflation, waist evident.
Right side, post 2nd inflation. Good flow now.
Left side, pre-angio. Bit less dramatic.
Left side, inflation, waist evident, again at collarbone level.
Left side, post.
Interesting the lack of collaterals, at least that are easy to see. So many different people with differing courses and outcomes.
Thoughts? Critiques on the critique? Oh and there was no IVUS on the CD's but wasn't expecting to get that anyways, nor was there any of the UT's on the CD's, which I DID expect to see. Can't have it all I guess...
She is doing great so far, no ill effects, no worsening. She had a few comments, that she is finally sleeping soundly through the night, and others have noted that she is walking better (she was able to do that unassisted prior to). Also, she says that her fingers used to "tremble" when using the keyboard and that is gone. I'm sure there will be more specifics in the future, but she is VERY hopeful for the future, heck her whole family for that matter, but level headed at the same time. Still on the shots. Can't think of much else right now but will update as I get it.