Randi's Turn

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby Jamie » Wed Jul 15, 2009 2:08 pm

I traveled with just an iphone and did all my TIMS posting on it.

Brilliant.

Great news here too!!!

This is so cool, prior to Mel's I was hopeful now I am a true believer!
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Postby Loobie » Wed Jul 15, 2009 4:13 pm

I saw Randi right after and she looked just like I did not 18 hours before! I think she will do well as long as she doesn't get the same reaction from the pain meds that I did. But that's over now! She was in the new part of the hospital and had a much neater room! I was jealous! Pulling for you Randi!
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Postby javaneen » Wed Jul 15, 2009 4:35 pm

Hope your resting and feeling ok. Good luck and safe travels home. I'll be anxiously waiting to hear from you about your results!
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Postby Needled » Thu Jul 16, 2009 8:46 am

Hi Randi, Glad everything went well and hope you're feeling better. We'll be waiting for the deets when you're up to sending them.
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Postby Arcee » Thu Jul 16, 2009 6:44 pm

Hi All!! It's been an exciting week. I am finally back at the hotel having some quiet time and wanted to post and begin to fill you in and answer questions.

It may seem kind of a weird thing to say, but so far this week, the surgery itself was the easiest part. It was nerve wracking (ha! did not mean to use bad MS humor) getting through the tests, and I had to deal with some bureaucratic stuff, and the one night in the hospital was totally lame. The room I was in may have looked more renovated than Lew's, but there were three of us, people streamed in all night, the A/C barely worked, and they pump you up with liquids so you pee all night long. Basically, no sleep.

But the surgery was smooth and painless. As everyone has said, Dr. Dake is super. (I think we should start a contest: who should play him in the movie version?). And the rest of the team in there just made me feel comfortable and confident. My occlusion seems like it is very typical - - they say they've seen it many times.

I felt fine after the surgery, texting as soon as I got my phone back (tip: leave it in the eye glass case they give you in the bag to keep your clothes). I also tried to eat whenever I could after the surgery. Both the percoset and motrin they give out can make you naseous so I ate as many saltines as I could. The only discomfort I have is where the stent is, and I only feel the slight sharp pain when I stand too quickly or move my head too much. I feel lucky about that.

I think one question that has come up concerns just who I will be seeing in Boston for follow up. Dr. Dake is going to identify someone he respects/trusts to do the follow up MRV, so not a neuro, and it also doesn't have to be someone who could actually do the procedure either. But he is comfortable that there are enough good cardiac/vein/medical folks in general in Boston that it will not be a problem. Clearly he will clue that person in on the whole thing, and who knows where it could lead. (In another post, I want to raise the issue of pitching this to cardiac centers and hospitals, not just individual doctors, as I think it could be a good source of income for them. And, not only are we good for the money, but we are good patients - - hap, hap, happy to be there, educated, etc. It is obvious to the hospital staff who deals with us.)

A few interesting comments before I must go. Sorry for the disjointed post, but I will try again tomorrow.

- it was so cool that the different people throughout the hospital knew about us, that we knew each other and were coming in from everywhere to have this procedure. Because of HIPPA, they wouldn't talk to me using Lew's name, but it was a fun thing to be there right after him and have the reference.

- Dr. Dake and his team really do seem to relish this project. It's different and interesting for them professionally, and they know that it is exciting for us. (I used the word 'thrilling' at one point and kind of got an eye roll, but they get it.) It has to be gratifying given how appreciative we are and the changes that seem to be occurring.

- And last but not least, speaking of changes, I can honestly say that I felt different after the procedure. Of course it could be a placebo effect, but I truly felt a sense of clarity and energy when I would have been exhausted. It really surprised as I wasn't expecting it. I didn't go into this thinking that I was currently experiencing the world from a tired or unclear vantage point, but I do feel that way now. The best analogy I can come up with is that I was digital cable and was fine with it. But then I got to experience HD and it is really cool and i did not realize what I was missing.

This may not be a clear description so I will try again tomorrow as I have to go. But let me also say that it was so amazing to know that this site was there throughout it. Incredibly comforting for me.

- Randi
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Postby cheerleader » Thu Jul 16, 2009 8:01 pm

Randi-
Thanks for the thorough update...so glad to hear you are doing well and recovering from the procedure and your night'o fun in the hospital! The awake feeling is what Jeff noticed first, and it's still with him. We liked your HD analogy! A clarity of mind that we attribute to oxygenated blood reaching the brain and then leaving without slowed perfusion time.

Here's to more healing, Randi. And my casting ideas for Dr. Dake are Russell Crowe or William H. Macy...of course, George Clooney could work, as well.
:wink:
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Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Loobie » Fri Jul 17, 2009 5:59 am

Me and Randi said Bill Pullman or Jeff Bridges.
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Postby Sharon » Fri Jul 17, 2009 9:58 am

Randi wrote:
And last but not least, speaking of changes, I can honestly say that I felt different after the procedure. Of course it could be a placebo effect, but I truly felt a sense of clarity and energy when I would have been exhausted. It really surprised as I wasn't expecting it. I didn't go into this thinking that I was currently experiencing the world from a tired or unclear vantage point, but I do feel that way now. The best analogy I can come up with is that I was digital cable and was fine with it. But then I got to experience HD and it is really cool and i did not realize what I was missing.


YES! YES! I agree with your analogy. I also did not feel like I had brain fog, but after the procdure there has been a differnece. Your analogy is perfect!

So glad to hear that you are spending some quiet time and getting some rest. Each day will be better - I think you will experience some of those "what's going on moments" - nothing scary, just a Hmm?

Take care of yourself!
Sharon
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Postby Arcee » Mon Jul 20, 2009 10:05 am

Well I am back home and things are going well. I have to say that, thankfully, my post surgery experience has been an easy one. As of last night, so four days out, no pain killers and no pain to speak of. I can get a twinge if I move too much in a certain direction or open my jaw too wide, but it's fleeting.

My crisper, clearer sense of the world still stays with me. I have gotten a bit tired being back, but that may be from the all the laundry :) Actually, people who have seen me say that I seem more energized. I totally get Jamie's and Joan's comments as I am more interested in doing more socially already.

On the other hand, some of my MS symptoms have flared a lot these past few days. It's passed, and was not a big deal, but noticeable. Coincidence??

A few additional random thoughts to pass on (and perhaps I should put them in the tips sections):
- I thought the machine for the MRV was much louder at Stanford than the one I am used to at home
- the time designated for surgery is actually 2 hrs before the actual surgery begins. I was with Loobie's Mom during that time and it would have been a lot easier to handle knowing that pre-op takes that much time
- I had great results from taking a probiotic. My understanding is that antibiotics can cause constipation as well as the pain killers and since they are pumping us up with antibiotics, taking a probiotic is in order.
- And, if any of the others who have gone before me are pre-menopausal women, please shoot me a PM and tell me how you have fared...

Once I dig out at home and at work, I'll try to pass along any other observations/comments.
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Postby peekaboo » Mon Jul 20, 2009 10:29 am

Good to hear from you and you're doing OK..i hate it when one leaves work/home for a short time and for the first days back its all catch up time. Distant memories for me :?
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Postby Arcee » Mon Jul 20, 2009 12:48 pm

I forgot to mention one thing, and was trying to find another thread where it recently came up but can't seem to locate it. People were wondering about whether or not to tell their neuro and what the reaction has been. So I did want to add that I had discussed my Stanford visit with my neuro before I left and my neuro called in and participated in my consult with Dr. Dake. It was interesting to hear them go back and forth, and it made me feel more comfortable about going forward post-surgery.
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Postby Sharon » Mon Jul 20, 2009 1:29 pm

Hi Randi!

Glad to hear that your post op is going so smoothly! You are a lucky one.

You might want to post your tips over on the "Getting Ready for Stanford"
thread. It probably should be bumped anyway 'cause there are a couple of people going in August.

Do not wear yourself out doing too much "catch-up" work at home. You have a great excuse to sit back for a few days :P

Take care and keep us updated.
Sharon
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Postby bestadmom » Tue Jul 21, 2009 5:27 am

Randi,

I'm so glad to hear your trip and surgery and post op went so well.

Michelle
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