Round 2 for skydog at Stanford

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

Round 2 for skydog at Stanford

Postby skydog » Thu Nov 19, 2009 5:36 pm

Sure feels good feeling good again. Now that the pain has made its way from my neck slowly down the shoulders to the arms and now rests just slightly in my right elbow. How does this happen this way? Procedure # 2. The whole trip from start to finish couldn't be better. It was perfect in all aspects. We arrived early and stayed late which gave time for meeting three of our fellow Patients/forum members. You Guys are Awesome! My schedule had changed while we were already out on the road. Testing was not until Wednesday night with follow up consultation Thursday and Procedure that afternoon. PROCEDURE DAY. 0800hrs We discussed the test results with Dr. Dake. He had to look back to the very first scans and see that there were the same pronounced collaterals on all three scanning sessions. His explanation is that for some reason I was tanked up and for this the slight stenosis lower down in the neck area we observed the first time did not show as well as it did on the last two scanning's. Which incidentally was quite severe. My take is that by trying to be in the best possible condition for the procedure I had the blood flowing so well it downplayed the true nature of what appeared as a slight stenosis we had observed the first time. The decision was easily made lets fix it. We had just enough time to pick up copies of all prior and too date scans then off for pre op and surgery. The whole surgery took less than two hrs and went very smoothly. Only a couple of painful moments when the stents were placed. Seeing the whole team dressed in colorful lead shielded aprons and head gear was cool. What a team! Post op was also a breeze this time around. I had the best nurse possible! I was able to get some sleep in between the blood draws. We had to reset the monitor checking my heart rate for my normal 45 beats resting. Once that was set with my neck brace, blind fold on, and the TV set to some soothing music off to sleep. Dr. Dake came in around 0900 hrs and gave the details. He assured us that we did the right thing. It was so cool to see him so relaxed talking to my wife and I about the whole procedure. He gave her a big hug and me a firm handshake and was off. Tears of Joy! It is now a full week since surgery, and the placement of two new stents. One 12/30 mm right side and a 10/30 mm left at the mid neck level. Aside from the weird migrating pain I feel great. It is a little early to tell but this time feels even better than the first procedure. My head seems clearer, bladder control improved, balance easier, fatigue less, twinges of pain in the temporal region gone, heat tolerance not sure cause its cold out right now, hot showers seem ok. Now a big change is my ability to sleep and I mean sleep! Eight or nine hours straight and wake refreshed and ready to go. I am still taking it very easy at this point but plan on getting a little more physical and start a light exercise program soon. Now getting the INR to the therapeutic level again seems to be a problem for me. I was at 1.1 at the first blood draw before warfarin and now 1.2 after nearly a week on plavix, aspirin and warfarin. It might have been the few grapes, and a avocado that threw it off a bit. The garden is quite brown so it will be easy to avoid to greens for now. High hopes for the future. Peace and Health to All, Mark
Plant a BIG Garden Live in the Moment
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Postby catfreak » Thu Nov 19, 2009 8:20 pm

Mark.

This is awesome news!! So great to hear you are doing so well.

Cat
Holly - Shine On You Crazy Diamond - Pink Floyd

9/3/09 Stanford - Dr Dake - Stent in R-J to unblock Arachnoid Cyst in Sigmoid Sinus. Stent in narrowed L-J. Balloon in narrowing where R & L Jugulars meet.
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Postby radeck » Thu Nov 19, 2009 8:39 pm

redundant post
Last edited by radeck on Sat Jan 16, 2010 7:53 pm, edited 1 time in total.
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Postby CRHInv » Thu Nov 19, 2009 9:55 pm

Mark!!!!

Hey buddy. I am soooo glad to hear you are doing so well. You keep up the good work and please take it easy for a bit, okay? No busting anything loose, okay? I cannot wait to be reading your posts with the kind of terrific news we have been hearing from Lew and Marie, I know it is coming! I know it.

I just read your post to my daughter and she wanted me to send you her best wishes for a super recovery also.

Please give your wife a big hug for me. You are both so amazing and have really touched my heart.

Take good care,
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
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Postby Arcee » Thu Nov 19, 2009 10:21 pm

Mark, absolutely wonderful news! Been hoping to read a post like this again from you. Enjoy it all fully as you so beautifully know how to do.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
allergric to interferons and Tysabri
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Postby SammyJo » Thu Nov 19, 2009 11:43 pm

Good news Mark! I'm so glad the second pass seems to be doing the trick. Thank you to you and your wife for your bravery.

I'm at 3 weeks post-stents today and doing well, but yeah, the weird migrating pain is a drag. But nothing compared to the hope I am getting from seeing unexpected improvements. Hard to type now, but I will get my log posted soon.
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Postby LR1234 » Fri Nov 20, 2009 12:21 am

Congrats Mark!! Lets hope that this time you retain the improvements, I am sure you will as it seems you have fixed everything x
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Postby ErikaSlovakia » Fri Nov 20, 2009 1:47 am

Hi Mark!!!
:D :D :D
Erika
Aug. 7, 09 Doppler Ultras. in Poland, left Jugul. valve problem, RRMS since 1996, now SPMS,
- Nov.3,09: one stent in the left jug. vein in Katowice, Poland, LDN, never on DMDs
- Jan. 19, 11: control venography in Katowice - negative but I feel worse
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Postby Loobie » Fri Nov 20, 2009 5:45 am

Mark,

I can't tell you how wonderful this is to hear. I've broken loose with some good news here myself lately as the accumulation of all the 'little changes' has finally felt like an actual change in function for the better. Can't tell you how much I enjoyed meeting you and here's to me you and Ollie getting a picture the next time with you not needing that cane!

Speaking of that, Oliver, do you have that picture of all of us by the pool? If you don't want to put it on a file sharer and resize it and all that crap, send it to me at lchapman@wrenind.com and I'll throw it on my photobucket account and get it posted on here!
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Postby Needled » Fri Nov 20, 2009 6:36 am

Mark, Great news!! I'm so glad Dr. D. was able to fix everything. All my best for continued healing.
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Postby mormiles » Fri Nov 20, 2009 7:17 am

Mark, Thank God you are no longer in a "holding pattern." Your news is terrific for you and so hope-inspiring to the rest of us. Enjoy, enjoy, enjoy your new unplugged self. Bless you, Joyce
Joyce (aka cypriane)~caregiver and advocate in Dallas for Steve (SPMS)----"Enter through the narrowgate..."
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Postby cheerleader » Fri Nov 20, 2009 8:01 am

Hey Mark...
glad you're back in your beautiful natural habitat and the good doc was able to give you some more flow. Enjoy the seasons changing- and a blessed Thanksgiving to you and Brenda-
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Re: Round 2 for skydog at Stanford

Postby jay123 » Fri Nov 20, 2009 10:41 am

skydog wrote:.... His explanation is that for some reason I was tanked up and for this the slight stenosis lower down in the neck area we observed the first time did not show as well as it did on the last two scanning's. Which incidentally was quite severe. My take is that by trying to be in the best possible condition for the procedure I had the blood flowing so well it downplayed the true nature of what appeared as a slight stenosis we had observed the first time. ...


Mark,
Confused by what you mean here as to being 'tanked up' and 'trying to be in the best condition' downplayed your original results.
Now I like to get tanked up every so often (but i don't think yo mean that way - lol!), so what did you mean?
Thanks!
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Postby gibbledygook » Fri Nov 20, 2009 11:21 am

Well done Skydog! My INR was constantly too low after the operation. It took the 2 months on warfarin and steadily increasing doses to get to the right level and then I came off it anyway. I hope you keep feeling better.
3 years antibiotics, 06/09 bilateral jug stents at C1, 05/11 ballooning of both jug valves, 07/12 stenting of renal vein, azygos & jug valve ballooning,
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Postby mrhodes40 » Fri Nov 20, 2009 1:50 pm

Mark I am so happy for you! That terrible headache that you have been suffering with these last couple months when the second stenosis was active--is that gone?

You said
He had to look back to the very first scans and see that there were the same pronounced collaterals on all three scanning sessions. His explanation is that for some reason I was tanked up and for this the slight stenosis lower down in the neck area we observed the first time did not show as well as it did on the last two scanning's. Which incidentally was quite severe


I am so glad he was able to get a clear idea of what was going on there Mark.

This is an interesting statement because it might mean a lot of things in the wider perspective, for example I wonder if this just shows how difficult it is to get a truly 100% conclusive picture. Here you were 5 months ago, in the right place seeing a doctor who knew what he was looking for and yet in the case of this particular stenosis it appeared insignificant on the first scan. Perhaps this means under interpreting can be an issue.

I also would suggest that people who might be concerned about placebo effects for persons getting treatment might consider your story one that kind of says it is less than some might imagine. You certainly didn't get one on that first pass and certainly knew something was amiss.

I VERY much look forward to your next reports Mark!
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
http://www.thisisms.com/ftopic-7318-0.html This is my regimen thread
http://www.ccsvibook.com Read my book published by McFarland Health topics
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