Skydog (Mark) home from Stanford

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

Skydog (Mark) home from Stanford

Postby Sharon » Wed Jul 08, 2009 3:14 pm

Hey Sharron can we change the topic heading to Home from Stanford or whatever you see fit.

As you requested Mark :lol:

How are you doing?
Do you have anything to add to the thread "Getting Ready for Stanford"? I am sure you noticed something that is not posted.
You wrote
I have started a story on the procedure that i will finalize and post soon.

Looking forward to reading your story - we all have had our own story to tell - this will help those who are following

Sharon
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Postby skydog » Wed Jul 08, 2009 3:47 pm

No more progression sound great ??? Setting my sights just a tad higher. Whatever it takes I will gain something back, and I truly feel that this is happening already. Less fatigue, heat tolerance better, purple foot is now pink, huge difference in my hearing and getting better by the day, my eyes are now clear, bright and able to focus without reading glasses for a much greater period of time which is great news with the amount of stuff Marie, Cheer… put out for us to read, keep it coming Please !!! Now I am ready for that Walkaid or Bioness to stay mobile since no mountain biking while on the blood thinners. Has anyone used their Walkaid or Bioness since the surgery and if so any problems with bruising because of the blood thiners ? I have a friend that who is a electronics nut and wants to build me the best waterproof, bulletproof, and fastest walkaid to date. Physical therapy is my focus after the surgery heals. I may limp the rest of my life, but if so a strong limp is what it will be. If I still end up in a chair I want one that I can use the strength left in my arms to pop a wheely. One week out of surgery and feeling great !!! Mark
Last edited by skydog on Wed Jul 08, 2009 4:08 pm, edited 1 time in total.
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Postby skydog » Wed Jul 08, 2009 3:53 pm

Hey guys I am still waiting for all the info to come back from Stanford that will be included in my story. Hope I wont disappoint anyone with my story. Its big for me. And could fill a book with the whole trip but for now a bit at a time, one day at a time.... Peace Mark, And Thank You Sharon
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Postby mrhodes40 » Wed Jul 08, 2009 4:12 pm

I can't wait for more detail. Cheer and I do a lot of literature reporting but I am just as interested as the next person in others journeys...
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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Postby Loobie » Wed Jul 08, 2009 5:57 pm

Great to hear Mark, just fantastic.
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Postby Sharon » Wed Jul 08, 2009 6:20 pm

Mark you wrote
Has anyone used their Walkaid or Bioness since the surgery and if so any problems with bruising because of the blood thiners


I am using my WalkAide everyday. I did have a light colored bruise under my knee where the WalkAide fits, but it is now gone. I do not think you have anything to worry about.

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Postby skydog » Thu Jul 09, 2009 11:03 am

Thanks Sharon, If I can find the extra funds to rent one until we build one that will be great. So far I have not had a problem with bruising even around the neck where the collar attaches to the short lease Dr. Dake gave my wife. Low and slow for now. I might have overdone it a bit yesterday on a walk without the leash. Felt good until I came home with a sharp headache and woke this morning with maybe worse than normal foot drop and week leg. Head still hurts a little so taking it very easy today. Had some minor computer problems this morning but back on line now. Hopefully we will have info from Stanford in the mail to share with everyone soon. Will keep Ye all Posted... Cheers Mark
Plant a BIG Garden Live in the Moment
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Postby cheerleader » Sun Jul 12, 2009 3:40 am

Mark-
Hope you're feeling better from the walk...Jeff had a few one step ahead, two step back days...your body is still readjusting to the new fluid levels in your brain, and the stent site will be prone to inflammation for awhile. Keep up the exercise, but maybe leave the collar on :wink:
Looking forward to reading more of your experience-
healing thoughts from balmy FLorida,
Joan
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby gibbledygook » Sun Jul 12, 2009 3:58 am

Agreed with the steps forward and backward analogy. Mine has been more like three steps forward, none back and lately one step forward, two steps back. It's quite bizarre! And still blooming painful. :)
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 skydog » Sun Jul 12, 2009 12:41 pm

Collar is on and enjoy staying at my wife's side. Enjoy Balmy Florida. I remember well the three months spent in St. Augustine, Love those thunderstorms. Peace, Mark
Plant a BIG Garden Live in the Moment
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Postby mrhodes40 » Sun Jul 12, 2009 7:26 pm

avoid complications! Stay on a short leash! Easy and slow wins this race... I like your idea of being better!
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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Postby CureOrBust » Sun Jul 12, 2009 8:09 pm

skydog wrote:Collar is on and enjoy staying at my wife's side.
That gave me an idea. I wonder if wearing one of those whiplash collar thingys, it would help those with the discomfort after surgery, by limiting their movement.
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Postby Islandgirl » Mon Jul 13, 2009 7:53 am

Skydog, I am so happy you are improving!!!!!!! I was so happy to have someone just like me, but it sounds like the surgery has been successful on you. I have to say that I am happier that you're improving than just like me. I am changing my diet to the celiac diet, Yuck, but whatever might work. Good luck and God Bless to health and mobility IG
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Postby LR1234 » Mon Jul 13, 2009 8:01 am

Hey island G (I am on a gluten free and lactose free diet, have been for years I definately notice I get "attacks" and worsening of symptoms when I incorporate those foods back into my diet)


I am so glad you are feeling the benefits too Mark, I am going to be watching you Stanford lot hoping that you all improve!
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Postby skydog » Mon Jul 13, 2009 8:14 am

Yes I think for those that have surgery done lower than mine that a whiplash collar/support will help. It is hard to break the habits of twisting and turning the neck. I bought a collar neck support, but found I did not need to use it as my stents were placed so high up and were well enough supported by the surrounding bone structure of the sinus cavity. Just a simple loose collar and short leash for me... Now almost two weeks out from surgery and feeling better every day. I visualize health and well being daily as part of my regime. Stay positive and keep stepping forward to the best day ever. Talked with Angela this morning, she will send a copy of my MRV, Ultra sound, Dr. Dakes report as soon as he finishes compiling his notes. Be patient as I am my friends he is one busy guy. Looking back I think staying a extra day and getting as much info before departing Stanford would be good advice. Take notes because you may not be in the best state of mind to remember everything. Peace and Health Mark
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