- Family Elder
- Posts: 202
- Joined: Sun Nov 22, 2009 3:00 pm
- Location: Didsbury, Alberta Canada
- Family Member
- Posts: 82
- Joined: Tue Jan 12, 2010 3:00 pm
- Location: Pittsburgh PA - USA
Flash---Just read your update to Jeff...he knows those feelings of tears mixed with sweat, and sends his regards. Thanks for sharing this. Jeff chopped up a bunch of oak on our property this week with our teenage son and a friend. We went boating, hiking and to the county fair in full sun and 90 deg. heat...all stuff people take for granted every day. But he doesn't. And I know you don't either...FlashHack wrote:
One day while I was nailing on some baseboard tears started to mingle with my sweat. Not because I had hit my thumb, but because I realized that for the first time in a long time I felt manly. I didn't feel like a patient or a diseased person. I felt like a man. It makes me all the more angry at the naysayers who are preventing people from getting treated. I find myself writing irritated emails to people who i know won't read them. I wish there was more that I could do.
Anyway, last thing to mention is my calves are very sore. I guess I never knew how much my lack of balance and the stiffness in my legs had made me change the way I walked, stood, etc. Since I have been working full days on the house, I have been using them much more than I have in the past few years and they are definitely feeling it. This is true for every muscle in my lower body. It was like they had a multi-year vacation and suddenly got called back to work. I never thought I would say this, but it feels so good to be sore.
Tip on the tight calves (Jeff went thru the same thing after angio) Try soaking in a warm tub or jacuzzi in the evening. It loosens up those muscles. The muscle tone will return with proper gait. If you can do some PT, it will help. We're really happy for you. Keep healing and God bless,
Cheer (and Jeff)
dx dual jugular vein stenosis (CCSVI) 4/09
- Family Member
- Posts: 44
- Joined: Tue Apr 06, 2010 2:00 pm
- Location: Near Pittsburgh,PA
Thanks to the Sponser of all !! Finally we KNOW what is at the root of MS!
So glad for you to be recovering from Chronic Cerebrospinal Venous Insufficiency (ccsvi )
I understand you are keeping your doc 'undisclosed' ...but I am so grateful doc was able to liberate you... I think all of us liberated or not should continue to share the Good News of Ccsvi Liberation, as well as the Good News of GOD!
Keep well, live long and HEAL!!
2/9/11 F/U Transcranial Doppler: flowing well
8/15/11 Hosp. Exac. "MS" 1st Spinal lesions EVER seen/ MRI
9/7/11 F/U T. Doppler: flowing well
My legs are still a little wonky, especially the right one which still exhibits a degree of spasticity in the knee. Balance is still good though as is the lower body fatigue and the urinary related symptoms.
Thanks everyone for all the well-wishes. I tell everyone who asks about my procedure how much it has helped and about the maddening behavior of the medical establishment. Which reminds me about my own Neuro. Funny story, on July 16th (four days after my procedure) I was laid off from the company I had worked for for the past 9 years (a small investment consultancy). I wrote my Neuro and told him that I had had the liberation procedure but I would have to cancel my appointment for lack of health insurance. To his credit, he asked me to keep the appointment at no charge as he wished to see me and hear about the procedure. Oh, and I am still in the gait study and now in a second. For some reason, OHSU really likes to watch people with MS walk. My appointment is not until the 27th of September and I will let everyone know how it goes as he is the head of Neurology at this influential hospital.
Look forward to hearing what the results of the appointment are, and thanks for putting me in touch with the Dr. Who Shall Not Be Named.
I saw that. Hide your face in shame!!Trish317 wrote:Ooops! I named the location that should go unnamed in my thank you thread. I might be getting yelled at any time now. lol!
On another note, I just wanted to mention something I just noticed last night. I was lying there in bed worrying about the future and whether or when my veins might restenose and so I pulled out Zamboni's seminal paper once more to look up that stair-step chart I had seen on restenosis rates. As I looked at it I actually read the title this time and it said "IJVs RESTENOSIS."
But, my main problem was in the azygos and that chart was directly to the right. Holy cow! Of the 56 patients where Zamboni found problems in the azygos only one restenosed at 6 months (one other had to be stented right out of the gate, the only stent Zamboni used)!! That means 96% of the treated azygos veins stayed open. So if your problems are limited to the azygos, as mine were, you don't have to worry much about restenosis. Whew!
I'm sure that most of you already saw that, but I hadn't and so I thought I would mention it in case someone shared my ignorance.