Updates since 10/19 surgery ~ Rhonda

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

Updates since 10/19 surgery ~ Rhonda

Postby magoo » Fri Dec 18, 2009 1:23 pm

I was updating my tracking thread and wanted to post my improvements here also.

Impact on MS symptoms:One week after procedure:Fatigue is noticably better. I have an awake feeling all day. I do not feel the need to rest throughout the day.
Right sided pain is gone.
Stiffness in legs and arms is gone.
No urinary urgency.
No migraines.
Cognitive ability seems improved.
1 month after procedure:
MS type fatigue is gone. No need to rest throughout the day and stamina is good. Cognitive function is greatly improved. No more trouble finding words, having conversations or multi-tasking. Right-sided pain is still gone. No dizziness, balance problems, tremors, weakness, or trouble with anxiety since surgery.
I do have some minor stiffness in legs, but this could be the result of more activity. I still have daily headaches above my left eye which are connected to my left shoulder and neck nerves issues from surgery.

Update: Dec. 2, 2009
Continued improvements in all areas listed above. I certainly do not feel as fragile as I used to. I am doing 1000% more than I was able to do before the surgery. I have no fear planning things or having a day-long list of things to do!!!! The headaches above my left eye continue to be a problem. I did get a soft cervical neckbrace and have had complete relief when wearing it. I assume these will resolve in time as they have for most. I have minor stiffness in calves at night, but nothing that requires medicine. Next week I have my follow-up appt. with Dr. Dake.

Update Dec. 18, 2009:
I wanted to update since I was back at Stanford 12/8 for my follow-up appt. with Dr. Dake. The scans were great. The before and after images were astonishing. The veins were essentially flat, almost 100% closed before surgery. The veins are now wide open and the stents are nicely integrated. I have discontinued Coumadin, but will remain on Plavix for a time. Dr. Dake thinks it is just a good insurance policy. I will continue to take one asprin daily for the rest of my life.
I feel great. The headaches are mostly gone. I have gone several days without ANY pain medications...I haven't been able to do this in 6 years! I feel pretty much normal. I feel like I did BEFORE MS came into my life. I know this is a huge statement, but it is honestly how I feel. I have no MS symptoms. I do not know if this will be the end of my story, but I am so happy to have my life back for however long
_________________
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby ClaireParry » Fri Dec 18, 2009 1:29 pm

Hi Rhonda,

Thats great news! I'm really pleased for you.

I have one question, did you have any balance issues before and if you did have they improved??

Raising a glass to you,

Claire
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Postby magoo » Fri Dec 18, 2009 1:32 pm

Hi Claire,
Yes, I did have balance issues. Now I am steady as a rock. It's shocking, even to me. I wish everyone could experience such a change.
Thanks!!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby EnjoyingTheRide » Fri Dec 18, 2009 1:33 pm

Wow. Just...wow.

Oh, and congratulations.

Oh, and thanks.
Mitch
Please visit my blog at www.enjoyingtheride.com
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Postby skydog » Fri Dec 18, 2009 1:38 pm

Awesome News Rhonda, I have also updated my progress on the tracking thread. Wish it could have been as glowingly positive as yours but i am doing well to be sure. Just getting ready to send a letter to Dr. D to see when he wants me in for a followup. Sure looking forward to dropping the warferin and getting back to my healthy green diet. Just picked up a additional supply of plavix so I am good there for another 60 days of dosage if he sees the need. Having great patients like you presenting good results must boost his spirit a little. Happy Holidays, Mark
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Postby ErikaSlovakia » Fri Dec 18, 2009 1:40 pm

Excellent news! Congratulations!!! :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 ozarkcanoer » Fri Dec 18, 2009 1:40 pm

Thank you Rhonda. Your story keeps me upbeat and gives me hope.

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Postby magoo » Fri Dec 18, 2009 1:54 pm

Thanks everyone :):):)
Mark,
I just read your thread and I am so thrilled for you! Your improvements are fantastic. I hope the rest of your issues will resolve in time.
I hope Dr. Dake knows how much he is helping all of us. I happen to think he is a brave and amazing man.
BTW, I too have not had any heat intollerence. I didn't have that on my list, but I sure did suffer from it. I baked cookies all day in and out of the hot oven and felt great. The heat from the oven would have wilted me previously. I also walked my butt off on Halloween with my kids and it was warm and humid. It didn't bother me a bit!
IMHO, there is a big connection with CCSVI and MS. I look forward to the future research and treatment options.
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Sharon » Fri Dec 18, 2009 2:39 pm

Rhonda -
What a great report from you. Isn't it nice to be able to plan a full day of activities? Somedays I find myself needing something else to do, 'cause I still have the energy and there are hours left before bedtime.
You wrote
I feel like I did BEFORE MS came into my life. I know this is a huge statement, but it is honestly how I feel

I wish anecdotal statements like this would be put in the articles being written. Instead we get the NMSS reporting an anecdotal story about one death following CCSVI surgery. Balanced reporting??? I think not.
Thanks for the update -- it is so exciting to read about our experiences. BTW - the shoulder issue takes a bit of time -- do not lose patience. I am at 100% range of motion and back to my strength pre-procedure (took me about 5-6 months)

I think the "stenters" are going to be able to ring in the New Year with hope and health for 2010.

Sharon
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Postby magoo » Fri Dec 18, 2009 3:00 pm

Sharon,
I have to thank you for all of your help and support. The shoulder is healing. Dr. Dake assured me in 4 months I'd be good. Did you have the bone/muscle bulge out on the affected shoulder? When I see my GP I will have him decide if I need anything other than rest and stretching. It is so minor, it's just a bother more than anything now.
I think of you often when I look at my boys (because of your daughter). I hope there will be an easy way to test our children for CCSVI in the future. My heart breaks to think one of them could have blockages that could lead to disability.
I will cetainly be ringing in the new year with a bang! I feel like I have the ability to do anything!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Sharon » Fri Dec 18, 2009 3:16 pm

Rhonda -

The bone/muscle bulge - where is it? My trapezius muscle on top of my shoulder would bulge when I was doing a bicep curl -- still does just a bit. Just an idea to ask your GP about -- I started with acupuncture after I was off the Coumadin--- I really think it helped. It took about three sessions and there was a noticeable difference. Now, believe it or not, I am using it for the foot drop. The acupuncturist is not sure how much relief I will get -- she was sure excited the other day when she did a needle placement, then turned the needle - my foot dorsiflexed just like it is supposed to. I was in shock and she had tears in her eyes.

I agree with you about an easy way to test children -- your boys are going to be the benefactors of your pioneering effort.

Sharon
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Postby Lyon » Fri Dec 18, 2009 3:23 pm

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Last edited by Lyon on Tue Nov 22, 2011 3:19 pm, edited 1 time in total.
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Postby magoo » Fri Dec 18, 2009 4:11 pm

Sharon, yes it is on top of my shoulder. Is there a good way to find an acupuncturist?
Amazing news about the foot drop!!!!!!!!
Have a wonderful holiday!
Rhonda~
Treated by Dake 10/19/09, McGuckin 4/25/11 and 3/9/12- blockages in both IJVs, azy, L-iliac, L-renal veins. CCSVI changed my life and disease.
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Postby Sharon » Fri Dec 18, 2009 4:19 pm

No, not at all Lyon. My point is the anecdotal story that has been referred to in many of the media reports is one death following CCSVI intervention. I have not seen one of the reports say that the death was also anecdotally (is that a word?) reported to be unrelated to the CCSVI surgery -- have you? Do you not think this is a bit misleading? On balance, how come there isn't an anecdotal statement about improvements?

I understand why the medical community is slow to accept the CCSVI theory. When there is a possible change to a storyline, the characters need to be changed also. The medical community has been beating the drums to the auto-immune theory for years. It is hard for them to look at something else, 'cause they haven't had to -- now they are being challenged to look at something outside the box.

Lyon, I am realistic -- the CCSVI theory has a long ways to go before it gains acceptance. We still do not have a cure for MS - the autoimmune theory hasn't come up with a cure and in fact has had a hard time coming up with drugs to deal with the symptoms. I hope that in six months (one year from my procedure), I will be where I am physically and emotionally today -- because, Lyon where I am today is so-o-o much better than where I was a year ago at this time.

Sharon
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Postby Lyon » Fri Dec 18, 2009 4:47 pm

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