Marie's Stents CCSVI

Tell us what you are using to treat your MS-- and how you are doing.

Postby Sharon » Thu May 28, 2009 7:37 pm

OMG, Marie!!
GUESS WHOSE FOOT PICKED UP A TINY BIT, NOTED BY HUSBAND BILL "HEY YOUR FOOT IS NOT DRAGGING" AS SHE DID SO.....


Placebo?? I bet not - I think you would know - were you aware that your foot was picking up, or did your husband notice first? Somedays my gait is better than others, and I really do not realize it - but, the people around me do. Like you said, I would take two pills of placebo if it makes a difference. Yahoo!!

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Postby CureOrBust » Thu May 28, 2009 9:24 pm

mrhodes40 wrote:GUESS WHO WALKED INTO THE LIVING ROOM.........

GUESS WHOSE FOOT PICKED UP A TINY BIT, NOTED BY HUSBAND BILL "HEY YOUR FOOT IS NOT DRAGGING" AS SHE DID SO.....

WOOO Image HOO :!:


mrhodes40 wrote:Cure your chicken reflex? They just used gadolinium for the MRI MRV. Have you never had gad in an IV? it is the same as usual nothing going into the veins but a regular IV.

My "chicken reflex" was that Dr Dake advised it would be best to go with a CT scan, but after seeing the catheter 8O in Zamboni's papers, I realised the MRV was a little more my "taste". Actually, I have never had an MRI with enhancement, so it will be my first time.
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Re: MRI w/contrast

Postby NHE » Thu May 28, 2009 10:19 pm

I'm pretty sure that we've discussed this elsewhere on the forums... Be sure to drink plenty of water after your MRI with contrast to help your kidneys flush out the gadolinium. I'm not sure on the specific recommendations, however, perhaps staying well hydrated for 12 to 24 hours afterwards would be a safe bet.

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Postby mrhodes40 » Fri May 29, 2009 8:53 am

Cure the Gd is not bad, I had a taste of metal in my throat for a little bit and the IV is a quick poke, The machine they had at Stanford even injected it at the right time no person even had to come in to do that part like they do at my hometown. It'll be OK!

sharon said
were you aware that your foot was picking up, or did your husband notice first? Somedays are better than others


Some days ARE better and no I did not notice, my husband did, I always think I am walking "pretty good" cause I am used to walking bad!! :lol:

I do not feel miraculously better, just subtly better in tiny ways like being able to walk getting off the ellipse. That surprised me as Ihave had to get on the company bed and lay there a while to walk before.

I am sure this will be a long haul... I've had those lesions for 18 years the same 4...and they are huge. I am too pragmatic to believe they can revert to "normal". however if the blood flow is better I am wondering if the local congestion is relieved enough to allow slightly better function, I do not know. We'll see as time goes on obviously I am not thinking I remyelinated and regenerated nerves in a week.... :roll:

I do believe that the heat tolerance is vastly improved we do cool our brains through the venous system it is supposed to take the heat away from the head not regurgitate it around as it does when some of the veins are blocked and the blood has to seek an alternate route out

marie
I'm not offering medical advice, I am just a patient too! Talk to your doctor about what is best for you...
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Postby cheerleader » Fri May 29, 2009 10:33 am

mrhodes40 wrote:

I do not feel miraculously better, just subtly better in tiny ways like being able to walk getting off the ellipse. That surprised me as Ihave had to get on the company bed and lay there a while to walk before.

I am sure this will be a long haul... I've had those lesions for 18 years the same 4...and they are huge. I am too pragmatic to believe they can revert to "normal". however if the blood flow is better I am wondering if the local congestion is relieved enough to allow slightly better function, I do not know. We'll see as time goes on obviously I am not thinking I remyelinated and regenerated nerves in a week.... :roll:

I do believe that the heat tolerance is vastly improved we do cool our brains through the venous system it is supposed to take the heat away from the head not regurgitate it around as it does when some of the veins are blocked and the blood has to seek an alternate route out

marie


Marie...couldn't agree with you more. I think the immediate changes folks can probably expect are reduced fatigue, better heat tolerance, more energy...these can be credited to better oxygenation and circulation in the brain. The long haul will be the healing of lesions and remyelination. Jeff's legs still hurt (not everyday, but once every 3 days) and he still has leg spasms. Those are related to his cervical lesion, and that's just going to take time to heal. Hey, his shoulder is much better today...bodes well for continued healing, Marie!
xo,
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
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Postby notasperfectasyou » Fri May 29, 2009 12:26 pm

Marie,
Is this going to be your place to track your progress? I just wanted to check. I'm printing this thread up to share with Kim this weekend.

On a side note, I thought I'd see how this might relate to Atherosclerosis. I found that Ath is primarily an artery issue, needing oxygen. But, I have to wonder if you or anyone else thinks there is or has identified any tie in or relationship with CCSVI.

It's really exciting to read about your progress.
Thank you,
Ken
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Postby Sharon » Fri May 29, 2009 1:32 pm

Marie
I am sure this will be a long haul... I've had those lesions for 18 years the same 4...and they are huge. I am too pragmatic to believe they can revert to "normal". however if the blood flow is better I am wondering if the local congestion is relieved enough to allow slightly better function, I do not know. We'll see as time goes on obviously I am not thinking I remyelinated and regenerated nerves in a week....

I have had the same lesions also - no additions and no deletions. I can't wait to see Zamboni's new reports - hopefully, we will have a better idea as to the improvement of his patients. No matter what, we all have to be better off having the blockages cleared. It is so exciting to know that both you and Jeff have experienced a positive improvement. Regeneration or remyelination ---hmm? Well, now that all the pooled blood is moving out, there might be some room in our brains for a few more nerves!! :lol:

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Postby mrhodes40 » Thu Jun 04, 2009 9:20 am

Well let's hope there is some more healing as time goes on. I do imagine that things working better will mean that the body can do some healing, we do have stem cells in our brains naturally and they should be able to funciton better I think with proper bloodflow.

Update: It is now 2 weeks and a day after stent placement.

Abdominal site: the area where they went in to the femoral vein had an unusual complication in that I had a bleed into the abdominal muscle. This had been further complicated by the fact that I have flexor spasms which at night pull on the trying-to-heal area and are keeping it in a semi hurt state. I am taking 3 times as much Baclofen as normal to keep the area quiet, and healing is slow. This is an unfortunate problem, not expected for everyone.

The stent site: I still have discomfort in the neck, I spend a good portion of my day heating up wet kitchen towels in the microwave to throw around my lower neck like Rocky Balboa :lol: which helps.

It turns out Jeff happened upon the same cure for sore neck. For some reason the stents in the high jugular position cause this hopefully temporary neck pain; Dr Dake does not know why and though I offered the idea the accessory nerve is irritated, he is not signing up for any particular theory at this point. My trapezius muscle-the one Spock grabs- is the hurting thing and it seems weaker compared to normal as well.

It is getting better all the time I now seem to have a good day and a bad day alternating. I find a bra strap is irritating to the neck so I am finding camisoles a good choice instead.

The computer is the worst offender for the irritation of the neck. Typing makes me hurt consistently so computer time is limited. IT is better if my head is held really high and straight and my back very lined up tall...books on the head type thing

As for function: I am limited in terms of how much I can do I have had a devil of a time with the abdomen... it flares back up if I overdo it. I actually had a CT scan of it this week and they saw the fluid of the resolving pooled blood in the abdominal muscle. I have to rest it or it gets very sore so I am not on my ellipse as I planned to be, nor am I trying to walk a lot as that makes my stomach hurt too. The one time on the ellipse was really promising with no heat sensitivity, but I have not been allowed to exercise like that....though I did feel better stomach wise 2 days ago and so I decided to I walk around. I walked well that day it seemed--really well until my stomach got sore again--oh man that made me mad that it flared right up....I AM SO FRUSTRATED BY THE NEED TO REST I CAN HARDLY DESCRIBE IT!

Doesn't my body understand that I want to run? That everyone wants to see how this is working? that I depserately want to test out the new circulation? geez...... :roll:

My mental landscape before treatment was to believe after this I would feel great and be able to walk and exercise and start healing, that I am not able to do that seems cruel... the ongoing pain is frustrating the need to rest irritating in the extreme.

I am still feeling good about my decision to participate in the effort to trial this therapy. I had no other options so I am pleased to be able to move forward with something.

as frustrating and difficult as my mental landscape is right now, it is nothing compared to being SOL as far as treatments of any kind go and just waiting to go down the drain.

I took my chance at the brass ring, we'll see if I actually got it....
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 SarahLonglands » Thu Jun 04, 2009 9:52 am

Marie, what an impatient thing you are!! Sick for so many years you can't expect to be better all at once., although you have a standing start at getting better because you have already got rid of at least most of the infection that was the prime cause of MS in the first place.

Pain is the worst and most frustrating thing, though and I a very thankful that I only had it for less than two weeks as the infection was being expunged.

So be patient and do what you say: you keep saying you must keep your computer time to a minimum the end up writing "The Works of Rhodes" before you take note. Go and sit out on your deck and take in some vitamin D because you mustn't ignore it.

Sarah
An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.
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Postby Loobie » Thu Jun 04, 2009 9:53 am

Marie,

Great update, and that is the reason we all love TIMS. There is no one at the pharmaceutical company sponsored site that could decide NOT to post that all isn't mountain biking and marathons; you know like the Rebif ads. I mean after all isn't everyone on Rebif doing stuff like that? lol. I understand your frustration. I went into the Tovaxin debacle REALLY thinking it was going to help almost immediately. Go back and read some of my posts right after I got it and you'll see what I mean. So I'll leave my Tovaxin goggles (low expectation lenses :D ) on for a few weeks post op and hopefully I don't get any complications. I don't get flexor spasms, but my legs have really been weak here lately and I'm just trying to ignore it!

In our efforts to bring the real story home, I'm so glad that you are playing it straight and not donning your rose colored glasses. Hopefully you'll soon have tales talking of the miles you put in your elliptical! Hang in there Marie. As they say never up, never in. I'm pulling for you big time.
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Postby cheerleader » Thu Jun 04, 2009 11:46 am

Thanks for the update, Marie.
I'm so sorry you haven't been able to enjoy the fruits of this procedure just yet...but you are wise to rest and let your body heal. The elliptical will still be there, and the hot summer months are ahead. Just imagine how happy your brain is...getting fresh, oxygenated blood and really benefitting from your new circulatory system.
Day by day...
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Arcee » Thu Jun 04, 2009 12:01 pm

Marie, thanks so much for your update. I can't say it any better than Lew. Your honesty means everything.
Resting is hard! Best of luck getting through this part quickly. - Randi
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Postby notasperfectasyou » Thu Jun 04, 2009 12:59 pm

Marie,
A little EDGY?
Sounds like a good thing; I think impatience is a good thing. Thank you for keeping us all up to date. Is there a post where we are tracking who has gone and who is going?
Ken
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Postby mrhodes40 » Thu Jun 04, 2009 7:53 pm

Wow thanks, i feel better just reading it!

Sarah, "the Book of Rhodes" LOL! I am dreadfully long winded. It is me in person too. :oops: My kids just roll their eyes............

lew said
efforts to bring the real story home, I'm so glad that you are playing it straight and not donning your rose colored glasses.

arcee mentioned
honesty
This is critically important to me. I do not want to sugar coat this at all. I was frankly surprised by how unwell I felt. I don't want others to think their experience is unusual when/if that happens.

napay said
edgy
LOL uhhhh, yes? :lol:

Cheer you are a good one for remembering the salient point the ellipse will be there. Mom said a year from now the weeks you spent healing will not matter.

I appreciate the support from everyone I KNOW you all get how I expected to sail through this and be lipperty lubbing and sniffledy snuffing may way to health casting rose petals about my smiling self as I skipped along.... (you all do read Berenstain Bears to the kids...?)

Only an MSer engaging what they hope might be a cure could understand that...
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 Sharon » Fri Jun 05, 2009 7:11 am

Marie you wrote:

This is critically important to me. I do not want to sugar coat this at all. I was frankly surprised by how unwell I felt. I don't want others to think their experience is unusual when/if that happens.


Holly and I were fortunate to have you and Jeff blazing the medical trail for us. Because you both were honest in stating how you felt, we had an idea that this was not going to be a walk down the yellow brick road. I think we might have been lulled into a comfortable zone when Wobbly posted that he was sitting at his hotel having a drink of wine two hours later. Wobbly did not have the same procedure - Dr. Dake is using stents - Wobbly did not have stents.

There is pain associated with this procedure. I do not have the painful headache that Jeff had and I have not had the extra complications that you have had, but I do not feel like running a marathon. My throat hurts like H**l everytime I swallow - the Percocet kind of numbs it but the pain is still there. I have a place over my left eye that if I look down with my eyes I get that brain freeze (like eating ice cream). I am sure the Percocet is not helping my overall body feel any better either. Anyway, at some point I guess we could say "the truth shall set us free". Let's keep telling the story like it is.

Sharon
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