Marie's Stents CCSVI

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

Postby catfreak » Thu Sep 10, 2009 7:15 pm

Lew said:
Some of us have twists, some of us have spider collaterals, and some of us have the appearance of two jugs on one side, and some have both!


Don't forget my Arachnoid Tissue Cyst. Are we a bunch of wierdos?? :lol: :lol: :lol: :lol:

Marie, I agree that any improvement is a success and if I have to have it done again, oh 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 Loobie » Fri Sep 11, 2009 3:46 am

catfreak wrote:Marie, I agree that any improvement is a success and if I have to have it done again, oh well......

Cat


That's right where I'm at right now; leaving Monday morning 6:00am.
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Postby catfreak » Fri Sep 11, 2009 6:52 pm

Lew wrote:
That's right where I'm at right now; leaving Monday morning 6:00am.


You better keep us posted. We will be waiting. :)

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 mrhodes40 » Fri Sep 25, 2009 3:50 pm

It is now just about 4 months out from my surgery.

Here's the scoop.

My every day seems like every day same old now I am used to my level of function it does not seem new. I still use the rollator to go to the mall. I am using a cane only to go to a restaurant, but walk carefully to do so. I have done some hot outside work, I get hot and feel MSey going back in, but it is nearly the same as going out (I recently took the chore of roundup for the yard-feels good to do a job and take one off Bill's list). I take a pair of hiking poles that is how I get around the yard--that and with great caution... So little change to report function wise vs last report.

Here's the big deal the neck issues. Ahhh, the neck.

Here's the thing, the accessory nerve arises from the same embryonic tissue as the jugular. They are intimately entwined they go through the jugular foramen a together along with the carotid. All 3 are in one sheath.

When the stent was opened it put pressure on my accessory nerve, this caused the nerve to stop functioning correctly. It is not talking to my trapezius any more. The trapezius is a big diamond shaped muscle in the back, top of the diamond at the base of the skull, side points at the shoulder, bottom lumbar area. This large strong muscle holds up and supports your head and keeps your shoulder blades riding flat. Without the trapezius, the shoulder blade on the affected side will "wing" out so that the side closest the spine is sticking out, the head does not have a strong muscle holding it up, and the shoulders sag.

To compensate for the lack of this muscle support, small muscles whose job is to turn the head take over the task of holding up the head. These little muscles have a fraction of the strength of the trap. As a result they get unbelievably sore ie really bad neck aches and headaches secondary to that. any activity that asks you to keep your arms in the air--play piano, type on computer etc. tries those tiny muscles even MORE. They can't do this job.

So my accessory nerve got hurt during surgery. This neck pain has come to be seen as part of the post surgery deal, most of us experience some level of pain, and indeed Jeff had issues but his went away and cleared up by 8 weeks or so. Mine stopped getting better about a month ago and now needed to be tested. I was worried; had it been so pinched it may never come back?? Did we need to save it somehow?

I saw my physiatrist last Mon and she tested it. It is damaged but it is regenerating. It has already covered about 1/3 of the distance down my trapezius. She measured how far it had come and asked how many months it has been then confidently predicted by 9 months it will be all the way back. I am going to do some PT to get a good program and work on strength for it.

SO 4 PT visits have now been done, and I am already gaining perceptible movement in the trapezius. We are in good shape.

What you will want to know now is what does this mean for CCSVI?

I was treated person 2. Dr D thought he needed big stents to get the best blood flow... I have an 8 on the left and a 12mm on the right. It is the right that is so bad.

Dr D now uses smaller stents, a 6-8 to avoid this and he is doing a gentler opening technique to be respectful of the possibility of hurting the accessory.

Many surgeries have possible side effects this may remain a possibility where even if they are careful it is possible for an individual person's anatomy to be such that their accessory is somehow different and thus even with care, it could still be a possible side effect. Your results may vary :wink:

Actually it seems like most of the newer people are having an easier road getting over the neck thing and I know Dr D has been watching us to see what is what.

Lew has a non resolving neck issue himself and he is also consulting a physiatrist. I hope his result is as promising as mine. I was so glad to hear my nerve was regenerating....... I can stand this for 9 months.

Philosophically, I knew that being treated so early in the game that something like that might be learned along the way ON ME...

....it was.

Your welcome :wink:
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
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Postby Loobie » Fri Sep 25, 2009 5:23 pm

We can take anything that's going to flippin' go away!!
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Postby LR1234 » Sat Sep 26, 2009 1:52 am

Hi Marie,
I am happy to hear your nerve is regenerating.
So would you say the op for you has been not particuarly beneficial
if you feel the same as you did pre-op?

There are many of us on here who are considering the procedure but it is expensive and as always a risk.
If you are early in the RR stage would you consider this operation as opposed to waiting?
I suppose after 4 months we won't really know whether it has halted your progression (we hope it has).

Thanks
L x
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Postby mrhodes40 » Mon Sep 28, 2009 6:15 am

I have had MS for 18 years, am SPMS, and have not had inflammation for years on MRI so I would be nuts to expect a lot of change. It is not going to happen. And yes it is way too soon to know if this has stopped progression.

We will not know if it reverses the pattern of MS for people for some time when many people have been treated and followed for a long period of time and the treated people have that experience. At this point you are undertaking risk and expense for unknown gain, and if you want a guarantee that the expense and risk are worth it, you need to wait.

This is experimental there are no guarantees.

I will say that in the early days I felt very concerned and wondered what I had gotten into: the neck pain was terrible and I had complications that kept me on bed rest for a long time. My own case of MS is hopeless though; for me it was this or nothing so even in spite of that I was happy I got treated, because suddenly I have some avenue of treatment....

We'll see if it changes the course of progression with time...we all hope so.
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 mrhodes40 » Wed Oct 14, 2009 4:22 pm

Ok quickly here I am at 5 months.

My neck is still an issue the nerve regrowth is going forward supposedly but it is not cured by any means.

I did find that chiropractic care has been very helpful with this issue. PT helped some as well but the awful truth is that the nerve is not there and so....it is not there to strengthen the muscle. SO that is kind of same old same old.

But WONDERS OF WONDERS here's something really encouraging and new:

I went for a walk aide last spring, about 2 months before my stent surgery. They had a lot of problems getting it to work for me I had flexor spasms that were really difficult to work around.

So this is how a walk aide works: they have an electrical stimulation that zaps the nerve that picks up your foot, it zaps with each step so you can walk without the foot tripping you.

Here's what happened when they tried to work with me last spring before stents; we found the nerve but every time the zapper fired off I got a big spasm. It was very difficult for them to get a workable gait with it and they had to work around the spasm to get any result. Experts were called in and new electrodes purchased. They were able to get it to "work", meaning it zapped my nerve and my foot picked up a little and we did achieve a very clumsy spastic gait, but then with every step there was a spasm that I had to ride out, and when I took the machine home I found it only partially helpful. I held off on purchase. I wanted to try the bioness (competing brand) that allowed a month long in home trial so I could get a better feel for this type of device before making the purchase.

today I feel like I experienced a miracle.

I went to the bioness center and they put the device on and it worked.... right out of the box

NO SPASMS. No experts. no Frankenstein gait.

NONE. This mirrors my nighttime experience; there too I am using no spasm meds and I have almost no night time spasms.

I walked. Nearly perfectly...until the muscles I have not used for a long time got tired. :x

I went from leaning HEAVILY on my cane thinking I ought to have my rollator as I walked in to the center.....

to using the cane lightly, almost feeling like I might not need it with the bioness on my leg. :D :D 8)

When I used the walkaide, last spring-before stents, it barely helped, in large part because the spasms caused that very dystonic "Frankenstein-gait". I felt very disabled still and certainly still leaned on my cane very VERY hard. I was not at all certain it was worth the money, in fact on my trial I took it to the mall--and took my rollator, I was that unsure of my walking. It was a little tiny bit helpful--maybe. I was still thinking of getting it based on the idea my brain might rewire if we could trigger it well by stimulating the peripheral nerve. but Those dang spasms...

Although the bioness is a different brand, because they work the same with regards to the zaps that lift the foot (and that was what caused the spasms) I am crediting the incredible difference in spasms since stent placement with the success of today's trial. I walked like a normal person for all intents and purposes with that device on today.

I feel incredibly unbelievably blessed today. :D :D :D

I feel like once I get the bioness (I ordered it on the spot--6200 8O ) it is entirely possible I will be able to get out and do things again...

So take this for what it is worth... :wink:

It feels like the dawn of a new day to me.
edit for clarity...
Last edited by mrhodes40 on Wed Oct 14, 2009 7:12 pm, edited 1 time in total.
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 javaneen » Wed Oct 14, 2009 4:31 pm

Wow Marie! That is absolutly fantastic news! I am so happy for you! I hope and pray that you continue to see improvement as time goes on. Thanks for the update!
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Postby Arcee » Wed Oct 14, 2009 5:01 pm

Wow indeed! Marie, I am so very happy for you. What an encouraging development for you - and for all of us. Savor it.
diagnosed RR in spring '04
1 stent placed in left jugular vein 7/15/09
on and off Copaxone
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Postby cheerleader » Wed Oct 14, 2009 6:07 pm

mrhodes40 wrote:Ok quickly here I am at 5 months.
today I feel like I experienced a miracle.

I went to the bioness center and they put the device on and it worked.... right out of the box

NO SPASMS.

NONE. This mirrors my nighttime experience; there too I am using no spasm meds and I have almost no night time spasms.
I walked. Nearly perfectly...until the muscles I have not used for a long time got tired. :x
It feels like the dawn of a new day to me.


Marie...Jeff and I just read this together, and we're so happy for you. Lots of tears. The calming of the spasms combined with the bioness sounds like the miracle we've been hoping for. Proud of you. Keep healing.
cheer
Husband dx RRMS 3/07
dx dual jugular vein stenosis (CCSVI) 4/09
http://ccsviinms.blogspot.com
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Postby Sharon » Wed Oct 14, 2009 6:18 pm

Woo Hoo, Marie! I am so excited for you.
I walked. Nearly perfectly...until the muscles I have not used for a long time got tired.

I am crediting the incredible difference in spasms with the success of today's trial.

I have experienced the same positive outcome with my WalkAide. Prior to my surgery in June, I was starting to have minor leg spasms. Every once in awhile, my leg would stiffen which would throw the WalkAide sensor completely off kilter. Post surgery - what a difference. I walk like a normal person for most of the day. I am sure you will find the same results with your Bioness. How did you do on the stairs? I still have a problem with the stairs.
Enjoy your new freedom - you so deserve it Marie!
And, on the shoulder issue - I had my third treatment with acupuncture today. I am able to lift and bend my left arm around the back of my head under the right ear. (sure helps with the curling iron). The trapezius is still tight but it is not limiting my range of motion. We just need to remind ourselves to be patient.
You are our Bioness Woman! :lol: :lol:
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Postby questor » Wed Oct 14, 2009 6:28 pm

mrhodes40 wrote:I feel incredibly unbelievably blessed today. :D :D :D

I feel like once I get the bioness (I ordered it on the spot--6200 8O ) it is entirely possible I will be able to get out and do things again...

So take this for what it is worth... :wink:

It feels like the dawn of a new day to me.


Marie, your new day dawning is showing the way and giving hope to many others, myself included. Thank you for your honesty and perseverance, and for leading the way.

Any many heartfelt congrats on your success today.

May there be even more still to come, for all of us...

--Tracy
CCSVI Procedure 9/16/2009 at Stanford
Stent in left and right IJVs
SPMS
Copaxone
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Regular Botox Bladder Injections
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Postby gibbledygook » Thu Oct 15, 2009 3:30 am

What a complete joy! Marie, you'll be on those ski slopes again one day!!!!!!!!! 8)
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 » Thu Oct 15, 2009 7:40 am

THANKS! I am so glad to share this with you guys! I woke up several times last night and thought wow maybe I am going to be able to get a little of my life back.

ski slopes again
It's ON alex, you n me :wink: Seriously if I could even snowshoe a little I'd like that, just to get out there some.
I have experienced the same positive outcome with my WalkAide. Prior to my surgery in June, I was starting to have minor leg spasms

You know Sharon it was not what I was looking for in terms of "healing". I had kind of come to the conclusion that I was a progressive that was not going to see much if anything until 18 months. And indeed the reduction in spasms does not impact my daily life much. I absolutely was shocked at how different this experience was vs the trial last spring and what a huge impact it made to have no spasms on a electrical stimulator trial; what I got yesterday is what I HOPED for but did not see back then: an impressive improvement in walking ability.

I walk like a normal person for most of the day
Sharon what a great report, do you mean WITH the walkaide or without it? And can you quantify right on this thread since we are talking about it here what issues you were having with the walkaide before stents? was it only spasms?

Was it like this: you got the walkaide and it helped a lot at first but as time went on it was helping less and you were getting limited and starting to reduce activities because of more difficulty walking--didn't you say you were very concerned about your trip to China--but now that trend has reversed?
stairs
Heck I just ordered it!! :D I will get the full physical therapy over coming weeks once I get the thing 8) Being able to do stairs would be great.

I will go into it a little to say that as I walked, in about 5 minutes I was already fatiguing and it was because I usually limp/walk with such a lean to the left to get the right leg to clear the ground that my whole body is asymmetrical, very overdeveloped muscles on the one side and the right leg never even bears weight, I stand all the time with all my weight on the left. As a result some muscles have atrophied to an incredible level of non function.

Just walking 5 minutes exhausted all kinds of muscles that have been un used. It felt strangely good and normal to walk straight upright with my head on top of my body--it is very hard to describe.. :? I had grown accustomed to being off kilter.

I believe this will help a great deal.

Skeptics will probably point out that by adding a new device to my regimen I totally messed up any stent results I might have--like maybe I'll walk without a cane in 6 months would that be credited to stents or to bioness? But the point is that I tried to use a FES device last spring but could not use it because I was too disabled --that is the point.
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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