Marie's Stents CCSVI

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

Postby Sharon » Fri Nov 27, 2009 3:02 pm

Always trust your instincts.


Thanks "iknewit" -- I think we need to be reminded

Sharon
User avatar
Sharon
Family Elder
 
Posts: 1239
Joined: Sun Nov 07, 2004 3:00 pm
Location: Colorado

Advertisement

Postby CureOrBust » Fri Nov 27, 2009 6:05 pm

iknewit wrote:...I believe I'm a candidate because the MRI stated " The iron deposition pattern is a bit unusual for patient's age; there is more iron than should be present in this age group...
Did you get an SWI? I did not think an MRI showed up Iron?
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby iknewit » Mon Nov 30, 2009 6:45 am

I had an MRI of the Brain with and without gadolinium. When I read about the iron, I was concerned. I asked my GP and Neurologist, what that meant. They didn't place any importance. The MRI was compared to a prior study done 2/16/06.
User avatar
iknewit
Newbie
 
Posts: 5
Joined: Tue Nov 24, 2009 3:00 pm

Postby ariehs » Tue Dec 01, 2009 12:34 pm

Edit: Sorry!!! I clearly posted this in the wrong place!
User avatar
ariehs
Family Member
 
Posts: 82
Joined: Sun Nov 22, 2009 3:00 pm
Location: Montreal

Stents

Postby Dawna » Fri Dec 04, 2009 11:20 pm

Marie you posted awhile back:

I did accidentally turn over in bed and turn my head too hard while at the same time having it down, ie chin to chest. So it was chin to chest and turned to the side at the same time which we are not supposed to do. Not supposed to do the up version either: no tipping the head up to the sky then turning it to the side at the same time. Those movements are not good for the stent area if you have high jugular stents. My PCP told me the reason is not that they will pinch off and get crimped, as I feared, but that they might be nudged and move. A stent going free in your circulation would not be a good thing. Shocked


My question is, do you have to be careful of your movements FOREVER with these stents? Are you prohibited from looking up and sideways, for example? Or is this just a post-surgery issue that will eventually dissipate?
User avatar
Dawna
Getting to Know You...
 
Posts: 24
Joined: Thu Nov 26, 2009 3:00 pm
Location: Abbotsford, BC

Postby mrhodes40 » Sat Dec 05, 2009 7:27 am

I can move my head any way I like now, the idea is that until the stent is covered with endothelium and incorporated into the vein it could dislodge. Once it is fully incorporated it is part of you.

These are still placed in a very mobile and bony area and it would not be impossible to hurt them--ie what if you have a whiplash injury, could that hard stent in the vein cause a problem during that very sharp movement? I do not know as they are supposedly flexible, but I do wonder a bit about that.

If they could do it, opening the neck and taking out the tissue that is pressing on and compressing the jugular might be better, but I do not know if that is even possible.
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Kudos!

Postby dialed_in » Sat Jan 02, 2010 10:26 am

Amazing...

Congrats to you Marie on the rewards you're acheiving, you certainly deserve them!

JSYK I'm a 39 year old NFL fan from Canada. A month or so ago I was watching football on CTV here and saw the commercials for the report on W5 that was going to air that night. So I tuned in and watched the report on CCSVI. That got me googling and I wound up here at TIMS. After reading a few hunderd posts in this forum I finally read the entire 59 page thread over the last week and this 11 page thread this morning.

These last 11 pages have been a book I couldn't put down. I have no idea how many times I got choked or teared up reading them. After seeing how much work you put into gathering info and researching this, it was great to read about how much it has helped you. Thank you for letting us ride along and see what has happened in the last year. It really is amazing.

I hope you've been well and are still improving.
Best Wishes
Rich
User avatar
dialed_in
Family Member
 
Posts: 47
Joined: Sat Dec 19, 2009 3:00 pm

Postby CRHInv » Thu Feb 18, 2010 4:07 pm

How are you?
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 2:00 pm
Location: Chandler, AZ

Postby mrhodes40 » Wed Mar 03, 2010 4:49 pm

Nearly 10 months.

Wow. I am nearly never here any more. Please forgive me for the lack of response, and thank you so much for the kind thoughts and good wishes dialed in and CHRv and everyone!

I will repost my second opinion post from the CCSVI thread so I can comment on it and keep track of this here.
http://www.thisisms.com/ftopic-9541-0.html

In another thread Prof8 detailed a visit to a neural radiologist and a positive outcome from that conversation. See that thread above.

I consulted an interventional neuroradiologist this week as well. I have not been on the board much because I'm working now, so for those who don't know me I was the second person treated at Stanford and I have bilateral jugular stents. You can read my regimens entry by clicking the link at the bottom of this post if you want to know the whole story. I did have accessory nerve damage which required treatment that was caused by my stent surgery.

My visit with the neuroradiologist was just as positive as Prof8's was.

I want to especially make these points:

With regards to whether or not the carotids can be harmed by my stent, which in the case of the right jugular is a 12 mm stent (one half-inch), the answer is no.

The Dr. seemed puzzled that I thought the stent could harm the carotid. Of course this was something another Tims member was told by a vascular Dr. they consulted. He asked me have you held your stent? I said no he left the room and brought me one. It was as soft as a piece of lace and could be moved, twisted, flexed anyway at all and it returned to its original shape. The slightest press on the side of this stent and it readily gave.

The doctor said to me "you see how soft that is-- the carotid is very strong and has a very thick wall as the pulse moves down the carotid that stent will just move out of the way. If I had put a stent in that area of your neck I would have chosen the exact same stent."

I said well how did they get accessory nerve damage then? He replied "it had to of been when they put the balloon into the area to try open it up." He also assured me that this stent living in my neck from here on is not going to harm the accessory nerve any further. He seemed familiar with the accessory nerve syndrome because he said to me "you doing your shoulder exercises?" As he flexed his shoulders at the same time. When I nodded he said when those muscles are back in alignment and all the inflammation has gone down, I would expect that that syndrome would resolve completely. It takes time". I did have an EMG by a physiatrist and the nerve is regrowing-I knew that already. But what the physiatrist didn't know was how much pressure is going to be on the nerve long term from the stent. The answer is not much, if any.

It's worth noting that carotid endarterectomy is a fairly common procedure in a known side effect is accessory nerve damage. It may be that he has seen this before.

He also commented that if my stents should plug up, he would be able to go in and do something to open it back up again. He also would be willing to do my follow-up this spring.

It was very clear, abundantly clear, that nothing he heard from me sounded in any way questionable to him as far as procedure and stent placement. He does want me to get my venograms and he would like to see the stenosis befor the stents were placed as well as the pressure readings from the operating room. When he sees this, he will be able to make a full second opinion. But the preliminary visit left me with no feeling that he had any concerns with regards to the fact that stents had been placed in my jugular veins. In fact, it seemed that what I was talking about was fairly ordinary to him.

He did have some concerns regarding whether or not such a procedure would actually help MS. He was clear that with only one study on treatment this is fairly preliminary with regards to that question. however, while he is not wanting me to let his name out to others for treatment, he is looking at this very seriously from the standpoint of whether or not to offer this.

I got the feeling that the real issue is whether or not insurance companies feel there is justifiable reason to repair these stenoses and cover the surgery. He offered that it is thought that if the jugulars are blocked the blood will simply re route through the other veins and that this should not be a problem. He pointed out that the work that says it is a problem is Zamboni's, but he reminded me that we do not know that much about the venous system so it is important that we be open minded about what we do not know there. For himself, the issue was not one of "safety" it was one of "efficacy".

He shook my hand several times thanking me for bringing this to his attention. He and his partners he said are very interested in this new paradigm; they have had a meeting on it already. I had sent him a considerable amount of literature before our visit and he requested several specific papers if I had them. Naturally I was able to accommodate.

I would like to suggest that others who are looking for care might seek the advice of a local interventional neuroradiologist. At least one can have a conversation with someone who is familiar with stents.

BTW, this doc said he has not be flooded with requests for care...So if you have an interventional neuroradiologist nearby who takes clots out of stroke victims, give the office a call....you might be surprised at how ordinary this all sounds to him........... 8)

Edit: note that this advice was given to me for my situation. Please see a local INR and see what they may say for you. I have had some- interesting- PM's on this so wanted to clear that up.


from THIS THREAD

I have not been back yet they are still waiting on getting the venograms from Stanford, but I will update this regimen thread when they do.

OK now for the good news. Last week I went to the rehab doctor, the one who diagnosed the accessory nerve damage after the operation at Stanford. She did the testing for that with an EMG some months ago. I went back and the nerve has regenerated all the way down. I am weak because I need to build the muscle up, but it appears it is only a matter of time. This confirms the opinion of the INR doctor quoted above . The accessory nerve damage has been really miserable, but it appears to have healed --now it is just a matter of getting rid of the remaining "adaptive issues and problems" ie the muscles that are overused and sore because of it. I would estimate that I am 90% normal in the shoulder as far as the problems that came from the accessory nerve pinch. YAY!

And rehab MD and I talked about the fact that the flaxor spasms are gone but the stiffness remains. I walk stiffly, my R knee does not bend hardly at all and this is the fly in the walking ointment. The bioness works pretty well but it can't make my knee bend. because of this I remain really walking disabled. She has decided to have me take a low dose of baclofen and see if that helps with the stiffness. I am going to try a small lift on my left leg so my right leg can swing through also and see if that helps. SO that is the new plan.

I hope to post a follow up to the above post soon when I see the INR again. Thank you! :D
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby CRHInv » Wed Mar 03, 2010 5:36 pm

Wow Marie, I am so glad to hear from you. I am so glad you are continuing to make progress. Keep us posted!
Beth
dx 4/09 * Stanford appointment 11/09/09 * One stent left, low jugular 11/10/09!<br />One year from treatment, I have my life back.  Placebo schmebo.
User avatar
CRHInv
Family Elder
 
Posts: 402
Joined: Sun Aug 30, 2009 2:00 pm
Location: Chandler, AZ

Postby spiff1970 » Tue Apr 20, 2010 9:41 am

Dear all,

For those who have done the procedure, can you tell me what was the size of the stents used in the Jugular veins? My VS in Portugal wants to do the procedure but he does not know what size or calibre is being used and is being searching for that info.

Thanks,

Spiff
User avatar
spiff1970
Family Member
 
Posts: 25
Joined: Mon Apr 19, 2010 2:00 pm

Postby CureOrBust » Wed Apr 21, 2010 3:31 am

I would suggest he talks specifically and directly to the doctors who have performed similar procedures. Their names are all over this web site, and their emails are all over the net.
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

Postby mrhodes40 » Wed Apr 21, 2010 6:50 am

Thanks Cure, I agree.
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby mrhodes40 » Sun Jun 13, 2010 7:09 pm

I went for my one-year follow-up at Stanford last week.

My right jugular is wide-open no problems. The stent is fine with no thickening and excellent blood flow.

The left is a different story. The stent itself is absolutely fine. However, the rest of the vein has collapsed/stenosed and is not carrying much blood flow at all. Dr. Dake said this vein is underdeveloped it actually has poor blood flow all the way up into the brain.

This poses a conundrum.........

I clearly have vastly superior blood flow for my brain than I did last year. The excellent circulation through the right internal jugular vein is supplying my brain with supposedly "adequate" blood flow....in the past such great blood flow on one side would be considered enough.

But the whole point of CCSVI is that both sides need to be free flowing and open to prevent reflux into the brain.

So the question becomes: is the right enough FOR ME?

Symptom wise ...........
I remain almost free of flexor spasms I rarely am bothered by them. I actually have fewer than I had while I was on the drugs that were supposed to keep them away but didn't. I took those drug for 15 years and the doses slowly increased to keep thing tolerable over that time. It is still remarkable that I am fine without the medication. I sleep well and wake up feeling rested most of the time. I am working many hours every day where I used to nap at least once a day.

However, in March I started feeling unwell; weaker and tired my leg felt heavier, it was like someone flipped a switch on me. I wondered about my thyroid, I gained some weight too. I went to my primary care physician who did a large workup and it was discovered that my old nemesis, thick and sticky blood, was back.

This is kind of a non-MS but vascular problem that I have had for several years. I had blamed not feeling well on this coagulation issue and I was started on medication to correct this problem. The medications were effective and my blood work returned to normal values but I continued to feel weak and tired. I started to think maybe I was feeling MSy---but I was not sure what was what because the spasms stayed away and overall I still felt better than before the stents.

Now that I know my left internal jugular vein does not have blood flow I am wondering how much of my March decrease in function is related to that. Is it possible my "adequate" right jugular is not really enough? It is clearly enough to maintain some of my gains, but is it enough to prevent iron deposits in the deep brain? to prevent progression?---buying the unproven CCSVI model here of course--- probably not; the whole point is that stenosed veins such as my left side are thought to cause reflux and slow damage.

Another related question is: Is it possible that a valve issue low down is making my whole left jug look collapsed and dwindled? I need a venogram!

Dr Dake and I formed a plan....

Earlier in this thread I mentioned my "second opinion" neuroradiologist /physician. I am going to see this man who thought he could do dopplers on the deep veins when I consulted him the first time. Hopefully he will be able to do dopplers or another diagnostic and see if the stenosed left jug is causing reflux. If he sees reflux then I can have a venogram to see if there is a valve issue lower down on the left and Dr Dake will know something new about supposedly good blood flow on one side.

You may wonder why didn't I just request a venogram at Stanford? If you read through this whole regimen thread it will be clear that I had significant issues with rectus sheath hematoma and accessory nerve damage and problems staying stable on the Coumadin.

The hematoma of course cleared up quite quickly, and the accessory nerve has regrown though I still am working at rehabilitating the shoulder (I broke the shoulder a few months before I got stents most of my issues are related to that now but the two problems complicate each other). The upshot of it is that I did not want to do another procedure unless it was needed and since Dr Dake doesn't have anyone who can do dopplers we could not establish whether or not I have reflux.

My MRI's have been unchanged ever since I went on copaxone in 96 or so, the new one is great no enhancement no new lesions and possibly one lesion reduced in size (I only have 4)

so that is my update--I'll post something about my follow up appointment with the local guy. Surely it'll take a week or two more to get dopplers as well.
marie
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
User avatar
mrhodes40
Family Elder
 
Posts: 2066
Joined: Thu Sep 23, 2004 2:00 pm
Location: USA

Postby CureOrBust » Sun Jun 13, 2010 9:27 pm

mrhodes40 wrote:...This is kind of a non-MS but vascular problem that I have had for several years.
What? are you kidding me! :P
User avatar
CureOrBust
Family Elder
 
Posts: 2925
Joined: Wed Jul 27, 2005 2:00 pm
Location: Sydney, Australia

PreviousNext

Return to Regimens

 


  • Related topics
    Replies
    Views
    Last post

Who is online

Users browsing this forum: No registered users


Contact us | Terms of Service