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.
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...........
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.
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!