This Is MS Multiple Sclerosis Knowledge & Support Community

zinamaria
Take heart,
You'll be just fine;
Dear friends have seen to this.
Your life anew,
To be sublime ~
Behold our deepest wish!

~HP

zinamaria, at AAC, they had me change into a hospital gown for the procedure. It was still helpful to know to bring comfortable clothes for afterwards. All the best wishes for Tuesday!!!

Cece wrote:zinamaria, at AAC, they had me change into a hospital gown for the procedure. It was still helpful to know to bring comfortable clothes for afterwards. All the best wishes for Tuesday!!!

Great advice, Cece -- the groin area can be sore afterward.
Try not to wear a bra; putting it on might be painful afterward.
It's best not to wear jewelry.
You'll be given a locker for your clothing/personal belongings.
You'll be given hospital socks to wear.
Nurses will shave both sides of your groin area.
Bring a book for waiting times before/after the procedure.
You'll be given something to eat after the procedure.

Edit: Thanks, Cece. I mistakenly thought Dr. Cumming is part of AAC.

HappyPoet is right with the advice, but zinamaria is being treated at HCMC with Dr. Cumming. I was the one mentioning AAC because that was where I was treated. Sorry for the confusion!!

I was treated at HCMC and the staff is fantastic. You do have to change into a gown and I wore very easy to get into/out of clothes. Once the procedure is over you go into recovery until they are sure you have stopped bleeding and you have been seen by your Dr.

If someone is with you they can be in recovery as well and they can be with you prior. My belongings were with me the whole and I wore no jewelry.

Thank you everyone! This is most helpful...

Johnson, I'm going to say it here...YOU are a first class BRAT!! But really, I prefer the natural look but don't think they would appreciate the Italian beach scene in the hospital....how you have made me laugh..

Okay, this helps because one wants to shine, JOHNSON, (I always take my vanity everywhere I go!) and I certainly did not want to be stumbling over the tiny details that no one bothers to mention until you're there...besides, J, you are a boy, and we all know how they are!! hee hee

Thanks again gang, and Happypoet thank you so much for the beautiful poem.

Cece wrote:

DrCumming wrote:

Brainteaser wrote:Cece, I'd like to hear what Dr Cumming has to say on this very serious issue. As you quote '....repeated dilatation causes repeated intimal injury and perpetuates the intimal healing response. ' If people are being retreated frequently, there is greater potential for intimal damage. Additionally, my reading of 'Re-stenosis occurring 3 to 12 months after angioplasty is typically due to intimal hyperplasia.' does not necessarily mean that there can't be intimal damage in less than 3 months.

We know, from our dialysis patient population, that we can safely redilate veins many many times. I have a group of patients that routinely come in every 3 - 6 months for repeat dilation.

We always cause intimal injury by ballooning. To gain luminal diameter, it has too happen.

In another thread, restenosing is being discussed, so I looked back to what had been said about dialysis patients.

Is it that we can safely redilate veins many many times, as long as the balloon sizes are appropriate?

Hi Cece, I will try and post some thoughts about restenosis in another thread. Been a very busy few weeks.

Am in MN and saw Doctor Cumming today, will be in tomorrow (wed) early for the procedure and will not start a thread but may post here sometime next week.

I now know without doubt that I am in very capable hands. The experience thus far, after our meeting with the doctor, was so very positive. Dr Cumming answered every one of our questions (and believe me we had many!) without haste, with clarity and knowledge in what he is doing, and at the same time understands that we are in the middle of scientific discovery and there are also many questions without answers.
He in no way attempted to 'sell' or 'push' me into this procedure, which I was not totally sure I would actually have, until I felt sure I was in competent hands, and with someone I can trust.

I am not going to, at this point, get into the 'science' of CCSVI. I know what I know, (after one and a half years of watching and leaning and waiting, for as most of you already know, I was in Italy in winter '09 and almost had it done there with Zamboni and Salvi, but they were unable to do it due to government politics); there is a lot we don't know, and although I also don't know what I don't know, I am certain this is a good next step for me.

Please keep me in your thoughts. This site has been immensely helpful to us.

Z

zinamaria,

So happy everything worked out for you! You sure did your homework regarding CCSVI, and you picked a terrific doctor. I'm still envious that you got to meet Drs. Zamboni and Salvi.

We'll all be holding you in our thoughts today.
Sending positive vibes.

thank you happy poet!

been sleeping all day, they must have given me some good drugs! procedure went well, too tired to post now, will post something tomorrow.
want to thank dr cumming and his team, they were utterly fantastic, competent, funny, sensitive, really really wonderful, can not imagine a smoother experience.
thank you dr cumming and team!

Hi folks,

I guess I could start an independent thread, but also don't want this thread to get lost in the shuffle as I am very happy to have had the procedure done by Dr. Cumming on Wed, the 29th. I have rested all this day, Thurs, and leave MN tomorrow for home in Santa Fe, NM.

I am not really all here enough to talk about the procedure, but I do remember hearing that my right jugular was 80% blocked and the left less so. Maybe Dr. Cumming could post when he has a chance, I certainly do not mind if he reports what my issues were. There were not many, nothing in the azygous although he did find May Thurner's.
I do feel IVUS is the most accurate diagnostic tool available so I do feel that I had a thorough reading of the veins!

There are no obvious changes I can report, and I have a feeling they will either be slow in coming or not at all, but I am not concerned at the moment and am happy I had this done, as yet one more approach in the mystery that is MS in terms of eliminating all possibilities to heal, which, given all that I do already, I do feel the effectiveness, so I do think this will bring some thing to the table.
I mean, there is now blood flow that was not there, and because I feel this is a life time project of management of a condition we still know so little about, and until we know more, I will continue to explore therapies.

Again, I must thank Dr. Cumming and team, as this was a most positive experience.

Z

So happy to read this, Zinamaria. 80% is a severe blockage. There are doctors who would not have found the May thurners because they do not look for it. I agree about the IVUS!! So glad that this has worked out for you!!

Alright, well I've waited a week to post anything related to my procedure, (done on the 29th of June by Doc Cumming) because I am a natural skeptic and truly did not want to give false reports based on the 'high' of having just had the procedure, which, as I posted earlier, was a great experience all around as far as doctor, nurses, hospitals, hotels and flights are concerned.

Let me preface this little treatise with saying a few things about my health and MS.
First, I have never used MS drugs, I was diagnosed in 2001 (but had first major relaspe in 2000) with Relapse/Remit. I did not hesitate to change my life utterly, giving up a restaurant business, a bad relationship, all things toxic got dumped. and I got into the health books and the like and into the diet changes immediately, started a yoga practice and never went to another neurologist for I was not going to live my life 'identifying' with MS, constantly checking on my brain, etc. All the numbers, how many lesions and all that means nothing to me.
How I feel is everything.

I have run two marathons, was running many miles daily at the time of diagnosis; it was not an easy diagnosis based on what I looked like, but, alas, the symptoms were there, and there was no denying that.
I mention this because I know the fitness of my life is the base of my recovery now, and the basis for my continued health.

We moved to Italy in 2007, at which time I traveled with ease. I always had minor symptoms after transitions, stress related, but they would go away. While living in Italy in the fall of '09, I had a major relapse, brought on, I believe, by stress, using turpentine while painting with oils, which is a very toxic paint thinner, and basically realized, 'gee, I guess I really do have MS'...it changed my life.
Dr Fabrizio Salvi administered cortisone, the first drugs ever (and hopefully the last) for MS.

Since then we have moved back to the states. Although a skeptic, the one area I am not skeptical about is diet and exercise, and positive thinking, including positive affirmations, never telling myself I am sick or weak, acknowledging it when it's there, but still always telling myself I am getting stronger... I have seen the remarkable changes in my life due to a steady yoga practice and trying to navigate through the myriad diet suggestions to see what works and much more than that. But I am not where I was before the relapse of '09, which is my goal.

It is all trial and error, but I am very connected to my body and listen to what it tells me. Three years ago, (while living in Italy) I gave up alcohol completely, only drank red wind (can you imagine living in Italy without drinking red wine??), but gave it up for good, before the relapse feeling it was not doing me any good. I have not missed it a bit. It is my belief, as it is Ann Boroch, whose book 'Healing MS (she has MS) says it's like pouring acid on the nerves, and I happen to agree with her. After all, our nerves are involved here!
I had given up caffeine many years prior to all this, it will simply, as a steady drink, kill your adrenal functions.

Before the procedure, mainly since our return to the states, I have slowly gotten stronger because, I feel, I am so dedicated to all the things that I KNOW, not just believe, are working for me. Sure, I have deviated, slipped off the wagon etc, but I always return to the baseline thinking that my body wants to heal. I had to sit in a wheelchair to make it through the Rome airport and Washington, D.C. airports this last fall, not because I could not walk, but because I was yet not walking well and was totally overwhelmed by the transition we were making.

Since we have been back in the states, I am on my mat daily, at least three times a day, even if it means laying there and stretching my arms over my head, but gradually, with steady practice, I am getting stronger. I was even, pre-procedure walking a half mile four times a week, albeit it was not too easy, but that has never stopped me.

Why am I telling you all this first? Because since learning about CCSVI I have wondered how the procedure could benefit me since I have already been improving and moving in such a good healthy direction. But, I will try anything (except the DMD's) to see how I may be affected further.

The procedure itself went very smooth, under those competent hands of Cumming. But I must say, it felt like a major event for me. It did not feel 'just' like a 'day' procedure. But, I am sensitive to drugs, to body invasions and all that, so I slept straight through those four post procedure hrs in the recovery room. I DID NOT feel any immediate changes, of the kind I have read about on this site. This made me a bit depressed, but I knew I would not make up changes, and would simply stay as honest as possible about how I was feeling.
I slept all day the following day. Then slept some more the next day, and we then departed MN for home, in NM. I still did not feel like so many have mentioned here, I DID NOT have immediate energy. But I have always relied on sleep and rest, and the body does heal while we sleep.

In the airport as we were departing, I walked, pulling my carry-on, to the terminal. I was again, saddened at not feeling so strong. But I have to say, that I knew that if there were going to be any changes, they would take time, if happen at all. I know my body well enough to know that it takes its sweet time catching up to my mind, which wants results a bit faster. But I ignore those thoughts and defer to my body.

I am a patient person, because healing MS is my lifetime occupation. I was not feeling awful, I was not feeling super-duper, as much as I was feeling 'the same'.

We pre-boarded our flight, and luckily it was not full and I got to take two seats to lay down and sleep. I was told by Cumming, and this makes so much sense, 'LIE DOWN' as much as possible in these next two weeks! So, at every opportunity this is what I am doing, too.
We had a plane change in Arizona, I was feeling rested and 'good'. What I did notice, though, is that I was not overwhelmed in the airport, with all that activity around me I was feeling alright.
Oh, I forgot to mention that my bladder pre-procedure was really starting to change for the better because of the exercises I do, and also because I am finding alternate ways to deal with anxiety, which is a trigger for my bladder.
Well, in the hotel post procedure, I was drinking so much water, to flush the dye and whatever else they injected into me, out of my system. I mean, I was non-stop drinking! So, I was peeing constantly, absolutely no bladder control. Back to incontinence is not encouraging, but I have reminded myself of all the liquid, still, I am drinking (I mean, I do live in the desert and it is very hot right now!) I have no doubts that the bladder will return to where it was pre-procedure, but I mention all this because many mention it as instant relief post-procedure.

When we got to the airport in NM in the eve, after all day travel, we got off the plane and started to head towards the first floor. When we had left NM for MN I again had used a wheelchair to get me to the terminal because I did not want to tire myself out, again, I could have walked, but thought to be conservative...many of you know how that is.
But here we were, at the same terminal, just going in the opposite direction, and lo and behold! not only was I pulling my carry-on, I felt much energy to navigate the escalators and all that walking! It was definitely much more than a half-mile to get to the shuttle that was waiting for us outdoors. Daniel noticed my energy even before I did, nothing like another observer to give you feedback, and one who lives with my MS.
Not only did we get downstairs, to the shuttle, to our car, when I wanted to go to get something to eat. Now technically, by this time pre-procedure, I would have definitely been tired and wanted to just get home...but that night, I felt nothing could stop me. It was very weird.
We went to Whole Foods, where not only did we get something to eat (and now it was going on 10pm) I was dancing in the aisles, literally, to James Brown...he always get me going.
I just felt such a surge of energy.

Well, time to conclude now that I have written a memoir, but the first few days home, I was back to feeling a bit tired and like nothing had really changed. But then this last Monday I resumed my walking, my yoga practice, and I can tell you this, it is not easy thing to take the doctor's orders and lie down!!!
I even jogged a little this morning went further than usual (okay, mind you, it's a shuffle and I look like an eighty yr old out there), but I don't give a d---what I look like, for me, it was jogging.

I should not be sitting here spending all this time writing all this down, and yet I feel I owe it to this community to do so, and yet I should be LYING DOWN! But, not only did I get up early to beat the heat, and did not really beat the heat, the HEAT felt great, like it used to! And when I got home and in the door, I did not collapse on the couch or run to the shower to cool off, I just kept doing what needed done around the house as if I had done nothing. And here I am continuing 'to do' five hrs later.

These are clear changes, subtle, yet they are there. My fingers are getting a little sloppy right now, and it is already past noon, I got up at 7:30am...so even though I know I could do a bit more right now, I am going to lay down.

I just have more energy, and this is new. And this means less fatigue. But I am cautious and will still not overtire myself, I want this to last.

Thanks for putting up with this very lengthy entry.

Thank you to Dr. Cumming, once again, (another yogi!)....and keep faith in your body, is what I want to say to everyone here.

Zina

A lot of interesting topics came up during my doppler ultrasound appt with Dr. Cumming last week. One in particular is this:

After our veins are ballooned, the top inner layer of the vein is damaged and the second layer is exposed. This second layer is sticky. Dr. Cumming has seen this in prior work on pig veins. This exposed layer is sticky like glue. When we are lying down, our jugulars are fully flowing and the flow itself is keeping the vein walls from touching.

Then we stand up. Upon standing, our jugulars shrink to 10% of their size, as the flow goes down the vertebral veins instead. So imagine these jugulars, with walls that are like glue, and suddenly they are brought in close contact with each other.

We have intimal hyperplasia, elastic recoil, scarring and clotting as known possibilities, but none of them really describe this scenario, where the gluey walls of the jugular simply stick and grow together.

There is an easy way to avoid this, if it is indeed happening. All we'd have to do is lie down, until the vein wall has had a chance to heal. This could take a week, which is a long time to be on bedrest. It might be unnecessary but it might make the difference with this type of restenosis. It's an idea that's easily tested, if patients were in a 'resume regular activities immediately' group vs a 'one week of bedrest' group.