Zinamaria'a procedure in Minneapolis

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Zinamaria'a procedure in Minneapolis

Postby zinamaria » Thu Jul 07, 2011 1:27 pm

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
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Postby CRHInv » Thu Jul 07, 2011 2:49 pm

Congratulations Zina! Thank you for taking the time to share the details here. Keep resting, hydrating, yada yada. It is all important!
I am so happy for you!!!
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.
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Postby zinamaria » Thu Jul 07, 2011 7:59 pm

Thanx Beth, it's still guzzle, guzzle! But even today I was out from 4pm until 7pm, the hottest time of the day in the desert, 91degrees and it never bothered me! I am also finding that my gait is different, stronger. I hope eventually to get the bit of balance I lost, back....vediamo, as they say in Italian, we'll see.

Again, another great day with lots of energy...(I'm trying to be conservative!)
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Postby ikulo » Thu Jul 07, 2011 8:30 pm

What an inspirational story! I wish you continued healing and happiness.
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Postby David1949 » Thu Jul 07, 2011 8:33 pm

Congratulations on your improvements. I hope you continue improving day by day.
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ccsvi

Postby blossom » Thu Jul 07, 2011 8:49 pm

so happy for you. continued wellness wishes.
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Postby Johnson » Thu Jul 07, 2011 9:02 pm

Yay for zina!

I am very pleased to read of your renewed vigour, and heat tolerance.

Don't forget the salt with all of that agua.
My name is not really Johnson. MSed up since 1993
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Postby HappyPoet » Fri Jul 08, 2011 3:43 am

Thanks for the wonderful update!

Here's to having humongous heapings of high health, huge healing, heavenly happiness, and halcyon harmony.

:D

[NotJ, h=12]
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Postby Cece » Fri Jul 08, 2011 7:08 am

zinamaria wrote:Thanx Beth, it's still guzzle, guzzle! But even today I was out from 4pm until 7pm, the hottest time of the day in the desert, 91degrees and it never bothered me! I am also finding that my gait is different, stronger. I hope eventually to get the bit of balance I lost, back....vediamo, as they say in Italian, we'll see.

Again, another great day with lots of energy...(I'm trying to be conservative!)

This is wonderful news!!
Keep healing!
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Postby zinamaria » Fri Jul 08, 2011 8:40 am

Thanks everyone! Boy, up and at 'em this morning already, and it's hot, but hey, who cares?

But really, I appreciate all the support. I had mentioned on Cumming's thread that he did find May Thurner, nothing to worry about now as I have no symptoms. It was great of Cumming to find this, and I wanted to say for those who are not aware of this that he uses IVUS, too.
I had 80% blockage on the right jugular, was less on the left, am waiting for my stats as I was too drugged to listen properly to Cumming when he was bedside post procedure.
He is a wonderful compassionate and caring, loves-what-he-does, doctor. I mean, we flew to MN still unsure until we met him, whether or not I would follow through with the procedure, for I still had a lot of questions, and he answered every single one, and then some, the day before, totally understanding if I decided not to have the procedure.
It was worth it to me to fly to MN to make sure, and after meeting with Cumming, I was sure.

Also, if anyone is thinking of going to Minneapolis for the procedure, I highly recommend taking their advice and staying in the Holiday Inn-Metrodome (they have medical rates). The place was clean, staff SUPER friendly (because they are known for their 'medical stays', so many like you and I and others stay there for they are five minutes from the hospital).
The shuttle takes you to and from the hospital etc AND if you can manage it, the train from the airport stops also about five minutes from the hotel, and their shuttle will also get you there....no charge, but the tip for the really friendly drivers. They will take you to the train as well when you depart, again, for those of you who are ambulatory. It was only a twenty-five minute comfortable ride to the airport and the cost was less than $2 per person, vs the $45 fee with a cab.
The Hoiday Inn shuttle will take you directly to the airport if you wish, but that will be a similar fee to the cab, maybe $5 less.

One real perk, if you're into food like we are, is that across the street from the hotel there is an Indian restaurant called, The Jewel of India, and this is the 'real' deal. It was not overpriced, service was great, and the food excellent. And if you do not feel like dining after the procedure, like me, they do take-out!

Hope this helps.
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Postby Vivianne766 » Fri Jul 08, 2011 12:10 pm

Great news Z. Keep getting better and keep posting good news. I admire the fact that ur into healthy eating and yoga. So am I. Oh except for yoga and the healthy part !!! lol. ... I probably could never give up coffee... and red wine. But I think coffee and wine is good for u in moderation. I try to eat organic only.
... anyway soooo happy for u. thanks.
:)
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Your results are not unusual.

Postby DrSnyder » Fri Jul 08, 2011 12:44 pm

Hi Z - thank you for sharing your incredible story. I have to say that now three of my patients have reported that they didn't feel the effects of what we had done until two to three days after the procedure. The last patient did not have a significant change until two days and stated that he then had much more energy. The MRI beforehand did not show a whole lot of issues, but we did find a small gradient during the exam and oversized 20%. This seemed to work very well. I am hopeful that the research will help guide us into who will benefit the most from this procedure, but until then, safety first. I would advise against being overly aggressive with sizing, and opting for a repeat of a milder procedure than damaging the gentle lining of the vein.

Best regards -
Dr. Snyder
Gregory B. Snyder, MD DABR Vascular and Interventional Radiology University of Minnesota Hospital & Clinics Mayo B-228C Mayo Memorial Building 420 Delaware Street SE Minneapolis, MN 55455 <br /><br />
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Thanks too!

Postby Sureaser » Fri Jul 08, 2011 12:52 pm

I too had the procedure done in Minneapolis by the wonderful Dr Cumming! Zina, you are an inspiration to all!
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Postby zinamaria » Sun Jul 10, 2011 9:53 am

Welcome to this site Dr. Snyder, and thank you for contributing here.

And thank to all of you who posted back to me for the support. I greatly appreciate it. I still feel good, almost too much energy last week so I really had to remember to rest.
But on late Friday night I got a sever bout of food poisoning and was so sick through all of Sat that I was in bed all day, literally, have eaten nothing yet, even as I sit here and type this. I was a bit frightened at first by the nausea, even though I had no headache, but within a short time the nausea proved to be most definitely my stomach and food poisoning, not anything related to the procedure. But we were watchful, I can tell you that!

The good thing was that I could trace the poisoning to something I had eaten.

But I thought: "Oh great, here I am feeling really good, now this." And was afraid that being wiped out for a day would throw me back a bit. But today I am feeling good, and that's without any food. I'm still resting, though.

I'm wondering what any of you think of taking plavix and aspirin post procedure (which is what I am on, I also read Magoo is on the same protocol), but which I now read from Dr Arata is anti-platelet and is distinct from anti-coagulation, and does not really do anything for blood thinning? I am reading this correctly?

Would appreciate any feedback.
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Re: Your results are not unusual.

Postby Cece » Sun Jul 10, 2011 5:29 pm

DrSnyder wrote:Hi Z - thank you for sharing your incredible story. I have to say that now three of my patients have reported that they didn't feel the effects of what we had done until two to three days after the procedure. The last patient did not have a significant change until two days and stated that he then had much more energy. The MRI beforehand did not show a whole lot of issues, but we did find a small gradient during the exam and oversized 20%. This seemed to work very well. I am hopeful that the research will help guide us into who will benefit the most from this procedure, but until then, safety first. I would advise against being overly aggressive with sizing, and opting for a repeat of a milder procedure than damaging the gentle lining of the vein.

Best regards -
Dr. Snyder

Isn't that interesting though! I wonder why this would happen this way for some patients. We talk about immediate improvements and about gradual improvements but this is in between the two.

We have heard the same advice about not oversizing or being aggressive from more than one of our trusted doctors now. And we have heard directly from patients who have had complications or the loss of a jugular. 'Safety first' is a motto I can get behind.
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