New MS Treatment?

[Villagemaid]

I wasn't given the option to stent as with repeated ballooning they acheived optimal bloodflow by the opening with the balloon. The doctors make the final call on whether to stent or not, it is not decided by the patient.

I will be having my 'annual appointment' at the Clinic within the next two months. I can't wait to go in there and show my neuro and see what he has to say. I want to bring in a tape recorder and then let's see what he will say, or not say.

[Logitack]

are you going to take a video camera with you and record what the neurosurgeon says? then you could do some additional footage of telling your story and how you feel now and how you felt before. post it to youtube, send the link to the news media. just sayin....

[Villagemaid]

Yeah...I should've done a video of before and after. But, I I honestly didn't think I was 'as bad' as I thought, or that I would see 'substantial improvements'. I thought that since I was 'doing well' (as I've been told so many times by others) that the improvements would be minimal - NOT LIFE CHANGING!!!!!

I used to have to go slow up the stairs, always hang on to the railing, and was getting fatigued at the top. Now I can run up the stairs!!! It's amazing!!!

We'll see what the Neuro says, if he even lets me take in a tape recorder!

[Fritzthecat]

Yeah...I should've done a video of before and after. But, I I honestly didn't think I was 'as bad' as I thought, or that I would see 'substantial improvements'. I thought that since I was 'doing well' (as I've been told so many times by others) that the improvements would be minimal - NOT LIFE CHANGING!!!!!

I used to have to go slow up the stairs, always hang on to the railing, and was getting fatigued at the top. Now I can run up the stairs!!! It's amazing!!!

We'll see what the Neuro says, if he even lets me take in a tape recorder!

Don't tell him you're taping him.
If your neuro is who I think it is, well....let's just say I would love to be there for that one!
Wipe that smug "I'm making money hand over fist pushing ineffective drugs" look off his face.

[Queen K]

Villagemaid, why tell him you've had treatment at all, if he's a real Dr. won't he be able to tell that, hmmm, something's different here?

[peaceseeker]

Yeah...I should've done a video of before and after. But, I I honestly didn't think I was 'as bad' as I thought, or that I would see 'substantial improvements'. I thought that since I was 'doing well' (as I've been told so many times by others) that the improvements would be minimal - NOT LIFE CHANGING!!!!!

I used to have to go slow up the stairs, always hang on to the railing, and was getting fatigued at the top. Now I can run up the stairs!!! It's amazing!!!

We'll see what the Neuro says, if he even lets me take in a tape recorder!

Though I hope that they would, I doubt your neuro will allow you to record a word he/she says. Besides, they can be so pig-headed I wouldn't be surprised if you were looked straight in the eye and told what you are experiencing is simply a 'placebo effect'...nothing more.

Oh how I hope (my sister) and I benefit from having the procedure...perhaps I will be able to run (haven't done that for 8 years - and do understand it's a bit of a long shot) down to the MS clinic and give my neuro a great big sweaty hug!

Run with it, Villagemaid...just run with it. I'm so very happy for you.

[Villagemaid]

Fritz....yes....SMUG LOOK says it all......hmmmMMMMMMM.........????????


Queen....I thought of that, but almost don't want to give him the satisfaction. Actually tho, it might be good to go through the whole appointment and tell him in the end...here's why...

When I saw him November last year, he went thru the typical motions of the 'yearly checkup'.....heel-toe walk, nose touching, looking at eye movement, checking muscle strength and reflexes...asks how the last year has been....hands you your prescription and then gets up and starts for the door......that's where I asked him 'hang on, do you have a few minutes to talk about this new ccsvi stuff?"....to which he did all but roll his eyes, huff a bit, sat back down in his chair like an annoyed school boy and said "well then, whaddya wanna know? It's just a theory, in it's infancy and we need alot more researcha nd trials to know if it even really is a treatment.".....and that was it...oh yes...he also told me to dismiss it.

So, if I go the whole appointment without him knowing I had the procedure in Bulgaria and have him tell me 'wow, you've made great improvements over the last year'....and then I'll tell him 'wow, without the Copaxone for the last year, who knew THAT would've happened?" and then wait until he's on his way out the door and then say....."Oh, by the way, it must've been the angioplasty I had in overseas a few weeks ago." and then make MY way to the door....lol.....

[peaceseeker]

Fritz....yes....SMUG LOOK says it all......hmmmMMMMMMM.........????????


Queen....I thought of that, but almost don't want to give him the satisfaction. Actually tho, it might be good to go through the whole appointment and tell him in the end...here's why...

When I saw him November last year, he went thru the typical motions of the 'yearly checkup'.....heel-toe walk, nose touching, looking at eye movement, checking muscle strength and reflexes...asks how the last year has been....hands you your prescription and then gets up and starts for the door......that's where I asked him 'hang on, do you have a few minutes to talk about this new ccsvi stuff?"....to which he did all but roll his eyes, huff a bit, sat back down in his chair like an annoyed school boy and said "well then, whaddya wanna know? It's just a theory, in it's infancy and we need alot more researcha nd trials to know if it even really is a treatment.".....and that was it...oh yes...he also told me to dismiss it.

So, if I go the whole appointment without him knowing I had the procedure in Bulgaria and have him tell me 'wow, you've made great improvements over the last year'....and then I'll tell him 'wow, without the Copaxone for the last year, who knew THAT would've happened?" and then wait until he's on his way out the door and then say....."Oh, by the way, it must've been the angioplasty I had in overseas a few weeks ago." and then make MY way to the door....lol.....

my neuro acted in the exact same manner. I wonder if we have the same one?

[Queen K]

I have a feeling someone's neuro is going to look like a quack stuck in the Middle Ages sooner than later.

[Fritzthecat]

I have a feeling someone's neuro is going to look like a quack stuck in the Middle Ages sooner than later.

Well...."our" neuro with the SMUG LOOK doesn't exactly have the best reputation with patients (as well as others...)

He's a money grubbing drug pusher who is on the edge of, if not already over, the line of violating his own code of ethics.

[Villagemaid]

I have a feeling someone's neuro is going to look like a quack stuck in the Middle Ages sooner than later.

Well...."our" neuro with the SMUG LOOK doesn't exactly have the best reputation with patients (as well as others...)

He's a money grubbing drug pusher who is on the edge of, if not already over, the line of violating his own code of ethics.

Pretty much Fritz...pretty much!!!

[Queen K]

Note of interest to all those who are lurking in these MS threads but not saying a darned thing.

The Cap. News ad that caught my eye is in today's paper. The ads have begun and it goes like this:

Are You Suffering from MS? CCVSI Diagnostic Imaging Testing Now Available. Why wait? (For BC, the pathetic Province full of Neuros who are more interesting in maintaining power over your life to get you a MRI right away.) Okay I added what they MEAN and believe me, that's how I read it.

AIM Medical Imaging, Vancouver, BC

http://www.aimmedicalimaging.com


I see that they are towing the current line that there is no proven link between CCVI and MS blah blah, but believe me, if they find blocked veins, you now have to make the decision. Who's in charge of your health?

[peaceseeker]

Embryological background of truncular venous malformation
in the exracranial venous pathways as the cause of chronic
cerebrospinal venous insufficinecy
http://www.fondazionehilarescere.org/pd ... 8-ANGY.pdf

B. B. LEE, J. LAREDO, R. NEVILLE

Department of Vascular Surgery, Georgetown University Hospital, Washington DC, USA

The truncular venous malformation (VM) represents an embryologically defective vein where developmental arrest has occurred during the vascular trunk formation period in the 'later stage' of the embryonic development. A relatively simple truncular VM lesion such as a venous web at the hepatic venous outlet caused portal hypertension giving a profound damage/impact to the lover. A similar condition involving the head and neck venous system may cause chronic cerebro-spinal venous insufficiency (CCSVI) and may be involved in he development or exacerbation of multiple sclerosis.
[Int Angiol 2010;29:95-108]

Key words: Abnormalities, multiple - Cerebrospinal fluid - Venous insufficiency.


The entire article can be read here...
http://www.fondazionehilarescere.org/pd ... 8-ANGY.pdf

[peaceseeker]

Up Close and Personal with CCSVI
Ashton Embry,
September 03, 2010
https://docs.google.com/viewer?a=v&pid= ... ohxg&pli=1

My work on MS over the last year has been almost entirely dedicated to finding out as much as possible about CCSVI. We now have enough solid data to say most people with MS have impaired venous drainage and that this problem is an important part of the MS disease process. Furthermore, it is becoming indisputable that the treatment of CCSVI is helping many people with MS to recover various functions and to be relieved of numbing fatigue and brain fog. In fact, some of the recoveries are nothing short of spectacular.

My son has faithfully followed nutritional strategies (Best Bet Diet) for the past 15 years and he has remained in very good health with no MS symptoms. When it became apparent that CCSVI was an important part of the MS disease process, I naturally wondered if my son had impaired venous drainage and whether or not it was causing subtle damage which would one day result in serious clinical problems.

We discussed the question of having him tested and possibly treated for CCSVI in February and, at that time, Dr Simka’s clinic in Poland was about the only option. Given his lack of symptoms and the long wait period (2011) at the Polish clinic, we thought we would wait until other options were also available.

Not long afterwards, my son started reading various internet accounts of CCSVI. I can still remember the day he told me that he had various subtle symptoms that were being commonly ascribed to impaired venous drainage. These included very restless sleep, feeling lousy and somewhat listless in the mornings, bouts of severe depression, pressure behind his eyes, explosive nose bleeds, and not feeling well until he had a long hard run and two or more cups of coffee. This was the first time I thought we might want to act sooner than later.

In May, my son had a Doppler scan at a Canadian clinic and that showed some “turbulence” in his right jugular. On the basis of this result and his potentially CCSVI-related symptoms, we decided to make plans to get a proper evaluation and possible treatment at a clinic. By good fortune we were able to get a booking at Dr Simka’s clinic in mid-August due to a number of cancellations.

On Monday, August 9th, my son, wife and I arrived in Katowice, Poland and checked into the Qubus Hotel. There have been a number of published accounts of CCSVI visits to Katowice and our experiences were very similar. One thing I might mention is that, before he had the procedure, eye and neurological exams revealed no neurological deficits. We explained to the neurologist we were there for preventive purposes.

Wednesday morning was the big day when we and five other families went to the hospital for the Doppler exam and the following venography and angioplasty. Soon after everyone was settled, Dr Simka arrived with his portable Doppler machine and he quickly determined that my son’s left jugular was completely blocked (no flow) and that the right one was partially blocked.

My wife and I were rather shocked at the severity of his CCSVI and all my son said was “I told you so”. We discussed the possible use of stents for the left jugular, and my son decided he didn’t want one at this time and we concurred with this decision. Soon afterwards, the first patient walked into the operating theatre and was wheeled out an hour later. We were then told it was my son’s turn and in a flash he disappeared into the procedure room. The next, very long, 45 minutes were extremely tense and we passed the time by chatting nervously with the other patients and their partners.

As we were chatting, Dr Simka and his partner, Dr Ludyga, suddenly emerged from the treatment room and said everything went extremely well and that they were able to balloon open both jugulars and restore normal flow. I’ll never forget the tremendous feeling of relief and happiness that swept over my wife and me. They then showed us videos of the venography before, during and after angioplasty and CCSVI became a very real phenomenon for us. By the time the show was over, our son was back in his bed and was feeling good enough to have me take his picture that he then started sending out on his iPhone.

The other four patients were treated and, by early evening, the doctors were gone and we were all looking at each others’ venography videos on a laptop. All six patients had notable blockages, mainly in the jugular veins but two in the azygos. Four people needed stents with my son and one other needing only angioplasty.

My son felt better almost immediately after the procedure and now three weeks later cannot believe how great he feels. Instead of restless sleep, he sleeps soundly for 7-8 hours and, for the first time, is experiencing long dreams. His morning fatigue is completely gone and he is down to one cup of coffee a day. The pressure behind his eyes has totally disappeared and he says it feels like his eyes might fall out of his head. My son went to Poland for preventive reasons and ended up with some noticeable health improvements as a wonderful bonus.

Of the other five patients treated the same day as my son, only one had a dramatic improvement. He regained his abilities to walk normally, to see better, to be able to balance on one leg, and to type once again at a fast speed. Seeing his improvements was quite amazing and left no doubt as to the benefits CCSVI treatment can potentially bring. The other four only had moderate to minor improvements but all were very glad they had it done.

I learned a few things from this personal experience with CCSVI treatment. My son’s nutritional strategies clearly did not do much, if anything, for his CCSVI, but nutrition was able to offset any MS problems despite the presence of significant CCSVI. This alone shows how important it is to use nutritional strategies if one has MS. I also learned that CCSVI causes general problems like fatigue and depression which are common in many people besides those with MS. This certainly raises the question of how many people in the “healthy” population have CCSVI that would be best treated.

I learned that venous angioplasty is a very safe procedure and all the fear-mongering being done by neurologists regarding the dangers of such a procedure has no substance whatsoever. I also learned that almost everyone with MS has CCSVI given that 97% of the 600+ patients treated at Dr Simka’s clinic had obvious blockages as seen on venography.

I have also learned that a negative Doppler test does not mean much and my son’s results from his Doppler exam done in Canada were not accurate. Furthermore, one of the 5 people treated with my son had a negative Doppler but major blockages were evident on venography. Ironically that patient was the one with greatest positive results after treatment.

In summary, I can say that it is essential for anyone with MS to have their venous drainage checked by venography and treated as required. The gains from such a treatment will greatly vary from patient to patient but there is no doubt everyone will benefit from having proper blood flow from their brains.

[Queen K]

Peaceseeker, Thanks for that. A well balanced letter and believe me, I know one person managing MS symptoms through diet who could read this and weep.