CCSVI to Dr Amir - a step in the right direction

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

CCSVI to Dr Amir - a step in the right direction

Postby Keeper » Wed Feb 29, 2012 12:43 am

As a newbie to the forum (and MS sufferer - weak right leg and arm getting worse) I have been reading the vast array of subject matter on here with great interest, some exceptionally well informed and useful, others not so!

I have been particularly drawn to the postings regarding CCSVI as I underwent the procedure in September last year with very disappointing results (no noticeable improvement after a very brief lift lasting only a couple of days) and since then I have been looking out for other avenues towards halting my steady decline and possibly improving my symptoms.

By a stroke of good fortune my Internet searches came upon a very interesting article from the London Evening Standard published in 2009 describing the work being carried out by Dr Amir in Putney, London who has had great success treating MS patients through correction of their jaw and Atlas vertebra alignment. The article gave an email contact for Dr Amir so I thought what have I to lose? So sent a brief email outlining my symptoms and to my surprise he answered (around midnight the same night!). This lead on to more communication including an extensive questionnaire which went right back to the start of my medical history, something I felt very reassured by as no one else I have dealt with regarding my condition has been so thorough.

On my first visit Dr Amir quickly established that my jaw and Atlas are misaligned. He was able to give a demonstration of how my symptoms could be improved by deliberately misaligning my bottom jaw to a position he identified then holding my bite in this position whilst carrying out simple tasks - the improvements were instantaneous!
Anyway to jump to the here and now, I visited him for a second time yesterday to have my first 'appliance' fitted to start the slow process of realigning my jaws - Atlas to follow should it not correct itself.
I had in my mind that because the correction takes months to complete that I wouldn't necessarily feel any significant change in my symptoms for a while but how wrong I was - as my travel to the London clinic requires all modes of transport and a lot of walking I really struggled on the way down but on leaving the clinic my balance and right side felt noticeably better.

For me I feel that I have now been given hope and a very clear path to follow towards halting and (hopefully) reversing my MS symptoms. The hypothesis Dr Amir gives (already well documented on here) makes complete sense and ties in with a lot of my own experiences of what aggravates my condition. I will post again in the future as my treatment unfolds and report back my experiences good or bad.

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Re: CCSVI to Dr Amir - a step in the right direction

Postby EJC » Wed Feb 29, 2012 12:19 pm

Welcome to the Dr Amir club.

Looking forward to your updates.
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Re: CCSVI to Dr Amir - a step in the right direction

Postby Keeper » Thu Mar 01, 2012 1:20 am

Thanks.

After my initial contact with Dr Amir he sent some links to here and I have been reading your posts with great interest. Hopefully our paths will cross sometime in the future as we appear to be on the same wavelength :wink: !
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Re: CCSVI to Dr Amir - a step in the right direction

Postby EJC » Thu Mar 01, 2012 3:12 am

Emma will next be in Putney on 8th March.

If you're on Facebook, there is a small (private) group for Amirs Patients that chat about progress. We've met a few of them now.

Emma's account is here - send me a friend link and I'll get you on board if you wish.

http://www.facebook.com/profile.php?id=100003396510865

Bear with me though I'm not great with Facebook!
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Re: CCSVI to Dr Amir - a step in the right direction

Postby Keeper » Thu Mar 01, 2012 10:55 am

Me neither but will give it a go 8O !
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Re: CCSVI to Dr Amir - a step in the right direction

Postby EJC » Fri Mar 02, 2012 4:41 am

What was your CCSVI treatment history?

Where, when, who - results, that kind of thing.
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Re: CCSVI to Dr Amir - a step in the right direction

Postby Keeper » Fri Mar 02, 2012 1:23 pm

The reason I had gone to my GP 4 years ago was because after walking a reasonable distance >1mile I started to feel numbness in my legs and my right foot would start to drop. In the years to follow the distance I could walk before the onset of these symptoms gradually reduced to the point that they are now with me all of the time.

The idea of reduced blood-flow through CCSVI seemed to tie in with my original symptoms, why else would I have been able to walk normally for a distance then gradually deteriorate the further I walked? Then when I'd rested the symptoms would disappear.

I had the procedure in Sept 2011 at the Essential Health Clinic, Edinburgh.
Immediately afterwards I remember commenting to the nurse how easily I had put my clothes back on because my balance was much better, previously I would have had to have sat down or lean against the wall to thread my legs into trousers etc. It was difficult to assess my walking due to the heavy strapping the nurse had applied around my groin but from what I could tell things were steady.
After returning home and removing the strapping the next day I felt I needed to get out for some air and a gentle walk in the woods. Initially the signs were good and I felt like I had a pair of working legs under me as I walked. Unfortunately within a few hundred yards this feeling stared to deminish so I headed home.
The next few days became a roller-coaster of fluctuating emotions and symptoms, I really didn't know what to expect from one day to the next which was unsettling because prior to the procedure my condition was fairly predictable and I knew the things that would aggravate it.

Since September things have been deteriorating at a faster rate with my right leg and arm noticably weaker and my right foot dropping all the time.
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Re: CCSVI to Dr Amir - a step in the right direction

Postby TheCatsWhiskers » Thu Oct 04, 2012 5:54 am

@CindyCB

How did/ are you getting on with Dr Amir's treatment? I have a near identical symptom/ health profile to you and have an appointment with Dr Amir in a couple of weeks :)

Would be good to hear your progress - good/ bad or indifferent! ;)


Kind regards,
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Re: CCSVI to Dr Amir - a step in the right direction

Postby Cece » Thu Oct 04, 2012 8:19 am

Keeper wrote:I had the procedure in Sept 2011 at the Essential Health Clinic, Edinburgh.
Immediately afterwards I remember commenting to the nurse how easily I had put my clothes back on because my balance was much better, previously I would have had to have sat down or lean against the wall to thread my legs into trousers etc. It was difficult to assess my walking due to the heavy strapping the nurse had applied around my groin but from what I could tell things were steady.
After returning home and removing the strapping the next day I felt I needed to get out for some air and a gentle walk in the woods. Initially the signs were good and I felt like I had a pair of working legs under me as I walked. Unfortunately within a few hundred yards this feeling stared to deminish so I headed home.
The next few days became a roller-coaster of fluctuating emotions and symptoms, I really didn't know what to expect from one day to the next which was unsettling because prior to the procedure my condition was fairly predictable and I knew the things that would aggravate it.

Since September things have been deteriorating at a faster rate with my right leg and arm noticably weaker and my right foot dropping all the time.

Having early improvements that are then lost can be a red flag for possible clotting or early restenosis. Did you go in for follow-up ultrasound? It is not good that you've been getting worse faster. I hope Dr. Amir's treatment has helped with this.
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Re: CCSVI to Dr Amir - a step in the right direction

Postby Luvsadonut » Sat Dec 29, 2012 4:18 am

EJC wrote:Emma will next be in Putney on 8th March.

If you're on Facebook, there is a small (private) group for Amirs Patients that chat about progress. We've met a few of them now.

Emma's account is here - send me a friend link and I'll get you on board if you wish.

http://www.facebook.com/profile.php?id=100003396510865

Bear with me though I'm not great with Facebook!



Hi,
The link isnt working what should I search for on FB? Or could you try another link please?

thanks
Darren
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Re: CCSVI to Dr Amir - a step in the right direction

Postby EJC » Sat Dec 29, 2012 5:01 am

Try here Darren,

http://themsforum.org/index.php

Bizarrely I was banned from Facebook and my IP blocked - it was never explained why and was made clear I had no process of appeal. I'm still puzzled to this day about it.

How did you get on at your consultation?
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Re: CCSVI to Dr Amir - a step in the right direction

Postby Luvsadonut » Sun Dec 30, 2012 9:52 am

Hi,
The consultation went as expected I think, Dr Amir asked questions regarding the questionnaire which I filled in, he then checked my jaw alignment which he found to be mis-aligned. I told him that I had my Wisdom teeth removed some time ago which he thinks plays its part in jaw mis-alignment. He then asked me to stand roughly 10ft away and take a deep breath and proceeded to tell me that I was struggling to breathe, he told me to align my jaw, take a breath and notice the difference, it was a lot easier to take the deep breath with my jaw aligned. He explained that lack of oxygen due to insufficient breathing could be a big part of my problems, we're all well aware of the effects of a lack of oxygen....He also checked my leg length and noticed that one was longer then the other and said that atlas correction may be necessary at a later stage during the treatment if the jaw alignment didn't resolve the issue. You really cant help but be impressed with his passion for the treatment and the fact the he truly believes there are a lot of people out there mis diagnosed with auto immune diseases which in turn means they are polluting their bodies with unnecessary toxins for no benefit. I probably left the surgery with the same opinion as before I went in, if Im honest, in that I believe that jaw alignment as well as CCSVI may alleviate some of my symptoms but as jaw alignment is non-invasive and the CCSVI procedure (I think) still needs some fine tuning I will go ahead and try the treatment with Dr Amir. I also think the fact the treatment plan is 'pay as you go' with the possibility of withdrawing if no benefits are felt helped make my decision.

Darren
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Re: CCSVI to Dr Amir - a step in the right direction

Postby EJC » Sun Dec 30, 2012 4:24 pm

You pretty much arrived at the same decision we did Darren and for similar reasons. Although we had discovered Amir after CCSVI treatment.

Post a thread and start a diary of your treatment progress, ups and downs (there will be both!)
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Re: CCSVI to Dr Amir - a step in the right direction

Postby Thekla » Wed Jan 09, 2013 12:21 pm

I look forward to hearing how you respond to treatment. It makes sense to me to try a non-invasive treatment that really seems to have no downside besides the cost and it really isn't unreasonable. I just wish I lived closer and could see him more frequently.
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Re: CCSVI to Dr Amir - a step in the right direction

Postby Keeper » Fri Apr 12, 2013 1:23 am

Hi All,

For all sorts of reasons I haven't been a regular visitor here for the past year so much to my shame haven't updated with my progress as I had planned to. I can see how this would lead sceptics to say 'hmmm, can't be that good if he hasn't bothered to post'...but far from it, I've made really good progress.
When I read my original posting I'm reminded of how things were heading to a place that would have prevented me from being able to continue in my job.  Happily I can report that nothing has changed for me work-wise and I've just passed my annual medical without any difficulty.
The past year has had many ups and downs as far a my symptoms go, at best (albeit for brief spells maybe lasting a few hours) I've had full use of my limbs and a feeling of being 'normal' again.  At worst it's been really weak and uncoordinated down my right side where I've even struggled to sign my name.  Dr Amir describes it as a winding path to get to get to the place where I'll have lasting results.  Its been incredible how tiny changes to my braces have resulted in dramatic improvements.  On several occasions I struggled my way to his surgery feeling weak and limping badly then to leave with a replacement brace or other adjustment  like a different person.  Others who I've chatted to in the waiting room have had very similar effects.
Where I'm at now after a year is not completely rid of my symptoms I still have stiffness in my right leg that effects my walking and some days I hit the wall with low energy levels but on the whole I'm a lot better.
For anyone planning to start this treatment from my own experience I'd say be prepared for your symptoms to change significantly during the course but not to be disillusioned, things will improve. 
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