EJC Liberated in Edinburgh 27/12/2010

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

Postby Donnchadh » Sat Jan 08, 2011 9:50 am

EJC wrote:I noticed today how good Emmas writing has become.

Pre procedure it was a child like scrawl and barely legible, today she gave me a grocery shopping list perfectly written.

I guess this points towards more motor control. It's all good.


This just happened to me as well....started writing and then realized that it was much more legible and evenly spaced. And I did it without being conscious of it. Some improvements are subtle; but like my first IR said, "I'll take whatever I can get."

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Postby EJC » Wed Jan 12, 2011 7:38 am

We went to See Emma's GP this morning (that's MD to our American cousins) he has been quite supportive towards Emma and describes her as "Their guinea pig". This is the first visit to him since procedure.

Emma is still showing all the improvements she had post procedure but is struggling a little with her eyesight as her prescription changed so much she's waiting on new glasses (ready this week).

The eyesight correction was of particular interest as well as improved motor function and the warm hands/feet.

He's asked to see Emma again in month to see how she's doing.

We're in that limbo stage now, Emma having had MS for 12 years has muscle atrophy and quite a few years of damage simply by being so physically limited that she isn't going to be repaired in the short term.

I guess it's going to take months and possibly years before we have a complete picture of how effective the treatment has been. All we can do in the meantime is objectively report any progression or regression as it occurs.

What is important though is life is becoming more bearable for Emma. As well as the limited improvements so far it feels as if she's actually "doing something" to help herself rather than living with a chronic debilitating condition that no one really understands or can treat.
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Eyesight improvements, the technical bits.

Postby EJC » Sat Jan 15, 2011 6:38 am

For those interested, I asked Emma's optician to write a brief report on the changes to her eyesight post procedure, it is as follows:-

Emma has been delighted with the recent procedure and has noticed a dramatic visual improvement.

Refraction shows improved acuities from 6/9 to 6/75 each eye, together with improved ocular movements, opthalmoscopy also identifies less pronounced chorio retinal deposits as noted from previous referral.
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Re: Eyesight improvements, the technical bits.

Postby pairOdime » Sat Jan 15, 2011 7:23 am

EJC wrote:Emma has been delighted with the recent procedure and has noticed a dramatic visual improvement.

Refraction shows improved acuities from 6/9 to 6/75 each eye, together with improved ocular movements, opthalmoscopy also identifies less pronounced chorio retinal deposits as noted from previous referral.

Wonderful news EJC...great to have the actual measurements to demonstrate the objective nature of the improvements.
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Re: Eyesight improvements, the technical bits.

Postby EJC » Sat Jan 15, 2011 9:47 am

pairOdime wrote:Wonderful news EJC...great to have the actual measurements to demonstrate the objective nature of the improvements.


It is, we passed this on the EHC and they were delighted.

It's difficult to produce actual data showing improvements as so many of the symptoms of MS are unquantifyable.
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Procedure +23 days

Postby EJC » Wed Jan 19, 2011 1:56 pm

I was going to say this last week or so has been up and down...but in reality it's been down and up.

Emma's glasses were delayed and it became a problem as her eyes had changed so much. A wobbly person by nature is not helped by the dizzyness of not having the right glasses.

Emma also seemed pretty low and out of energy for two to three days last week.

Her glasses arrived on Friday and she was already feeling a whole world better before she'd even got them. We think she had a mini relapse last week but snapped out of it in super quick time and has recovered and improved even further. This would historically been a week or two long so only two or three days is outstanding.

The thing about living with someone every day who has had this procedure is you dont' see the incremental changes by the very nature of them being incremental.

You suddenly notice things and then think back to how the person was before hand.

So 23 days on how is Emma?

Well all improvements immediately after the procedure have remained. Emmas eyesight is now stable for pretty much the whole day - only when she gets very tired does it start to go.

Walking is better, her gait has improved but still has some way to go. I noticed only yesterday Emma was walking up stairs normally, i.e. foot in front of each other one step per stride rather than one step at a time with both feet.

She is not using a walking stick nearly as much and actually forgot it the last two times we went out.

She has contined to take Copaxone as explained before for continuity.

We've got an appointment in Early February to meet Emmas MS nurse so we can organise a physical therapy programme, we both feel that it's sensible to leave it a month before getting stuck into something of this nature. The procedure is reasonably invasive and is subjecting the body to soemthing out of the ordinary so a few weeks of taking it easy makes sense to my mind.

Nothing bad to report, it's all good so far.
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Postby Coolcatcarrie » Wed Jan 19, 2011 2:31 pm

That's great ejc really pleased for Emma! I managed to get a cancellation on Fri and want for my. Procedure on sat! Everyone at the Edinburgh clinic are great hey and Mr Reid is amazing!! I'm already feeling warm in a t shirt when I would of been wrapped in a jumper infront of the fire! I really can't wait until my walking improves!! (Crossed fingers) x
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Postby Coolcatcarrie » Wed Jan 19, 2011 2:32 pm

That's great ejc really pleased for Emma! I managed to get a cancellation on Fri and want for my. Procedure on sat! Everyone at the Edinburgh clinic are great hey and Mr Reid is amazing!! I'm already feeling warm in a t shirt when I would of been wrapped in a jumper infront of the fire! I really can't wait until my walking improves!! (Crossed fingers) x
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Postby EJC » Wed Jan 19, 2011 3:05 pm

That's great News CC, as I'm on the mailing list I also got the list of short notice appointments. I'm glad you picked one up.

How about starting a thread like and giving a run down on how things go. People really want as much detail as possible when considering spending so much money on a new theory procedure.

You're about Mr Reid, his manner is quite calming and very reassuring for nervous patients.

I have to say I'm glad we waited for Edinburgh rather than going abroad, simply becasue Emma was made to feel comfortable by Mr Reid.
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great news for emma!!!

Postby leetz » Wed Jan 19, 2011 6:24 pm

and they (neuro's and pharma) say it's "placebo"....great job getting fact on paper from the eye doc!!!

God Bless!
GOD BLESS.... CCSVI treatment Dr. Siskin great doc....symptom's improved for about 3 week's (gait, balance, spasticity) now back to square 1...
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Postby Persistent » Wed Jan 19, 2011 6:56 pm

EJC wrote:
Emma has been delighted with the recent procedure and has noticed a dramatic visual improvement.

Refraction shows improved acuities from 6/9 to 6/75 each eye, together with improved ocular movements, opthalmoscopy also identifies less pronounced chorio retinal deposits as noted from previous referral.

Thank you so much for documenting Emma's procedure and changes since then.

I was just needing a clarification. A visual acuity of 6/9 means Emma was only able to see at 6meters what a normal person should be able to see at 9meters ie mild impairment wheras 6/75 means Emma was only able to see at 6meters what a normal person should be able to see at 75 meters meaning significant impairment. Surely there is some error somewhere?

Thanks.
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Postby EJC » Thu Jan 20, 2011 11:15 am

Typo - missed a decimal point

should have read 6 / 9 to 6 / 7.5

My bad.

For those working in old money this is a change from 20/30 vision to 20/25 vision.
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Postby homefront » Sun Jan 23, 2011 2:18 pm

Hi

my wife had her procedure at Edinburgh Clinic on 15/1/11. She is ppms.
Mr Reid showed me the images from the scan of the veins as he had treated them immediately after. Her left internal jug was only 1mm and he ballooned it as much as he felt safe to do (he was very keen to be safe). the right internal jug was good but he ballooned it anyway. the azygous was also quite badly blocked and he ballooned this also. he was satisfied with the flow he had achieved under the circumstances.

We haven't, after a week, noticed anything we can name as improvements but these are early days and my wife has progresseed quite quickly over the 5 years since her first symptom.

We will report any changes if they occur.
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Postby Coolcatcarrie » Sun Jan 23, 2011 2:38 pm

Think we met in edinburgh clinic in waiting room homefront, my fingers are very crossed for your wife! X
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Procedure + 1 month

Postby EJC » Wed Jan 26, 2011 4:21 pm

So one month on and where are we.

All improvements have remained to date.

Emma has a very distinct link between eating and degradation of eyesight. The improvements have remained but if Emma misses a meal by an hour or so the sight regresses only to improve once she eats.

We're open to suggestions as here Doctor doesn't have a clue about this one. I have a non medical hunch it's something like a glucose defficiency but I'm grabbing at straws.

We bought a cross trainer this week, mainly for me to be honest, I don't have time to get to a gym so decided to get a gym to me! (I really am a bloater at the moment and need the exercise!)

Emma is trying to use it for short periods to stimulate muscle tone. There's still quite a degree of atrophy to overcome and we have an appointment booked to organise Physical Therapy in a weeks time.


We've hada couple of friends who've not seen Emma for 2-3 weeks comment on how much better she looks, colour in her face, brighter eyes, more stable on her feet, walking better, stairs better etc.

All these little things that are so difficult for me to notice due to seeing the incremental increases daily.

It's good to hear unprompted comments from people who have no idea Emma has had a procedure.

Next update when there's something to report!
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