EJC Liberated in Edinburgh 27/12/2010

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

ccsvi

Postby blossom » Wed Dec 29, 2010 6:49 pm

great to hear. continued healing and improvement wishes.
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Postby Kate_PghPA » Wed Dec 29, 2010 7:19 pm

Emma and I were 'liberated' on same day...She in UK, me across the Pond!

Using my Newly Half- Liberated Brain to work Smarter...!!!

http://www.thisisms.com/ftopict-15095.html

Seems that Headache around 'liberation' may be due to changes in Cerebrospinal fluid levels...

AND have heard from Cheerleader...whose husband Jeff ALSO had serious Headache...almost vomited!!!

I DO notice some improvements...Left Ankle is Less Swollen, more 'normal colored' , my back doesn't kill me when I sweep the kitchen floor,
less effort to do my tread mill work out...plan: to increase my time daily---can get out of my car/chair much more easily now...stay tuned for more improvements!!

I will add Emma to my Prayer List...as Tennyson said:
“More things are wrought by prayer than this world dreams of.”

Kate
Venoplasty 12/26/10 Vas.Surg/ Pgh,PA Angio'd Both IJV

2/9/11 F/U Transcranial Doppler: flowing well
8/15/11 Hosp. Exac. "MS" 1st Spinal lesions EVER seen/ MRI
9/7/11 F/U T. Doppler: flowing well
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Postby HopingHusband » Thu Dec 30, 2010 7:28 pm

Congrats EJC..to you and Emma ...!!!

We wish you both all the very Best !!

We are soon to be there in the New Year and are very excited about it !
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Liberation + 1 week

Postby EJC » Sun Jan 02, 2011 10:21 am

Not a great deal to report to be honest.

Emma is really worn out, it's taking a long time physically to get over the procedure, the travelling, staying in unfamiliar beds and the general distruption. We really did have the worst possible schedule though with the Christmas break so this is no great surprise.

However when she does have a bit of energy the improvements from the procedure are still there, particularly eyesight.

We now have to sit and wait for Emma's body to start getting itself back together, I expect another week until she's back to "normal", only then will we really be able to monitor improvements with any consistency.

We're in contact with another patient seen last week at the EHC and he's reporting the same levels of tiredness, I guess it's a shock to the system.

I'll probably give it another week before the next update, unless of course anything miraculous happens!
Last edited by EJC on Sun Jan 02, 2011 11:52 am, edited 1 time in total.
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Postby mrbarlow » Sun Jan 02, 2011 10:55 am

Thanks for posting this EJC. I hope Emma continues to make a recovery. Please keep us informed as to progress - good or bad.

I am on the waiting list. Discussed with Neuro who was very negative!
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Postby EJC » Tue Jan 04, 2011 11:17 am

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.
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Postby msgator » Tue Jan 04, 2011 6:55 pm

I noticed improved handwriting after I had my procedure also. Then when I met with my neuro he said the tremor in my right hand was gone. I can also type with all ten fingers again, I was typing with 5 on my left and one on the right. Of course I am right handed.

Wishing Emma continued improvements.

Ann
always look on the bright side of life

Veins opened 10/15/10. RIJV still on the small side. Feeling much better.
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Postby DippyD » Wed Jan 05, 2011 5:35 am

So pleased to hear that Emma is improving following her treatment at EHC.. What kind of improvements has she seen with her vision?.. I read earlier that she had problems with her eyes working independently of each other.. I have oscillating and double vision - rather like seeing the world with hand-held camera rather than steadicam - which is rather dizzying and would love to have that kicked into touch !
It's been interesting to read of your experience with EHC. I too am on the wait-list and have found the lack of communication frustrating, but having met Dr Reid at the Glasgow conference, I felt reassured by his experience and conviction.
How did you find the aftercare at EHC?.. Is help on hand if you need it?..
There's a lot of contention about their price hike, but if the results are good....!.

Wishing you both the very best for a whole new and healthier year!
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Postby EJC » Wed Jan 05, 2011 6:34 am

We were both terribly frustrated with the distinct lack of information coming out of the EHC.

Having now been through the system, the reason for this is clear, they simply don't want to publish anything that may be misleading or incorrect. They are waiting until they have compiled factual statistics and information before coming forward with anything. It would just be nice if they actually said they were doing this.

Emma's eyes were poor, I've just read your description of your eyesight to Emma and she says that sounds pretty much where she was....like being drunk.

Here eyesight is the most significant inmprovement to date.

However, pre procedure she had good days and bads with eyesight - the good days means it's logical to assume that there was no great deal of permanent damage..if there was, there would be no good days at all.

Emma's eyesight had deteriorated to a point where she had to give up driving due to the double vision and almost complete lack of periferal vision.

She would now pass the sight test for a driving test without problem.

We have an appointment with Emma's optitcian this Saturday for an Eye test and I will post results of that.

I'm also going to write to her Opthalmologist who saw her in early Decemebr and said there was nothing he could do to help here eyesight, I'm sure he will be intersted in the results for this procedure.

Now I will add a word of caution, that is that everybody is different and Emma's results may not be replicated with you (but I sincerely hope they are).

As for the general level of care, it was good. You have every right to be confident in Donald Reid. Post procedure he gave us his mobile number incase we had and questions or worries.
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Postby DippyD » Wed Jan 05, 2011 6:54 am

Thank you so much for your lovely reply!
I'm so pleased that Emma has been helped.. Feeling 'drunk'! that's it - but without the enthusiastic loss of inhibition!. It does worry me where the visual issues may lead. I already limit my driving to avoid busy areas as movement is disturbing. As you say, it does fluctuate and I only drive when I feel able and I am grateful that for now, there are ok days. For Emma to be free of it must be wonderful. I understand what you're saying about everyone being different though.
I look forward to hearing what the opthamologist makes of the changes! I think it's important for everyone who is helped to go back to the physicians, who have treated them, of any discipline.
As for EHC.. It is lovely to hear of the thoughtfulness shown by Donald Reid giving you his phone number. He certainly did strike me as being a gentleman who genuinely cares about this treatment and the help it can offer. The use of intravenous ultrasound is also positive I feel, due to the increased information it can provide.

I hope Emma continues to improve and the improvements are here to stay!
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Postby homefront » Wed Jan 05, 2011 8:53 am

Hi EJC
very glad to hear that Emma is showing improvements and hope these continue.
Sorry if this has been asked before but would you please mind telling which diagnosis Emma had? My wife is PPMS and its difficult to find references that aren't RRMS.
Thank You for all the updates.
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Postby EJC » Wed Jan 05, 2011 9:47 am

Emma was diagnosed RRMS but was borderline SPMS

Her EDSS was 6.5 but she was starting to deteriorate rapidly.
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Liberation + 13 days

Postby EJC » Sat Jan 08, 2011 10:05 am

Today Emma went to see her Optician, her eyesight has changed so much that her existing glasses are now way too strong.

We had a chat with him and he was extremely interested in the whole process and will be producing a report for Emma's eyes for us to pass on to the EHC and The surgeon.

However in brief, Emma's prescprition has improved by 10% (she's 10% less short sighted) and with the increased stability in her left eye overall her eyesight has improved by 20% something he described as significant.

She's also been much more steady on her feet in the last day or two and felt confident enough to walk into the opticians without her walking stick and without any help from me. It's a good 3 years since she was last able to do that.
Last edited by EJC on Sat Jan 08, 2011 2:30 pm, edited 1 time in total.
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Postby pairOdime » Sat Jan 08, 2011 10:18 am

Exciting news EJC...Emma demonstrating objective improvements. Here's to continued improvements and healing for Emma.
It's a paradigm shift
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Postby Coolcatcarrie » Sat Jan 08, 2011 10:39 am

Great news! X
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