This Is MS Multiple Sclerosis Community: Knowledge & Support

Ok, I’ve entitled this trip report, but for the purposes of this thread I’m just going to stick to what happened in the clinic itself.

If anyone needs to know the logistics of getting to the clinic or in and around Glasgow, ask me, If I get enough people wanting to know I’ll write a separate thread on the subject.

Emma was booked in for 10am at the clinic, we arrived and after a short wait we were ushered into a treatment room for the Doppler Scan. The operator explained how the session would proceed and after a few questions from me, how the machine itself operates.

The neck is scanned on the left and right sides, first in a seated, almost upright position. Then secondly laying just a little of flat on your back. All the time the scans are taking place I was seating with Emma watching the scans themselves on the screen.

The idea of this scan is to check the jugular veins between the lower jaw bone and the collar bone (as this is about as much as this machine can penetrate). The idea being you’re looking for an indication of CCSVI (stenosis) that would warrant the more invasive and expensive Venogram which would provide a more detailed and extensive “map” of the veins in question.

In total the scans took about 45 minutes to complete. We were then asked to wait outside while the results were compiled – we filled out various forms whilst waiting, survey type things that will help collect data on the patients I guess.

After a few minutes we were called into another room where a GP introduced herself to us (sorry forgot the name!) and proceeded to explain what CCSVI was and the possible benefits and negatives of any treatment derived from it. In reality, this was nothing more than we have already picked up from this forum or the internet. The EHC are very upfront about the fact that this is a groundbreaking procedure and still not entirely proven, it’s part of the reason there sometimes feels to be a lack of information emanating from the EHC, they don’t want to start making promises or setting timescales that they cannot keep, so as things materialise they let us know.

We were told that so far two patients out of all scanned had shown no signs of CCSVI. Stupidly I didn't ask how many had proved positive - but they did say "over 90% so far".

Blood tests were taken for the three further tests we had chosen to pay for, we were asked to call in 7-10 days for the test results. One was to check for Vitamin D deficiency another for Omega 3 and a third I can’t remember this evening.

Our results were presented to us in the following format:-

Rt. Jugular Erect – Malformed..........Rt. Jugular Supine – Malformed

Rt. Verterbral Erect – Normal..........Rt. Vertebral Supine – Normal

Lt. Jugual Erect – Malformed............Lt. Vertebral Supine – Malformed

Lt. Verebral Erect – Normal............Lt. Vertebral Supine – Normal

There is evidence of CCSVI detected.

We were also provided with a DVD recording of the Doppler ultrasound scan, but here’s the crunch, we’ve not yet got the software available with which to read it! This is being worked on and will hopefully be available on the EHC website as a download in the very near future, until then we just have a nice DVD in a case, in a folder that’s not very useful.....

What’s next?

This is where it’s still a bit sketchy. We were the first day of week three of the initial scans, so the EHC has only undertaken two weeks of scans up until the point we were there. Obviously we now need to undertake a Venogram and it’s reasonably likely this will lead to an Angioplasty procedure for “Liberation”.

None of this is quite ready to go yet. The EHC will not actually be undertaking any of these procedures themselves, this will be referred to any one of a number of partners that will be joining forces with the EHC to offer the next step of the scan and procedure. These will invariably be Interventional Radiologists, They did mention Paul Crowe (in Birmingham) as one of the guys they are currently in contact with, amongst others.

The plan is to offer the next step as a package, so the Venogram will take place on day 1 of the package with angioplasty available the next day, hopefully leaving you fit to return home the same day or possibly day 3. This should be available at a number of centres but is yet to be confirmed, as such the EHC are not yet offering any specifics other than it’s likely to be later this year (certainly not before that).

How did We feel about it all?

Well clearly, the fact that Emma had been diagnosed with CCSVI is a huge relief to her, it means there’s a possible light at the end of the tunnel. Having now visited the EHC in Glasgow, I can see why the information is a little on the thin side, they really don’t want to run before they can walk or dash anyone’s hopes so they are proceeding with caution and it won’t be full steam ahead until everything is in place. I liked that and it actually gave me confidence in their approach. The EHC are effectively a sorting office, to check and see if you have CCSVI and then refer you on to someone relevant who can help.

Whilst sat in reception it was noticeable that the phone calls were on the whole about one subject – CCSVI – call after call after call.

So now we’re in limbo waiting for the next step. I will take these scans up locally (in Surrey) with anyone willing to listen to me about them, I will also discuss this with Emma’s GP and her Neurologist (well I use the term discuss loosely with the Neuro!)

If I forgot anything please ask.

Alan.

This is a surreal time we live in, eh?

Fantastic report, Alan. At least it sounds like real progress. Congrats to you and Emma for finding screwed up veins.

It's really odd though that they would do a venogram one day and an angio the next. Maybe they're wanting to really take their time at first and let a few doctors discuss the results before angio, but really the time to do it is during the venogram. I mean you're already right there just balloon it already! But anyway, really good to see progress.

It would indeed make sense.

This is all from memory (with a dash of Glaswegian accent thrown in!) so my interpretation of what was being said could be slightly wrong.

We just flew back home this afternoon and I was trying to write this whislt it was fresh in my mind...fresh is relative of course.

The scan results you've included are exactly the same as mine. I hope they haven't mixed them up

Here's hoping!

Did I cover everything? i.e. is there anything you want to add to this thread in the way your appointment differed from Emma's?

I'm one of the ones who had a negative result. What can I say? I've had MS for 7+ years!!

During my consultation, the GP tried to sell me LDN and a multi-vitamin. 'Cross-selling' is surely wrong. And then lastly said maybe I would like to be refered anyway for a (non-existent) venogram?

What did I think? Are they genuinely wanting to help or are they just trying to make a fast buck? Hmm... I don't really know.

I guess if they were after a fast buck they'd have "found" a problem with you despite there being none. I know it's probably not something you wanted to hear, but I would have preferred them being straight than saying there maybe something there.

Also remember that this can only check the Jugular between the jaw and the collar bone, there are a lot of other sites where stenosis could occur so maybe an offer for referal for a venogram is not as ludicrous as it sounds.

They did also discuss LDN and vitamins with Emma also, she had tried LDN last year and didn't get on with it at all.

The vitamin blood test was part of the scan and we figured we'd have that test also.

My thoughts exactly. The doppler's just a screening tool. The venogram is where it's at.

The 'gold standard' according to Dr Zamboni is a venogram. The doppler can only scan a very small area, missing behind the ears and the azygos vein.

If even those people who show no evidence of CCSVI during the doppler are referred for a venogram, then what use is the doppler?

Well pschologically you will find it very hard to walk away once you've paid £450. Remember you also need a GP willing to referred you for a venogram in the UK. The EHC have not managed to secure a private hospital to carry out the venogram and balloon angioplasty yet but they have got a 'hook' in quite a few willing patients. Just a probable thought.......................

An Mrv would not show defective valves. A doppler (with intracranial) will show where and when he blood does not flow or is restricted.

I believe they are complementary.

I understand your frustration, but all this has to start somewhere.

In my life I've spent far more than £450 on dumb things, this isn't one of them.

We're off for a discussion with Emma's doctor next week to see if we can find anyone interested. I've found three local private hospitals who will offer the venogram with a referral, so lets try and get that referral.

The venogram is the gold standard, it also comes with a cost attached.

A doppler Sonogram has told us that there is good evidence that it's worth us spending that money on the next stage.

In your case it's not clear, so now it's a judgement call as to whether you want to spend money on the next stage. You may feel the doppler was a waste but I feel differently (for obvious reasons).

If I were in your shoes I'd still want the venogram, I'd want the gold standard to confirm if the first scan was right or wrong at least then there would be no element of doubt in my mind. However that's completely your call, if you feel it's a waste and a con then who am I to suggest otherwise, it would be unreasonable of me in the extreme.

Do remember we are all in the infant stages of a treatment on a condition that is still yet to be openly accepted. There will be hurdles and setbacks.

Just like you to know I'm not an unreasonable person

Thank you Algis and EJC for your opinions.

You are not; Sweetpea. I would like to think that a single procedure to be done; like starting a day 'screening'. Morning doppler and after lunch MRV and libeled as 'CCSVI Screening'

But I may be dreaming

Cheers; Peace and Love

Hey Sweetpea

Hope your well xx

Sorry to read your log about your results but I would say that don’t mean you don’t have ccsvi

I too went to EHC and got a positive and got a lovely CD that is of no use to man nor beast (the machine at EHC is only readable by EHC) leaving us with no option to take it else where or to give to GP as proof of blockage / CCSVI.
EHC should make the nescessary arrangments for us to open CD or they should send us a readable one.

I await further instruction from EHC on how to get it opened
I await the written report (as promised) that is going to be sent to GP and myself.
I await a procedure date ( EHC updated report this may be several months )

If the paper work does not come then we only have our word that blockages exists not the best way to argue point with the powers that be.


Hum............................

Alan EHC told me the CD was un readable as Dr Z holds the copy right ?

Were you able to open CD ?

Regards
Silver