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.....
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.