This Is MS Multiple Sclerosis Community: Knowledge & Support

Yeah we got lucky, the total cost for us is circa £6,000. Which I still don't think is unreasonable considering all the scans and theatre time Emma is having.

MarkW,

Please do a detailed spreadsheet to identify all the items and the associated costs to them.

This is the only way to properly critique something.

I had a chat with the surgeon whilst we were at the clininc this week.

The pre price rise cost of £6000 covered the following:-

Initial scan
Consultation
Pre op with blood test and consultation with the surgeon
Procedure (approx 90 minutes for Emma)
Recovery (approx 60 minutes)
Consultation with Surgeon two days after procedure
Re scan at 6 months.

The price increase in january is increasing as they've found they are spending much more time in theatre then first estimated.

Also added to the full treatment package is

MRI scan before hand to determine number and location of lesions
CT scan specifically of the azygos vein.
MRI scan after the procedure to monitor lesions.

I'm planning to book myself an appointment for this scan at their Guildford facility. Those of you who have already been scanned could you possibly tell me please: have you received a CD of your results? Or pictures, or anything?

I'm just wondering as I would like to have this test done here locally but probably would like to be treated somewhere else and of course they would need to see my scan.

Any help would be appreciated!

We were provided a CD of Emma's scans when we were seen in Glasgow.

It will be the same radiologist at either Guildford or Glasgow.

If you get a scan at one place and treatement at the second won't you end up paying for a scan twice?

I'd be pretty uncomfortable for a place to go ahead with treatement on someone elses scan and would kind of assume they'd produced thier own to their own protocols?

I second what ejc said - I was scanned and treated with ehc. Carrie

Thank you to both of you, EJC and Carrie. Well, they prefer MRVs so do not do a Doppler before. But I'm under the impression that a Doppler IS useful, so would like to have one here in the UK. And then I guess it will be the venography anyway, where everything can be seen. And I've read about Vic (I think in your thread, EJC, thank you for that, too) and I'm hoping he would be doing my scan as based on what you said he seemed really knowledgeable.

EJC I've been planning to post a reply in your thread, but I never got round to do so to say I'm experiencing very similar things to what you are describing about Emma's vision. Except I've never had any problems with my vision but I did have dizziness, etc. and these are the symptoms that come back when I'm hungry. And I so agree with you: it is my glucose level that must drop.

It's hard work to get Emma to eat sometimes and it was when I started questioning what she'd eaten when she was complaining of eyesight issues that I put two and two together.

Beyond that I've no idea what it could be and it may be worth investing in a pack of glucose tablets to see if they solve the problem - it might help narrow down the issue.

I had a six month Doppler scan at Guildford and received a CD of the results. Everyone should remember that doppler/mrv etc are preliminary scans. The gold standard is a catherter venogram and any treatment is performed on results from a catheter venogram. Balloon venoplasty is usually performed during the same procedure as a catheter venogram. In the UK the doppler scan is performed in Glasgow/Guildford by a sonographer and the venogram/venoplasty in Edinburgh by a vascular surgeon, that is by different people.

I hope this answers bunny82's enquiry. Hoping Husband I will not analyse EHC costs against others. Cost is only part of the equation and a lower priority for me. Methods used and surgeons success rate are more important for me.

MarkW

_________________
Mark Walker - Oxfordshire, England. Registered Pharmacist (UK). 10 years of study around MS.
Mark's CCSVI Report 7-Mar-11:
http://www.telegraph.co.uk/health/8359854/MS-experts-in-Britain-have-to-open-their-minds.html

We had the scan done about two weeks ago at the Guildford clinic. It was done very professionally. Vic also took longer then the 45 minutes it should have taken because he noted so many blockages.

It's a bit belated but thanks a lot for your replies EJC and Mark! I have the scan this Saturday in Guildford, can't wait to find out....

I noted that Edinburgh worked a Saturday appontment. Does anyone know if they allow any flexibility on dates wen offering an appointment, or is it a case of 'This is your appontment date/time' and that's it?

We were given options.

If a date isn't convenient then they'll offer another, it's just a nuisance if you change continually.

Thanks EJC. That's encouraging!