The Essential Health Clinic Glasgow (EHC) Trip Report.

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

Postby EJC » Sun Jul 18, 2010 3:37 pm

EHC gave us what they described as a DVD.

They explained that it is currently unreadable until they have organised suitable software to allow it to be read (which they hope to have available on their website shortly).

Lots of hopes and ifs and buts...However we are right at the front of the queue and got early appointmets so I guess we're going to have teething problems.

I have to admit I've not even put the CD in my laptop, I didn't see the point if I couldn't read it.

I got a single sheet of paper described in my first post which basically said Emma's Jugulars are Malformed....

I'll have a chat with the Doctor this Tuesday and see where it gets us.

It would be a boon to have this information available to provide to other medical professionals if for no other reason than a second opinion.

EHC sent out an update today as follows:-

Thank you for your patience with us in the matter of CCSVI Scanning and Treatments.

As you know from earlier newsletters, we have been working extremely hard to put together a comprehensive screening and treatment package for CCSVI in the UK. This has presented some interesting challenges and we have been reluctant to release any further appointments until we had resolved these issues.

I am delighted to announce that we are now in a position to release further appointments for Doppler screening at our Glasgow clinic. If you are on the waiting list, you will be contacted in chronological order and offered an appointment.

In a change from our original plans, we will not be able to offer the screening and angioplasty treatment in a short time frame for the next few months. It is therefore not advisable to travel from abroad only for the the screening at present. Those who have a positive diagnosis of CCSVI on doppler screening, will be placed on a waiting list for angioplasty treatment. It is expected to take several months to clear this waiting list to the point where the screening and treatment can be carried out within a short enough time period to make traveling from abroad feasible. We are in discussion with a number of potential treatment centres and hope to have several sites in the UK providing capacity for angioplasty treatment. We are also involved in international efforts to further the research into CCSVI and plan to collect data on those patients who undergo treatment in the UK.

Our early experience with Doppler screening in The Essential Health Clinic has been very positive with over 90% showing signs of CCSVI. For those who are negative, we are able to offer a comprehensive treatment package for their MS including Low Dose Naltrexone and nutritional treatments including screening for Omega 3 and Vitamin D levels. We have been involved in treating MS patients for over six years and have a number of effective treatments to offer.
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Re: The Essential Health Clinic Glasgow (EHC) Trip Report.

Postby EJC » Sun Jul 18, 2010 4:18 pm

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

Were you able to open CD ?

Regards
Silver


Ok, so your post prompted me to stick the CD in my laptop and copy it's contents to my hard drive so I can tinker with them.

I managed to open a few files in there but nothing really of relevance, however, I discovered the manufacturer of the scanner used, so did a bit of research and from memory and pictures on the front of the brochure I was provided narrowed down the make and model and have emailed the manufacturer of the equipment asking them where I can find software to view the scan results from it's hardware.

I'll post any findings/replies I get.
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Re: The Essential Health Clinic Glasgow (EHC) Trip Report.

Postby silverbirch » Sun Jul 18, 2010 4:53 pm

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

Were you able to open CD ?

Regards
Silver


Ok, so your post prompted me to stick the CD in my laptop and copy it's contents to my hard drive so I can tinker with them.

I'll post any findings/replies I get.


Thankyou I have to admit I never put the DVD in either ......

Did you recieve your Omega 3 results from Sterling ?

Did you have the conversation about the letter will be posted to your GP wit the findings of screening???
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Re: The Essential Health Clinic Glasgow (EHC) Trip Report.

Postby EJC » Mon Jul 19, 2010 3:41 am

silverbirch wrote:
Thankyou I have to admit I never put the DVD in either ......

Did you recieve your Omega 3 results from Sterling ?

Did you have the conversation about the letter will be posted to your GP wit the findings of screening???


Omega 3 findings arrived at the weekend, saying Emma was low and need to take the tablets.

I'm skeptical, but I figure I've paid this much so far we'll give it shot for two months and see if it helps. If it doesn't no great biggie, if it does, great.

I don't remember talking about a letter to the GP though. I guess I should ask about that.
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Re: The Essential Health Clinic Glasgow (EHC) Trip Report.

Postby silverbirch » Mon Jul 19, 2010 3:59 am

EJC wrote:
silverbirch wrote:

Omega 3 findings arrived at the weekend, saying Emma was low and need to take the tablets.

I'm skeptical, but I figure I've paid this much so far we'll give it shot for two months and see if it helps. If it doesn't no great biggie, if it does, great.


I don't remember talking about a letter to the GP though. I guess I should ask about that.


My Omega 3 level good at 51%
My omega 6 level good at 49%
To reach ideal omega balance
1 Reduce your consumption of omega 6
2 Take an extra 1 gram of EPA/DHA (boots do a hi level omega 3 1300mg with hi levels of epa/dha they come in a box


EHC report states few months and several months I think its going to be several months at the moment EHC are a screening service .(without a readable DVD) for now !! this will be resolved by them soon as we are asking them to resolve the problem

They should be sending out an email/update on how we can open the DVD as a matter of good business practice

GP letter - I was asked to re affirm the GP contact details which lead to the conversation stateing a letter will be sent to GP - so from this conversation I took it that a letter was going in the post

Let me know if 1 you hear from EHC on how to open DVD or 2 ) your GP or yourself recieve a letter documenting your screening results

For the £450.00 ponds I hope my DR gets a letter & I get a readable DVD
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Postby Donnchadh » Mon Jul 19, 2010 10:02 am

I would think that the images are a .dicom file format; it's widely used in images.

There are a few shareware programs available on the net that can read, copy, send, and print out these images.

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Postby EJC » Mon Jul 19, 2010 10:05 am

Emma's levels:-

Omega 3 far too low at 23%
Omega 6 far too high at 77%

1. Reduce your consumption of Omega 6
2. You need an extra 4 grams of EPA/DHA daily.

Quite a lot...so I ordered some Omega 3 today..it's worth a shot.

Take a look at the content of the Boots one, I had a good read about this stuff, you'd need to take upwards of 5 Boots tablets to equal one of the EHC Omega 3 tablets...whaich then start to look good value compared to teh high street brands.

The level of EPA/DHA in each of these tablets is the important factor so it seems (from what I read - but what do i know?)

Anyhow, I got a reply from the manufacturer of the scanning equipment and they say we should just be able to read these reports as either .BMP (bitmap files) or Jpeg files and if video was provide that should be AVI. All files supported on normal Windows software.

Having had a look on the disc it appears the clinic have not converted (read - don't know how to operate the software) the relevant files and simply copied and pasted the root directory onto a CD.

I think I need a chat with the EHC to sort this out...I'm reasonably sure there is no download and the information should have been prcoessed before it was copied onto the CD.

At the same time I'll also take up the issue of the Dr's letter.

I'll post updates when I get anything meaningful.
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Postby EJC » Mon Jul 19, 2010 10:07 am

Donnchadh wrote:I would think that the images are a .dicom file format; it's widely used in images.

There are a few shareware programs available on the net that can read, copy, send, and print out these images.

Donnchadh


Unfortunately the images are .EAF files (i.e unproceesed raw information) each is accompanied by a thumbnail size .bmp (bitmap) image of the screenshot as a catalogue device.

It's clear these need processing at source (the EHC) before being copied to the CD....back to the clinic I fear.
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EHC unreadable CD !!

Postby silverbirch » Mon Jul 19, 2010 10:52 am

EJC look in your PM private messages box located in the left hand colum

Thank you all for looking into opening a CD/DVD !!!! I am terrible at computers at the best of times - and hope that my fellow msers will give me an idiots guide to opening the disk

EHC may come up with the soloution to what is their problem as well they are looking into it as EJC and I can not be the only people with this problem now or in the future and since they are still offering screening the problem can only get bigger.

My worry is new paitents getting screened may get a readable copy (data problem solved when processing)and previous paitents may not be able to in which I hope EHC will address.

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Postby EJC » Mon Jul 19, 2010 11:23 am

OK, meaningful update already.

I sent a couple of file snapshots to the machine manufacturer which they took a quick look at.

The diagnosis is the EHC haven't exported the information correctly (i.e in a readable format), the good news is from the scans the manufacturer recognised who did them and will get in contact and tell them how to process these images correctly.

I have to say how very helpful the manufacturer has been, replies almost by return and quite accommodating.

I've also emailed the EHC and explained they haven't used the software correctly and need to process this information and produce new CD's for those already scanned.

I'll push this until it's rectified.
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Postby silverbirch » Mon Jul 19, 2010 3:27 pm

EJC you are a star well done & thank you very much for the time you have taken to correct this failing

EHC will they have that information to re run the DVD or has it been lost

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Postby EJC » Tue Jul 20, 2010 3:55 am

They should hold all the information on their system to produce the correct format disc, if they don't we actually have all the information they need on our discs.

We went to see Emma's GP this morning, He's actually a very straightforward guy and openly admits he knows nothing about CCSVI but is interested and supporting. Said He will provide any referrals required if it will help us, asks us what we're paying and makes sure we're not being overcharged for procedures.

We understand at this stage we are guinea pigs, this may or may not be the next great medical leap, but unless we try we won't know. At least the GP is supportive of that.

The EHC had written to Emma's GP, I asked for a copy:-

Your patient attended our nutritional medicine clinic today for screening for the new vascular condition, CCSVI. This was newly defined in 2009 and has been shown to be associated with some neurological conditions including multiple sclerosis.

Emma’s Doppler scan showed abnormalities of both jugular veins fulfilling three of the five parameters for CCSVI. This confirms the presence of CCSVI in this patient who has been informed of the diagnosis. The next stage in investigation will be a venogram which can be carried out in one of our partner clinics, followed by balloon catheterisation if indicated.

At this consultation we also discussed the nutritional factors that can influence MS including omega 3 and vitamin D. I have checked bloods for the immune marker Nitrotyrosine and given Emma some dietary advice.

I will review Emma in due course but if your require more information please do not hesitate to contact us at the above address.


We did discuss a referral to a local hospital by Emma's GP as I'd found three that would offer us a venogram with referral. We both felt that we'd be better waiting for a scan with a radiologist that is working with the EHC looking specifically for CCSVI and associated problems.

By going another route we may not get the result we needed. Add to this that the GP didn't really know who to actually refer us to as He wouldn't know if they had the required knowledge to undertake the scan in the manner that was required for CCSVI.

In the circumstances I think I prefer his openness about his lack of understanding of this new condition, plus he is interested how we progress and finding out more about CCSVI.
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Postby EJC » Tue Jul 20, 2010 8:53 am

silverbirch wrote:EJC you are a star well done & thank you very much for the time you have taken to correct this failing

EHC will they have that information to re run the DVD or has it been lost

Silverbirch


Marion from EHC called me today and asked for all the details I'd found on the software issue. I've put them in touch with the right person at the manufacturer who will explain to them how to copy the information of our scans in to readable files.

They get this sorted within the next fortnight (before the next set of scan appointments begin).

Right now they are absorbing the information gained from the first two weeks of scans and getting everything in place so things like this don't happen again, We really are the Guinea pigs! But if it helps, then that suits me.
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Postby L » Tue Jul 20, 2010 9:00 am

EJC wrote:
silverbirch wrote:EJC you are a star well done & thank you very much for the time you have taken to correct this failing

EHC will they have that information to re run the DVD or has it been lost

Silverbirch


Marion from EHC called me today and asked for all the details I'd found on the software issue. I've put them in touch with the right person at the manufacturer who will explain to them how to copy the information of our scans in to readable files.

They get this sorted within the next fortnight (before the next set of scan appointments begin).

Right now they are absorbing the information gained from the first two weeks of scans and getting everything in place so things like this don't happen again, We really are the Guinea pigs! But if it helps, then that suits me.


Thanks for this, good work! I hope to benefit from your efforts myself when my turn for scanning comes..
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Postby EJC » Tue Jul 20, 2010 10:54 am

It's all good, I figure if I can help the EHC it helps Emma, so this is not entirely selfless!
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