Take on the NHS...

xia · Post by **xia** » Mon Dec 07, 2009 10:15 am

Hi everyone!
I am new to this forum and I'm glad I found it

I got really excited when I found out about Dr Zamboni's research and CCSVI.
I thought finally a procedure that can help!
I went about researching further and found that the UK is not on board at all!
I contacted the MS society asking about trials and 2 weeks have passed and have still not heard back...
I contacted my Neurologist and have not heard back... I mean thats just rude

I am hoping to go to Poland to have this procedure done but what about the people who cant afford it or cant travel?
Speaking to family they suggested that I go my GP and fill him in what on what I've found. I was very careful with my words as I didnt want him to dismiss anything.
I started with that possibility of having stenosis in my throat due to having MS (then I left MS out of it and concentrated on having a vascular problem).
I told him that I was anxious about this and would like to have it investigated with a scan and then a corrective procedure done.
(I have spoken to a radiologist and gave me info that the GP needs to include in his referral and who to send the referral to.)
Which he was more than happy to do!

'vascular clinic for DUPLEX US of the neck.'

'Your GP needs to write all the details on the form, and he needs to mention duplex of the jugular veins to assess flow and patency.'

I was then informed that its up to the vascular surgeon if he wants to perform this procedure, so I told him about Dr Simka and the possibility of going to poland. And we discussed after care which he agreed to and to monitor me and prescribe the blood thinners!

Basically he has never heard of Zamboni's research and trials and was very interested to learn more, luckily I was armed with factual printouts!

On the whole a very positive outcome...
I now just have to wait for the referral to go through.

I will keep you informed as and when

I dont know if this is any help at all but I thought I'd share.
Take care
xia

ozarkcanoer · Post by **ozarkcanoer** » Mon Dec 07, 2009 10:30 am

Good for you, xia !!

Johnnymac · Post by **Johnnymac** » Mon Dec 07, 2009 10:33 am

nice work xia! When hit with a road-block you find a way to go around it, very good advice!

ClaireParry · Post by **ClaireParry** » Mon Dec 07, 2009 10:44 am

I'm really pleased for you.

Unfortunately, despite the fact I went to my GP, arms brimming with Zambonis research I did not get a good response.

Most he would do was to ask my Neuro for advice

Luckily for me, my secret weapon is a family friend who is a Vascular Surgeon - he thinks Zambonis work is completely believeable.

He has offered to arrange the scans, however, they seem so specialised I might take a trip tp Poland for that with treatment by him here.

Good for you though - I'm very impressed you got some action from him.

Claire

xia · Post by **xia** » Mon Dec 07, 2009 1:38 pm

Thanks for the encouragement!
Its a shame that not all GP's are open to it. I think what helped was not putting too mush emphasis on the MS side and more of it being a vascular problem.
I guess we have to keep pushing for this treatment! They will have to listen at some point

Hi Claire, you are lucky having a vascular surgeon to hand! Keep us informed on how it all goes...
xia

xia · Post by **xia** » Fri Feb 05, 2010 8:20 am

Hi all.
I’m not sure how many are reading this so sorry for not keeping it up to speed.
I last wrote about my GP visit going well. The referral went through and I spoke to the vascular surgeon. He was concerned that due to me having MS it wasnt his department and there was nothing he could do.
I managed to convince him that if I have a vascular problem due to having MS then he was the man to look into it for me.
He finally agreed to refer me to a colleague of his who was a neurologist. If she thought that there was anything in it then he would order the tests done.
My appointment with the neuro did not go well and she told me that she was not onboard with this at all!
Getting desperate I bombarded her with all my info and gave her my personal feelings towards all this... Finally she agreed to speak to the surgeon and tell him she was not supporting this but if I could convince him I have stenosis in then theres no reason why he shouldnt investigate!

One month later...

I had a dopplar ultrasound yesterday (NHS) but unfortunately nothing was found! He followed Zamboni’s instructions... I dont take this as conclusive proof that I dont have stenosis.
I am due to see the vascular surgeon on thurs and will hopefully get an MRV referral, lets hope!
Will keep you posted.
Xia

LR1234 · Post by **LR1234** » Fri Feb 05, 2010 9:08 am

Hi Xia,
Proper testing will be coming VERY soon, hopefully on the NHS.

Ever since June 08, I have been trying to get UK Dr's involved and I have finally got somewhere!!

I had so many problems getting diagnosed with CCSVI (my thread is somewhere on here) In the UK MRV was "normal" CT scan "normal" Doppler showed nothing but that was because the proper protocol and what to look for had not been studied first.

After coming back from Poland liberated, i went back to all the specialists I saw originally privately and they can now see the stenosis very very clearly on my venography.

I have therefore managed to get 2 Dr's excited so far about CCSVI and both treat on the NHS:)
They are talking about setting up studies and teaming up with neuros. (I have put my neuro forward as well to move this forward quicker)

As soon as they have confirmed that they are going to start the studies I will let you know who they are.

Fingers Crossed the UK is finally going to get CCSVI moving!!

Sharon · Post by **Sharon** » Fri Feb 05, 2010 9:51 am

LR - maybe the Buffalo news will start moving them off the fence! Let's hope so.

Sharon

LR1234 · Post by **LR1234** » Fri Feb 05, 2010 10:05 am

I forwarded the Buffalo link onto them in e-mail earlier, I hope it gives them more of a shove:)

ClaireParry · Post by **ClaireParry** » Fri Feb 05, 2010 2:02 pm

I hope that the Vascular Surgeon I know will move once I come back from Poland with my results (fingers crossed).

He did offer to arrange the tests for me, but working in the NHS myself I didn't trust that the they would be done correctly.

I know that when he sees the evidence things will happen! I really want the procedure done here in the UK, so hopefully more MSers can get treated to.

Claire

xia · Post by **xia** » Sat Feb 06, 2010 2:44 am

I totally agree with you! We have brilliant vascular surgeons here so it seems strange to go all the way to Poland.
If my scans here show nothing, I will go to Poland and get the proof also

xia

gibbledygook · Post by **gibbledygook** » Sat Feb 06, 2010 3:54 am

Hi L,

I'm going to meet an NHS UCL interventional radiologist in a few weeks with a doctor friend of mine to see if I can interest them at UCL. Hopefully Buffallo will have reported by then. If I have a positive meeting with the Buffallo data, (pray god, its good!) perhaps I should put her in touch with your "team"?!!

Billmeik · Post by **Billmeik** » Sat Feb 06, 2010 6:23 am

hope that doppler was transcranial. That's key.

acol · Post by **acol** » Sun Feb 07, 2010 5:49 am

I am going for my second appointment with my UK vascular surgeon this Tuesday. A few weeks back I had a transcranial doppler examination. I had given the radiologist Dr Simka's paper on how to do a doppler test on a patient with MS.

I strongly suspect that the test will be negative - due primarily to the fact that although the radiologist was very experienced in general matters she admitted that this was a very new area. It was a bit like looking for a needle in a haystack when you didn't know what the needle looked like.

Because I am not pinning any hope on this I will be going to Poland next month. However, I will report back in due course.

xia · Post by **xia** » Mon Feb 08, 2010 11:17 am

Hope your appointment goes well!
Let us know what they find...
I'm off to see my vascular surgeon on thurs, will discuss further tests needed.
xia