think/hope I'm in the right place

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

think/hope I'm in the right place

Postby deezll » Thu Jul 14, 2011 5:25 am

I've been sleeping on a slope (IBT, thanks TiMS for the headsup) for a couple of years now which has definitely improved my circulation (back on flat at present til we fix the new bed).

I had a doppler on my jugulars in august '10 (which were around 14% obstructed so no treatment was taken).

Since then i've been getting weekly O2 therapy (vision problems partially improve but initial damage remains while I'm in the tank but go back to how they were when O2 under pressure stops. I'm pretty sure bladder and mood improves for a time after the 'dive' too.

This website and these three factors, for me, have provided enough evidence/food for thought to try to get seen by a radiologist from my local teaching hospital for the past year.

I've just had a ct scan for cerebral bloodflow but didn't have more than a couple of emails with the guy beforehand and no consultation.

What sort of questions should i ask when hopefully me and he do finally meet up?
am i right in thinking some of this points toward hypoxia?
would a ct scan address this issue?
how can things be fixed in the head, anyway?
i'd be grateful for any thoughts on the matter.
Feeling a bit in the dark
cheers
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Postby Cece » Thu Jul 14, 2011 9:57 am

A cat scan is an unusual choice for looking for CCSVI. Doppler ultrasounds done under Zamboni's protocol and MRV are the more usual options.

Would seeing Dr. Reid be an option for you? At this point in the discovery process, I see there being a real difference between the doctors who have done a number of procedures and know what they're doing and the doctors who do not. There is a learning curve.

If I were going with an IR who had not previously done this procedure, I'd want him to be in contact with IRs who have done the procedure and I'd want him to be as conservative as possible.

I also wouldn't put much faith in what the imaging has been showing. Dr. Sclafani has shared his clinical results as being 99.5% of the people with MS who he looks at with venogram and IVUS were found to have CCSVI. Only 0.5% or one case did not. So, the odds are in favor of having it. I would appear to be healthy (unless you talked to me, you might pick up on the cogfog and fatigue) but I have MS and I had 99% blockage on one side and 80% on the other. This did show up on the MRV and on the ultrasound prior to the procedure. An azygous blockage might not show up as well.

Yes, it seems to me that your response to the dives and to feeling like IBT helps you might mean that hypoxia is an issue for you. My immediate improvements, which were likely a result of hypoxia reduction, were that colors brightened, sense of taste improved, cogfog improved, the feeling of constant unwellness lifted and fatigue improved.

What do you mean by 'how can things be fixed in the head'? Do you mean, how can the jugular stenosis be fixed (via ballooning, usually at the valves)? Or how can this improve the MS that is going on in the brain?

Is the ct scan just cerebral bloodflow or did it go all the way down to the base of the neck, where the jugulars meet the subclavian vein, which is the level of where the valves are? Without the information from this area, it may not be a very useful scan.
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imaging, imaging

Postby deezll » Fri Jul 15, 2011 3:57 am

thanks for speedy detailed response, Cece!
will look into Dr Reid options.

I'll see what this radiologist's thoughts are - he's not specifically ccsvi-trained but last year, he was the only consultant willing to listen past the mention of the term ccsvi and investigate further (hope i'm not just fanning the flames of a consultant's arrogance!)

when i spoke of dopplers with him he said he preferred CTs for giving a fuller picture of what goes on inside.

My new gp (old one used to work with my neurologist at the hospital and wasn't interested in breaking her professional loyalty it seemed) signed/wrote a referral for me to get an appointment with the radiologist.

I was looking into Belgium as my next port of call, if needed but you reckon Dr Reid would be worth contacting?[/u]
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Postby Cece » Sat Jul 16, 2011 7:29 pm

I've heard good things from Dr. Reid's patients. I am less familiar with the Belgium clinic or the doctor there but I've heard they are reasonably priced.

If the CT scan does not show CCSVI, I trust you will not take that to heart? It is not the usual way to diagnose CCSVI, which can be tricky to diagnose.

Keep us posted!
Also please do not consider anything I have said to be medical advice. Talk to your doctor is always the starting point!
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advice from radiologist

Postby deezll » Sun Jul 17, 2011 9:02 am

the radiologist looked at both jugulars and azygous with CT and saw nothing that was indicative of ccsvi although he did say that it would be worth going to people that investigate this every day as even a small restriction of bloodflow could have symptoms.

I'm a little confused Cece, who did you have treatment with?
Dr Reid or someone else?

(the MSRC recommended Belgium to my gp after i spoke with him to try to get a referral to be scanned. He then asked around before signing anything).

I tried going local so aftercare wouldn't be a plane ride away (i hadn't appreciated that looking inside the body was closer to an art than science!)

i guess i need to get back in touch with the Belgium people or essential health in Edinburgh for an MRV?

anyone any thoughts?
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Postby DrCumming » Tue Jul 19, 2011 6:01 am

I have met the people at Essential Health and thought there were excellent. Stay close to home if you can.
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