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EJC wrote:So one month on and where are we.

All improvements have remained to date.

Emma has a very distinct link between eating and degradation of eyesight. The improvements have remained but if Emma misses a meal by an hour or so the sight regresses only to improve once she eats.

We're open to suggestions as here Doctor doesn't have a clue about this one. I have a non medical hunch it's something like a glucose defficiency but I'm grabbing at straws.

We bought a cross trainer this week, mainly for me to be honest, I don't have time to get to a gym so decided to get a gym to me! (I really am a bloater at the moment and need the exercise!)

Emma is trying to use it for short periods to stimulate muscle tone. There's still quite a degree of atrophy to overcome and we have an appointment booked to organise Physical Therapy in a weeks time.


We've hada couple of friends who've not seen Emma for 2-3 weeks comment on how much better she looks, colour in her face, brighter eyes, more stable on her feet, walking better, stairs better etc.

All these little things that are so difficult for me to notice due to seeing the incremental increases daily.

It's good to hear unprompted comments from people who have no idea Emma has had a procedure.

Next update when there's something to report!

Hi Alan
Great to see Emma is still doing well, and you are seeing small improvements gradually. I have been doing fine, however my hands and cold sensations have not gone since the procedure, my shoulder is now really sore it has been suggested that this is probably due to the nerves being pinched when they ballooned the azygous, and with time this should go away??? Seen no dramatic changes, but I was told not to expect any, so not worrying too much. The EHC also did say to me that if I want my scan earlier i can, But I may not be able to see DR Gilhooly after, defeats the purpose really!!!Anyway send Emma my regards and Take care

Ash that's really dissapointing that your negative results stayed.

The nerve pinch is a theory I guess. Have you considered having a chat with a Chiropractor? A pinched nerve is right up their street and if a simple manipulation can ease things it's worth the consultation fee alone.

Because of where Emma was pre procedure this is a long game for her and 6 months is a perfect time for a re scan unless anything dramatic happens in the meantime.

Would a rescan pick anything up with the nerves if you went earlier I wonder?

I certainly hope it improves.

I read your reply to Emma and she sends her regards and hopes you get to the bottom of the discomfort you're feeling.

I am on the waiting list for Edinburgh, having been scanned at the end of October.

My booking ref # is in the 720‘s. Can anyone give an idea as to what number booking Edinburgh is up to and how quickly they are working through the list?

Are procedures to be undertaken at Guildford, and if so, when and by whom? Can we presume this may decrease the waiting time for Edinburgh? Or is Dr Reid to split his time between the two clinics?

Reports of azygous vein ballooning at Edinburgh seem important, but this wasn’t scanned at my appointment in October - is this a recent development? .

Can anyone explain the significance of my scan results obtained by Vic, the sonographer? I am told the norm for each measurement is 1.

L CCSVI 90° L JUGULAR CSA : 3.54 mm² L JUGULAR DELTA CSA : 10.05 mm²
L CCSVI 0° L JUGULAR CSA : 13.60 mm² L JUGULAR DELTA CSA : 10.05 mm²

R CCSVI 90° R JUGULAR CSA : 7.01 mm² R JUGULAR DELTA CSA : 15.77 mm²
R CCSVI 0° R JUGULAR CSA : 22.78 mm² R JUGULAR DELTA CSA : 15.77 mm²

How long is one required to be in Edinburgh?

Any hotel recommendations for wheelchair dependent patients?

We’re very close to the two month date since Emma had the procedure in Edinburgh, so time for an update.

Any changes? Well nothing groundbreaking. Pretty much everything that improved post procedure has stayed and or improved further.
There is one small exception, Emma’s eyesight, which was the single biggest and fastest improvement (almost instant) has regressed very slightly. It is still way way better than pre procedure (the prescription improvement remained), but the pure clarity that appeared in the days after has lost its edge very slightly. Emma’s eyesight is still heavily reliant on rest and diet though, we’ve still to fully understand why and what exactly. So not a regression, but a point worth noting.

On the positive side, fatigue has reduced, leg strength particularly has improved enormously. Emma was sat on the floor at the weekend and stood up almost as quickly as an able bodied person. Pre procedure I would have had to lift her. However balance has a long way to go.

My non medical mind has come to the conclusion that the increases blood flow and oxygenation of the blood is helping mend the muscle system and the general physical wellbeing, but the nerve bits are a different kettle of fish. So physically Emma is getting in better shape day by day, but the 13 years of MS attacks on the nerves are going to take a lot longer to regain function, if indeed they do regain function.

So lots of strength in the legs, but still wall surfing and using a walking stick (although much less reliant on the stick)

No improvements yet on issues like cog fog and mental processing...still completely blonde in that department I’m afraid!

She started Hyperbaric oxygen therapy today (22nd February) we’re at the beginning if an intensive 6 weeks course of chamber visits, I’ll report updates on the HBOT thread specifically about this but will also keep up the monthly updates here.

Next update end of March, unless anything worth noting happens in the meantime (good or bad).

Trent wrote: How long is one required to be in Edinburgh?

Any hotel recommendations for wheelchair dependent patients?

Sorry Trent just noticed this.

Allow a week realistically from the pre op chat to the procedure to the check up two days post precedure.

This isn't exactly a holiday trip, if It was I'd vote for the Sheraton, however, what you want is something reasoinably priced, reasonably acessible, with decent facilites.

The Best Western Edinburgh City Hotel has parking in the (cobbled) courtyard right by the entrance for wheelchair users, they have ground floor accessible rooms, a decent enough restaurant & bar and are close enough to the city centre if you do want to venture out.

They have a deal with the clinic so you'll get sensible rates B&B.

It's no Marriott, but it's decent enough and wroks if you're chair bound.

Thanks EJC.
Hope Emma's improvemets continue to grow.

3 month update and........not a great deal to report to be honest. No change is where we are now.

On the face of it some may feel that's a bit dissapointing. The improvements Emma showed post procedure have all remained but there are no life changing wonder improvements we all secretly hope for.

Except one:-

So far Emma hasn't relapsed or shown any sign of a relapse. Pre procedure she was relapsing at least once a month and sometimes lasting a month. 3 months post procedure and not a hint of a relapse.

The holy grail we all search for with this procedure is arresting, or at least slowing progression of the MonSter, anything else is a bonus.

So far so good, Emma's relapse rate has dropped dramatically (too early to say it's stopped - but signs are very promising).

We are continuing with Baric Oxygen therapy which is proving to be extremely helpful.

Ultimately, compared to three months ago, Emma's quality of life has improved and continued to improve.

If only we could conqueur the depression, anger, frustration and fatigue at the same time we'd be there!

Let be realistic about treating CCSVI syndrome, my motivation was simply no relapses. Remyelination and plasicity may take months to develop. I am very interested in Oxygen Therapy after destenosis.
Sounds like a good result to me.

MarkW

Emma only discovered oxygen therapy post procedure so she isn't a great example of before and after.

However, a combination of the oxygen treatment and CCSVI is working in a way no drug has to date. Difficult to say which is proving the more helpful, but whilst it's all good Emma will take whatever she can get.

Well 6 months has passed and today Emma and I went to Guildford for a follow up scan of her procedure.

How is she now 6 months on?

Well she certainly has improvements from pre procedure, however some of the improvements have gradually regressed but overall she's in better shape than she was.

Eyesight has remained good in her right eye but the left has regressed, albeit not as far as pre procedure.

The single most noticable improvement is the substantial reduction of relapses.

Pre procedure the relapses were coming thick and fast , so fast that they were starting to merge together and it looked like Emma was entering SPMS. Since December Emma has had a single minor relapse.

The results of todays scan will be sent up to Glasgow and we'll get a consultation by phone on the results.

From what I picked up today talking with Vic.

Emma had no vein narrowing pre procedure in either jugular, but did in the azygos. She had malformed valves in both Jugulars and her left entire jugular was congenitally smaller than the right (about half the diameter).

Her procdure aimed to open up both valves and remove the blockage in the azygos.

Six months on, her right jug still has a valve, however it is working at much more like a normal level than pre procedure.

Her left jug is still not good - but I'm not entirely sure what they can do about that, as it's not exactly stenosis if the entire vein never evolved to the right size.

Of course this kind of scan (doppler ultrasound) can't check the azygos.

We will be getting a nother scan at 1 year (in a further 6 months).

When we've had the consultation this week I'll post more about that discussion.

In the last 4 weeks Emma has been having a B12 shot as we discovered her levels were low (and supplements just don't cut the mustard it needs to be a shot) along with folic acid supplements.

Her fatigue has been reduced enormously, if this is something you've never been tested for - it's an easy blood test at your doctor - get it done.

Emma also continues Baric oxygen treatment once a week.

Now almost 5 months off Copaxone there have been no detrimental effects of not taking that drug that we can tell.

Thanks for providing updates and great news that the relapses have slowed, fingers crossed that they continue to slow/stop and more symptom improvements are seen.

A couple of questions if thats ok..

Her procedure aimed to open up both valves and remove the blockage in the azygos.
Six months on, her right jug still has a valve, however it is working at much more like a normal level than pre procedure.

You say that both valves were opened...did Vic go into any more detail at the follow up regarding the opening of the valves? Is it working at a more normal level meaning, is it opening and closing as normal valves should?

In the last 4 weeks Emma has been having a B12

Did you go to your GP for the shots, if not where did you get them.

Thanks for the help.

Luvsadonut wrote:
A couple of questions if thats ok..

You say that both valves were opened...did Vic go into any more detail at the follow up regarding the opening of the valves? Is it working at a more normal level meaning, is it opening and closing as normal valves should?

In the last 4 weeks Emma has been having a B12

Did you go to your GP for the shots, if not where did you get them.

Thanks for the help.

Vic actually said he would not discuss the findings with us in any detail on the day of the scan. His findings are sent up to Glasgow/Edinburgh. We then get a call once the surgeon (Donald) has had a look through them.

As I was watching the scans I saw where Vic came across the valves and pointed them out - we then had abreif discussion about them (although he wasn't really meant to).

When we had the initial procedure Donald expalined he had opened the valve in the left Jug but her right was so small he was concerned about overtreating (doing damage). I get the feeling the EHC are being cautious with treatment now I've seen the scans. In my mind that's a good thing, if they later find they can treat more aggressively or in a different way we can take a second procedure. But if it reduces the risk of damage or restenosis due to overtreatement that's more difficult to correct.

The B12 we get from Emma's Doc, it came about as I discovered her father and aunt both take shots for low B12 levels - yet no one had ever tested Emma.

We got her down to the Doc had a blood test that screened all the usuals including B12.

The results came back she was slightly under average B12 level but very very low on folates.

She has 5 shots in 5 weeks then we take another blood test plus she's taking 5mg folic acid daily.

Fatige has reduced noticeably.

Do some research on the B12 shots and their relationship with MS - it's interesting reading. We have been told by three Docs now that supplements are pretty much useless, the injection is really far more effective.