One cane available, genuine reason for sale.

Today is the first day of the rest of my life.
Sorry for the platitude, but this is the day for them.To my on-line friends - I'm still a unicorn free zone, though.

At 6am in the hospital, one of the surgeons came round and checked with everyone that they had no problems after their angioplasty, issued their documents and CDs of their treatments and a prescription for whatever medication they were going to need as a follow-up.

 Throughout, all the medical staff have been scrupulous in not discussing what the surgery may or may not do for your MS. Just what your tests showed, what they did as a result, and the results of your surgery. No raising of hopes and expectations. Vascular surgeons, carrying out a vascular procedure.

But for us, the patients, things are different.

Last night, sensation returned to my feet, and I was able to get into my pyjamas without leaning on the wall for support. That may not seem much, but to someone with MS, it is a big deal.

Today, I am standing and walking without my cane. For the first day in a longtime, when I did that system check on waking, to see what is or isn't working today, and things were better than they were yesterday. It is hard to explain the sheer joy of that feeling. Instead of the insidious decline into the darkness, I have taken a few leaps towards being normal again.

Of my cohort of five patients:

1. (me) balloon angioplasty - walking without cane, balance back, head clear.

2. balloon angioplasty - walking without rollator, balance back, head clear, hands and feet warm, speech no longer slurred.

3. balloon angioplasty - still mostly wheelchair, but increased mobility in arms and legs, hands and feet warm, head clear

4. one stent - whellchair bound, speech back, hands and feet warm, head clear

5. jugular blockage reduced from 90% to 40%, may need further surgery, no change in symptoms.

Today is the day

8am in the hotel lobby.

A cluster of nervous people assembled, waiting transfer to the clinic. Overnight bags packed, paperwork ready and adrenaline pumping.

Our driver takes us to the clinic where we hand over our paperwork , change into hospital gowns and get into bed. In between the nurses bustling around, taking blood and urine samples, attaching sensor pads for the ECG machine and generally getting us ready, we are each seen by the anaesthetist and a neurologist.

Each of the rooms has three beds, and by the time one of the surgeons comes in to carry out a Doppler ultrasound exam on me, we hear that the first procedure is over and the second is underway.

I go in at about midday, having had a number of litres of fluid via IV and a catheter fitted. To be honest I remember little of what happened from there onwards. Access is done via my right femoral vein, where a local anaesthetic is used, and I am given light sedation to keep me relaxed.

After what felt like 5 minutes, but was in fact about an hour, the surgeon came to my head, to say that they had done balloon angioplasty with excellent results. I was wheeled back and put to bed where Robin was waiting.

First Day

Everything here runs like a well oiled machine. Each day, a fresh cohort arrives and one leaves, others passing through the sequence of tests and operation.

Day one is tests , starting with  optical coherence tomography, which is being mooted as a better test of disability progress than MRIs. My own results correlate quite well with my Doppler test from Dublin and my experience of symtoms to date.

Then back to the hotel for a detailed presentation on the procedure by one of the clinic medical staff, followed by a question and answer session. Plenty of information on the potential risks and also statistics of what they have actually experienced here. Over 500 patients and no major adverse events, just under 60% balloon angioplasty alone, the balance requiring stents.

They check and work on the jugular, brachiocephalic and azygous veins. Venography during theatre is used to assess blockage and progress throughout.

After the talk, we go off for MRV testing. This is using MagneticResonance Imaging to look specifically at the veins associated with the central nervous system. So far at Dr Simka's clinic only two patients have stopped at this stage, because they showed no signs of CCSVI.

I hate MRIs. I would rather have another lumbar puncture than an MRI, but this is somthing I have to go through, if I want to progress, so it is grit your teeth and go on with it.  Once the technician/radiologist starts to fasten the coils around my chest, I close my eyes and start to go over our sailing trip in my head. That way I don't see the cage go round me head, or the narrow tube as I go in.

Thankfully the ear muffs reduce the sound to unpleasant, and thw whole thing is over seconds before I press the "I can't take this anymore" button in my right hand.

So back to the hotel. Nothing to eat or drink after midnight.

Monday 20th September

One hell of a birthday.

Up early and off to Luton Airport for our flight to Katowice. I didn't sleep well last night, nerves I guess.

We parked the car in the disabled slots, near the terminal and went to check in. By now we are familiar with the location of the travel assistance desk, where you pick up a wheelchair to get through the terminal and arrange help to get on the plane. I must confess to bursting into tears the first time we used their services, but now I know it is the only way I can make the flight.

Last onto the plane, via a special lift and avoiding any stairs, the flight was soon underway. I glanced out of the window to work out where we would be crossing the English coast, to see the recognisable shape of Tollesbury Fleet , the marina and the River Blackwater pass beneath us. It felt like Catabout was calling out to me.


So our two great adventues this year are linked again. Is this an omen? And if so, good or bad?

The next step

Those of you who read my last blog, about our sailing adventures, may remember me talking about having some tests done in Dublin. Well this one is all about the follow up; a trip to Poland to have further investigations and a form of angioplasty, known in MS circles as the Liberation Procedure.

Multiple Sclerosis is a very frustrating disease. It is chronic, progressive and incurable. The only treatments available are symptomatic, ie to help things like bladder control and depression, or aimed at slowing down the rate at which you get worse. The side effects vary from skin reactions to death.

There are no hard facts about how many people in the UK and round the world suffer from it (no actual numbers are recorded anywhere) but the official guesstimate is about 100,000 in the UK alone. So you can see there are a lot of frustrated people out there watching their lives drain away as their immune system eats away at their central nervous system.

Yes, there are still some who are able do a lot, although this is usually in the earlier stages of the disease. Or at a price. That day at a family wedding is at the cost of three or four days of pain and complete exhaustion afterwards.

So we are all looking for something to halt or even by some miracle reverse the progression. Diet, supplements, daily injections, chemotherapy, oxygen therapy, stem cells, bee sting therapy. All are used, but so far nothing halts the relentless progress. The cause(s), triggers etc remain unknown. As you will appreciate anything new causes a stir. So when a new theory emerged that a problem with blood drainage from the brain and spinal chord was one of the potential causes of MS called Chronic Cerebral Venous Insufficiency (CCSVI) and that a relatively simple operation was possible, well......

In this, the Internet age, Dr Zamboni's theory has spread like wildfire. Chat rooms and forums have endless discussion of the pros and cons. Doctors, vascular surgeons and neurologists are clearly divided. As debate rages around the world, what is an individual person with MS to do?

As with all things related to this disease, it comes down to that individual. Some countries have decided, notably Kuwait, to offer all their citizens the treatment, and do a retrospective study on the effects on relapse rate and disease progression. Others are funding some studies which make take several years to produce meaningful results. Meanwhile a number of centres have sprung up around the world offering the procedure to those who would rather not wait and have the resources to fund their own treatment.

So next Monday I fly out to Poland. The Doppler ultrasound investigation I had done in Dublin showed a definite problem on my right internal jugular vein. So nothing ventured, nothing gained. I'm giving it a try. My brother died as a result of this damned disease, and I'm not going down without a fight.