Second full day at home.

Despite picking up a headcold, I am still feeling much better than before I left. 

I have four days left of heparin injections to ensure I get no post-operative blood clots forming in my newly opened veins. Today I gave myself the injection in my stomach, Robin has done them all so far. It was less difficult than I thought it would be, although diabetics who use insulin daily have my respect. Every instinct cries out against sticking something sharp into yourself, puncturing your skin. I cannot have any alcohol until I've finished the heparin, so the champagne celebrations will have to wait until the weekend.

The staircase is no longer my enemy. Whilst winning no prizes for speed, I can walk upstairs in a fairly normal fashion, one foot per step, and not hanging on to the bannister for grim death. Coming down is a little harder, but still better than before.

There is some criticism of the procedure: that the effects are a results of placebo. If this is placebo, give me more. Seriously though, I have considered this posibility. However, I have had one effect, correcting a problem I didn't know I had.

Robin had said nothing to me, so as not to cause distress, but in recent months the muscles on the right hand side of my face were drooping, making my eyes and mouth lopsided, particularly when I smiled or laughed. I was unaware of this. Since coming back from Poland, that lopsidedness has gone, my face no longer drooping. The first I knew about the whole thing was when Robin told me.

A day in the park.

Each day brings further improvements.

Today we went to Kew Gardens, where I was able to walk around and enjoy the autumn scenery, although with a few rest breaks along the way. A minor victory  included being able to tie my own shoelaces. Doesn't sound much, but a great deal to me.

Although my results have been dramatic enough, I don't want people to think of this operation as the cure for all things MS. If you are truly wheelchair bound, do not expect to get up and walk across the room. It has taken me back to how I was 2-3 years ago. A miracle to someone who hoped for a stop in progression, but the sick man has not picked up his bed and walked away just yet.

We have a long way to go in understanding what the hell is going on here, but I am grateful for the chance to be a lab rat. I will be taking part in the follow-up studies.

Back home.

Despite a very early departure from Katowice airport , the flight home was a very enjoyable experience. As you will remember that I needed special assistance to get through the airports on the way out.

Coming back, I was able to manage on my own, including up and down the steps of the aircraft. Landing at Luton, we joined the queue for passport control as a woman in a wheelchair , helped by special assistance staff, passed by. Robin laughed at me and said he had never seen anyone so happy  to stand in a queue before.

Family and friends who have seen me all remark how well I look. Long may this continue.

Why take the risk?

There has been so much heated debate about the whole issue of CCSVI, and many people, including eminent and well respected physicians, neurologists and patients, advocate waiting  until the whole thing is either proven to be another blind alley or the process becomes well developed and routine.

So why did I go now?

To those outside, it may seem like I made a sudden decision, but this is the culmination of much thought, since I got my official diagnosis in 2006. I have always been very sensitive to heat, particularly the sun on my head. Going out in the sun without a hat is very bad news.

Before my operation, when suffering a bad bout of trigeminal neuralgia sitting upright gave me some relief, relative to lying down. Hyperbaric oxygen does give me temporary improvement - at least 2 bar absolute, and the greater the pressure, the longer the relief.

So long before the advent of CCSVI theory, I felt there was something amiss with with the circulation in my brain.

I also did a lot of reading about MS, from its early days of identification, through to the present day.

Jean-Martin Charcot, professor of Neurology at the University of Paris, was the first to complete a detailed study of multiple sclerosis (MS), an autoimmune disease that affects the central nervous system. In 1868, Charcot analyzed some unusual symptoms in a young female patient—tremor, slurred speech, and abnormal eye movements—comparing them to other patients with similar symptoms. He documented his observations and wrote a clinical-pathological definition of MS that is still accurate today.


Throughout his life, Charcot believed that MS had something to do with the venous circulation of the brain.

My take on what is happening

Although the results for me seem nothing short of miraculous, I don't see this treatment as a cure for MS. I still think I have the disease, and it still has it's claws in me. I have intentional tremor in my left hand, and had a bout of trigeminal neuralgia last night (the room air conditioning blew cold air on to my neck in bed, a surefire way to kick off an attack).

But improving the circulation to my brain has done a lot to improve my symptoms, and those of my fellow people with MS here. Time will tell if it halts the progress.

Warming of hands and feet.
Nearly everyone I have spoken to reports this. One of the key biological controls in the body is to maintain the temperature and oxygen supply to the body core, the central nervous system and critical organs. In the same way as blood supply is withdrawn from your extremities on a cold day to conserve heat, pre-surgery it is being withdrawn to try and overcome the lack of oxygen to the brain. Post-surgery the oxygen is normal, so you get blood back to your hands and feet, and your skin doesn't look as grey.

Balance.
Balance improvement seems to be reported most often where people say they had a worse blockage one side or the other. If one side of the brain is relatively oxygen starved to the other, it processes the signals from eyes and ears slower , and you get resulting imbalance. Equalise things and the imbalance is lost.

Overall cogfog, clumsiness and difficulty controlling hands and feet (including walking)
Look what happens when the brain is oxygen starved at altitude - climbers and  pilots not breathing supplemental oxygen. Compare that with MS patients. Look familiar? Now give the brain back its oxygen supply. Lo and behold the symptoms go. Scientific studies have shown reduced oxygen perfusion in MS patients relative to healthy controls.

Fatigue
I went for a walk around Katowice today, and when I got back my body was tired but the 'I have been active' tired, not the overwhelming MS fatigue that hits regardless of what you have been doing.
It will take some time and work  to get my muscles back in shape, but I expect things to improve as they do.
If the blood is not draining from the brain properly, the waste products of metabolism will build up
 regardless of physical activity. Eventually the brain itself has to slow down to clear the backlog. Hence the almost coma-like sleep many of us experience in these circumstances.

Immune involvement
It may well be that the oxygen starvation and toxin build-up result in some cell death in the brain tissue which triggers the immune system and sensitises it to myelin. Other studies indicate iron build up in the cells of the brain, which may trigger the failure of the blood-brain barrier.


So if you can beg steal or borrow the money, or better yet get your medical authorities/insurance to pay for you to get this treatment, I would say go for it. I was patient number 998 in 2010 here, and they have had no major adverse events.

The only way is up.

Out of Hospital - Check ups

The first of my check-ups was yesterday afternoon with the neurologist. He smiled, but said he could think of no neurological explanation for what he was seeing.

Then this morning another Doppler ultrasound with one of the doctors from EuroMedic. Flow is now good in both my left and right jugular veins. Because they are both quite wide, the risk of restenosis is apparently quite low. Just keep up my injections for the next week, and then back in 6 months for a check-up.

I have some bruising in my right groin, where they accessed my femoral vein, and on my left hand where my IV cannula went in, other than that, fine.

These are two screen shots from my operation, showing pre and post angioplasty:

 Here you can see the contrast medium building up in my jugular, as it is unable to flow through, and spilling into some collateral veins.

After the ballooning the contrast is flowing straight through, down and towards my heart. This was the darkest image I could find, because the contrast medium went away so fast. There is no collateral vein circulation here.

Why Poland?

Places offering the Liberation Treatment are springing up all over the world, as the clamour from patients gets louder and louder. I wanted it done, but I also wanted to feel confident in the place and staff. After Dr Zamboni, there is probably one name that leaps out:
Dr Simka 

He is head of the clinic here in Poland offering the treatment, and everything I saw and heard increased my confidence in them:
EuroMedic

Travelling  to another country for any medical procedure is a scary business. In the UK there is much talk about people travelling abroad for work, then having to have the NHS sort out the mess after their return home.

Then of course there is the cost, not just of the treatment, but getting there and back, hotels etc. When I found that there was a flight from my local airport to Katowice, the decision was made.