I should have entered this after part 2 and before part 3…
In 2011 a friend on mine, a client called Linda living in Nova Scotia who also had MS, sent me an email urging me to look at W5 CTV, a Canadian TV station that had a ground breaking story.
The reporter had gone to see Dr Paolo Zamboni at the university of Ferrera in Italy, he was determined to cure his wife of MS and had been researching for several years. His research lead him to believe that his wife had a blockage in her jugular vein which was restricting the blood flow in his wife’s body. Now from the work I’d been doing with Dr Huggins, I understood that the hemoglobin in the red blood cells carries oxygen throughout the body, oxyhemoglobin. Dr Zamboni did an operation to enlarge the jugular veins and clear the blockage, this resulted in improved blood flow, hence, more oxygen to the brain.
His wife had tremendous results, he didn’t want to tell the world of his findings without having done further research. His work continued with another group of 120 MS patients and he found the common denominator with all patients was that they had all had some form of head trauma prior to being diagnosed with MS. In fact he found that all 120 patients he studied had the same story, they had fallen, car accident, been hit over the head or something to create head and neck trauma. He performed the operation on the patients who all had significant improvements.
He named the operation CCSVI or Chronic Cerebrospinal Venous Insufficiency. He then set about telling the world.
I knew that this was what I wanted to do, what I needed to do, but how was that going to happen knowing I loved my job but it wasn’t highly paid.
The problem of raising the money to go to Bulgaria where the operation was done was very slim, I searched for alternative locations that could possibly be more affordable.
I found that there were several countries performing the operation, Italy, Bulgaria, Poland, India, Sweden, Scoland and Puerto Rico. I called and asked about prices and was shocked to find it would be cheaper to go to Bulgaria than anywhere else. Yes the treatment was cheaper in India but getting there was very expensive and hygiene was a major consideration.
I eventually heard of three locations in the US, this has got to be a better option I thought. Sadly none of the locations were following Dr Zamboni’s protocol exactly, there is an arrogance problem here, yes they were performing CCSVI but it was being done in a different way. This gave me major concerns, I called and talked to staff who informed me that the operation was being done in “their own way”. The alarm bells were ringing, was this just a way to show the operation as not being credible or successful. A way of demeaning Zamboni’s work and persuading MS patients to stick with drugs rather than attempting to get their lives back.
So I decided to make Bulgaria my choice for having the operation, just knowing that more than 14,000 patients worldwide had had positive results from the operation and more than 1,500 had been to Bulgaria gave me a lot of confidence in their work. There are two locations in Bulgaria that are performing the CCSVI operation and following Dr Zamboni’s protocol, the main location is Tokada hospital in Sofia and the other in Varna.
From a cost perspective the Varna location was more viable financially, but Sofia was where I wanted to go, a good friend on mine in England had been there and reported wonderful results so if it would be possible, Sofia would be where I went.
The problem now was raising the money, I’d need about $10,000 to be able to go, have the operation, pay for a hotel for a week after to recuperate and feed myself during that time. Ok that was the biggest issue but I’d also be a lot better off if someone could be my caregiver during the time in Bulgaria.
My girlfriend at the time was a wonderful lady from Thailand although she lived in Israel, I didn’t think it would be possible for her to accompany me and stay for a week. Panee is an amazing woman who told me she would definitely be there to look after me for the whole week. I was really excited and extremely pleased that she would take the time off work and travel to Bulgaria.
Now, how do I get the money, after wracking my brains trying to think of ways I could generate the necessary funds and not coming up with any positive idea’s I was hit by a life changing slap in the face.
Friday April 22nd, I had to leave work in the afternoon to have the brakes on my truck replaced, I didn’t have much money so I opted to just have the front brakes replaced and keep the cost down as much as possible. $200 lighter I returned to work only to see Jamie our office manager looking quite upset. She came into my office and sat down looking really sad, she asked me to come into her office as she had some bad news.
As I sat down I noticed something on her desk that made me feel that dreaded pit in the stomach, a check.
She told me that Dr Huggins wanted to focus his attention on DNA testing rather than helping people through body chemistry re-balancing. In order to do this he would have to bring in a specialist in the area of DNA testing, to be able to pay this specialist he would have to cut his outlay, as I was one of only two salaried employee’s, the other being the office manager, I would have to go.
I know lots of people lose their jobs all the time, it’s a fact of life, the world moves on, the slap in the face was that I’d dedicated my life to Dr Huggins for the past three and a half years, taken very little vacation time, in fact in 08 I’d worked an additional 400 hours, unpaid..
He gave me a check, paying me to the end of the month, yes one weeks pay and that was it, I’d worked there with no pension or medical benefits and my reward was a check for one week and a slap in the face. It looked like the ccsvi operation was not going to happen now.
The first days as unemployed were very difficult, I think I was close to being in a state of depression, although in the back of my mind I kept telling myself that I had to do something to improve my situation, how I could raise the money to get to Bulgaria and give me a chance to live a normal life again. I started to think about the Alliance dentist’s who I’d worked with quite closely over the past three and a half years. They were all reasonably affluent, they had a good attitude towards helping others so why not help me?
I decided to write to all 43 Huggins trained dentists and explain my situation and appeal to them, my email explained why I was no longer working for Dr Huggins and reminded them of my willingness to help in the past. I had spent a great deal of time talking to their patients and getting patients to them for dental treatment. Now I was asking for them to return the favor and donate some money to the fund of saving my life.
In some ways I was a little disappointed in the response, of the 43 only 10 responded positively, but three friends and my sister and mother also helped financially. So, over the coming months I’d managed to raise around $13,000 which was enough to go to Bulgaria, have the operation and allow some time for recuperation after the surgery.
Jim and Nidnoy, my girlfriends aunt and uncle also made a big financial donation which really made a big difference, not only would I be able to go but I’d be able to survive financially for a few months until I was able to work again, this was excellent and relieved me of a great deal of stress.
I booked my surgery for the end of June and made the appropriate arrangements for flights etc, the wonderful, beautiful, amazing Panee also made arrangements to meet me there, I booked the hotel in Varna, made arrangements to stay in a motel the night before my flight from Denver and was like a kid with a gold card in Toys R us waiting to go.
June 27th I flew from Denver to London via Philadelphia, it actually was cheaper to fly to the UK, change airports then fly to Bulgaria, than to fly directly to Bulgaria. I arrived in London Heathrow the following day and had to transfer to Luton. This was very difficult for me as walking any distance was nigh on impossible. So I had to be wheelchaired from the plane, through customs and out to the taxi rank where I’d meet the taxi to transfer me the 35 miles to Luton.
Arriving at Luton was the start of several more problems, Luton airport used to be a small provincial airport but had gone through some major refurbishment over the past ten years. The taxi wasn’t allowed to take me to a drop off point at the terminal, he had to drop me about 100 yards away, it was extremely busy, lots of railings so the route was not direct, it was very a winding path that crossed roads. To make it worse a monsoon had started, rain was coming down so hard it was like a river flooding along the road.
The driver helped in that he parked then ran in the rain to get me a wheelchair, then he pushed me into a very small, partly covered waiting area where I could use a phone to ask for assistance. The person on the other end told me they would get someone out to me as soon as possible. Twenty minutes passed which doesn’t sound too bad except I was not completely sheltered from the rain. In fact my back was getting drenched, so I called again and was told “the person who was supposed to help, didn’t want to go out in the rain”. I tried not to sound too angry with the person on the phone and explained I was in a wheelchair and was getting soaked, so they sent someone out straight away.
It was another ten minutes before I was eventually in the terminal, through customs and in the departure lounge waiting for my Wizzair flight allowed me to really feel excited about the operation and seeing Panee again. She and I originally met in February in Colorado and I’d not seen her since March.
I arrived in Varna and was met by Irina, the Western Sales Manager for the clinic, she wheeled me through the airport and took me to her car. What a lovely woman she was, driving through Varna made me feel that I was in war torn Bosnia, it was a communist country until 23 years ago so the the buildings were grey concrete and didn’t look very friendly.
As we pulled up at the hotel, which looked really nice, I could see Panee stood on the steps waiting for me. I was really excited about having my operation but I almost felt just as excited about seeing Panee. Our meeting was wonderful, lots of hugs and kisses, I checked in, made arrangements with Irina for tomorrow then Panee and I went to our room.
The following morning after breakfast we were met by Irina who took us to the clinic for an evaluation and discussion with the neurologist. She was a nice lady, probably in her late 60′s or early 70′s, our communication was through Irina who interpreted. I became a little agitated when the neurologist explained that she didn’t think I had MS. Her words were that she felt it could be another type of sclerosis. I was confused by this comment and asked what she meant.
When she said that the symptoms I had made her feel that it could be something else, I could see she was struggling to find the right words to say to me, I then realised that she was intimating that it might not be MS but ALS. Amyotrophic lateral sclerosis is an 18 month to 5 year death sentence.
I immediately said that I didn’t think it was ALS because of several things, I had come into contact with several ALS patients and I really didn’t see my symptoms as ALS symptoms, after all I was still able to get around, work out and think clearly. No I could not accept that this was possibly happening to me, no not ALS.
I was really upset and it was difficult for me to think, or not think, I had to get this thought out of my head, there was no way I could have that disease.
We left and went to a nice little cafe to have lunch, I talked to Irina over lunch and expressed my concern about the neurologist and her view. Irina told me that she hadn’t said I had ALS, just that my symptoms were not typical MS.
Panee and I spent the rest of the day in the hotel, we just read and surfed the internet on her laptop, I was now getting really excited because tomorrow I would have my CCSVI operation and if things went really well I would be on my way to health again.
Irina picked Panee and I up from the hotel and took us to the hospital, pulling up in the parking lot, actually it wasn’t a parking lot it was park wherever you could, in side streets, in fields, wherever possible. Entering the hospital was a little daunting because there were lots of people milling around, the entrance looked old and decrepit. The paving stones were all cracked and it looked dirty, not what you want to see when entering a hospital.
What a difference between the western world and a country that only 23 years ago was communist. Inside wasn’t a lot better, so to say I was apprehensive was not really a good description of how I actually felt.
I was eventually taken to a special ward to meet the surgeon, a nice man who spoke some english so I started to feel a little better. After meeting the nurses I was taken into the operating theater, not really sure if that’s a good description, but that was where I was about to have the CCSVI.
I sat on the table, or where I was about to be operated on, the surgeon started to do some ultra sound scans on my neck to check for a blockage in the jugular veins. The left side was fine but the right was very constricted, it should have been around 14mm thick but only showed 4mm which meant the flow of blood had been very restricted. Because of my work with Dr Huggins and the research I’d done when I first heard about CCSVI I knew that the hemoglobin in the red blood cells carried oxygen or oxyhemoglobin to the organs and tissues throughout the body.
Having such a restriction meant the oxygen wasn’t getting to the organs, specifically the brain resulting in CCSVI or Chronic Cerebrospinal Venous Insufficiency.
Now comes the good part, the nurses who didn’t speak English gestured that I should lay on the operating table, they then removed my shoes, socks and sweat pants. At this point I was starting to feel a little strange but it became even more uncomfortable when a big burly nurse then removed my underwear. So I’m laying down with a T shirt on and the lower half of my body completely naked.
Another nurse then looked at me with a strange look in her eyes, she then began to shave me, moving my penis to one side then the other. She then brought out a tub of blue liquid and basically painted a pair of shorts on me, lifting my private parts up to swab around my genitals, I’m sure you can imagine how I was feeling, slightly embarrassed and slightly worried but I just kept telling myself that it would all be ok.The surgeon then explained what he would be doing as he made an incision at the top of my left leg and inserted a 2 mm diameter tube into the vein at the top of my leg, ouch.
He then thread a camera into the tube and started to push it into my body, there was a very advanced doppler scanner overhead monitoring my body so I could see where the camera was going. The surgeon would ask if I felt any pain as he approached the terminus in my chest, I seem to remember he called it the azygos vein, not sure if I’m right about that but anyway that vein was ok so he moved on to the jugular on the left side which was also ok.
It felt a little strange as he was threading this camera through my body but I knew it was for a good cause so I didn’t complain. When he reached the jugular on the right I definitely felt some discomfort, not real pain just discomfort so he continued. It was here that the vein was very constricted so he would have to use the angioplasty to inflate the balloon so the vein was increased in diameter.
The strangest feelings were going through my mind as I was aware of what was happening, seeing the surgeon manipulating the feed going into my body and watching the screen as the angioplasty balloon was inflated. He kept asking me if I was feeling pain as the balloon was pumped higher, although it wasn’t painful I could feel a tightness in my chest. Nothing like anything else I’d experienced.
When he finished and started to withdraw the camera and balloon, I could tell this thing was winding it’s way through my body, just weird, really weird.
The surgeon applied a lot of pressure to the exit point to stop it from bleeding, he did this by pressing very hard on my leg, he did this for about five minutes and then the nurses cleaned the area and covered me with a sheet. I looked at him and said, you remember in my notes it said that I had a humming bird bladder. He acknowledged my comment then nodded to the nurses to bring a bottle for me to pee in. This was the weirdest thing as the nurse removed the sheet, grabbed hold of my penis and placed it into a bottle. I was then told to pee, which I did, the nurse waited for me to finish, removed the bottle and wiped me before replacing the sheet.
Then Panee and Irina came into the operating theater and asked how I felt, I said OK but not any different at this time. I was then told that it may take three to six months before the operation could truly have a long lasting positive effect.
I was then wheeled out after dressing and taken in an elevator that had no internal door, as it went up to the top floor I could see the walls moving past, well the elevator moving past the walls actually. We got to the top floor and then wheeled into a ward, you could tell it was newly painted with a pastel green color. There were two very basic beds with two inch plastic mattresses. I could just about see out the window and Varna looked like war torn Bosnia, so not exactly a good view, but I’d had the operation and I was grateful.
That day in the hospital was terrible for me, I was confined to the very uncomfortable plastic mattresses bed for 24 hrs, not being able to get out of be meant that I would have to pee in a bottle, in itself isn’t so bad but the fact that I have a hummingbird bladder meant I would pee every hour. This is where Panee showed true love for me, every time I moved or looked uncomfortable she would jump to my rescue. If I needed anything she was there, I never had to ask for help, she just offered and that was absolutely wonderful.
The night was horrendous, I didn’t sleep at all, my butt was numb through laying in the same position, the bed was sweaty because of the plastic mattress and cheap sheets but I just kept telling myself it was only temporary and would be over soon. My faith in God was so important at that time, I kept reassuring myself that the Lord would look after me and with his help things would be good soon.
At 9 am the surgeon came to see me and inspected the wound where he’d made the incision, it had healed so after a few questions I was discharged from hospital.
Panee and I left with Irina, me in a wheelchair until I was off hospital grounds, back to the hotel and the comfort of a wonderful bed which I took advantage of straight away, I managed to sleep for several hours.
The first day after the operation was spent relaxing by the pool or reading, just taking it easy. I was so grateful to Panee, she helped me so much throughout the day, in fact I know I wouldn’t have been able to do anything without her help, I felt so blessed.
In some ways I felt a little sad because the improvements I expected weren’t happening, or at least not as quickly as I’d expected. I was still very unstable on my feet, my coordination and stability were just as before the operation.
I kept reminding myself that the surgeon had said it could take up to six months before I felt 100% again, so I just prayed that the success of the operation would take place in time. After all, there had been more than 14,000 success stories around the world to date so why wouldn’t it happen for me.
After a week of relaxing at the hotel, it was time to leave Bulgaria, I was a little sad as my healing hadn’t happened as I’d expected and I was saying goodbye to Panee, she had to return to Israel for the rest of the year and I was flying to England to see family and friends.
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