Testimonial

Cerebral Palsy - Cervical Disc Prolapse with spinal cord compression

Hi, my name is Jason Stedwell and I am 30 years old. I attended Spinal Rehab because of a neck problem that was getting progressively worse; and not because of my cerebral palsy. However, as you read my story you will appreciate not only the changes to my neck and spine but the amazing impact to my cerebral palsy.

I was born with Cerebral Palsy subsequent to 'placental hypoxia' which is a condition where the placenta is deprived of adequate blood flow and vital oxygen. This results in lower than normal oxygenated blood being available to the unborn child and unfortunately the developing brain.

Anyway, I seemed to be OK until about 12-months of age when I was initially diagnosed. My parents were told by the doctor that I would not be able to 'walk, talk, take care of myself or be educated'. What a shock for my patents! I was required to attend for physio at the Royal Children's Hospital 5 times a week until I was 5 years old.

I started at a 'special school' for disabled children whilst receiving both physio & OT nearly everyday. During these early years, I had my legs in plaster at least 5-6 times to try to straighten my disabled legs (this required my legs being plastered sometimes from my ankles up to my thighs).

Finally I was given opportunity to integrate into a 'normal school' which happen in Year 5. I was required to do an extra 2-3 hours special study every night in an attempt to catch up. I was couple of years behind my classmates. During this period I was still receiving speech therapy, private tutoring once a fortnight and constant physio until I was 17. Eventually I was told to stop physio at the Royal Children's Hospital because they said they could not do anything else for me.

I ended my first year of Secondary College at St. Josephs with 9 A's and 1 B (in P.E. of all things!) and received an AWARD OF EXCELLENCE - not bad for a kid they said would be totally disabled! Eventually, I was made a school Prefect.

During my teenage years I was involved in several car accidents; and in one I was probably lucky to be alive. By the time I reached 19, I was seeing chiropractors on a fairly regular basis. I was having a lot of trouble with my back and neck which seemed to 'keep going out of place'. At age 21 I feel very ill with chicken-pox and ever since I have never really felt the same again (this is an important fact contributing to my overall condition according to Dr Hooper and confirmed by blood tests).

I started getting constant colds and flus, etc. and each year I started getting more and more spasms (jumpy) of my limbs. My CP was slowly getting worse, I could no longer walk the distances I used to walk, my visits to the chiropractors became more regular, I was getting tired easier, things that I didn’t take notice of at the time that I now looking back, were becoming harder to do.

Around the age of 25, I became very sick for about a year. After having endless amounts of medical tests I was told that I had a hiatus hernia in the stomach. My opinion was I that I had some sort of viral bug in my system causing really bad spasms in my stomach and bowel.

I started seeing a muscle manipulator who was helping me a lot. Strengthening my back and getting rid of knots in my back, neck, legs, feet, arms, hands and most importantly my stomach. After my stomach was worked on I felt like a new person, I could breathe properly, felt like I wasn’t twisted and became less irritable. 

My neck continued to be a problem and eventually in 1998 my neck became very stiff and sore and it took about 3-months of intensive treatments to get some relief.

This whole time my CP spasms were getting worse and worse, to the stage were I didn’t want to go out.  As if  my CP wasn’t enough, I jumped every time someone would talk loud, bang something etc. very frustrating when your out for dinner for example.

When your disabled it’s hard enough getting people to relate to you and see past your physical disability, without jumping around like a jack in the box. People would think they were giving me a fright, but it’s just my muscles spasming uncontrollably. It is very hard to explain. I am only frighten of one thing and that’s loosing my family, nothing else frightens me!

Without dwelling on my CP and sicknesses, I have had a tremendous life which I owe to the support of my family. This might be a big statement to the uninformed, but I have not seen a family bring up a disabled person like I have been. From the word go they didn’t listen to the doctors' that told them that I would not walk, talk, be educated etc. I was treated like the other members of the family and given all the love in the world. Even though we were not well-off financially, I have had everything I have needed.

Running from doctors to physios and chiros just about every other day takes a lot of work, but my family have never complained. Still to this day my family does everything they can to assist in an attempt to give me a better my life.

Sometimes I have to stop and think because I forget that I am disabled. That’s the result of the way I was brought up, treated like everyone else, pulled into line when needed and related to like any other person. It’s hard because when I go out into the real world I am not treated like I am by my family and close friends and that’s more noticeable.

In these situations, I try and always think of the line in the song by Sting “It takes a man to suffer ignorance and smile!” A few close family and friends tell me that I inspire them and that I am their hero, but I do what I have to do, I don’t know any different. I was brought up to be a fighter. The harder things are, the harder I tackle them. It all comes back to my loving family.

Anyway, back to my story!

My CP spasms were getting worse and worse. The more I wanted to go out and meet people and new friends the more limited I was becoming. I couldn’t socialise because between catching colds and the flu; my back and spasms were restricting me.

When I start spasming (jumping), the more I try not to 'jump' the more I would spasm because my whole body tightens up and makes it worst. It’s like my body has programmed itself to spasm and it cannot break out of the negative cycle.

Around the first week in March 2001, my neck and back started to become really sore. I went to a football match and started spasming nearly uncontrollably.  Everytime someone said something, moved or made a noise I spasmed. The louder the noise the bigger the spasm. I actually had to get up and walk outside to try and break the cycle, I’ve never had to do that before. Usually I sit there and try to relax, think of pleasant things and try not to be noticed. But this night I couldn’t. Going home would have been the best thing to do. I didn’t want to wreck everyone's night so I sat down and prayed for the time to go past quickly.

The next Tuesday, March 06, 2001 I had an early muscle manipulators appointment, so I was getting ready to go. I got out of the shower and blew my nose as usual. The moment I blew my nose it felt like someone had 'stuck a knife' through the base of my neck.  I managed to crawl to my bedroom, were I fell to the floor in agony. It was the worst pain I have ever experienced in my life!

My body went stiff, I could not move my head, neck or left arm one inch, it was like they were frozen. Mum and I were in tears, she was very distressed. She had to physically lift me up, dress me and somehow get me into the car. The drive was a nightmare, every bump, every turn made me feel worse. After they released my neck in the carpark of the clinic, I was able to move around a bit more. My body was in shock. I was worked on some more and told to go home and take some anti-inflammatory tablets and try to go to sleep. I should be alright in a few days.  I have never been right since that morning.

Over the next week I didn’t sleep for more than 15 minutes at a time. Back and forward to the chiropractors etc. were I kept getting told 'everything is alright, you just have start moving it to make it strong again'. At this stage I didn’t know wether it was my arm, neck or both. I was become weaker and weaker by the day. Anti-inflammatory tablets were the only thing helping me a little bit.

Weeks turned into months and I was not improving  I was getting worse. My hand was aching, my left arm was sore all over and it had been shrinking. My left arm was half the size of my right arm, my left shoulder and back was full of knots and my neck was stuffed. Everytime I turned my neck to the left I would get sharp pains in my neck, shoulder and massive pains down the arm to the hand, as well as a burning sensation in the forearm.

I started seeing other chiropractors, acupuncturists, masseurs and physios. Everyone had a 'different opinion' but no one recommended any form of investigation. I was desperate, so I let each one try and fix me. Some helped and others made me feel worse. 

I even drove to Sorrento three Tuesday nights in a row to see my cousins chiropractor who helped a bit but after the third visit my neck got really sore again. Everyone of these people of which some are my very close friends tried their hardest but, in the end nobody got close to fixing my problem. My brother Troy was helping me more with massage, than anyone and he is a barrister!

During this time my spasms became worse by the week, my body was trying to protect my neck and shoulder. Everytime someone came near me I would spasm violently because my body thought  my neck and shoulder was going to get knocked. At the same time it was making everything tighten up and therefore worse. I was trapped inside my body and my condition was getting worse.

Everyone was trying to help me by suggesting someone different to see. My uncle had been telling me for years to see his mate. Because of the distance to travel I never gave it much thought, until then. Dolf did a lot of work with CP. patients and car accident victims. He uses physiotherapy, chiropractic and other techniques which I thought might help. The first visit nearly killed me, I felt like I had been hit by a bus. He said he had to get my body moving again. The soreness went away after two days and I finally felt like I was getting better for the first time in two months. I started seeing Dolf once a week and after three visits he had done more for me than everybody else put together twice. He showed me a lot of different exercises to strengthen different parts of my body. All the different sore spots in my back and neck he was able to slowly go through and fix them. I was able to cut down my anti-inflammatory tablets that I had been previously taking more and more each week. My body was on the slow road back.

After seeing Dolf for three months I was happy I was becoming stronger and happy I could at least sleep a whole night, with the help of an anti-inflammatory. But deep down I knew there was something that was not right. I running out of options.

At the start of August I read an article in the our Melbourne paper about Hyperbaric Medicine. The article was about a young CP patient who had great results with this treatment. It also said that they treat back injuries etc which caught my eye. I was inspired that this might be the answer to my neck and arm problem.

Even although the article was about a young boy with CP who was now able to walk because of the Hyperbaric treatment, I thought I would be too old to get any benefit with my CP but all I wanted was for my neck and shoulder to get better.

I had heard about Hyperbaric therapy working well with footballers and other sports people. My brother Troy was coming down from Queensland in mid August so I told him all about the article. We both decided we would check it out when he came down in three weeks. I had nothing to loose.

The first appointment with Dr Mal Hooper (I also call him Dr. Spear-chuka because of the acupuncture he also performs), I explained to him everything about my condition and my neck and shoulder. Dr Hooper explained in detail what Hyperbaric was all about, but said that I needed MRIs of my spine to determine the 'exact nature of my problem' and blood tests to identify the possibility of 'bugs' that may be in my system causing my condition to worsen.

When I asked about my CP, he said that their may be the possibility of some form of improvement, however the main objective was to get my neck sorted out. I remember him saying to my brother Troy that I may get some 5-10% improvement but obviously this would require various tests MRIs and SPECT scans to determine the possibility. At that stage I thought that would be excellent, but, I didn’t really think it would help with my CP at my age.

From the word go all I wanted was an end to my neck and shoulder problems. Mal understood completely about my spasms (unbelievable) and everything else. He said it was most likely due to a disc problem in my neck compressing into my spinal cord. He said that the increased pressure in my cord would have a negative effect on my CP.

The first thing I had to do was get a MRI of the brain, neck and full spinal cord. Which was an ordeal in itself. A triple appointment was booked in case I couldn’t stay still or control my spasms. Focusing and trying hard, I got through without any trouble in half the time. Afterwards I was completely worn out.

D-Day had arrived, I was going to find out what my problem was. Firstly it was my neck that was causing the majority of the drama. The damage to my neck was identified as a large ruptured disc at the C5/6 level with major compression into my spinal cord causing rotation and deviation of the cord; and compression of the exiting nerve! The first thing Dr Hooper said was that my neck must not be manipulated. Now I'm told after years of exactly this type of treatment!!

The MRI of the brain showed very little damage caused by the CP, Dr Hooper was very surprised given the level of my actual CP disability. Based on the MRI findings of my brain, Dr Hooper was quite happy suggesting that the hyperbaric treatment may in fact have a 'very positive effect' and help not only my neck but my CP.

He said - 'the better the condition of the brain the more chance of a positive result'. Fantastic! That was great news, but I was more immediately worried about my neck. One of my main questions was “Can my neck be fixed?” Mal assured me that he could and he had fixed similar injuries before. He showed us many 'before and after' MRIs of similar ruptured disc patients. I didn’t know whether to scream or cry!

I started taking the tablets (Dr Howard Occupational Physician), Rehab powder (amino acid antioxidant), using the DMSO and wearing the neck collar. The tablets allowed me to stop taking the anti-inflammatory tablets that were starting to get out of hand.

My first chamber session was okay once I became settled and learned how to breathe through an oxygen mask. Then I had a problem. My body became really fatigued, I lost my appetite, I felt like I was on another planet and didn’t know what was happening. For four days I was really sick. What had happened was the medication tablets were too strong and I had a bad reaction to them, I felt like a zombie. A few other things then happened: bad acid in the stomach (that I had years ago), sore ribs and lung area (because I was using a lot of my lungs) and severe headaches. After the second session I got worse but my neck felt good.

The next day I was not good at all. I went to my close friend, my muscle manipulator who knows a bit about hyperbaric treatment. I had a talk with her and broke down. I’d been fighting to get better for seven months. Joy told me “I was emotionally, physically and mentally exhausted and  I was fed up with fighting.” That made sense because I have always fought hard and never usually give in. I wanted it all to end. Joy also said to me that if I decided not to continue with the hyperbaric treatment no one would think any less of me and that I had achieved ten times more than the average person. That talk helped regain some of my spirit. I had a really good think and decided to keep going. Everything was bound to settle down surely.

Thank God I did because after two more double sessions (120-minutes in the chamber) it all turned around. All the dramas were nearly gone. I stopped taking the tablets and took other tablets to ease the acid problems. I thought I would have to take some kind of tablet to cover for the anti-inflammatory, but I took it day by day and got by with no pain killers.

By the end of that week I was feeling  99% better (all the first weeks dramas were gone) and I could see some big changes starting to happen.

By the time I had received 20-hours of Hyperbaric and physical therapy I noticed the following:-

·         All the side effects of the tablets (medication) were totally gone.

·         I was starting to become more steadier on my feet.

·         Improving balance.

·         My chilblains on my feet were 100% cured. Usually around Sept.-Oct. my chilblains are that bad that I can’t wear shoes.

·         Circulation in legs was 80% better; my legs weren’t cold 90% of the time.

·         Overall body temperature; I was a lot warmer.

·         Bowel movements were more frequent. I’ve always had a 'lazy bowel', so I have had to be extremely careful over the years.

·         Less muscle aches all over.

·         My neck was improving and if I took care I would not cause too much pain.

·         Muscles in my neck and shoulder were starting to relax and not be so tensed up.

·         Spasms were easing off.

·         My appetite was back and I was eating more.

·         My sinuses were improving, which was helping with my balance and confidence.

·         Sores were healing quicker and skin was cleaner.

·         The main problem:- NECK & LEFT SHOULDER – Absolutely no pain killers needed, Sore but not aching 15% better. When I turn my head to the left it was still sore in the back and I have referred pain in the left hand (near the middle of my knuckles). The inside of the left wrist up towards the elbow; I have a burning sensation that comes and goes, this is has got a lot better. All of these things are not aching like they did before HBOT.

·         I am sleeping better; I am now able to sleep without waking up through the night and in the morning my neck was hardly sore at all.

·         I find HBOT and treatments really tiring- but worth the trouble.

·         I had a 3-4 day period where I felt like I was 16 again, a lot energy and hardly any spasms. Then a down time.

With this treatment it is not all better, better, better! It’s 10 steps forward, 5 back, 10 forward, 4 back and so on. What you gain you don’t loose. Your body has to readjust to different capabilities- better movement, things it hasn’t been able to do for a while or do before.

After 40-60 HBOT hours I have noticed the following:-

·         After a lean time I hit a purple patch.

·         My CP has improved in all aspects.

·         My speech is clearer.

·        My balance, gait and walking has been the most noticeable improvement. Not only was I walking better than 7 months ago when I hurt my neck, I was walking the best I had for 10+ years!!

·         After getting out of the chamber I am less spasmy, more relaxed and my gait-walking is outstanding.

·         Uncontrolled violent spasms have dropped by 50% some days.

·         My whole body is not so tense.

·         Because I am improving, my confidence is getting better and better.

·         The chamber is not tiring me out so much. I am definitely getting stronger.

·         Family and close friends that I hadn’t seen me for a month or more have made the following comments:- "I look like I did when I was 20 years old". "I’d put on weight (amazing)". "My walking and my ability to stand straight and remain still have improved". "My speech is clearer, my spasms and movements are better and I don't look like I am in pain all the time". These and the many other positive comments have spurred me on. I knew I was getting better but to hear it from those who know and love me -  was the best!

·         My aunty who hadn't seen me since I initially suffered the injury was shocked to see the difference in my body, balance, walking and speech.

·         My neck and shoulder have improved but in fact, not as quick as my CP improvements! Every aspect of the neck and shoulder are finally being sorted out. For example the burning sensation in the wrist area is about 75% gone. The constant pain and stiffness and sharp knife like pains in my neck; have virtually gone. I am having longer periods of feeling extremely well and less periods of feeling unstable. Finally I'm winning.

HBOT is the best thing I have done, although it has been more taxing on my body than the average person. The positive benefits outweigh the negatives by a 1000 to 1.

I would like to thank Dr Hooper and his team and my family for their continued support.

- Jason Stedwell 

My mother told Dr Hooper that she was looking down the hallway of our house towards my room. She said that she noticed me standing up perfectly straight for the first time. Mum's have a tendency to get a bit emotional, but its true!