My Rollercoaster Ride



From: "Janet" jezsab@bigpond.net.au
Sent: May 11, 2006

I am an Australian who was diagnosed with a cavernous haemangioma in the brain stem almost 10 years ago at age 40. I thought I would tell my story here for anyone interested. It is a long one, sorry folks, but I think it will be good therapy for me to share it with some people who understand what I have been through. Maybe some of you have suggestions re how I can overcome some of the residual problems I am left with. Others may gain some insight from my experiences.

One day I woke up with numbness in the right side of my face. I had never experienced anything like this before. As the day progressed my face began to droop on that side. I had hit my head on a door a week earlier and thought maybe I had hurt my neck so off I went to the chiropractor. After a couple of sessions he advised me to see a neurologist as he felt it was not connected to my little accident. By then I felt as if my hands were not coordinated and my walking seemed strange too. The neurologist referred me for an MRI immediately, suspecting MS or a brain tumour. (I'm sure this sounds familiar to some of you!) He was able to diagnose the haemangioma immediately after the MRI. Given that my symptoms were settling down by then, he advised a wait and see approach. He didn't tell me anything about the future possibilities so I was unaware of how serious my situation was.

2 years later, at a family gathering, I suddenly had a choking attack which left me quite breathless. Embarrassed I rushed from the dining room of the restaurant to the ladies room where I could cough and choke without everyone looking at me. Trouble was, I was alone and couldn't get my breath, much like an asthma attack. I thought I was going to die but after several minutes I was able to breathe normally again. Not long after I realised my face was drooping again and my voice became slurred. No it wasn't the champagne! As time progressed I wasn't able to walk properly and became very uncoordinated. I kept hiccupping which was very disturbing and annoying. I knew it was another bleed even before the MRI confirmed this was the case.

I saw two different neurosurgeons and both had the same opinion, that the angioma was inoperable given its position in the brain stem. I was told that maybe in the future if I had a further bleed the position of the angioma might change and it could possibly be removed. In the meantime I would just have to rest and wait and see. I was still in denial about the seriousness of my condition.

It took a couple of months for me to recover enough to go back to work. By then my symptoms had improved but I was still having problems for a long time afterwards, especially when fatigued. Given I was working fulltime I had to cut down on so many other activities in my personal life in order to cope with my situation. I think some people who knew me thought it was psychological rather than physical because as always I looked the picture of health!

After 18 months I was referred to a chiropractic neurologist who I found very helpful. He tested me thoroughly and concluded that I was in poor condition neurologically. He gave me a program of exercises to follow which would help stimulate my recovery. I had to gargle each day to help improve my swallowing and slurred speech. There were eye tracking and hand coordination exercises. I listened to Mozart each day. All sounds pretty weird but within a month my symptoms had lessened and after three months I felt so much better.

Another symptom that did not go away was the continual burning pain I felt over the right side of my face. The neurologist prescribed Endep to help with this and it did help lessen my awareness of the pain but I found that the drug made me very drowsy. I took this for 2 years. Amazingly, a friend's recommendation to a microdentistry clinic would bring new hope to me. I asked the dentist to take care when touching the right side of my face as it was very painful. She told me she may be able to help me with some low level laser therapy which she believed was helpful to treat neuralgia. This wonderful lady arranged free treatment for me over many sessions and gradually the pain lessened to the degree that I was able to stop taking the drug treatment. I also observed that the droop in my face became less noticeable.

Life went on fairly normally for a few years. I regained my physical fitness and got back into a lot of my old activities again. My attitude to life had changed completely though and I changed my priorities. My husband Phil and I became much more spontaneous and living more for now than the future. We had always traveled a lot but now some plans became more urgent and we didn't worry about spending our money on a little more luxury. If we had a bad day at work we would head off to a movie and dinner on the spur of the moment rather than going home to cook. We reduced our focus on saving towards our retirement to put more money into enjoying ourselves in the here and now. Looking back now I can see how lucky I was to have some warning of my future so we could change the way we lived before it was too late. There are things I was able to do that would be virtually impossible for me to do now.

Almost 3 years ago I began to experience a few symptoms again over a couple of days. It was a weekend so I told Phil that I would need to contact the neurologist for a review the next day. However overnight I woke up feeling very dizzy. The world was spinning and when I got out of bed I fell over. I couldn't stand up and began vomiting continually. What a nightmare! I was admitted to hospital, still vomiting and still spinning out of control. An MRI confirmed a further bleed. Andrew Danks, a neurosurgeon who I had seen previously, came back into the picture to assess my situation. He believed that the lesion had expanded so that he may be able to remove it. We discussed all the risks and I consulted with another neurosurgeon for a second opinion. There was a possibility that it may still be unable to be removed during surgery but I decided it was worth the chance to get rid of this *@!?%*! forever. I was operated on 1st July 2003.

Some family members gathered at the hospital to give Phil moral support while I was having the op. Phil had been told that if I came out of surgery after two hours it would mean that they had not been able to remove the lesion. They all sat around nervously talking about this possibility. At around the two hour mark they saw a nurse approaching the waiting room through the window in the door. They looked at one another with trepidation as she opened the door and came in. But she didn't say anything, just went to the refrigerator to get her sandwich. When she left the room they all broke down laughing (and crying in Phil's case) with relief!!! It must have been so hard for them all over those hours while for me the operation went like a blink of an eye.

Immediately after I woke in intensive care we were given the news that my surgery had been a success. The lesion had been protruding slightly through the floor of the lower part of the 4th ventricle and extended to the perimeter of the brain stem. Now came the long journey of recovery, one that continues almost 3 years on. The first week was extremely hard with lots of problems post operatively, but I just kept telling myself "time will pass, you will feel better". It was like being on a rollercoaster and knowing you can't get off until it is over. I had breathing difficulties, was unable to swallow for a week so had a naso gastric tube to feed me, was plagued with hiccups, had double vision, couldn't urinate so had to have a catheter, couldn't speak properly and couldn't walk. I say I couldn't speak properly but this didn't stop me from talking. When I had visitors I wouldn't stop talking even though they couldn't understand me half the time.

As the week progressed I was able to begin taking my first steps with help. The double vision settled down over a few days. I hated the naso gastric tube with a passion and desperately wanted it removed so I willed my swallow reflex to return. My visitors were all intrigued by the bright blue fluid that was being fed through the tube in my nose. I even threw up one day in front of another patient's visitors - it looked like a scene from the exorcist!!! After a week I was able to swallow vitamised food which was bliss. I was transferred to a rehabilitation hospital where I continued to make rapid progress. I was expected to be there for a month but was home after only two weeks. I continued to have dizziness and balance problems and attended physiotherapy and rehab for six months as an outpatient to help overcome these problems. I also went back to see the chiropractic neurologist who assisted me with a rehabilitation program.

Three years on and my life is much better. I am still disabled to some degree but it doesn't prevent me from enjoying my life as much as I can. To this day I still have problems with dizziness and balance problems but it has progressively improved over time and I hope will continue to lessen in the future. I learned a big lesson 5 months ago when I became overconfident, had a fall and broke my right humerus very badly. An operation was needed to insert two plates and 18 screws to hold my arm together!! I have learned the hard way that I need to always show caution given that my balance is disturbed. I am still having physiotherapy for my arm and it will take several months more to fully heal. I hit my head in the fall too and it has taken me all that time to recover to the level I was at before my fall. I am interested in hearing from anyone who has had similar balance problems and has managed to overcome them. I can walk independently for short periods though now use a walking stick to help with my balance and to warn others to give me some space. I find it difficult to walk down slopes though, we call this my "runaway legs".

I was retired from work due to my disability which was a relief as I would not have coped with trying to get back into the workplace in my condition, and even now it would be too difficult for me. I continue to suffer from neuro fatigue. My vision is a lot better though I did have to get spectacles to help with this. Fortunately the double vision was not permanent. My speech is generally quite good though does get slurred when tired. The neuralgia in my face is still there but did not get any worse after the last bleed. However I did end up with neuralgia in my right arm which continually burns. I had some further low level laser therapy which helped reduce the pain to manageable levels but it has not gone away entirely, I have just learned to ignore it I think. I have lost temperature sensation in my right arm, face and torso so have to be careful around heat. It is a weird thing. I no longer have baths because it feels so strange to have half your body in hot water and the other half to feel like it is in cold water! I still have trouble swallowing at times, particularly if I am tired or not concentrating while eating. I also have trouble with regular breathing attacks which are like hyperventilating and these can be very distressing. I have learned to control them to a certain degree with breathing exercises but not got rid of them entirely.

I guess the other major impact is the emotional one. I am unable to cry anymore which must be neurological. I do get tears in my right eye when I feel sad, laugh a lot or peel onions. I only get tears in my left eye when I am out in a cold breeze. Yet another strange side effect. It is hard not to be able to show your emotions in a normal manner. My father died late last year and although I was devestated I was unable to cry as I would normally do. I still feel the emotion, just can't show it in the same way. I think it would do me good to have a big sobbing fit! Phil has shed enough tears for both of us though!

I do find it hard to be different to my old self. I don't look that much different but inside I feel totally changed. I feel a sense of loss that I no longer have my old life. At times I feel disconnected from all that is going on around me, and can't really explain to anyone how that feels. Phil has been incredibly supportive and tries to understand as much as he can. I don't know how I would have survived all this without that love and support. My friends and family have also been incredible, making sure that I enjoy my life as much as possible despite the restrictions. I have a good social life but it is restricted to more sedentary activities these days. I do play lawn bowls which is my only sporting activity and it is very therapeutic though I have been out of action since I broke my arm. I still can't drive but would love one day to get back behind the wheel of my car. I hate not being able to just jump in the car and go anywhere I want to without having to depend on someone else. I have always been so fiercely independent so that has been a big change for me, not being able to go places on my own.

I am currently seeing someone for acupuncture and energy healing and it is having a good effect on my own energy levels and wellbeing. I also practice meditation morning and night and this has been very therapeutic for self healing plus it helps reduce dizziness. I have good nutrition and take some supplements, especially magnesium, which I think makes a great difference too. I have started doing some gentle yoga exercises each day.

In spite of all the difficulties I have experienced, I still feel a sense of optimism that there are better times ahead. I just have to be patient and continue to seek help to return to good health. Eventually I hope the rollercoaster will come to a halt and I will be able to get off, feeling healthy once more!

January 2008 Update

It is now the beginning of 2008, nineteen months since I first recorded my story on the Angioma Alliance website. Reading back over my story makes me realize how much further I have progressed health-wise since then. I still have neurological deficits but most of them have improved over that time. Our bodies have such a great capacity for self healing if we remain positive and look after our health within whatever limitations we have.

I thought I would take the opportunity to update my story as it is a good exercise for me to review how far I have come in that time. I am now 51 years old. I still experience dizziness on a daily basis although I am sure it has lessened over time. I don't notice it much when I am resting however as soon as I move around it increases, especially if I move my eyes or head.

It is summertime here at the moment and I have noticed that my dizziness increases in the heat. My balance is still affected but again I can sense much improvement as I am able to do a lot more physical activity without feeling like I am going to fall over. I am careful not to put myself in risky situations to avoid falling and injuring myself. I play lawn bowls 2 or 3 times a week and have noticed that my form is continually improving which I think is due to better balance. I used to feel like I was going to fall to one side when I delivered a bowl but rarely feel like that these days.

I continue to suffer from neuralgia on my right side of my face, head, neck, right arm and chest. This has not improved over the past year and I continue to feel it as a burning sensation in those areas. It is worse when it is cold and also in extreme heat. Mostly I try not to think about it and that helps me to cope.

I meditate once or twice a day and this keeps me sane! My breathing has improved greatly and I am having less breathless attacks than before. When I do experience one I am able to control it fairly well through breathing exercises. My breathing is worse at night and I think this is mostly from inhalation of saliva when I am sleeping which then stimulates my over sensitive gag reflex. I have to concentrate when eating or drinking so that I swallow properly but have a lot less problems these days. I generally only have problems swallowing if I am suffering from neuro fatigue. I still haven't got a complete cough but it is pretty good now. It obviously doesn't sound like a normal cough as you wouldn't believe how often people say "Bless You" when I cough as they think I have sneezed!!! I have to admit that I find it quite annoying but try to ignore it these days. I guess it just reminds me that something is not quite right even if it feels like normal to me!

I have also found that my voice is a lot more like the old me these days, except it is maybe a bit deeper. It gets a little slurred when I am tired and I think I may be harder to understand when speaking on the phone. I often find people don't seem to understand me at the beginning of a phone conversation, it takes a moment for them to realize who they are speaking to, but once they work out it is me then all is OK. I have been told by some people that I have an English accent which I find really funny. I was born in England but migrated to Australia at the age of seven and the aussie accent took over from an early age. I don't think I have regressed back to my Yorkshire accent, rather I think it is because my tongue doesn't work properly on one side.

I still haven't regained the totally independent life I crave, but I am able to undertake more activities on my own for short periods without the need for close supervision.

I am still not able to drive but I am fortunate that my husband Phil, family members and friends are willing to drive me anywhere I need to go. Phil is even willing to let me walk around shopping centres on my own in short bursts, as long as we have our mobile phones on the ready to find one another. I enjoy the brief feeling of freedom of being on own and going wherever I want without consulting someone else. I do find it tiring but I avoid crowded areas and make sure I rest whenever I need to.

Another thing I have noticed is that I can only concentrate on one thing at a time. If I am doing something and am distracted from it then I find it hard to decide which task I should be doing and can become very flustered. In the past I was always a very organized person who could do many tasks at once without feeling greatly stressed. I also have a tendency to forget what I was originally doing once distracted from it.

Twelve months ago I traveled overseas with Phil to France and Spain for a one month holiday with some friends. I have always loved traveling but was not sure how I would cope given my situation. There were times when it wasn't easy as I had to walk around a lot more and found this exhausting at times. However Phil helped me to get around and we made sure that I was able to rest and recuperate in between activities. It was very evident that I would not be able to travel on my own. Once I become fatigued I find it hard to concentrate, making decisions is almost impossible and I can become quite disorientated. This is extremely frustrating as I often traveled on my own for my work prior to my health problems. It is hard to travel with others around the same age as me and see how much different my physical life is to theirs. I keep reminding myself that I could be a lot worse and try not to let it get me down too much. But I have known what it is like to be physically active and feel clear in the head so I miss that feeling very much.

Most people I know who have had health problems have been able to get back into their normal lives after a few months but recovering from a brain injury is a much, much slower process! Despite the difficulties I enjoyed the experience of traveling overseas and we are planning another trip to the UK in June this year. I think it will be easier this time and that I will be able to be more physically active.

I am concentrating on maintaining a healthy diet and getting more exercise now. I am not able to go to a gym like I used to as there are too many obstacles and wet areas in these places. However I regularly go to a toning salon with a friend where we undertake exercises on toning beds. I can do exercises on these beds which I wouldn't be able to do on my own as I am able to do them without moving my head around too much. Gradually my muscle tone is improving and the activity is quite relaxing as well.

Phil and I also go for short walks regularly. I have lots of sedentary activities that I enjoy which takes my mind off my problems and helps me to enjoy my life despite any limitations.

I love reading, movies, emailing and using the internet, music, going out with friends plus lots of other activities. It is good to keep busy as I tend to get more depressed about my situation when I am bored and don't have any distractions.

I hope when 2009 begins that I will be able to look back on my progress over the year and find even greater improvement in my health.