An Acoustic Neuroma is the result of proliferation of the Schwann cells covering the acoustic nerve, and is generally slow growing and benign. If the growth is unrestricted, the result is death. A symptom is a one sided hearing loss, as commonly found by difficulty in hearing the telephone, on one side. Thus any symptom of this kind should be taken seriously. My other symptom was nausea, since the neuroma affects the vestibular system. I was occasionally throwing up my dinner.
Two standard treatments are surgery, and radiation. In 1999, my consultant at the Walton Centre, Liverpool, explained the choice and I remarked: `You are not making a good case for surgery.' to which he said: `That is the way it is.' On the other hand, he explained, radiation treatment has zero risk of death. (I do not explain here the two possible types of radiation treatment.)
The neuroma was 3.1cm, as shown by an MRI. The average growth rate for these neuromas is 2mm per year. I have an impression that the neuroma had hindered aspects of my work since the mid 1990s at least.
I was treated by Stereotactic Radiation at the Centre at the Royal Hallamshire Hospital, Sheffield, in February, 2000, staying in hospital two nights. I had an immediate worsening of the nausea, but it was explained that this was not due to the radiation, and prescribed (but standard) travel sickness pills kept this at bay. However, over the next year or so I lost a lot of weight (not necessarily a bad thing). I gave up these pills in 2001.
In October, 2000, I noticed a slight double vision, and this gradually got worse. I failed to report this to the Walton Centre, which was a mistake. Finally I saw an ophthalmologist in February, 2001, who reported severe pappilloedema to the Walton Centre, and I was immediately called in for an operation.
It seems that it is not uncommon for a neuroma to release some protein and in this or some other way cause a partial blockage to the circulation of the cerebral spinal fluid, resulting in hydrocephalus. The treatment for this has been the use of shunts, but now there is the possibility of a Third Ventriculostomy, which, when it is suitable, seems to be the best option. This was done at the Walton Centre in February, 2001. Although I was seriously ill at the time, after the operation I noticed an immediate improvement, but was still weak.
Since that time there has been a slow but continual recovery, which was helped by vestibular rehabilitation exercises suggested by the Physiotherapy Department at Glan Clwyd Hospital. In Feb 2001, the double vision correction had a Fresnel lense level 20. At the start of 2003, it was down to 6, and now I use no correction. The correction was essential to be able to drive, which I have continued to do, as is necessary in this rural area. Visits to the ophthalmologist in October, 2003, and March 2004, revealed no problems.
My ability to walk and balance had also become low. However, I noted a recommendation by a guru of vestibular rehabilitation: `When you feel peculiar, it is tempting to lie down until it passes away. However, this is the opposite of what you should do.' So the aim has been to challenge the system to accommodate to the one sided nature of the new situation. This is done by repeated small balance exercises, in a safe manner. On trying to stand upright, on a cushion, and with the eyes closed, the muscles in the leg send messages to the brain, which then go back to the muscles confused, since they have been based on the vestibular system being two sided, which is no longer the case. Consequently, rippling sensations are felt in the leg muscles. Improvement is only gradual. Care must be taken to avoid dangerous balance situations. But the brain has plasticity, and gradually learns to deal appropriately with the situation, if one continues to do regular balance exercises. There are no shortcuts! I believe somewhat in the importance of rythmical exercises, so like to walk swinging my arms well, to involve the whole body. This also improves muscle tone. (See also the site by Jan Abas on dealing with Parkinson's disease.)
One exercise was to stand for one minute with one foot in front of the other. I found this difficult, and tried it standing in a doorway, so as not to fall, and with the legs somewhat apart so that I could keep upright for one minute. Another exercise was walking, and for six months or more I used a stick.
I can now do a brisk hour walk over uneven footpaths next to the beach, and can replace a lightbulb! The pappilloedema has long gone, and the MRI in July 2002 showed some necrosis of the neuroma. An MRI in July 2003 showed satisfactory progress and the next MRI is put for 2005.
There is a slight difference between sensations on the left and right hand of the face, and occasional twinges on the left side of the face which I first attributed to tooth problems, but according to the consultant can be due to problems with the nerve and are not uncommon. Now I know the cause I just ignore them.
(For the terms you do not understand, and for more information, do web searches!)
Anyone in the UK with an Acoustic Neuroma diagnosis should contact BANA (British Acoustic Neuroma Association).
Many thanks to consultants at the Walton Centre, Liverpool; to the Centre for Stereotactic Radiosurgery, Royal Hallamshire Hospital, Sheffield; and the Ophthalmology Clinic, Colwyn Bay.
September 23, 2003
Update: 11 January, 2005 This article was intended to be very positive: I had better say this as one correspondent seemed to be dismayed! My eyes are fine (except for the usual problems due to aging!) and I feel quite fit. The consultant ophthalmologist gave a positive report in December, 2004. So the increasing problems due to the neuroma have been well dealt with, it seems. Some people remark that I look better than I had done for years. (See the third paragraph of the article.)
October 3, 2007
I travelled to Walton Centre for an MRI in July followed by a consultation in August. All seemd to going fine, and the consultant suggested he would give one more MRI in 2009 and then discharge me if that seemed well.
There is now a controversy over forcing N. Wales patients to travel to Swansea in order to supply enough patients to keep open that neurosurgery unit. If one put that idea in a novel it would be regarded as an absurd libel on the S. Wales medical and political establishment!
August 21, 2009
The further MRI and consultation in July/August 2009 showed that the neuroma is slightly decreasing and in any case has suffered necrosis since the treatment in 2000. The consultant wishes to see me in 2011 to complete the 10 year period sdince the treatment.
I mention also that I suffered a stroke in September, 2006, affecting my left side.
As a result of the tests I was put on hypertension pills.
I seemed to recover reasonably but in early 2007 I began to suffer mobility problems which gradually got worse, and I was getting around with sticks.
The situation was given some hope by exercises prescribed by a local physiotherapist to treat weakness and mobility of the lower spine. These exercises illustrated how weak the muscles were.
I also decided to take up regular swimming at a local hotel pool. Over the last two years this has made a great difference, and the increased strength is easily measured by the number of 15m lengths I can do (now 26) and the number of strokes to do a length in the crawl mode.
In fact the consultant at the Walton was surprised I could now do so many lengths. The damage from the stroke was shown up in the MRI in 2007.
In 2007 I noticed that I could not rotate my left leg, and so had to start exercises to bring these muscles back to life.
I now notice that I have not been using my legs fully in swimming and so have started swimming exercises with legs only to get these muscles up to strength. This season I have also been better at the crown bowls club, and in the winter I have been going regularly to Tai Chi classes.
The increased strength enabled me to go to the PSSL in Cambridge in April, 2009, and to participate fully in the Askloster Seminar in July 2009.
It seems to me that rehabilitation from strokes should start from the assumption that all the muscle groups on the affected side need specific exercises to bring them back into action, and then up to normal strength; my increasing difficulty in walking in 2007 could well have been due to poor gait as a result of the complete weakness of specific muscle groups, such as the rotational ones.
March 9, 2014
On March 4 I went to the Walton Centre for a consultation, and on the basis of MRIs in June in 2012, 2013 they have decided that the neuroms is continuing to decrease, and is unlikely to cause further trouble, so they are not going to ask for a furthr scan. The hydrocephalus might recurr, due to a further blockage, and I was given names to contact in case I do get headache or double vision.
My regular swimming is 360 meteres, with accompanying exercises to deal with osteoarthritis in the right knee. I swim about 10 lengths of 15 metres without taking a breath, as I feel the resulting increase in heart rate is beneficial.
I occasionlly go to meetings, and give seminars if invited; in June I go to a conference in Paris.
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