I was 45 when my 3cm AN was removed in June 1997. Removal of the AN was 9 1/2 hours with a further 3 1/2 hours to seal a CSF leak 8 days later. Looking back, I was euphoric to make it through surgery, but started slowly going down hill as the problems kept coming and the recovery time just seemed to drag on. I had what I now feel was a very difficult recovery, which is still going on.
My balance and unsteadiness was greatly disturbed and I felt as if I was in a fishing dinghy rocking on a gentle sea. This sea-sick sensation occurred with even the slightest head movement and lasted for some 7 months. I walked with arms outstreched for some 5 months as I had a permanent sensation of being about to fall. I only had a few falls, either in the dark or when lifting my head.
Fatigue and tiredness was a major problem and even today I will take the opportunity to sleep from 30 to 90 minutes during the afternoons when not at work. I do on occasions resort to having a 45 minute sleep under my desk and am frazzled most evenings when I am not able to sleep during the afternoons.
I first risked driving after 2 months. My eyes took longer to move from the road to mirror and back again. I would wander quite badly within the lane and sometimes to the next lane without realising it. This was particularly bad for at least the first 9 months. My first long driving trip was after 18 months and I found the concentration extremely tiring and did not drive at night. Even today I have to take extreme care and focus my concentration while driving. Frequent stops are required. Driving distractions sometimes lead me to "not seeing" traffic lights, other traffic, pedestrians etc.
I had severe difficulty with lack of concentration, but I did not tell anyone. Then, more than a year after surgery, I saw someone to help with my facial paralysis. This lady put me through a series of tests and was able to explain why I was having quite severe mental difficulties. She also pointed out how physiotherapy would help with the balance. I completed 14 x 3 1/2 hour sessions that helped greatly.
I do think that surgeons are seriously over-optimistic, particularly when complications occur. At least mine was. Quote pre-surgery: "6 weeks over the surgery, 8 weeks back at work". I went back after 16 weeks only as a result of having no more medical leave.
Recovery has been a long process, two steps forward and one back. There were many regressions just when things seemed to be improving, which led to quite drastic mood swings. My surgeon's reply after 3 months to an email query regarding the difficulties I was having was "you had better push it". I felt that I was in some way hindering my own recovery and this led to serious anxiety and depression.
Below are the details, many are verbatim extracts from a diary; this story is to inform and ultimately empower you.
Note: All described symptoms are to the right-hand side of the head, face and body. Not all symptoms can be positively linked to the Acoustic Neuroma. Also, side effects of AN surgery vary greatly from person to person. I have been lucky; others have far greater difficulties.
2. My symptoms and the discovery of the AN
The following were my symptoms in the years preceding the diagnosis of an AN:
While experiencing the above symptoms, I heard the following from the medical profession: "there is nothing you can do about it", "learn to live with it", "it will go away" and the worst "you are imagining it". This goes on till the spring of 1997...
In March of 1997, I searched the Internet for information on tinnitus and deafness. One paragraph in 75 pages mentions the possible connection of tinnitus and loss of hearing being caused by a tumour. I did not bother to read further and got an appointment to see an ENT.
In May, I saw the ENT specialist who told me he does not have time to read my 1½ page medical summary. I mentioned the possible connection I have read about relating to a tumour, but he told me that this is unlikely, as they are very rare. He has only ever seen 3 patients with them. One hour of tests proved inconclusive. I also had 2 hours of tests with the audiologist. These tests sometimes created strange sensations, but were also inconclusive.
In addition, I had an MRI scan with contrast. The radiologist greeted me as I sit up after 50 minutes with "you have a tumour". Even though I was aware of this possibility, it still came as a major shock. The report stated that the AN "impinges on the trigeminal nerve" and measures 3 cm.
I returned to the ENT and while looking at the MRI he commented: "You really surprise me that you are still standing here and have all your faculties. This has to come out".
During an appointment with the surgeon, he told me to expect to be deaf on that side. He stressed the importance of saving the facial nerve and that was lost on me: I told him my love of music would gladly swap the facial nerve for hearing. He mentioned that I would have partial facial palsy for a while. Recovery would be six weeks and back at work after eight. He did a number of tests and showed how my facial nerve had been affected. I could not feel a pin prick on that side. In fact, there were other symptoms that I did not become aware of until after the discovery of the AN. Here is the list, as I recorded it:
3. The surgery and the CSF leak repair
The surgeon's first available surgery date was June 3rd, 10 days after our appointment. I felt confident. All questions asked were easily answered and this seemed no more involved than wisdom tooth extraction. At no time was I told of alternative treatments or differing approaches of surgery.
On June 3, I had the sterilising bath, took the pre-medication and passed out around 6:30 AM. I woke up briefly to find the anaesthetist shaving my arm. I came out of theatre around 5 PM. I was extremely groggy and disorientated as I tried to become aware of my surroundings around 11 PM that night.
We all react differently but I believe that in my case, my body was seriously impacted by the duration of the anaesthetic. A number of other AN patients I have corresponded with confirm similar feelings.
Postoperative effects were deafness, general exhaustion and a totally dead half face. All food was liquidised and I had to drink through a straw. I had no headaches. The surgeon told me that the facial nerve was intact and would take 6 weeks to recover. I just remember being VERY uncomfortable at times and occasionally requested morphine, which was put into the drip feed.
I had a CSF leak through the nose. A lumber punch was inserted and CSF drained into the bag for 24 hours. One litre drained off in this time. The tap was turned off the next evening and the line left in for another 12 hours. I still had a problem as I soon felt the pressure build up and had runs through the nose during the next 12 hours.
I was desperate to get out of ICU and on my feet. The surgeon agreed and I was unplugged and taken to the general ward after a little more than 2½ days in ICU. I was able to get up and walk a few paces without assistance although I was dizzy and off-balance. I walked as often as I could, increasing the distance slowly and then resting often.
A trip back to the theatre was arranged 8 days after surgery to seal a CSF leak. This procedure took 3½ hours. I came around quite quickly in ICU, but had the MOTHER of low-grade tension headaches right through the night. Next day, I was given lots of morphine to control the headache. I was in ICU for 1½ days and the headache started reducing only when I got back to the ward. I still had to take painkillers for a few days though.
The second anaesthetic drained me of all energy and I felt more physically battered than after the first operation and needed 2 assistants to help me walk each time during the next 6 hours before I could go it alone. Mentally I felt fine and alert.
I came out of ICU on the Friday morning and asked to be discharged on the Saturday. One side of my face was totally paralysed. No information was given regarding any form of rehabilitation therapy, or about eye care, other than to put some drops in when needed as well as drops for the nose. No clarification was given what "when needed" meant.
4. The first month after surgery
The 20-minute ride home creates strange dizzy sensations when going around corners. Walking comes slowly and I try to walk twice a day.
The "tinnitus" is louder in the deaf ear than previously and now changes pitch and volume when I move my eyes (gaze-evoked tinnitus). During the third week, I experience intermittent "tinnitus" in the good ear as well. Fortunately, this goes away.
Noise is extremely irritating. Trying to hear a conversation above the hub-hub of general noise is difficult e.g.: street noise, restaurant etc. Locating sound direction is impossible.
Reading or watching television are very difficult during the first 5 weeks. My vision is blurred and double. Light, especially sunlight is far brighter than previously. (This eventually eased yet I still squint in sunlight and have to close the affected eye.)
Short-term memory is an embarrassing problem. I just forget from moment to moment. Even while speaking I suddenly lose the train of thought.
My head feels under pressure and I do everything very calmly and slowly. Any rise in blood pressure causes a dull ache and my head seems to want to burst. This lasts for about 10 weeks.
I have difficulty breathing through one nostril and it always seems blocked.
5. Months 2 and 3 (from the diary)
Week 5 - An eye infection develops and eventually infects both eyes with general facial swelling. This continues on and off for 3 ½ months.
Week 7 - My first check-up with the surgeon who immediately arranges for me to see an ophthalmic specialist; prescribes anti-depressants and arranges further sick leave for another month. The ophthalmic specialist explains "dry eye" and how my eye should be taped closed.
Week 8 - I drive for the first time and find that I have to go slowly. It takes much longer for my eyes to focus from the road to the mirror and back again. I tend to wander around the lane. Turning my head completely disorientates me.
Week 9 - Dizziness and balance are a big problem especially when tired. I felt as if I was in a fishing dinghy rocking on a gentle sea. This seasick sensation occurred with even the slightest head movement and lasted for some 7 months. I have learned not to turn my head, bend over or get up quickly. This helps to control the dizziness. Fatigue and tiredness necessitate sleeping every afternoon.
Facial movement, speaking and eating become more difficult. The surgeon says that this can be a normal pattern as the swelling in the head reduces.
Week 12 I email the surgeon explaining my difficulties and indicate that it would not be possible to get back to work. He agrees and comments "you better push it". This infuriates me as I am doing everything I am told which is very little.
Both eyes are swollen and infected. Each visit to the ophthalmic specialist results in a new prescription to try.
I decide to try the world of alternate medicine to see if I can get any relief. I see a homeopath that gives me a natural antibiotic in drop form to take every 3 hours for a day and 3 times a day thereafter. I start to perspire freely and go to bed. All swelling recedes in 2 days. My eyes are still red and reading is difficult. He also gave me an immune system booster in drop form.
I start a course of acupuncture. This does seem to help my balance and I do not seem to be bumping into walls as frequently, although I still walk with outstretched arms as a security.
6. Returning to work (from the diary)
Week 17 (September 30) Back to work after 16 weeks. I do not have the energy but my sick leave has just about run out. It is very difficult and I cannot concentrate. My face droops on the affected side. I sleep under my desk during lunch times as I can hardly keep my eyes open. I have to ask some people their names as I have just forgotten them. I refresh my memory by periodically reading the company telephone list.
I decide to try the habituation therapy for "tinnitus" and acquire a masker, which I use for 12 months. It helps, as I learn to switch off from the "tinnitus", except when tired.
Week 20 My eye becomes infected again. I go to a different ophthalmic specialist. I described the story and show him the 7 different prescribed eye medications I have used thus far. He examines me and pronounces the problem as simple. The affected eye does not close completely when I blink. A portion of the eye is dry and irritated. He prescribes a preservative-free drop "Celluvisc". This fixes the problem and I use it for about 5 weeks.
I undertook my first flight of 90 minutes after 5 months with no difficulty.
Month 7 (February'98) The feelings of dizziness start to disappear.
Month 9 (April'98) I have a follow-up MRI scan and its clear. The next scan is due in 2 years time.
Month 10 (May'98) My eyes have settled down and I go for a thorough eye examination. Physically all is well, just my spectacle prescription requires changing and bifocals are now required for the first time.
I was concerned about the difficulty concentrating: even reading was very difficult.
I contacted a physiotherapist who was recommended by a friend. She runs a centre for people who have suffered brain damage from road accidents and strokes. The sole purpose was to see if she could help with the facial palsy. She explained how tumour pressure, long anaesthetics and possible touching of the brain during surgery may cause certain mental anomalies. Furthermore, she described how the quadrants of the brain have different symptoms.
I did not accept these explanations; I saw myself having only one problem, and that was lack of concentration. But she made me do some 60 minutes of tests, and here are some examples of the problems that were uncovered:
The list of difficulties just went on and I sunk into the valley of despair. I was taking more than twice as long as the average person for those tests which I could do. Each of these difficulties was explained and correlated into my day to day life. I was told there is no way of estimating how much of the mental capacity could be regained or how long it would take.
The news of these problems shocked me more than the physical effects of surgery. I used to be above average at sports (athletics, soccer) with a gift for eye hand co-ordination (snooker, pool, darts, table tennis). Also, I had an IQ of 140 and blessed with an outstanding memory; professionally, I have been involved with the design and development of computer software and systems.
Since that first visit, I have had 14 sessions of physiotherapy lasting 3½ hours each. Each session is divided into four activity groupings:
I was able to stand on one leg (shakily) or on a chair within 3 sessions. I started playing chess with my sons each day and I was able to process 2 moves ahead in about 10 days. Playing trivial pursuit helped as well. I can fill you in with the type of exercises if you wish to know.
8. May 1999
My greatest difficulty now is a serious reduction in short term memory, lack of concentration, combined with great difficulties trying to retain and process information. I still have frustrating problems while trying to carry out a mental and physical function like writing. My mind runs ahead very clearly with thoughts and my hands stutter slowly across the keyboard making many mistakes. Grammatical errors, incorrect or omitted words and many dyslexic errors are frequent occurrences. It just takes so much longer to get my thoughts down.
Exercise is important. I walk briskly (cannot run) for 45 minutes a day some 5 days a week and am following a supervised gym program for 45 to 90 minutes a session, 3 or 4 times a week. Included is some exercise in the swimming pool. This further helps my balance. It also greatly improves the ability to deal with stress.
My difficulties have impacted my job performance. My company advises in June that they wish to have me medically evaluated and duly make an appointment for me to see a neurologist.
9. Neuropsychological testing
I see the neurologist a number of times and he is so helpful explaining what he sees on my two previous scans that I had not been informed about. To quote him: "Surgeons want to cut, I want to talk".
I am sent to a neuro-psychologist for five hours of psychometric testing. A two-hour feedback session is arranged and I am briefed on each test and its outcome. I am either in the top 10% of the population or in the 20% to 25% mark for those tests I struggle with. Fine motor co-ordination has affected both hands. My dominant right hand is fairly severe. I understand for the first time why I make so many errors on the keyboard. The right hand responds somewhat slower than the left.
An MRI is arranged on a new machine that shows far more detail than my previous two scans which are somewhat fuzzy. The neurologist points out two areas of the brain that are dark and have "died". I have communicating hydrocephalus (pressure). Severe brain stem compression. The right-hand side sinus / nasal passages are all blocked.Parts of the neurologist's report read:
"His major symptoms are fatigue, poor concentration, the inability to organise and great difficulty in learning new tasks.
Follow-up MRI showed no residual tumour, but still dilated ventricles with communicating hydrocephalus.
Difficulty with motor co-ordination, sustained concentration, sequencing, initiation, word finding, immediate auditory memory for words, auditory new learning and delayed visual recall. Recall testing worsened with complex data. He would struggle to maintain his present duties at work.
He would also unlikely be able to learn any new job description. This picture is mostly due to the diffuse brain injury caused by the hydrocephalus. This will not improve.
I think he is permanently unfit for his present duty and unlikely to cope with any other job".
10. Where am I now? (December 1999)
I was informed on November 23 that I am being retired with permanent disability. I believe that I WILL retrain my brain to cope with most of what I have lost in two years.
11. Some tips
1. Find out as much as you can about the "AN" and various procedures available. But, be warned: You may suffer information overload. You may probably see all the worst side effects. Take care - we are all different, and so are surgeons and their teams. Do NOT accept anyone elses experiences and imagine that this will happen to you.
2. There are a number of other successful non-surgical treatments available. I urge you to explore these before deciding on a micro-surgical approach.
3. If surgery is your option, find out details of the key members of the team:
- How may "ANs" has the surgeon removed?
- How many long anaesthetics has the anaesthetist performed?
- How many times has the team worked together?
- Does the hospital have a regular neurosurgery unit?
You must feel 100% confident in the team that you hand over to.
4. If you have AN surgery, give your body time to recover from this major shock. It is a new beginning. Time to slow down and smell the roses.
5. Would I have done anything differently? Yes, I would have taken more time off to listen to music and be with myself beforehand.
6. Support from those around you is essential. Unfortunately, I had very little. It was a lone struggle.
Feel free to ask questions;
Melvyn Fagrew <melvyn
Cape Town, South Africa
(6/03) I descended into the depths of everything but have finally come out with peace, acceptance and serenity.©
To Melvyn's entry in Patient Directory
Last Edited: Wednesday, August 13, 2003