Neuro-surgery for epilepsy cause and effects. PART ONE. THE RUN UP TO SURGERY, SURGERY & HOSPITAL ERA.
Upto May 2006.
This is being written not with the intent of putting anyone off having surgery for epilepsy but more to inform anyone who wishes to know about what may (or may not as is the case with most of the experiences listed) occur. Surgery has its risks as with anything but I would say that the risks are worth taking because of the quality of life that finally comes. Also if there are any technical mistakes then apologies but I am not a medical student. What has become obvious is that a good surgeon is a pre-requisite to positive outcomes and afterwards having a supportive network of friends and family is a necessity due to the things that require help carrying out during recovery which, as I have discovered through experience, will take six months to become optimal.
I started having seizures at the age of seven and after 43 years of absences, out of the blue, I was given the opportunity last year to maybe change my life again irreversibly. A forward thinking and looking Neurologist suggested surgery was a possibility if all tests confirmed this and asked if I would consider it? The problem with temporal lobe epilepsy is that it is not well controlled with drugs and the one of the current ones, specifically Primidone or Mysoline, has long term side-effects like disorientation. Unfortunately any new drug I have tried either did not work or had dire side-effects this being so I believe he felt that it was the best option also if it worked it would save the national health service a great deal of money due to the cost of the drugs. Lamactal or Lamotrigen being the other medication is very expensive and the cheaper generic variety caused a rather untimely effect namely losing the ability to walk whilst crossing a road.
After some thought and having thus discovered that Temporal Lobe Epilepsy is not well controlled by drugs I said "Yes" and so the long road to the operation occurred.
I had video telemetry to find the focal point of the seizures to confirm that it was from the Temporal Lobe. This entailed a two day stay in hospital where I had to have as many seizures as possible over this period whilst being monitored. The only privacy was a toilet and wash basin in an adjoining room. Results of the EEG's showed the scar on the right Temporal Lobe.
I then had MRI scans which unfortunately showed up abnormal white matter. Consequently not only did I have to have psychological assessments prior to surgery but I had to have memory tests to discover how impaired my short term memory actually was at that point.
(The former was to find out if I was a suitable candidate to stop having seizures after them being part of my life for so long. I understand that some people find it hard to cope when they don't have seizures again after surgery.)
After the MRI results I looked into the subject of white matter and my Essential Oil supplier sent me a remarkable article on this because I could find nothing comprehensively written on the subject. I had no idea what white matter did and it was an eye opener because you always think of the brain being little grey cells whereas it is a very incredible piece of engineering and evolution.
The Memory tests gave bad results. Auditory memory poor and visual memory impaired which surprised me as I would forget the price of something when told or a meeting time within seconds rather than forgetting a face. Also I suffer with de ja vu a lot but that seems to be quite normal for sufferes of temporal lobe epilepsy. I used to have a brilliant memory when I worked with figures and routine information so had not noticed this deficit but there are several types of memory. The white matter was altered I think due to having Meningitis as a baby although I know that is what actually caused the lesion on the brain which triggered the seizures so I am not sure about white matter abnormalities.
It was in the hippocampus where Alzheimer's disease strikes and they were a little concerned that mine was thus changed because I was only 49 years old at that time.
I passed the intelligence test with flying colours and as the other criteria was passed I was able to proceed on the pathway to surgery but as they were a little worried about me losing more short-term memory following surgery I was offered a WADA test. This would tell how much would be lost but as this test itself had some risks I decided against it and to just go for surgery. The Neurologist made me smile as he said, "You could lose more memory and go from A to B then not know why you went there or, of course, you could die on the operating table".
The next step was an appointment with the Neurosurgeon wherein he gave me a brief explanation of the procedure. He explained that they would remove a piece of bone to access the temporal lobe then replace it and the scar would be covered by my hair. I thought I would have to have it shaved off but the surgeon said that it would be best to keep the hair for camouflage.
The surgeon also said that with waiting lists it would be about April 06 but my friend who had been in the room during the consultation said that it was more likely to be August. My friend works in EEG for the Neurology department and has been a tower of strength to me.
Time went by and the appointment arrived stating 24th April 2006. This meant we would not get our Spring holiday but we had been to ..:namespace prefix = st1 ns = "urn:schemas-microsoft-com:office:smarttags" />India in February so it was not going to be a hardship. Flying following surgery is not recommended for at least four to five months due to the air which enters the skull when the bone is removed. My friend explained that it would be uncomfortable with this air pocket or bubble during a pressurized flight. This air pocket does dissipate after two months. A doctor did mention that following head injuries abroad most people are flown straight home to be treated and I surmise that it is safe to fly but uncomfortable just after surgery.
I went with my husband and friends for a pre-op curry in case it was the last. Also I tried to get a point over to a professor in London about olfaction and Essential Oils in case I was not compos mentis afterwards. This professor claimed that inhaling oils had no effects on the brain but I pointed out that they had stopped many of my seizures in their tracks providing I smelled the oils before they had reached the point of no return. He was rather condescending and I have since found several experiments that prove that Essential Oils cross the blood/brain barrier when inhaled. I gave up as he did not reply to my last correspondence stating that the smell of sage smudge sticks had induced the worst seizure my friend had witnessed. Sage Essential oil induces fits but we had no idea that Smudge stick would do the same but they were rather potent thinking about it. This may seem irrelevant but later will appear in context as the Professor said it was the Limbic System that actually worked in respect of stopping the seizures because it was a smell that must have had good associations so stopped the seizures on a feel good basis prior to reaching the trigger point of no return.
My essential Oil supplier is a font of all wisdom and for some reason I actually struggled through his April Newsletter and read about Gingko Bilboa being a blood thinner therefore is good for the circulation in the brain. I decided that if you had to stop taking warfarin and other blood thinning medication prior to surgery then it would be best to stop taking Gingko too. At the MOT, which is given to everyone prior to major surgery these days, I told the Nurse about the Gingko and she said that Vitamin E came into this category too so I had to stop taking that. The MOT was passed at 100% fitness rate.
My first night in hospital arrived and I had a very sleepless one due not to worry but to a truculent patient who could not sleep because of the phones ringing and general activity in the corridor from the nursing station. Not satisfied with sitting there in silence she spent the whole night yelling out for everyone to "Shut UP and stop making a noise" or "Answer the phone."
Prior to bed time a young doctor came around and said he needed to do some things to save time in the morning. He got a razor and cut off a long swathe of hair my hair then he stuck markers on my skull. I looked like Hiawatha with these huge white beads on my head. I gathered that these were to mark out where the cuts would be.
The next morning I had to sign consent forms and then had to shower and have the pre-op and anaesthetic. I remember going down for another MRI scan and having to wait ages in a freezing corridor. It did not help that I was very scantily dressed in a theatre gown. I do not remember anything after that until coming around on the IC ward. Being rather out of it I did not wish a visitor as it had been a four hour session in surgery. I was just glad it was all over.
I was hooked up to a catheter and the surgeon was concerned because of the risk of infection and wanted it removed ASAP. I also had what could only be classed as a brain drain because I had a tube from my head draining into a bottle. The catheter went and I got out of bed feeling great but a little tender which was to be expected. They were pleased with this quick progress because being 49 they were not expecting such rapid progress.
I did some Suduko puzzles and was pleased to find that my cognitive function had not been affected. All went well and I was getting around, eating well and drinking plenty which is conducive to being released from hospital and one day as I was sitting on the ladies toilets heaving and straining when my nose burst forth all over the floor with blood. There is no delicate way of putting that. It was a little bit of a surprise to say the least and afterwards I was given a pot to catch any subsequent bleeds in order that it could be analysed. At this time I seemed to have bats floating across the eyes rather than floaters and it was very disconcerting.
The surgeon came around and explained that the membrane surrounding the brain called the Dura had a slight tear in and that Cerebral Spinal Fluid (CSF) was leaking out. (They obviously have to cut through the Dura to get to the brain during the procedure.) He then went onto explain that I had a hole in the front of my skull and that it was also porous there. He also said that he hand only seen one before in his 22 years of being a surgeon. Apparently I was born with this hole and normally when people have holes or porous skulls they are at the back and not the front where mine was. I do not know the technical name for this or how many other people have had this condition. The CSF was leaking through this hole to exit via the nose. I took this in happily but had no idea of the headaches that were about to begin.
Every time I sat upright from lying down it was just like someone had hit me on the forehead with a sledge hammer. A Doctor said that I would have to raise myself very slowly as these were pressure headaches which occurred when pressure changed and from the pressure of the fluid leaking within. He said that they had tried filling the hole in my skull during the surgery but as there was so much blood it was not possible to do it.
I was in hospital over a period when there was a morphine shortage so that was not a great help on the pain control front.
The beds were electric so at least I could raise myself slowly. The physiotherapist was sad at this setback but we managed to walk around if I got up slowly. They were hoping the tear would repair itself and thus I was kept in for longer. It was the most painful time of my life. I was given anti-biotics in order that infection would not take hold because as the Doctor said "You know what happened when you got Meningitis" which was fair enough. For some reason I was given steroids too.
The next knock back was the fitting of a lumbar drain to relieve the build up of pressure in the head due to the leak. That was a messy procedure and an intern did it whilst being instructed by the Doctor. The Doctor said it was easy but it all depended on the patient. I was good but the blood on the sheet was phenomenal and so the sheets were changed again!
The drain was emptied into a stationary bottle and this was set at a height in order that it did not drain off the CSF too quickly but just enough to ease the pressure. Each time I had to get up I needed to have the drain level raised so this was a palaver and at this point I think a catheter would have been easier. However, with the double risk of infection then with one fitted, they said "No."
I walked around with the blood catching pot and had a huge leak into it. The doctor thought that I had topped it up with water! I said nothing – as if. I just wanted to get home. The CSF tasted awful just like you had been sucking on an iron bar but that was probably the haem. It was unpleasant and not a taste you easily forget. I had a leak prior to this in the night and the doctor asked what it tasted like. All I could say was that it was acrid because that is all I could remember of it at the time and I was half asleep anyway.
The tests came back positive for CSF and as it should actually be clear it was a puzzle that there was also blood. This caused further delay and so I suffered but happily I had no leaks for a while, just the headaches.
After surgery 11 days elapsed before I was allowed to wash my hair. The skull was however still slightly tender at five months.
As there was no leak for a few days the Doctors said I could go home. The physiotherapist was doubtful because she used to watch me get up to get out of bed. It was very slowly still and she wondered how I would cope at home without an electric bed.
I found it easier to eat lying down because it was such a palaver getting upright with the lumbar drain attached as it had to be adjusted all the time so I became good at eating in this manner in the end. Fortunately there was a thoughtful tea man who always gave me a beaker with a straw and cool milky tea. However I did go off food eventually and they were concerned but I pointed out that I was eating well until the drain insertion. The afternoon before I was being allowed home I had another leak which meant that they would have to do more surgery to repair the tear and fill the hole in the skull at the same time.
When I think about it I was lucky to have had this hole in the head because otherwise the leak would have gone unnoticed and I would just have had some exceptionally bad headaches.
The surgery was put off until the end of the day and it was not known until they actually took me down whether I was going to have it because it had been a long day in theatre for them. At 4pm I was on my way to theatre again. Being late in the day I was bit perturbed as brain surgery requires much concentration although they did not have a great deal to do this time. I had to sign another consent form.
This session was over quite quickly and I was wheeled back to I.C. Here I had a huge nose bleed. I asked a young nurse to catch some in a pot for testing which she did. The Sister said "You did this last time you were in my ward" and I told her that I did not remember – apparently I did and it is unusual because I never suffer with nosebleeds. It explained why the Doctors kept asking me before whether I was prone to nose bleeds.
I slept well and next morning climbed out of bed as there was no catheter, brain drain or lumbar drain. I went for a shower and bumped into the Surgeon. He was so pleased to see me up and asked whether they had put a lumbar drain in. I told him that they hadn't but that they had come around earlier wanting to put one in. The surgeon said that if they had not already inserted one then there was no point now. I asked him to pass this on to Sister because I did not want a drain and also told him about the leak in the night and that the pot was by the bedside all sealed. He told Sister and also walked off with the blood pot so I went for a shower quite happy.
I had a good day and the bandages were not as extensive as those from the first op where they did the envelope insertion because this time they just used the hairline scar to enter and folded the bone back to stitch the Dura. According to the Anaesthetist they filled the hole with a form of resin similar to human tissue and it sets like bone thus plugging the hole although it would not have mattered about that as the repaired Dura was more of a worry to me then. This incision was resealed using sutures as staples would not hold a pre-cut incision properly.
Two days after this second procedure I was told I could go home and I was so relieved that I could have kissed the Doctor but as he was from the Middle East (I assume) I thought he would be offended. I did tell him this and he shook his head and grinned. He told me that if I had any sort of bleed then I was to go back into hospital immediately and I promised that I would.
I had been up and about a lot since the operation on Monday and the physiotherapist hearing of my imminent departure informed me that I had to pass the stair test. She took me to the stairwell and we had to walk through an area frequented by smokers. It stank of stale smoke and was quite nauseating.
The Temporal Lobe, being part of the Limbic System, controls the Olfactory System and the surgery altered my sense of smell in respect of smoke. It was not a smell I liked previously but it never nauseated me before.
During my stay in hospital I had vital signs tests every few hours which was not conducive to getting rest but I suppose showed that all was well and proved that my mind had not been affected. For instance I had to say where I was and what day it was as well as naming the prime Minster. They also shone a light into the pupils each time to see their reaction.
Prior to departure an intern gave me a basic field test to find out is my peripheral vision had been affected. He wiggled his fingers at the corners of my eyes and I had to say when I could see the wiggle. This test was fine.
As I had passed the ‘stairs’ test I just needed to phone home then get a stitch removed from the lumbar drain scar and have the bandage changed. With this done I dressed, packed and bade "Farewell" to the lovely nurses. I had a lift home courtesy of a dear friend and he drove very carefully because my head was still sore from the lack of CSF surrounding the brain.
