Part Two. Home again after Surgery. A rather perplexing time and the start of a learning curve.
From May 2006 to Jan 2007
Once home I had a meal, a glass of red wine and pain killers then slept for England and stayed flat on my back mostly for about five days as it felt like my brain was sitting on a bed of rocks every time I moved around. I had been told that the CSF would replenish itself quickly and movement hastened its refilling, as far as I could make out from the Internet. I still had headaches and took painkillers for three weeks. As they gave me weird dreams I plucked up the courage at the end of May, well after the sutures had been removed by the District Nurse, to apply a blend of Essential Oils. I was dubious about this at first but as the skin had knitted fully I decided it would cause no ill-effects. Fortunately it killed the pain. I had great discomfort over a small dented area on the forehead which was presumably caused by the skin being taut over the indentation. I later discovered, much later I might add, that during the second operation they pulled the skin off the forehead to get to the bone. They cut away a piece of muscle too in order to get to bare bone to fill the hole and this lack of muscle had caused the indentation. I did not know this at the time, as I said, and thought I had a dent in the actual bone.
After the first week I started moving about more as the CSF had filled, not completely but enough to be able to wander around the house. A further week passed and I started going light headed. This was not on rising but after I had been upright for a few hours. Consequently when I wanted to go for a walk I needed someone to hold onto for the times when my head went dizzy. This went on for quite a while and I discovered courtesy of an Alexandra Technique practitioner that the spine supplies the brain with oxygen as well as did arteries etc. I rather hoped they had not severed my carotid artery which runs up the side of the head and was relieved to read the information about the spine after which I made sure that I had good posture when sitting and standing.
My lumbar area actually felt fused and during the second operation they had tried to alter the CSF levels and had put needles into the spine. I gather it did not work because the doctor said that it was like trying to put grout in between tiles or some such analogy. They had to do this when I was at an angle (I assume) because the needle marks were slightly off the line of the original lumber drain incision. I just hoped this was normal and that it would return to normal but my spine felt fused for several months nonetheless.
My first real outing in a car was to a pub and undertaken very slowly. I have never felt so strange in all my life. This is probably because I had been in hospital for 17 days instead of the usual five and then flat on my back for another seven - 25 days being indoors is rather conducive to panic attacks. The noise in the pub seemed unbelievable as my head felt like an empty chamber but I survived the night although I must have looked awful.
The next few days I did get out walking accompanied and a week after my first outing I was taken to Southwell racecourse. The drive was a speedy one and I noticed then that my eyes were not focussing together. Consequently the passing undergrowth out of the corner of my right eye made me feel seasick. Actually I could not describe what it felt like but I found closing the right eye stopped this. My next ordeal came when climbing down the stand steps. I went up them OK but looking down whilst climbing down them was very disorientation and luckily I had an arm to hang onto so made it to back safely.
I gather from my A&P book and the Internet that the optic nerve is very close to the site of the operation and can be affected by this. This took six weeks to return to normal.
During this outing it also became apparent that my eyes were photo-sensitive. At home during the first week I could not stand the bedroom light shining in my eyes but at least it had progressed onto only sun light bothering the pupil. It took three months for the light sensitivity to cease.
My jaw on the right side at ear level was incredibly tender because they had to cut through the jaw muscle by the ear to do the operation. During the first operation, as mentioned by the Surgeon, they actually removed a complete piece of bone. It went from the centre of the forehead down the hairline, over the back of the ear and back up to the centre parting then down to the hairline. They also cut along the centre parting back to the crown of the head then did a cut a of about two inches either side at right angles to the parting line forming a T shape. This was all stapled together as well as having dissolving stitches after the first operation but during the second procedure they used sutures because staples would not have held together for some reason.
My cheek swelled when I chewed food or when I moved my right arm about because the cranial muscles specifically those over the temporal area connect to the neck, jaw etc. The swelling was most uncomfortable because it used to dig into the arm of my glasses.
Some of the things which caused the swelling included hanging washing on the line, sitting at the computer typing, lifting things and washing the dishes. Most things could be done with the left hand but ironing is not easy - it took too long thus and even so the cranial/neck muscles all interlink which caused discomfort over the scalp and face.
On enquiring about this problem I was told that the swelling should cease after three months. It did get better but even after four months it still swelled when I did work or for instance carried a handbag on my shoulder for extended times or lifting saucepans and buckets of water.
Having enquired about the jaw because I could only open my mouth about two finger widths I was told it took six months to return to normal. It was much better after five months and indeed back to normal by six months.
My mouth did not seem to be watering properly on the right-hand side and I gather there are gustatory glands in the cheeks which I assume had been affected due to the nerves being cut during surgery. It is also getting better in respect of saliva production.
At the three-month follow up the surgeon examined my skull and informed me that it was symmetrical. He would see me in a year's time. The Surgeon gave me permission to fly again and said that all the wounds had completely healed also that I could use anything on them in the way of shampoo etc. I explained about using oils and he said that was OK. I have an appointment again with him in a Year's time.
The dizziness went eventually after two months for which I was eternally grateful. It occurred after I had purchased a magnet therapy machine and used it for a day. Not wishing to take pain killers and worrying about the risk of sensitisation with constantly using Essential Oils I looked for another form of pain relief. I looked into Ayurvedic medicine but never had a reply from them. The English Herbalist Dr. Jan de Vries was most helpful when I enquired about assistance with healing and pain relief. However just after I had written to him I came across the advertisement for the magnet therapy machine and have not looked back. It was difficult putting oil into the hair all the time as touching the head was not pleasurable and still isn't because it is quite tender at times when the skin is taut from exercise.
I enquired as to how long it would be before I could have cranial-sacral therapy in the hope that at that time it would relieve the tension around the skull. The surgeon informed me that it would be six months before manipulations were advisable. This tied in with the information I gained for a Plastic Surgeon in America who said that it took six months for a bone harvest to completely return to full integrity. There is not much information on the Internet or wasn't because I could not find it until I had a discussion with a Doctor one day on a train. He explained about the bone repairing itself and that cranial bone repaired differently to long bones because it was nourished from within by the Dura and without by the skin. I looked at the Website he gave me and found the information about bone regeneration and much more. The Website is http://www.medscape.com/medscapetoday. I had to register and did so which brought a wealth of information to hand after months of fruitless searches.
I still do not know what caused the dizziness and went through many stages trying to fathom out what it was. When I thought there was a dent in the bone I searched and came across one that gave information about malformed craniums and faces that caused many problems in respect of circulation to the brain. I emailed an Italian paediatrician asking his advice and never had a reply which is as well because it was not a dented bone anyway. I am determined to find out what the cause was though.
The magnet therapy machine worked on the principle of pulsing magnets which actually relieve pain and promotes cell renewal. I used the 3 KHz setting which is compatible for the brainwaves as there are four setting the highest being 20 KHz. Magnets affect the polarity of the ions in blood so any pain will alter the cells and the magnets draw them back to the correct polarity thus alleviating pain.
It was a long time before I could bend forward and touch my toes due to the pressure put on the Dura in this inverted position. The surgeon said that the brain had the largest supply of blood in comparison to any other organ so it meant that it healed quickly. This explained the pressure caused when bending over which was not advised by the Neurology department until the Dura was fully knitted. One month after the operation I could bend forward but with care then
The scar down the cheek would pull painfully when I overexerted the muscles so at least I knew when to stop working. However, by August this had stopped pulling and the feeling that someone was running a Stanley knife down the scar moved from the cheek area to the rear of the bone removed behind the ear. This was great but unfortunately the area behind the ear up to the centre of the skull did not actually start reacting to pressure or exertion until after the event. As I lost that early warning signal I had to learn to pace myself or suffer several days afterwards with a tight skull, and swollen face again. I find also that if I overdo it that I get exhausted several days later and have to completely rest or do very little anyway to recover.
In October the feeling had virtually gone altogether thus work has resumed as normal.
My sinuses finally eased off and only require an occasional drain when a headache occurs on the forehead which is rare now.
The body's temperature control or hot/cold perception has been altered consequently in May when it was freezing and wet I felt cold around the scar area. It was like a cold finger being dragged over the patch. When I went outdoors I wore a headscarf to keep warm. During this cold spell I woke in the night with a frozen head sand was unable to get to sleep again. I tried wrapping a towel around the head to keep warm as the shower cap rather dug in on the scar line at the front. This helped, so for days I went to bed thus and had the duvet over my face too. My sinuses did not help matters as the main one must have become blocked although fortunately it never became infected. Once we purchased a hat for wearing in bed problem of waking during the night ceased.
When we went out in the evenings I wore a scarf and carried a spare hat in case it got really cold as it often did. Also a scarf covered a multitude of bad hair days and oily hair from the applications. My hair was shaved over an area of an inch thick strip so whilst growing through it was unruly. It did seem slow growing and there were actually two different areas of hair lengths from the two shaves. By this time the first op shave was soft and downy and the last op shave was like a bristly mat but at least it held the scarf in place when I could not find a head band.
I wore it bandanna style but it looked bizarre because I was wearing a four year old pair of glasses. My current ones were in need of renewal anyway but somehow I could not focus in them. By chance I tried my old ones and could see OK. These were from the era obviously of huge frames as opposed to postage stamps so I felt a little self-conscious at first. However I thought that what did it matter what I looked like because I was still alive and anyway at least they kept the sun out of my eyes.
I was advised not to have eyes tested for a new prescription before six months and I would assume this is due more to the pressure problem rather than the surgery for Epilepsy. I did not ask at the time of mentioning about needing a new prescription. However, I did get a new pair a month after surgery and have not fortunately had any visual alterations. The opticians were very good as it was an offer of three glasses for the price of one. I asked if they would make one pair up then wait a while before making up the other pairs. They agreed and after four months the final pair was made. The eyes were retested at this point and had not altered. They Optician himself was a Doctor so aware of the problems but the staff were so remarably helpful and understanding especially when I first went in to enquire. They were very supportive all through and helpful.
The Hippocampus is in charge of moods as people with bipolar depression have problems with this part of the brain, as far as I can make out that is.
The operation was called an Amygdal Hippocampectomy so they not only removed the scar tissue that was the focal point of the seizures they also removed some damaged white matter because apparently I did not need it.
Everyone said that I seemed more alert and had speeded up. Also my sense of humour had been very much enhanced. My neighbour thought I had come off the drugs but I pointed out that it would be a year seizure free before I could come off them. Se said "God help us when you do then". I was also told that I seemed to have woken up from a deep depression. It is not something that I had noticed at the time but I suppose it must be so if everyone says so. I always thought that I had a good sense of humour and my friend agreed but said that now I seemed to be able to vocalise this whereas before it was more a thought process. I am still studying this area of the brain so do not know.
I noticed in the beginning that my hearing had been affected in the right ear but that had normalised after two months and I find I cannot stand silence anymore so have music on most of the day unless I am outside when the sounds of nature fill the space.
I wear an MP3 player most of the day the fill the silence of the house. Whether this is due to the ear being affected or just down to a psychological thing I do not know. Also, it helps to be in your own space and time especially in the presence of irritating people like football supporters on a train whose language and conversations are both offensive and intrusive. The operation has not made me anti-social as I enjoy the company of intelligent and amusing people.
Having read about the brain I stumbled upon endorphins for painkilling and discovered that endorphins are produced to kill pain and enhance the mood. Singing is said to produce endorphins and specifically during meditation with the OHM sound. It may account for the need to have music to keep happy!
My memory fortunately is no further impaired in fact it has if anything improved but that could be because I am more focussed and interested in things now.
Had I not had a sense of humour still in June it would have been a crying month. It turned warm after I had seen the Neurologist in June and complained about the cold head. This was fine but when it was too hot we needed the fan blowing in the lounge to keep cool. My body was warm so I wore a bikini but the moving air felt cold on my head and I was forced to sit wearing a hat too or suffer.
July came and then the heat problem kicked in. The body's temperature control is the hypothalamus which is quite close to the hippocampus. Although I know it was not touched during the surgery I don't know whether surgery affects the whole brain until equilibrium returns or whether it was hormonal. I had gone 12 weeks without a menstrual flow. This probably did not help with the feeling of overheating but when outside temperatures went over 80 deg my skull started to feel like it was exploding. It was not just a sensation because the skull actually did expand. I could tell by the tightness of the headbands and well as being able to feel a definite indentation all around the area of bone that had been removed originally. Consequently I had to cool down rapidly by using ice packs and stay in a cool room. Fortunately there was a cool room in the house and I never thought that I would long for the cold to return. It is easier to warm up than cool down because icepacks are not easy to keep in place and carry on living. During a trip across Country to a wedding it was unbearably hot on the train and the surrounding area. At our destination my family had icepacks for the cool box which they had travelled with so I used those and at the wedding the catering section also had icepacks. It rained and that helped to cool temperatures especially standing in it.
We had travelled home from a Christening in June and the train was set so cold that we virtually alighted with hypothermia and it was quite cold in June on occasions anyway.
In July then I finally contacted my Reiki master and he spent two hours clearing my head and doing other things that enabled me to withstand higher temperatures before swellings occurred. I did not enjoy the period up to this point as I could not cook due to the heat in the kitchen we ate a lot of take aways.
The plastic surgeon had explained that the feelings of cold on the skull were due to nerve endings and tissue repairing which were quite normal and nothing to worry about. She also added that they would dissipate after a year when full skin integrity would return. Her website was very informative and said that any surgery on the face should be covered with a high factor sunscreen as there was no protection in the skin at present. It was easier to wear a scarf though due to the scars on the scalp because at least this afforded UV protection all over.
I am not sure whether bone has any nerve endings thus feels pain at all or whether the pain was all due to muscle, skin and nerve renewal/repair. It has been a lot to research and I will find out eventually I hope.
Also the website said that the hairline can be altered following surgery. As most women or people having plastic surgery would all be in their middle ages like me, not all of course, the healing times stated would generally apply. My hairline has altered especially over the patch where the muscle was cut away. This is a permanent indentation now and has a little hair growth at the top of it. The rest is covered by my hair which has had to have a change of parting to cover the now very unruly new growth.
I have now purchased thicker scarves for the onset of winter as it has come early this year although we do get hot days still and my head still expands when temps reach 90 as they do inside the house especially in the kitchen with all the electrical appliances going.
Whether it has just been an exceptional year weather-wise or I am just getting old and have noticed it much more than perhaps other people who have had this surgery have noticed I do not know. I am not a hypochondriac by any means and it annoys me when people who are able-bodied do not bother to do anything when I so much need and want to do things.
As I said my personality has been altered and I cannot stand fools gladly anymore or people who dither about which is strange because I was probably the World's worst ditherer. I am more assertive and confident, also I notice that I cannot consume alcohol like I used to. I get drunker quicker. It will get worse too when I eventually come off the medication because one is an enzyme inducer. This just means that it gets rid of toxins from the body quicker so they can give you a higher dose of another drug. I assume that alcohol being a toxin would be treated in the same manner. Although I have not reduced medication I am not sure why it affects me more now and do not know where to look for the answer to that.
The strangest thing I found was the fact that the blend of essential oils that I used to stop the seizures smells nauseating now just like smoke does. In fact smoke can make me physically sick if I don't get out of it and this is also a psychological phenomenon because as soon as I smell smoke I panic for some reason get anxious. It seems that only certain odours have been affected in this respect but I have also noticed that what was once a keen olfactory system is now even keener and I am more aware of odours now. It used to be part of what was called the Aura when everything was heightened in respect of odours and I would generally have a seizure shortly afterwards. This was something that my Mother first noticed many years ago so knew when I was going to have a seizure. She would shout at me to bring me out or snap me out of it and it worked. My colleagues in the offices where I worked also did this and I used to come round saying "Why are you shouting at me?"
The rest of the Aura was a deep sense of foreboding in the pit of the stomach. This occurred a few times after surgery but I figured that as they had taken the part away that was actually triggering the electrical disturbance then there could be no full seizure or absence. Which has been the case and this part of the Aura has actually ceased altogether now. I do find that if my colon is impacted then I have strange feelings in this respect so keep my bowel as regular as is possible for someone who has been habitually constipated for 40 years.
When I was in hospital I was lucky or unlucky depending on how you coveted your dignity not to have had my bowels opened. Being such a sufferer of impaction this did not affect me a great deal although when I got home I was very worried what the first straining would do to the Dura. Fortunately I did not ever get any bleeding for which I was eternally grateful as I had no wish to go back for further surgery.
After a few months I actually drained off some old CSF from my sinuses. There is no mistaking the taste or smell although my Surgeon was sceptical about this being the case. I just thought that as there was a slow leak that when it was not bursting forth on the toilet floor or on the sheets or even into a pot then it must have gone somewhere. A local nurse could not answer that question and I have not been able to confirm whether this is the case. I assume much CFS was taken out that had leaked through the Dura when then repaired the tear but what happened to the rest I do not know.
My Reiki Master also sorted my back out as he had worked for an osteopath at one point in his career amongst other things. It has been fine and un-fused for the last two months now so I no longer need to sit on a ridiculous cushion anymore.
After five months I went to Greece by air as permission to fly was given by my surgeon. The outward flight was not a problem from beginning to end but it did get warm so ice cubes were applied to cool my head. It was a relief to land though in one piece. It worried me slightly as I had no idea what would happen during the flight. I don't think I would have given it a second thought but for the fact that I had the hole filled it was an unknown quantity in respect of being affected by unusual outside pressure. At least I know now that the resin has fully set to be an integral part of my skull.
The heat of Greece was exceptional for a week and caused the skull to swell uncomfortably. However it ceased during the cold of the second week. Our return flight was uneventful albeit turbulent. I did have a strange sensation during the descent into East Midlands though - it takes 20 minutes to do this. It felt like my face was being pushed backwards by Zero gravity. Like having an instant face lift for five minutes. Everything went back to normal on landing but the pressure sensation on the face and especially over the eyelids was very strange. The skull itself caused no problems though in respect of air pressure.
Carrying out heavy physical chores became comfortable after five months but six months elapsed before heavy weights could be carried for long periods comfortably. This was both physically and mentally when work could be undertaken without giving a thought to the consequences.
My muscles need rebuilding although with all the walking at least I did not lose muscle there. In fact if anything I gained more definition to the leg musculature.
Washing hair was allowed 11 days after surgery and with mild shampoo and a great deal of care. The skull is however still tender until six months.
There is no set time for CSF renewal as everyone is different and the amount lost would make a difference too so that is not something that can be measured in definitive time. However it was about two months before I could run again without my brain bouncing around in a hollow space.
Bone takes six months to regenerate fully on a middle aged person but again this is down to the individual as everyone has pointed out. It could take longer.
Skin takes a year to regain full integrity including UV protection. The coldness around the scar area took six months to ease and is caused by the nerve ending in the skin repairing. It will finally go in a year so I am informed.
The Jaw takes six months to return to normal. Chewing took four months to ease off with the pain.
Swelling on the cheek eased after four months but still occurred at the top of the ear until six months had elapsed. The jaw muscle returned to normal after five and all swellings ceased after six months.
The eyes took six weeks to fully focus together at great speeds. It took three months for the light sensitivity to completely go.
The hearing took two months to balance out although certain sounds by virtue of their pitch are unbearable even after six months.
The dizziness or light-headed sensation took eight weeks to go.
Focussing to read normally took about six weeks before the eyes adjusted.
Headaches took two months to recede although occasional ones occur due to sinuses and the skin pulling across the skull when it tightens.
Doing yoga again without straining the Dura took 18 weeks although a shoulder was not comfortable until six months. I would not contemplate a head stand at this juncture though.
Bending over comfortably took three months to achieve. At two months it was still done with care.
Being able to sit fairly comfortably at a computer to type for long periods took three months. After five months no swelling or discomfort on the skull occurred.
Useful Web Sites.:
www.drcherup.com/html/facelift.html - This is the Plastic Surgeons site.
https://profreg.medscape.com/px/getlogin.do?urlCache=aHR0cDovL3d3dy5tZWRzY2FwZS5jb20vdmlld2FydGljbGUvNDQ2NzM4XzY=
This is Log on address for Medscape website which contains much medical information and references.
http://www.sciencedaily.com/releases/2004/05/040513010413.htm - Latest research info.
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&list_uids=12201636&dopt=Abstract – PubMed is a service of the U.S. National Library of Medicine that includes over 16 million citations from MEDLINE and other life science journals for biomedical articles back to the 1950s. PubMed includes links to full text articles and other related resources. (This was copied without permission I must add and apologise in advance for the infringement.)
http://www.nyu.edu/publicaffairs/newsreleases/b_hippocampus_2003.shtml The New York University whose Website is http://www.nyu.edu/
http://www.memory-key.com/MemoryGuide/glossary_brain.htm The About Memory link http://www.memory-key.com/ being the website.
http://library.thinkquest.org/C0110291/science/nervsys/background.php The Oracle Foundation which has amalgamated with ThinkQuest for optimum student access to information – the former is a library for schools only but access can be gained without registering – fortunately via the ThinkQuest link.
http://biology.about.com/library/organs/brain/blhippocam.htm The About Library for Anatomy & Physiology. http://biology.about.com/gi/dynamic/offsite.htm?site=http://www.psycheducation.org/emotion/hippocampus.htm is a link in respect of the hippocampus.
http://www.medicinenet.com
Most of the above sites also have BLOG sections and contact addresses (via Email) although I have not tried to get information from these contacts.
Finally I would like to thank Jan Pearson for helping supply much of this information through her connections with the Neurology Department.
Dr David King at Southern Illinois University School of Medicine The web link is http://www.siumed.edu/~dking2/index.htm. Dr. King was kind enough to point me in the right direction in respect of searching for information on bone and skin renewal. He was also honest enough to say that he did not have the expertise to answer my questions – which was refreshing.
Dr. L. Cherup for assisting with the skin and bone renewal information.
Dr. Hazenfeld whose website is informative in respect of Dizziness being self-limiting and usually resolves itself within 12 weeks. http://home.hawaii.rr.com/dochazenfield/dizziness.htm. He does not though reply to Emails.
The Mayo Clinic Website is quite informative at http://www.mayoclinic.com/health/epilepsy-surgery/BN00020.
The following was copied, without permission I have to admit from a site discovered whilst looking for Temporal Lobectomy rather than Hippocampectomy. I lost the site amongst a motley of other site searches.
How Effective Is a Temporal Lobe Resection?
Temporal lobe resection is successful in eliminating or significantly reducing seizures in 70% to 90% of patients.
What Are the Side Effects of Temporal Lobe Resection?
The following symptoms may occur after surgery, although they generally go away on their own:
• Scalp numbness.
• Nausea.
• Feeling tired or depressed.
• Headaches.
• Difficulty speaking, remembering or finding words.
• Continued auras (feelings that signal the start of a seizure).
What Are the Risks of a Temporal Lobe Resection?
The complication rate with temporal lobe resection is low, but there are some risks, including:
Risks associated with surgery, including infection, bleeding and allergic reaction to anesthesia.
• Failure to relieve seizures.
• Changes in personality or mental abilities.
• Pain.
What Happens During Surgery?
A temporal lobe resection requires exposing an area of the brain using a procedure called a craniotomy. ("Crani" refers to the skull and "otomy" means "to cut into.) After the patient is put to sleep, the surgeon makes an incision (cut) in the scalp, removes a piece of bone and pulls back a section of the dura, the tough membrane that covers the brain. This creates a "window" in which the surgeon inserts special instruments for removing the brain tissue. Surgical microscopes also are used to give the surgeon a magnified view of the area of the brain involved. The surgeon utilizes information gathered during the pre-operative evaluation-as well as during surgery-to define, or map out, the route to the correct area of the temporal lobe.
