MVD SURGERY

Well, I've taken the plunge and am now on the list for micro vascular decompression surgery. I've asked for it to be postponed until after 11 June as there are a few events coming up that I don't want to miss. The pain is non-existent and it really was a difficult decision. However, all the reading and research I've done indicates that there is no cure and every pain free day I have is one day closer to the next bout of serious pain. So, no avoiding it really.
On a different note, I was playing golf last week and I ran out of energy on the 10th hole. I quite literally could not put one foot in front of the other. I thought that I was having some kind of heart attack, but without the pain. With the assistance of my eldest son, I eventually made it back to my car. I stupidly drove home and have no recollection of the journey and woke up in my drive. I don't know whether I fell asleep or passed out once I was in the drive. I managed to get an emergency appointment with my GP that afternoon. He gave me a good going over and took a full set of bloods. I was still feeling pretty poorly, but my blood pressure etc. was fine. His best guess at that point was a virus. He told me to make an appointment in two days when the blood results would be available. The results of the bloods showed that my white cell count was high and my red low which in the view of the doctor indicated that there was some kind of infection that my body was fighting due to the high white cell count. He checked me over again and told me to come back in a week when he would do another set of bloods when hopefully things will be heading in the right direction. My energy levels are slowly returning to normal so it my just have been some form of virus. Onward and upward

MVD SURGERY

I've decided to have the operation. I haven't contacted the surgeon yet, I'll do that next week. I don't know why I was even considered not having it when I think about the pain I was in and the distress it caused my family.

SURGERY

On Monday I attended my appointment with the neurosurgeon at the Southern General Hospital. He was a Mr Suttner who spoke with a South African accent. He described in great detail how the operation was carried out and described in even greater detail what the risks were. He then said he could do the operation probably within a couple of weeks. I nearly fell off my seat. I did not expect him to offer the procedure so quickly. It is called micro vascular decompression or MVD and involves an entry behind the ear, draining cranial fluid and then micro-surgery to stop an artery pressing on the trigeminal nerve. He told me to take my time to think about it and get in touch if I was up for it. I don't know why I was so shocked. I mean why else would I have an appointment with a neurosurgeon.

The difficulty I have in arriving at a decision is that I have been pain free since the 28th December 2010 as the medication appears to be doing its job with little or no side effects. I almost wish I was in pain as it would make the decision so much easier. So it’s down to me and the family to work it out. Logic says I should have the op as I know there is no cure for TN. I can well remember the pain I was suffering last October but somehow the memory is not as raw as it was. If only life was simple.

TN SUCCESS STORIES

The following piece is an email I sent to a fellow TN sufferer in Canada who was looking for some success stories to give encouragement to others on the Living with TN website. It really does help knowing there are others out there who understand your pain and who you can occasionally open up to. 

Hi Shiela,

I'm certainly willing to contribute to 'Success Stories', but there are probably a few things that contribute to my physical and mental well being at the moment, all of which could change in a second if the pain returned.

 I have been married for 37 years, I'm 54, you do the maths. I have two sons age 36 and 30 years, they are my closest friends. I play golf with my eldest most weeks and I speak to the youngest regularly, he lives a little further away and is well on his way to making his first million....so he says:-))

My wife is one year younger than me and has the additional burden of caring for her parents, both 80. Her father is deaf and confused; her mother is blind and immobile, although she is capable of carrying out her own basic care needs. My wife is an only child.

I served Strathclyde Police for 30 years and retired at the rank of Inspector in December 2009. I missed many family occasions because of work. For the last six years of my service I was afflicted with TN, but lost only four weeks work, probably down to my own stupidity, rather than being TN free. Both my parents are still living and not in perfect working order, but unlike my wife, I have two brothers.

If you have read my blog, you will know that over the course of 2010, things came to a head resulting in my admission to hospital for two weeks in November. During my time in hospital I just wanted someone to put me out of my misery....why can't they just make you unconscious when you are screaming with the pain, and I mean screaming.

I honestly don't know where I'm heading with this......or perhaps I do. There are a number of points I want to make, the first is that my experience is peculiar to me and no one else. After my admission to hospital, discharge and the subsequent research I have carried out, I have accepted there is no cure for TN, only various forms of pain relief and sometimes no relief whatsoever, as I found out in hospital.

The fact that I remain positive and I do remain incredibly positive, is because what if I lived my life frightened to do anything because of TN and I never had another attack......boy would I be pissed off!

This attitude is simply due to the mental strength of my wife without whom I could not have gotten through this. I know she has suffered as much, if not more than I did, but anything less than a positive attitude is not acceptable in her view of the world. The fact that she has stood by me throughout the worst of my suffering, and I'm not the easiest on a good day, lets me know everything I need to know about her. Would I have been as strong if the roles had been reversed.....mmmmmm?

So, in conclusion, I take an extraordinary amount of drugs to live a ‘normal’ life. I appear to be pretty fortunate in that I have few side effects other than snoring (I’m terrified my wife will suffocate me one night). I even manage the occasional bottle of wine, beer etc. and don’t die despite the warnings on the meds. My family have all been beyond supportive and that support, dare I say love (difficult for a dour Scot to say), is what gives me the strength to not feel sorry for myself.

I haven’t mentioned my two granddaughters, the eldest (age 3) who thinks she can ‘cure’ you by rubbing the affected area. How do you tell a three year old? My mother, who is devoutly religious, will have prayed for me till her brain hurts. My father, another best friend, will have dealt with it in his own way (deep, silent type, but the best story teller I know when he gets started).

Finally, apologies for dumping this on you, but I really do find that it helps to sound off on someone who is, essentially, a stranger.

Oh, by the way, I still consider myself a ‘success story’.

Regards

Jim

My youngest grandaughter Beth, age 6 months.

LOSSIEMOUTH AND SPAIN

The Lossiemouth golf trip came and went without incident. The two golf courses of the Moray Golf Club are truly magnificent. I don't detect a great deal of design; they were laid in landscape that was already there, no major earth moving undertakings. I can see this becoming an annual family outing. What made the courses even more interesting was the fact that they sat on the edge of Lossiemouth airbase. During the second round on the Monday, the airbase was particularly busy with Tornado training operations. The noise was incredible as the Tornados did their 'touch and go' appearing to be only feet above you head as they passed over the golf courses. One thing I did discover is that my capacity for beer and curry is not what it was. In fact, I was in my bed by 9:30pm leaving the two youngsters to do what they do (they were in bed by 10pm).
Our trip to Nerja in Spain went reasonably well despite the fact that in 30 years of travelling to Spain it was a week of the worst weather I can remember, rain, wind and cold, in fact, only one good day to speak of. We still managed to visit Malaga, Torremolinos, Ronda, El Chorro and the nearby lakes, Granada and the Alhambra (my favourite) and various other places too numerous to mention.
Our hotel, the Riu Monica, was a cut above, better than I remember it from 20 years ago. Great food, friendly efficient staff and a comfortable room, what more can one ask for.
The food was so good that I now need a regime change according to my wife. I had always thought it was my medication that made me gain weight, but she has finally convinced me that it's the amount I eat that’s the problem. So I'm on a diet as of Monday. We'll see!!
Absolutely nothing to report on the TN front, which was the original purpose of this blog.

GOING TO NERJA (BUT FIRST, LOSSIEMOUTH)

Tomorrow I'm off to Lossiemouth with my sons for a couple of rounds of golf. My eldest son absolutely raves about how good both Moray Golf Club courses are, the Old Course and the New Course. Somewhat worryingly, he gave me two dozen golf balls yesterday. I've inferred from this unsolicited gift that the courses are rather tight and difficult. We play the Old Course on Sunday and the New on Monday and drive home after the second round. I'm the designated driver. Our accommodation is in nearby Elgin where I have a room of my own. My wife managed to convince my sons that an economy family room for the three of us was not worth the saving as I am a noisy sleeper (snorer). So the plan for tomorrow is golf, curry, couple of beers and bed. Its good fun when the three of us get together which is not often enough. Maybe that’s why I enjoy it so much.
Yesterday, I booked seven days in Nerja in East Andalusia, Spain from next Friday. It’s a very posh hotel which we've been to before and we always said we would go back to. So here we are 20 years later making our grand return. I've also hired a car for the week and intend to visit Granada, Malaga, Seville, Rhonda and a couple of other places that may take our fancy when we arrive. I've paid for additional baggage so that I can take number one camera kit rather than my compact.
On the TN front there is nothing to update, things are still exactly the same as the last post. I'm still seeing the neurosurgeon on 23rd of this month.

APPOINTMENT

I have an appointment with a Dr Suttner, consultant neurosurgeon, at the Southern General Hospital on 28 March. To be honest, I don't know what to expect. I'm still pain free, have little side effects from the meds and the only things that let me know that I still have TN are the crawling sensations on my face, tingling numbness on various parts of my body, twitching which is becoming more pronounced and my memory of the last 12 months. I can't see him offering me surgery given the fact there is no reason to and I would refuse in any case. Who knows, the pain might never return (in yer dreams big boy). So open mind and we'll see how it goes.
I went to Portencross the other night for the best sunset in the world. It turned out to be great that night. When I arrived there was a photographer, female model and a load of kit already on the pier and some fishermen/women happily going about their business all totally oblivious to each other. Oh, and me scrambling about the rocks, and I mean scrambling. I managed to slip and fall into a rock pool which was about two feet deep. I was not fully in it, but enough to be embarrassed about it. A fellow photographer who was nearby asked if I had hurt anything, ‘only my pride’ I replied. So wet up to the knees, I grabbed the shots below.

LEE FILTERS

The Lee filters which I ordered last October finally arrived on Tuesday. For those who don't know what filters are, they fit on front of the camera lens and allow you to take longer exposures than would be normally possible. In the case of the 'Big Stopper' filter, it reduces the amount of light entering the camera by 10 stops and allows you to take really long exposures in daylight.
Yesterday was a beautiful day. I dropped my wife and her friends in Glasgow for a girlie day out and headed for the snow covered Glen Coe. When I arrived I was surprised to find that the only snow was on the highest reaches of the mountains. I stopped at Buachaille Etive Mor, the 'most photographed' mountain in Scotland due to its setting and symmetry. I was also surprised to find eight other photographers there. Form an orderly queue for the best spot please. I finished the day off at Portencross on the Ayrshire coast, around trip of almost 300 miles.
I'm really pleased with the filters; I should be a £370!!
On the TN front, still no pain, the only indication I have is the occasional mild crawling sensation on the left side of my face. I'm still on high doses of meds with no apparent side effects. I received a call from Jo at the Southern General Hospital in Glasgow which is the neurological hospital for the area I live in. I have an appointment there on the 23rd March.

DULL

As the pain from my TN is nonexistent at the moment, I have very little to write about. Perhaps it highlights how dull my life is. Then I think about the things I could write about; my granddaughters, my wife, my two sons, my mum and dad, my search for a new caravan, photography, golf etc. The point being that there is plenty going on in my life to keep me interested and occupied. Now whether other people want to hear about the day to day comings and goings of my life when my TN is suppressed is another question. I’ll leave that one hanging meantime.

The weather here is absolutely miserable, 80mph horizontal rain, although it is slackening off somewhat. Better than snow I suppose.  That’s about it. Oh! I shared a bottle of wine with my wife over a meal at the weekend and despite the warnings on the medication I didn’t die. I’ll still keep it as a once in a while treat. A Fairtrade Chilean Merlot, very nice.

Finally, I’m starting to get aches and pains in my muscles and joints. I wonder if it’s the medication or the onset of arthritis (runs in the family). I’ll see how it goes and if it’s still an issue I’ll mention it to the Doc the next time I see him. 

PORTENCROSS

My last two outings have been to Portencross, near West Kilbride, North Ayrshire. I've already posted two shots from my last outing which I rate as two of my best ever. Today, I decided to walk to Portencross and walk beyond the pier towards Hunterston Power Station. It’s a nice walk along the coast, probably about four miles there and back. I stopped short of the power station because I remembered it was a nuclear one and my brains are scrambled enough without letting the 'rays' get to them.
I had my new telephoto lens with me. I didn't get any decent wildlife shots because birds, unlike my granddaughter, don’t pose to order. So more observation and planning will need to go into any future trip. I still managed to get a couple of decent shots at Portencross Pier. It’s always quite happy to pose to order. I failed to avoid a soaking from the squalls that were blowing in off the sea.
My TN condition still appears to be going swimmingly well. No pain!! I still have the odd crawling sensations on the left side of my face which I put down to nerve activity that would otherwise be pain if it were not suppressed by medication.