Things Still Going Well

Well here we are, almost six years post op and still no recurrence of my TN. Best decision I ever made. I can't believe I resisted going for the MVD for so long. The only evidence that I had the op is the scar on my head which itches like crazy if I get too much sun on it and a very slight tingle on the left side of my face.

I do realise how blessed and lucky I am. I know of someone who had an MVD which only helped for a short time. I'm not in the least complacent and there's a bit of me thinks the pain will return at some point, but best get on with life and not fret over what might be.

I've been fortunate enough to travel extensively over the last six years and have further trips planned for this year. Golf is still a big part of my life and I try to get at least four rounds in a week.

So my health is where I want it to be, but am mindful that at 60+, if I don't look after myself, it could be a temporary state of affairs.

Onward and upward!

https://www.flickr.com/photos/nutz1/

My Life without Trigeminal Neuralgia

I don't miss trigeminal neuralgia. That may seem very much like stating the obvious, but even though I've had what seems to be a successful MVD i.e. no pain, no meds, there's not a day passes that I don't think about it, even after 16 months pain free. I do of course have a constant reminder in the slight tingling numbness on the left side of my face. I was advised that it may take up to three years to go, if at all. If it doesn't, it's so mild it won't be an issue. I'm already thinking that it's permanent as the feeling hasn't changed since my MVD.

It's only just recently I realised how traumatic the whole experience was for my wife (and the rest of my family) after she really opened up about it the other week. She was a tower of strength throughout the worst of my TN, but it's taken it's toll on her. I've asked the question before, would I have been as strong as her if the roles were reversed? I would like to think so, but when you consider that she had to continually pick up the pieces for around eight years, I honestly don't know if I could have shown the same resilience and mental stamina. It's not only that she had to deal with me literally screaming with the pain, in the aftermath, I would be so heavily drugged that my contribution to any semblance of a normal family life was non existent. The upside to this is that our relationship is ferociously strong. It was strong before, but just seems better now. My wife might offer a different view as she constantly talks about trading me in for a newer model.

I still find it difficult to talk really openly about TN even though I never made any secret of the fact I had it. Talking about it has the ability to bring the rawness of my experience rushing back and evoke very strong emotions. That's perhaps the reason I keep this blog going, although I don't post nearly as often as I did. I don't mean to sound negative, because I'm not. I am leading a normal life, I have another new granddaughter, that's three in total, I golf, go holidays, enjoy family occasions etc. In fact, I am all the more appreciative of my life now, having previously taken my good health for granted.

I cannot thank the members of the Living with TN website enough. Again, I've said this before, there is a wealth of ignorance among health professionals who deal with TN only rarely. That's not a criticism, just a statement of fact. I was lucky in that my GP was onto it in a flash (pun fully intended) and started me on the medication which was to be my constant companion for the next eight or so years. I was referred very quickly to a neurologist, had the necessary MRI scans (four in total) and ultimately, my MVD. That it took eight years to reach that point was down to my own resistance to let anyone to poke around inside my head rather that sloppiness on the part of the NHS.

The Living with TN website allowed me very quickly to access the information I so desperately needed. The empathy and support I received form fellow members was outstanding. I reached a point where my doc said I knew more about the condition than he did. You can read all the technical manuals, research papers etc. you want, I did, but it's only by tapping into other sufferers experience that you really begin to understand this terrible affliction. The information, advice, but most of all empathy and understanding which are part and parcel of this community gave me the additional support I needed.

So onward and upward dear friends. I'm currently planning a trip to New York which will be in at the end of March, if not then, May. It's funny that while I was working, all I wanted to do was lie on a beach or by the pool, but now, every break we have, we try and tick something off our bucket list. Maybe it's just an age thing. I'm thinking Japan and China for next year.

My Granddaughters, Beth (2), Faye (5 going on 22) and Zoey (5 months)

15 MONTHS SINCE MVD

It's now 15 months since Nigel Suttner carried out my MVD at the Southern General Hospital in Glasgow. I'm pleased to say there has been no downside to the operation and my life is back to where it should be. I still have a mild numbness on the left side of my face which I barely notice now, an outcome I'd have settled for before the operation. I can think constructively and positively now that I'm med free and there are not enough hours in the day to do everything I want to do which usually involves grand kids, golf and photography. I am a quantum leap away from where I was just over a year ago when I could barely function. There's still a bit of negativity there in that every morning I wake up and the first thing I think about is TN, will the pain return today, when it doesn't, I quickly move on. The memory of the pain is still raw even after all this time. I consider myself blessed to be a success story and very, very lucky to have a health service like we do in Scotland. I can expect up to ten years pain free, but it quite clearly could be less. Mr Suttner say the ten year figure is a guesstimate based on previous case studies on a body so small that it renders the conclusion unreliable at best.

MVD - Seven Weeks ost Op

Since my MVD seven weeks ago, things have been going pretty well. Other than the problem with ‘restless legs’ which is a minor irritant, I have had little to complain about. I have now stopped taking Gabapentin and have reduced the Tegretol to 400mgs per day. I hope to drop it by another 200 next week and then stop the following week. That will just leave me the Amitriptyline to deal with. I don’t know why, but I feel this may be the most problematic. Time will tell.

MVD - Six Weeks Post Op.

Visited my doc yesterday. It was as a routine follow up after my MVD. I mentioned to him that I had trouble sleeping due to 'restless legs'. He said that it was a probably down to withdrawal from Tegretol as neural pathways would be getting back to normal and the brain would have difficulty interpreting some of the signals it was recieving after being befuddled with Tegretol for so long. He told me to take 200mgs Tegretol before going to bed and this seems to have done the trick. While it may seem like a backward step, when I consider that I have now been taking Tegretol constantly for around nine years, the last nine months at the maximum dose, it seems logical. So I am now back to 600 mgs a day as well as 300 of Gabapentin. I'll take my final dose of Gabapentin this comng Friday. I am not at all disheartened by having to increase the dose of Tegretol beause my body seems to deal with it pretty well, it was at the higher doses I was having difficulty. Truth be told, I probably got a bit ahead of schedule in reducing my medication (overly keen to be drug free). However, the real up side is still no pain.

FIVE WEEKS POST MVD

It's now five weeks since my op and so far, no real down side. I've reduced my medication even further and really feel the benefit of doing so. On the basis of the reduced meds alone, the op has been a great success. I can think again; I can read and retain information again; I don't hesitate when I speaking as I seem able to find the right words now; I don't sleep for fourteen hours a day any more an so on. There's still no sign of TN pain although I do seem more prone to headaches (not the sole destroying type) and my wound, which is healing nicely, is so itchy it's driving me mad. I'm now off to my youngest granddaughters 1st birthday party. I have much to be thankful for when I think back to the state I was in last November. Onward and upward dear friends.

THREE WEEKS POST OP

My recovery is going as planned and I now have no post op pain at all. I'm continuing to methodically reduce my medication and so far so good. To date, I've stopped the Baclofen and reduced the doses of Gabapentin and Tegretol without incident. The only thing of note is that I managed to get a little to much sun on my wound scar which made it incredibly irritable although it has settled down now.
I also took the opportunity of a little R&R at my uncle's croft at Bettyhill, Sutherland right on the north coast of Scotland. It truly is magnificent terrain and the fact that it's so isolated makes it even better, even if the surf dudes have discovered the delights of Torrisdale Bay. The break was just the tonic I needed.
It was great to see my aunt and uncle whom I had not seen for far too long. My uncle, who is a Gaelic speaker, has generations of local and family history stored in his head and it's magical to sit in the evening and hear him recounting events generations old as if he had been there himself. Everything from the Highland clearances to a run in with the local constabulary over salmon poaching. He has even featured on Gaelic language TV and radio.

TWO WEEKS POST OP

It's now been two weeks since my MVD and the only only meds I'm taking for the post op pain are two paracetamol when I wake in the morning and it's likely I'll be able to stop them soon. I still have slight numbness on the left side of my face which is not causing me any discomfort and if it is to be permanent I can live with it. The hospital reduced my intake of Tegretol from 1600mgs to 600mgs per day. I'll continue to take that amount meantime while I reduce the Gabapentin and Baclofen to zero. After that, if things are going well, I will slowly reduce the Tegretol to zero and after that Amitiptyline. Impatience is the enemy just now. I would love to just stop the meds completely but know that it would be stupid to do so.

MVD Surgery

I checked into Ward 63 at the Southern General Hospital on Thursday July 28th. I did not feel in the least nervous about the forthcoming operation as the memory of the pain was still pretty fresh. I was eventually admitted to a four bedded side room. There were three other people there; one on his way home and two awaiting neurosurgery, both different procedures from mine. Blood samples were taken, blood pressure monitored and low and behold it morning the following day and time for my operation. Mr Suttner, my neurosurgeon had informed me that the micro vascular decompression was, in most cases, a three hour procedure. One of my companions from the previous evening, Paul, told me that his op was a 7 hour procedure and I can remember thinking how lucky I was.
So the appointed hour arrives and both myself and Paul were wheeled off to our respective theatres around 9am. The last thing I remember is the anaesthetics room along with the anaesthetist and the anaesthetics nurse. Friendly professionalism is how I would describe their approach. I don't even remember drifting off!
The next thing I was conscious off was being recovered in the recovery room, sweating profusely, but otherwise feeling great. I was provided with an electric fan which helped to cool me down. A large wall clock opposite showed the time as 3pm which by my calculations would have meant that my three hour op had lasted considerably longer than anticipated. Just as I managed to convince myself that the clock was wrong, remember Paul, seven hour operation, well he was wheeled into the recovery bay next to me. I realised then that something had not gone as planned although I was not overly concerned at that point.
Mr Suttner explained to me that the early part of the operation was straight forward and on reaching the artery all was what he would have expected. However, on pulling the artery aside to access the nerve, the complications started. There were hundreds, if not thousands of blood vessels blocking the way to the nerve. Some had already started haemorrhaging which in the massively magnified view of the surgeon looked like nuclear explosions. To cut a long story boring, the vessels were cauterised the necessary work completed.
I was released on Thursday August 4th and have beauty of a scar, an occasional sore head if I go to long without painkillers, the left side of my jaw is partially numb and a few other aches and pains which are not causing me any great concern.
Most people who have this op, I believe, are looking for pain relief. I differ in that I was looking to reduce the amount of medication I was on because my quality of life was fast approaching an unacceptable level. I have already started reducing my meds, which will continue over two to three months and only then will the outcome be measurable. The perfect outcome will be no meds no pain. A decent outcome will be reduced meds no pain so I am not hard to please.
This is a lay man's commentary and I make no apologies for technical inaccuracies.

MICRO VASCULAR DECOMPRESSION

The morning I did my last post has had a positive effect, or maybe he was going to call me anyway. Mr Suttner, my neurosurgeon, called me at home last night and said he could do my MVD next Friday, 29th July at the Southern General Hospital in Glasgow. So that's it, the waiting is over. A good outcome for me would be a reduction in the amount of meds I'm taking. A fantastic outcome would be 10 pain free years and no meds. Fingers crossed.