My first appointment with the pain clinic was canceled last week because my consultant called in sick. On impulse I decided to have a break. That night I booked a last minute holiday. I boarded a plane and took myself off to the sun. The first morning when I had a shower the water hit my face and the pain suddenly jolted me into the half bath I landed on both my right arm and my left pinky which took the full impact of my fall. I now have a fractured finger and extreme tissue damage to my right arm. To add insult to my injury I find that I cant sit in the sun as the heat starts the spasm of the pure red hot poker pain that put me on my backside in the shower.
I cant believe the restrictions this condition is putting on my life or that I elected to have my surgery without being told, how ever small the risk was, that this may happen to me. I thought I knew all about the risks of my surgery (parotid gland tumor removal) which is facial palsy and numbness and that my tumor may be malignant but no one told me that even with a benign result I could end up on my butt whilst showering or that I would never be able to enjoy the sun on my face again.
I am sorry. It just makes it worse on us to have pity parties and on those around us. I wish they would do some good but they just don 't! I had mvd surgery and now I have additional issues to deal with that I didn’t before. Having tn2 is dreadful. But, your idea about a vacation does sound good if we were normal. My neurosurgeon at Mayo clinic told me three things I will never forget. He said expect a quality of life less than you have had, check into a pain clinic and if you get hooked on a narcotic, so what? And thirdly he said, eventually you will get out of your pain because you will die. Well, the first thing as proved true…can’t do much anymore, and I am on morphine now twice a day…I just hadn’t died yet. I was always healthy until my local M.D. Told me he thought I had TN. I had never even heard the word. That was 5 1/2 years ago at age 57. HANG in there.
I'm very early in the process of accepting what has happened to me. I am having a hard time dealing with the very things that your M.D. said to you. I was told by my surgeon that he was sorry that this shouldn't have happened to me but he knew a man who could fix me. I now realize that he meant pain management and I feel that I have been sentenced to a life of medication. I am currently taking Neurontin given to me, by my GP as I am still waiting to see pain consultan,t she said it was the start in the pain management process, which at first felt like my cure two week into taking it I had my first visit to the hair dresser in a year although still painful I was determined to reclaim my life, all be it in a very small way. Trying to explain a pain that can't be seen to family friends or strangers is the most difficult I liken it to a method of torture some unseen assailant is sticking a red hot poker into my face and I have no control over when or where. Then there is the normal stuff like hugging my Granddaughters or friends they have all accepted the right side of my face is out of bounds. The pain may stop me in my tracks but it's not stopping me enjoying the moments that count I wanted to vent last night but today I had a beautiful time when I watched my eldest Granddaughter perform in her school concert and a family BBQ after. I don't want to accept that the only way to be normal again is narcotics or risky surgery I would rather live in this purgatory than become addicted to narcotics or risk further damage during surgery. I think what is fueling my anger is that I was not aware that my "elective" surgery to remove a tumor from my right parotid gland could result in this life sentence of pain. This is so wrong even if only a very small percentage of patients risk this they should be told. I had accepted that I may have cancer and talked to my family about it also that I may have facial palsy after surgery which was very hard to explain to my Granddaughters but we needed to have the conversation. For four months after my operation I was unaware of what my future would be as the right side of my face and ear were numb but I was still me then slowly it woke up To be left in this hell for the rest of my life was not part of the contract right now the diagnosis of cancer and 2 to 5 years to live would have been preferable I know that sounds awful but that's how I feel when the house falls silent as everyone goes to bed I don't meditate or chill I dread going to bed because I know that at some point in the night weather it be the brush of a sheet on my face or I've made the mistake in my slumber of turning onto my right side I will wake up being attacked by the unseen assailant. So her I am at 3.04 am UK time thanking someone I don't know for acknowledging me and making my day a little better because you are also visited by the pain pixie every waking moment.
Thank you again Thad where ever and who ever you are
Hi Dolor, early days for in this new and exciting phase of your life as you say! Acceptance of the hand you've just been dealt is hard, but over time it's a good mental state to acheive. My late partner had the same op. as you and had no problems. You just got unlucky. She too was warned of the risks as were you, but not of your outcome. You have my sympathies.
Opiods... IMHO because you have pain, you will not get addicted... but you may get dependant in the sense that your body will protest if after using reasonable levels of opiods continually you stop! I've been there as they say. Now I use them for temporary respite, as little as possible, and as seldom as possible. Meaning 3- 4 times a week, usually on weekends ( quality of life). Often it's the only bit of quality of life I get.
I sincerely wish you all the best. This is a difficult road to travel. This is a good supportive site. You are not alone. Craig.