Sunday, 22 March 2015

Darkness Into Light??

I never thought that I would say this, but there may be light at the end of my long and painful journey. 

So over the past few weeks, I have been to my neurologist and my neurosurgeon, among others. I have been told that my particular type of ATN is one of the most complicated cases that they have seen, and this didn't make me feel any better. The good news is, that they are determined to try and get me some relief. I was given three options, but the first option preferred by my neurosurgeon is the Cyberknife. It is not invasive and I was told that it was painless. There can be some nasty side effects, but I really couldn't give a damn. I've had enough of this pain. Unfortunately I was told that there is only a 20-30% success rate that there will be ANY difference to my pain, whilst most others with typical Trigeminal Neuralgia have about a 50-60% success rate, according to my doctors. If that fails, nerve blocks and open brain surgery are next. 

I must say here that my Neurosurgeon is excellent. He knows what he is talking about, and he is very direct. He also has enough empathy which makes him likeable. He spoke at length about the procedure, and of course told me that I could be at risk of even MORE painful conditions! I don't really have a choice though, I need to do something about the pain, I have to take the risk. 

I will have this done in about 3 months, which is great considering the completely ridiculous waiting lists and the stupid, stupid Health Service Executive. I have the right to moan and complain, I have sat in A&E in unbearable pain for long periods of time, without pain management and there was one doctor that asked me what Trigeminal Neuralgia was! After sitting in an ass numbing chair for eighteen hours, then being admitted and sitting in another chair for a further twenty four hours, a doctor had the nerve to ask me what trigeminal neuralgia was. The best way to put it is this; I got very angry. I was tired, crying with pain and extremely pissed off. I then began to wonder what kind of a health service can treat people that way. Then I looked around me. Nurses were running from patient to patient, and I could see that they were trying their best. The sheer number of patients, packed into the small department was scary. People in trolleys were lined up against each other, all illusions of privacy gone. Then there were the people in chairs, also lined up parallel to the trolleys, leaving just enough space for the nurses to scurry by. I looked at the doctors too, and that scared me. They were tired, and I wondered how long their shifts were. I could also see that they were trying, and I could forgive the doctor who didn't know what TN was, barely.

Since that stay in hospital, I didn't really have much faith in the system or the doctors. There were thousands of people coming through the doors of the hospital every day, and most of the patients needed their help more that I did. They didn't remember names or faces, did they? 

When I sat in the appointment room to see my neurologist last week, I expected the usual speech. "We'll increase your meds etc... and see you back here in three months." I was shocked that the doctor actually remembered me. He wasn't just saying that, he knew specifics about the case. I went over the usual stuff, and then he called his boss, the neurologist. I will say this, I was treated very well. They both listened to me carefully, and made some observations. They were the usual ones, but the point is, they made the time to listen and give advice. They all wanted to see what the neurosurgeon thinks and take it from there. I would rather honesty any day. As I have said above, my appointment with the neurosurgeon went very well so my faith in doctors has been restored... well for the moment. 

I have learned a lot since my initial diagnosis with Trigeminal Neuralgia. The most important thing is don't give up, and don't sit idly by and wait for a magical cure. I went to A&E when the pain spiked (well I was made go, but you know what I mean.) I sat in A&E and waited for hours and hours each time to get help, because that is my right. I nagged the doctors for appointments, and I often nagged their secretaries for cancellations too. The severity of my case helped push things along, but making the odd phone call, or sending an email can help. 

Don't sit at home in agonising and unrelenting pain. I know TN pain is agonising and never ending, but when the pain spikes, go to A&E if you can. Just because our pain is invisible, it doesn't mean we shouldn't have access to the medical care offered to everyone else. There are also going to be doctors and nurses who have never heard of TN, I simply tell them to "Google" it, and I tell them I have a huge file and give them my consultant's name. I get no more moronic questions after that. There are also fantastic print-out's that can be obtained online (not wikipedia, although it's fairly accurate). 

So I am hopeful at the moment, despite the scorching burning pain and thousands of shocks and stabs I have to cope with daily. 


  1. This post is so similar to my situation, I felt like you were blogging my story. On the one hand I'm relieved there is someone out there who truly understand, but on the other hand I'm so sad/sorry you feel this way too. It's not something anyone would wish upon an enemy.

    I too have a complicated, impossible to manage ATN. Mine is caused by a compression on the trigeminal nerve in an inoperable area of the brain. I've seen three neurosurgeons, ans my only option is the rare surgery of motor cortex simulation: a pain management surgery that will hopefully help dampen the pain, even though it can't cure or fix the actual problem. It has 50% chance of working, and if it does it might only work for a few years. As a 31 year old woman, out of options, I am taking the risk. You said it best, "I need to do something about the pain, I need to take a risk." insurance won't cover the procedure, so I'm crowd funding.

    I too have had endless, nightmare visits to the ER. I'm telling you all this to let you know you are not alone. I feel your paIn. I understand. We can help each other get through with words of encouragement. Wishing you the very best of luck with your procedure, and hopefully a low pain wait.

    -Lilit aka LeeLeeBot

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