Believe me..... no really, BELIEVE ME

It's been months since I have written anything but I know if I don't write this down now I will most probably end up crying myself into a flare.
In the first 4 months of this year, I have been trying to take a different approach to my life. I have tried to focus as much as possible on my family, my work, my passions. I have tried to ignore the increasing pain frequency and intensity over time. Even on the bad days, and there have been many, even on the frustrating Dr appointment days, the days where I am stressed about the cost of medication, the days when I am heartbroken at missing out on spending time with loved ones....yes even on those days I have tried to work with my TN instead of fighting against it.

Now I am tired. I am so incredibly sick and tired of it all. I have been tired for a while, but that proverbial last straw made its appearance today in the form of communication with one of the doctors I have seen recently. I am surprised, to be honest, at how much this has affected me, since it's not the first time it's happened in

the past 3 years, but it hurts like hell to basically be told that you are lying about your symptoms. It cuts like a knife to be told that your scans do not show how you could be experiencing pain that feels like a knife being stuck into your ear and jaw at random on a daily basis. It crushes the soul to be told that the crushing bone pain you say you feel can't be so, even though there is a valid and proven bone-related diagnosis. It truly is a slap in the face to be told that the lack of red flags on a scan mean that your symptoms of pain in your face are not real.

I still have two, out of the many, doctors who believe me. One is possibly willing to repeat the surgery she did last year in a effort to provide a little more temporary relief....I know that I should be focusing on that right now. Seriously though, the psychological and emotional pain of the reality that is the medical professions' disbelief of those like me, is quite honestly overwhelming every time you experience it.

Today that elephant is at least a ton heavier, I hope that one day soon it will lift itself just slightly and give me a freaking break.

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

FAR from normal

I've been avoiding this particular post only because I am trying to figure out a way to write in as positive a manner as possible, while staying true to my realistic approach to life.

I am FAR from normal. Yes, I know that normal is relative and honestly, normal can be boring for many people. I'm FAR from normal because right now I am filled with Fear, Anticipation and dreading the Risk of what I'm about to do to achieve a sense of normality. Normal in the sense that I want to be able to open my front door when someone knocks without first having to cover myself up like a mummy and literally hide behind the door when I open it. Normal in the sense that I would like to work Monday to Friday without a second thought and definitely without the pain and fatigue that results from doing so. Normal in the sense that intimacy with your spouse isn't a complex series of avoidance of touching while all you want to do is hold each other. Normal, normal, normal.......

In a few days time I will be going under anaesthetic for a surgical procedure called Transphenoidal Endoscopic Skull Base Surgery.  

In this procedure, the skull base surgeon (an ENT who has specialised in skull base surgery) and the neurosurgeon will go into my nasal pasages and cut through to the base of my skull. Using a GPS navigation system, they will carefully work on removing the tumor piece by piece over a minimum of 6-8 hours which has slowly been taking over my skull base and is thought to be the reason for my TN and other cranial nerve pain. The tumor is full of blood vessels and located adjacent to my brainstem and carotid artery, not to mention the other nerves. So, according to the doctor, they will literally have to move a maximum of a millimeter at a time and remove a piece of tissue, stop the bleeding, and then move on and repeat.  This particular surgical technique boasts impressive recovery times and minimal risks when used for removal of pituitary tumors. Obviously, mine is not a pituitary tumor, or in fact, one which any of these surgeons have removed before. I guess there always has to be a first time for everything.

I have a 50% (optimistically) chance that it will work in terms of helping with my pain. There is also the risk of complications. Honestly though, I am accepting this risk with the support of my family because there really is no other option. 

This got me thinking, for all the TN warriors out there who consent to surgery, we are all plagued by the fear, anticipate the potential relief and acknowledge the risks involved. Brain surgery is not something to laugh at, as with any surgery. However, when you are in this much pain, you honestly would pay a guy on the street corner to cut off your face with a chainsaw in the midst of a severe attack. I for one am grateful that technology has advanced to allow for this endoscopic surgical technique, as, in the past, skull base surgery would require literally removing a part of my face and lifting the brain up in order to get to where this particular bony tumor now sits.

Funny how TN patients can talk about brain surgery as if it is a trip to the dentist and vice versa. Strange how many around us do not realise the magnitude of the actual decision to do this and the utter devastation we feel when we are denied surgery by so many doctors. 

I don't know if it will work. I don't know if this is the last time I'll go under the knife, though I know that if it doesn't result in any relief, I will most probably be willing to go for any other procedure available. And that, my dear friends, is how desperate this disease can make you. How absolutely ridiculous it can sound to us to hear someone say that we should learn to make the best of it for the rest of our lives and NOT go for risky surgery. 

An so, I sign off today while reminding every single one of my fellow warriors.....Do Not take no for an answer. Keep searching for a doctor or team of professionals who realise the importance of achieving a sense of normality, a team who will walk down the path with you to the point where you are happy to be able to say you have done everything possible to deal with the hell TN has put you through. It may be surgery, it may not be. Whatever the case, keep fighting until the Elephant on your face becomes an addendum to your story and not the introduction and conclusion.





There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader

Dear Dr X - an open letter to health professionals dealing with chronic pain

Dear Doctor X (insert other health professional as it applies)

Today I feel that I need to let you know what is on my mind. I studied and worked as a health professional and still work in that field, albeit, in education now. So before I say what is on my mind, please know that it is done with respect and a certain level of understanding of your world.

As students, you are taught the physiology and anatomy of a disease. It is impossible for you to know everything about every illness, I know that. You did however, I hope, enter this field to help bring relief to those in pain or poor health. You do this, often under difficult circumstances and with a very tired mind and body. If I may be as bold as to offer you some advice, please let me do so:

1. A patient with a chronic, rare, incurable disease needs understanding. That is a fact and imperative if there is to be any success in treatment. You may not ever truly understand the pain that this person is experiencing, and I sincerely hope you never do. But please try and understand the frustration and despair that they enter your office with.
2. You are intelligent and well educated, but that does not mean that you can assume you know exactly what all the symptoms are of this disease. It does not mean that because you were taught that chronic pain conditions may be psychosomatic, that this case is that. It does not mean that because this patient does not fit into the textbook picture of the disease, that they do not have it. Do me a favour, use the technology available to do a quick search on the research going on out there on the disease. It will help your patient to know that you are interested in finding out how best to help them way more than if you say "I have been practicing for years and have not heard of that symptom," OR "Because you don't respond to the medication decided upon 20 years ago, there is NOTHING else I can prescribe."
3. On the subject of research. Please understand that thanks to technology, many of the patients you see with these conditions, have done a lot of research. Please refrain from being condescending by assuming I am using WebMD and Yahoo Answers to find out information about my illness. I am not an idiot. I am not gullible. I look for scientific studies on a daily basis, hoping that today will be the day that someone has published a new treatment option. I am not alone in this, MOST of us do this. You may find that your patient will come to you with those studies in their bag, but unless you seem open to finding out new scientific information, that research article that was printed out, will walk out the door with the patient.
4. We are, generally, NOT drug seekers. Asking you for a prescription for a medication that has helped in the past, or helped someone else that I have come across with the condition, does not make me a drug seeker. Yes, many of the drugs we can take do have addictive possiblities, but that doesn't mean you have the right to say to me : "No, that is very addictive and WILL NOT help for your pain" and walk away. It is hurtful to hear and adds to the despair. Perhaps you have another treatment option as a suggestion. If not, please read no. 2 in this letter.
5. Your comments about maintaining quality of life to a patient who has had the rug pulled out from under them in a heartbeat is appreciated. Please though, try to understand this. Just because I am still employed or am able to look after my family does not mean that I have the same quality of life that I had or that I believe I deserve. My visits to you and many others in your profession are part of my life. As a result, quality of life for me includes the quality of care I receive from you. If that is not at a high level, if I am not longer able to work with the same efficiency I once did, if my kids have had to grow up way before their time because I am not able to do what I did for them......then I feel that I do not have a good quality of life. So to those in your profession who say " I can't do anything more for you, let's try to maintain your quality of life", please understand exactly what that means.
6. Finally, it is unacceptable, completely and utterly, unacceptable, to expect that you know more than I do about my own symptoms. Symptoms, by definition, is a subjective thing. There are signs of an illness that are objective, but only I can tell you what I am feeling. So please, I am begging you (and I've actually used these words), when I say do not touch my face to 'check my sensation', don't do it. It is excruciating. If I was able to put up with it, I would rather have my daughters kiss me on the cheek....that is worth it. I would rather have my husband stroke my face, but when you decide that you're not sure if what I am telling you about my body, my symptoms is true and you then decide to elicit the exact symptom that I have just described to you as being unbearable, don't act all surprised when I scream, cry and attempt to inflict pain on you with a slap or a kick.

Dr X, I sincerely hope that you take this in the light with which it is written. I appreciate your compassion and care for all your patients, including me. I understand your frustration at not being able to provide a quick fix for me. If you are still around and willing to be my physician even after you're out of ideas and are simply able to manage my care with follow-ups to ensure my records are up to date, I applaud you. Believe me, we go through so many of your colleagues because they simply show us the door when we are too complex for them. 

There is much more I would like to say, and I am sure that I will find the words and courage to do so one day, but for now, Dr X, thank you for your time in reading this. I sincerely hope that if there are other doctors reading it, that they are some of those who DON'T need to read these words and that one day you will also say, 'that used to be me.' Also know that it is my goal to spread awareness about what chronic pain, specifically, Trigeminal Neuralgia does to a person, so I will stand by what I have said here. I will also be working hard to change the minds of the medical insurance companies and my colleagues in the way we educate your future colleagues - So, I am not only targeting you.

Sincerely

Lianne

There's an elephant on my face by Lianne Keiller is licensed under a Creative Commons Attribution 4.0 International License. Subscribe in a reader