Enough

It's been a while, a long while. I should be grateful, but I'm pissed. Firstly, people told me about remission periods that TN warriors experience. I would tell them I am not one of those since I always have the beast around. Now, after two surgeries, one rhizotomy, many many many med options, I realise my remission has come and gone. My remission was not experiencing the type of pain I have the past few days, every day over the past 6 months. My remission was being able to work 5 consecutive days for a number of non-consecutive weeks. Now it's gone, and I am pissed off.
Granted, the knock on effect of avoiding chewing on my TN side = teeth messed up = avoiding dentists who have to work in and around all trigger zones; resulted in surgical removal of one tooth followed by removal of another in less than a month. Whether that's been the trigger that woke up this damn elephant, I don't know. All I know is that I reached the point of saying ENOUGH !

It could have been while I was lying awake at 3 in the morning working out the time allowed between med doses that I said to myself "I have had enough."

It could have been while I was crying in the shower because it hurt to wash my hair that I said to myself "I have had enough."

Or maybe it was when I realised none of my distraction techniques were working that I said "I have had enough."

It could definitely have been at the moment when I ran out of a full house on Easter Sunday to throw up in the garden thanks to the pain, that I cried "I have had enough."

No

It was hearing the fear and desperation in my daughters voice as she called for her Daddy in between my screams and her "Mommy are you okay" pleas. It was seeing him hold her and the helpless look on his face when he did after the attack had passed. That was it. That was when I reached the point of saying to myself, "They have had enough."

I can't do this to them again. I really can't. I know I can't help it. I know that no one outside our home can understand how bad it really does get, or how hard it can be for them. I just know that if this is the end of a not-so-blissful remission, I cannot be the cause of their emotional pain. I cannot be the reason for that kind of fear in my own child.

I just can't.

Who knows, maybe my elephant will get an itch and stand up for a few minutes every now and then. Until I know that for sure, I am holding my breath and hiding my pain. It's the least I can do for them. They have really had enough.
To my fellow warriors out there, may your elephant be gentle to you today.

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

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

Taking it as it comes

It's new years eve and as always, I have been reading messages, statuses and tweets all day about how awesome 2016 is going to be. I am not a pessimist,  but I am definitely  a realist. This means that if I am to be honest with myself, I will say it's been quite a hard year. In fact, if I am really honest, it's been a difficult year every year for a while now. Yes, there have been good times, successes and happy moments, but in reality, they have been in spite of all the other crap. Some may say I am too negative. That just by thinking this way, I am being ungrateful. I beg to differ, and since it is my life, I have a right to.

So what does this have to do with TN? Well, everything, actually.  If I wasn't a realist, I don't think I could have survived the journey that TN has taken me on thus far. I don't think I would have been able to avoid the depression that often comes with chronic pain, go to work when my pain levels were bearable or be the wife and mother that I am. If I didn't take things as they come, use my low pain moments to accomplish  things I couldn't the rest of the time, I would be in bed permanently,  in a mental health clinic, or dead. That, my friends, is the truth. I had to be realistic this year about what I could and couldn't  do.... even if it was something  as simple as opening the door on a breezy day. It is truly, in my opinion, the only way to live with TN.

So for 2016, I am not going to post a status that says it is MY year, I won't be telling the world that I will conquer it.... I will take each day as it comes. TN has taught  me that, if nothing else, and for that, I am grateful.

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

Post-surgical silence syndrome

Yes, I made that syndrome in the title up.....but if it was a real one, I think I could have it. This is something that I have been mulling over lately and, although I would have posted much earlier about it in the past to actually process these thoughts, have become quite convinced  that it is real.
In my previous post, Supporters Unite, I provided a reason, albeit brief, as to my blog-silence, as being a result of the guilt I feel at constantly  complaining. I was feeling guilty for really bringing the lives of those around me to a virtual halt due to my health needs. While I still feel that, some days more than others, I seem to have done what quite a few of my fellow TN warriors online seem to do after surgery. I have developed  Post-surgical silence syndrome (PSSS).
From what I can deduce, looking at posts by others and talking with them in support groups, talking with my surgeon, and quite often talking to myself, MVD surgery (endoscopic skull Base in my case) has many unexpected and seemingly benign results. The first one I experienced is fatigue like you would not believe possible, a tiredness that actually makes you feel like you're physically  walking at the bottom of a pool ALL the time, like everything is in slow motion and no matter how hard you try, you just can't come up for air. After 3 months, I still feel that fatigue all the time, and it's driving me crazy. My surgeon assured  me that part of the reason for this was the psychological toll that major surgery takes on you, especially when you have been warned of the fatal risks attached to that surgery.  Then, the skin changes, this I am basing on my own experience as well as that of my TN friends. I have developed acne for the first time in my life since having surgery, while not particularly traumatic, it is quite irritating to suddenly have a complexion that I didn't even have as a teenager. Finally, the emotional roller coaster, linked to the fatigue, I guess, seems to be the worst. I can go from being completely apathetic to almost biblical rage in a matter of minutes...that is by far the most difficult adjustment I have had to make; controlling my actions so that those emotions don't show outwardly.

Now, the PSSS, the actual reason for my post. I have become somewhat silent regarding my TN in comparison to the pre-op advocacy warrior that I was. Whether it is due to the fatigue, difficulty  with emotional control, guilt, pure  and unadulterated despair at the fact that a lot of the TN attacks have returned so soon after surgery....I don't know. What  I do know, and have seen from other very vocal advocates for awareness online, is that after surgery it seems that there are a lot more things going on in our lives than we care to share or know how to deal with, that the crushing despair at not having a miraculous healing  ( even though we went in to theatre knowing it was unlikely), the need to clarify that the surgery was a pain management  option  and not a cure 100000000 times.......
I don't know? What I do know is that I am still passionate about TN awareness, I still enjoy discussing every day things with friends and family, I am still passionate about my work; BUT somehow, my inner introvert was unlocked during surgery and I just feel like I am able to whisper but no longer shout out loud, figuratively speaking. So, like TN, I guess I have another hard-to-explain issue to deal with now, I have Post-surgical Silence Syndrome. Any expert advice is welcome..... then again, perhaps the elephant has shifted position and now plants itself firmly on my mouth?

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Supporters UNITE!!!

I have been VERY quiet on this blog for the past month and I wish I could say it is because I have been so busy enjoying every second pain-free since my surgery in August. Unfortunately, most of that time has been spent trying to explain to those I have come into contact with, especially at work, that the surgery was a pain management intervention and was not, and never could be, a cure.

I have also become almost completely riddled with guilt this past month. Not the guilt that I spoke of a while back "May the guilt be with you" in another post, that guilt that prevents you from giving in to the temptation to live up to the "suicide disease" nickname. No, this guilt is about me feeling that I'm always complaining, that I've completely destroyed so many good relationships and family activities because others have to consider my ability to function through the pain. This guilt is one where I almost feel like I would rather just keep my head down, be quiet and try not to make everyone miserable because I am in pain.

It is something I am really struggling with, especially after surgery. I have relief in the 2nd branch of the nerve, and it is wonderful. I am grateful for it. BUT. I still have the same pain I had before, only now it almost feels more amplified in the the 3rd branch of the nerve and in the ear. So yes, my silence has been a difficult one, and I suspect, one I will struggle to push past for a while.

This has also brought me to the title for todays' post. It is October 5, 2015, the 3rd international TN Awareness day and my Facebook timeline is almost completely teal!!! Granted, it is because most of my timeline is full of posts from fellow TN warriors, from TN support groups, etc. But there is also the odd post and shared post from personal friends and family, and this warms my heart. The awareness day this year is dedicated to the children who have to live with TN, contrary to what most of the literature says is the case. Children with TN, who are not believed, because they do not fit the criteria for TN patients with regard to age. The support from all the online posts and buildings lighting up teal in the US, Australia, UK and Canada are awesome, but I want to make special mention of those who support me.

I want to thank my family, immediate and extended, for believing me and supporting me with calls, hugs and lots and lots of understanding. I want to thank the friends, the true friends, who have not decided I am too high maintenance and still invite me over or come visit or call to chat. I want to thank colleagues and management who have taken the time to try to understand more about TN and who have provided me with the opportunity to work from home on a more regular basis so that I can function at a better level than when I was expected to work in the office every day. I want to thank my TN family, the ones who I can literally call on day or night when it all gets too much. I cannot and would not want to go on without all this support.

Sadly, there are many of the TN warriors out there who have NO support. Who have lost their spouse/partner because they can't handle the all-encompassing way this pain affects us; who have had their children pull away from them; who spend all day alone at home without a single person wondering how they are; who are physically, financially and emotionally abused by so-called loved ones.

My awareness day post is a plea. A plea for those who know someone with TN to support them. My awareness day post is a heartfelt thank you. A thank you that cannot be fully expressed for those who have shown support for me and many others.

My goal is to work towards an awareness day next year where more public awareness in South Africa is a reality, but for now, I will continue to #TurnTheWorldTeal, one post at a time.

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Are you better yet?

As children, we went on many road trips with our parents and I am sure that, just as my kids do now, my sisters and I often asked the dreaded four-word question: "Are we there yet?" *insert nagging voice here*...... As much as my parents, and now us as parents, dreaded that question, it was and is a natural question to ask. I am going from point A to point B, so naturally, I want to know how long will it be to get to point B, even if this means that I literally left point A, 2 minutes ago.

In the same way, human nature and society tells us that if someone is ill, there are two outcomes. Point B, in the case of illness, is either return to full health or death. It may sound callous, but that is just what we have always known and have come to expect.  Chronic illness messes with that concept though. I can definitely say that TN has completely screwed up that premise for me. I did understand the concept of chronic illness prior to this, however, I don't think I ever truly grasped the complete frustration of the person living with that illness and knowing that no matter how many times we ask "Are you better yet?"....the nature of their illness is that they are not going to get better. So to use the roadtrip analogy here....I think I've begun to experience the dreaded four word question now as, "Are you better yet" with the same frustration and, at times, annoyance.

I've stated the following in an abridged version on Facebook this week and have had a lot of time to contemplate how to write this post since I've had my surgery. I know I'm running the risk of offending someone, or maybe a few people with my opinion in this post. However, I will continue to remain true to myself and style of blogging about TN and present you with my reality, the truth with which I live daily.

It's now been 3 weeks since I had brain surgery. A few facts about it, in simple terms:

1. It was endoscopic transphenoidal surgery i.e. they went in through my nose to the skull base, drilled through the skull and then used GPS navigation, cameras and other tools to perform the surgery.
2. Surgery lasted 6 hours and the doctors removed quite a large portion of the tumor growing in a very delicate part of my skull. 
3. It is still benign, i.e. has not spread to other tissue other than the skull bones themselves, but is growing.
4. Scans on the morning of the surgery proved that the tumor was growing much faster than they thought, and putting pressure on the brain itself, regardless of previous treatment and that it was a good thing they went in when they did. 
5. They did not remove everything, there is still a portion of the tumor growing on the side of my head, the part they removed was in the middle.
6. The portion they removed was attached to major arteries and compressing at least 4 of the cranial nerves. With each pulse of the artery, pressure was being placed on the nerves, hence the random electrical shocks I was getting in my face and eye.
7. It will take up to 6 weeks for all the swelling to subside and full healing to occur after surgery, that is, healing of the tissue they cut through or on.
8. I will be needing more treatment to try and manage pain and hopefully the rest of the tumor (medication and possibly more surgery).

Now, getting to the point of my post.
In the past, I was jealous, insanely jealous, of those who were able to have surgery for TN. Because of this, I couldn't wait to have mine done, if only to be able to know that I had tried everything possible to manage my pain. This is not to say that brain surgery is to be taken lightly. It is one of the treatment options available to some TN patients, and has a good chance in many of them to provide up to 80% relief from pain for as long as 10 years. Note, it is not a cure. I was told by the doctors that I had a 50% chance of having relief from pain if surgery was to be successful, especially considering the location and size of the tumor. Not having it provide complete relief is not proof that the condition doesn't exist, neither is it proof that its' all "in our heads - figuratively speaking", as many TN warriors have had to hear post-surgery.

My emotional and psychological state right now, three weeks post op, is one of anger and frustration at the fatigue and pain I have been experiencing. Neither of which is helped by what seems to be the daily "are you better yet" questions I hear. The only way I can begin to answer that is to say that I still have pain. I have moments, like I did before, where it feels as if an elephant is head-butting me in the face, where I can literally feel a knife stabbing me in the jaw, where a fire-poker is stuck in my ear and being jabbed in and out over, and over, and over again.
I don't have electricity randomly striking me in the face, and for this I am grateful. I am able to tolerate, and therefore enjoy, kisses from my girls and husband on my cheek. That is about it.

I am struggling to understand how my honest response to people has been met with statements like "don't worry, I'm sure it is going to all go away soon", "oh, but I'm sure it isn't as bad anymore", "we continue to pray because we know it is going to go away" or " I"m sure once you recover fully from surgery you will be cured."  Perhaps it's that "Are we there yet" mentality. Don't get me wrong. I appreciate the support I get and the prayers offered up on my behalf. I love so many of the people who are truly caring and concerned for me. I do not doubt for one minute that most, if not all, of the comments are made with the utmost sincere belief that they are true to the person offering them. I am however feeling as if I am expected to say that I'm better. I feel that there is an expectation of the surgery having been a cure and this expectation is confirmed especially when I see the expression of confusion or disbelief on someones' face as I tell them that I still have pain.

Trigeminal Neuralgia, when caused by a compression on the nerve, leads to damage of the protective sheath around the trigeminal nerve. This is what causes the pain (think of an electrical cord with constant rubbing or pressure on the outer covering until the wires are exposed). Removing the compression is not guaranteed to remove the pain. That nerve has suffered years of pressure and as a result, damage. Medication may minimise pain by decreasing the random firing of the nerve (already proven not to work for me). Again though, all treatments, including brain surgery, are there to manage the symptoms of pain in TN patients, but it can't cure the condition. This is what incurable means. I am not being negative, I am not being ungrateful, I am not suffering from a lack of faith.....I am being a realist. Incurable, that is currently the label attached to TN as an illness. This means that I have had to change my understanding of what the outcome of surgery or treatment may be for me. It means I have to re-conceptualise what Point B is.

Point B may be coming to terms with adaptations in my life and then living in the moment. Point B is likely to change as the years go on. Perhaps I will try to take the trip as it comes. Move from Point A and just keep on moving, forwards, backwards, sideways....who knows.  At the end of it all, my TN Point B is not death or full recovery. I know that. I just wish, so desperately wish, that the chorus from the back seat was not constantly "Are you better yet?" I hope, beyond reason, that those not driving on my journey will try to appreciate that it is my journey and right now, there is no destination. You're welcome to join me for that journey, I love company, please just remember, no four word questions allowed.

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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