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.

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

HOPE, No ... Give me TIME

It has been a few days since I wrote anything, and with good reason. I have spent the past few days dealing with pain and disappointment of yet another treatment option not working by trying not to think about it at all, finding distraction where I can. This has me thinking about the word HOPE. I hear it on a daily basis now, " I hope you are feeling better today", "We hope that the new treatment or surgical procedure works", "All you can do is have hope and faith that it will work out."

Early on in the process of trying to find support online from others with Trigeminal Neuralgia, I found out that chronic pain sufferers use the word HOPE as an acronym, Hold On, Pain Ends.

Really? How?

How is this pain going to end? How can this pain end when there is no known cure or long term treatment, yet? When healthcare professionals question our symptoms? When we are treated as drug seekers just because we go from one doctor to the next to try and get relief? When trying to find help requires time and finances that we don't have anymore?

How am I supposed to be positive in the way I think about how my life has changed when those changes have forced me to give up on dreams and aspirations for my career, friendships and relationships? How can I hold onto HOPE when I keep on being shown the door as yet another surgeon or specialist says, ' sorry, there's nothing else I can do?'

Every time I have asked myself these questions in the last week, I think about something I heard. A short while ago, I watched an episode of "Grey's Anatomy" in which one of the characters has been diagnosed with a supposed inoperable brain tumor. Now I know that the medicine on the show is not exactly science and don't watch it for that, but rather as a show I really love. What hit home in the episode was a monologue by that character after being told that a colleague felt that she could successfully remove the tumor: "Can you name the single worst most malignant symptom of terminal cancer? It's hope. It's recurrent, and it keeps creeping back in no matter how many times it gets ripped apart … And every time the hope goes, it takes chunks of you with it, until you can only find comfort in the one thing that you know you can count on: that this thing is going to kill you."

Please DO NOT think that I am equating Trigeminal Neuralgia to terminal cancer.  The point I am trying to make is that HOPE, for me, is like that. It's the worst possible thing I could have right now. 

Do you know why? 

I have spent thousands of Rands seeing specialists, taking medication, having tests, having two surgicial procedures in the past year. With each Rand spent, with each doctors visit, with each test or procedure or new medication prescribed....do you know what came with that? Yes, HOPE. Now, after both surgical procedures have failed to relieve my symptoms, even for a single day, I can tell you that I do not have HOPE. I cannot Hold On until this Pain Ends. If I did, I would probably allow myself to sink into a serious state of depression that would allow me to reach the point of submission to my pain and ignore my guilt about wanting to end it all. If I continue to hold on to the HOPE that the post-op visit to the surgeon tomorrow will bring me anything more than a " well, I told you there was a chance it wouldn't work" coming from across the table...then I am an idiot. I would be an idiot to think that being HOPEful that this pain will end is going to be around the corner.

So now what? How can I get up every day and go about my life? Well, I don't know. I don't know how I get up and how I will go back to work next week. I don't know how I will find the strength to make it through the next bad attack. What I do know is, I'm still here. Even if the rest of the world (i.e. my friends/acquaintances/colleagues) has become tired of me sharing my story, of raising awareness, of 'complaining' about my pain....my family is still here. We have adjusted to a different way of living. We are pushing through the difficult times and emotions this causes for our daughters and for our marriage. I'm still here. I don't know how, but I am. 

One day, I know, I will again find the courage to fight and look for another option in my treatment. Today though, that is not going to happen. I need time to adjust to this new level of pain. I need time to deal with the fact that my HOPES have been shattered yet again. 

So with this I say, give me time. This Is Momentarily Excruciating, but those moments are coming in thick and fast right now. So give me TIME to deal with it. I may not respond to messages or calls, because it is hard for me to respond to a "how are you" with an " I'm fine/ok".  I just need TIME. 



 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