Health Update: I don’t have a tumour

Rathke Cleft Cyst

25 June 2011 was a long day. First up we had the MRIs of George the brain blob.  MRIs are very noisy and probably one of the worst tests for someone with noise-induced migraines.  Lets just say the technicians and I got through it, eventually.

A few hours later we saw the consultant neurologist with the newly minted MRIs and to report the failure of the Botox to stop the migraines.

When he saw the MRIs and read the report, Dr Andrews did a double take. For a very stoic man of few words, his surprise was quite evident. I have to admit, both mum and I nearly panicked until he calmly announced “You do not have a tumour, you merely have an aberrant genetic mutation. Been there from before birth. Non-cancerous. Will never become cancerous. Will never grow. Is not related to the migraines. It’s just a part of you.”

Say what?  All day I have received texts and tweets wishing me “good news” on the tests today.  As mum and I discussed, I didn’t know what good news was. In some respects I wanted the tumour to be dormant and the same as last year but in other respects I wanted it to have grown and changed so at least I could have something to point to as the migraine research seems to be leading nowhere.

However it seems I did indeed receive “Good News”. I don’t have a tumour at all.  The relevant section of the specialists report reads: “T1 high signal likely represents proteinaceous material favouring a Rathke’s cleft cyst. A cystic pituitary adenoma or craniopharymgioma is less likely.

Mum and I did some reading of Rathke’s Cleft Cyst on the net and it appears that although in some rare cases it can still be related to headaches, it is usually when accompanied with other endocrine disturbances. As I have no other endocrine issues, no benign intracranial hypertension, this is considered no to be the cause of my migraines.

Summary: I don’t have a tumour; I am a mutant. So where are my superpowers?

So back to the migraines.

We’ve gone through the most successful drugs. We’ve tried the 80% success rate Botox. So I’m not the normal, and I don’t fit into the most popular categories (Oh my god it’s high school all over again!).  So now its a case of mix and match the drugs until we hit upon a combination that actually works for me (as opposed to most people).

So Dr Andrews has left me on the Isoptin and the Topamax but has now added in Deseril.  As the Pharmacist said when I presented the script “going through the back catalog now, huh?”

It’s not been a week on the three drugs and the first week is always a weird week so I do apologise for not being around (except on Twitter) for the last week or so. It’s also been a weird week emotionally. There’s the elation that I don’t have a tumour in my head. There’s frustration that the fuckwit Perth specialists stuffed up and led me to believe that there was a tumour in my head for 14 months!

And there’s still so much frustration that these drug combinations are still all preventative.  There’s not one damn thing I can do once the migraines are triggered. Nothing touches the pain. Nothing stops the pain. And there’s nothing I can do to tell a person to stop whistling, to shut their damn toddler from yelling (hell most parents encourage it!). If their baby screams, take it away! But no, I’m the one that has to leave.

I know that sounds whiney and self-serving and well that’s because it is.  As you can guess I started the post relatively pain-free and as time went on, the pain increased (a lot) and my ability to find my words decreased (a lot) and my frustration levels increased (a whole lot). So now I just want to hit post, and be done with the thing so I can forget about it and go and cradle my head and cry.

On the bright side, I don’t have a tumour in my head.  The genetic mutation is not likely to be the cause of the migraines and the next combination of drugs might help.


EDITED NEXT DAY: I need to clarify a point that I so badly muddled above.  None of the usual migraine medications Imigram etc touch my migraine pain. Also being allergic to Codeine, I cannot take many of the strong pain-killers, Pethedine for example. So when the migraines strike, (every day or so) there is nothing I can take to mitigate the pain.  I just have to ride it out. This is why all the drug therapies Dr Andrews is working on are preventative.

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6 Responses to Health Update: I don’t have a tumour

  1. Tempewytch says:

    I’m glad to hear you don’t have a tumour (but grrr to the Perth specialist!), here’s hoping they find the right mix of drugs soon

  2. kay jones says:

    Its great that there is no tumour but a bugger that they cant control the migraines. I can see why they want to prevent the migraines but they obviously dont suffer from them and know just how debilitating they are.

    If the drugs still aren’t working when you go back ask about treatment for the migraine as well as preventing them. I’d offt=er you some of mine but they couldn’t be taken with the Deseril so thats off. Thinking of you hun.


  3. Mel says:

    Morning all, I do apologise on how that last post ended. You can see how I haven’t communicated much lately. I start with good intentions, the pain and frustration sets in part way through and I go “bugger it” anf chuck the post instead if send of sending something that ends up soundng this whiney. Blog posts, long emails, all seem like too much work 😦

    Anyway – sorry 😦

  4. rocalisa says:

    Yay on the no tumor thing, bummer on the rest.

    I wish I had wise or comforting words to offer, but I’m afraid I don’t. I’m sure you’re not interested in platitudes. But know I’m thinking about you and I worry about you.

    I really hope this new drug combination helps.

  5. rocalisa says:

    P.S. I think you’re allowed to whine a bit. Constant migraines give you permission.

  6. OMG I’m so behind on my replies.

    Yaaayyy, no Boooo, no yaaayyy. No…ummmm…little yay.
    There is nothing in the world more soul crushing than chronic pain, so you whinge to your hearts content girly-girl, you’ve earned the right.

    I need to have a chat to my Dad (ex-pharmacist) anout pain medication for the codeine challenged. I’m allergic too, but I know that Dad suggested something. It’s prescription only and you tend to need to ask your doctor specifically, but I’ll see what I can do.

    In the mean time…No tumor!!!! Yaaayyy.

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