Who needs nerves anyway? Just freeze the bastards!

Ack, it’s been a while, hasn’t it?  (one of these days, I will *not* commence a post with words to that effect … )   I’d like to thank all the lovely people who’ve left comments and emails here and also over on Tux’s blog – I *will* get back to you all, especially those of you with questions/commiserations about ye lovely Ehlers-Danlos Syndrome.  It’s great hearing from people with the same issues … I’m just really sorry I have been so slack in returning your good wishes and answering questions, all of which have helped immensely;  I know I’m not the only person out there dealing with this stuff!

The past few months have been tough ones here at Otterkat – I’ve been pretty well chained to the bed in excruciating pain, attempting to keep the pain levels down with the usual suspects (painkillers, hot packs, cold packs, stretching, massage, positive thinking).  Even extremely high levels of pain killers barely kept things under control – and positive thinking becomes a little difficult when one is reduced to a sobbing, screaming, writhing mess, beating one’s head against the wall – and not in a fun way.  Hospitalisation was not an option this time round – I found the experience way too exhausting and depressing last May/June, and all the nurses/docs can do is give me more of the same painkillers I’m on anyway.  And then wake me up every half hour to tell me to go back to sleep. No thank you.  I’d much rather be in my own (admittedly dingy rental) flat, in my own comfy bed, with gorgeous and helpful husband and cute and fluffy kitty for company.  Why feel even shittier than I do already by going into a hospital ward?

Finally though I knew I was reaching the end of my resources, and that neither Tux nor I could not take any more, that the situation vis a vis pain was not going to improve – I was in a downward spiral and it was frightening both of us.  I made an appointment with my “usual” pain specialist/neurologist for another round of occipital nerve blocks and off we trotted to hospital (Tux’s presence was required as I was a bit of a zombie from all the meds and fatigue).

The neurologist stuck huge bloody needles into the left and right occipital nerves (found at the base of one’s skull) – yes it IS painful but oh it worked! – and then discussed the ever-fascinating topic of “what to do next”.  In past chats with this specialist he has been fairly cautious regarding procedures such as cryo-rhizotomies etc, which I appreciated because it meant he wasn’t one of those gung-ho specialists who do major stuff for the hell of it.  This time he was very emphatic that something had to be done; he was very concerned that I was in such pain, and taking such huge amounts of painkillers (huge amounts of morphine, actually, which is nowhere near as fun as it sounds – why people get hooked on oxyc0nt1n etc is beyond me because the stuff is VILE), particularly because I am “such a little girl”.  Most people would risk having their jugular ripped out if they called me “a little girl” – it’s something to be said for i) my general state and ii) the fact that I like and trust the specialist that blood was not spilled on this occasion.

So I was booked in for “a bilateral greater occipital nerve cryo; and bilateral C2 and C3 ganglion cryorhizolysis” in a fortnight’s time, then and there.  The nerve blocks were a success and the pain levels just plummeted over the few days after that appointment, and I was able to reduce my dosage of meds accordingly.  WHEW.  I felt human and was able to have a decent conversation for the first time in weeks.  Tux must have felt – well, I know he did, because he said so – that he’d got his Jules back, because she’d been away for a while.

I admit to feeling a certain amount of anxiety and trepidation (that is a word, right?) over the next couple of weeks about the procedure.  Basically it involves freezing the nerves – killing them.  They do regenerate within 12 months or so but the time period in which the patient has relief from pain varies – maybe only a few months.  It is not fun, and the risks/side effects associated with it run from being left with a totally numb head and neck, to quadriplegia (a very very small risk – pretty much zero especially with such a good neurosurgeon, but still a risk).  Mind you at that point anything was better than being a barely functioning screaming mess.

My big day arrived; off I went to hospital; stuff happened.  Not fun as I said (if you want the gory details let me know!) but not nightmare-ish either.  The having-to-wait-two-hours-while-dressed-in-silly-gown-and-slippers-reading-about-Britney-and-Paris was much worse.

I’d say – tentatively, as I don’t like to get my own hopes up – that the cryo-neuro-surgery stuff has been a success.  Pain levels are way way down (ditto my medication) and I don’t have any numb patches at all – amazing.  The “wound sites” from the needles, probes etc still hurt quite a bit, there’s extensive bruising and discomfort which makes getting a comfy sleep difficult, but that’s all really.  I’ll just have to see how things go but I’m pleased so far. 


Just wondering then if anyone else with EDS has tried this procedure?  I know lots of people have to have knee/shoulder/back surgery and I may well have to face that in the future, but what pain management treatments/procedures have you had?

* * * * * * * * * *

In other far more exciting news I have a baby niece!  My eldest brother and his wife had their second child on 13 February and she’s absolutely exquisite, very tiny with a sweet and calm personality but also very alert and interested in the world around her already.  And she let me hold her several hours without screaming once! (Only when her granny tried to take her off me, hahahaha.)  I love being an auntie – you can do all the fun things like taking the kids to the zoo, shopping for great toys, being a corrupting influence, and then hand them back at the end of the day.

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  • tux  On Monday 5 March 2007 at 5:59 pm

    Hand them back, cranky, over-tired and full of sugar…

  • Gail Falzon, RN  On Sunday 5 February 2012 at 12:12 am

    I too, am headed for the dreadful cryo procedure of both greater occipital nerves and was hoping to find someone like yourself who had “gone before” me-just to let me know. I’m facing spine surgery number eight (many thanks to all you tailgaters out there!!) I’ve been getting the nerve blocks since 95 but they only last eight weeks. How long did your cryo last? I have to know.
    I did turn part of this pain journey around to help others. After the wicked head injury and violent whiplash, they also talked me into having a complete reconstructive jaw surgery which I did not need. The pain was just as bad on the other side of that nightmare… so since I lost my nursing career anyway, I decided to go on a research journey to find out WTH anyway? I did find out the real “source” and am helping people all over the world get past the head, face and jaw pain related to muscle dysfunction. You can visit me at http://www.tmjpainsolutions.com.
    You made me laugh so hard when I Googled cryo and found you at the top. I laughed through your whole story. Although, not really funny, I can so relate girlfriend. I’m with you on the drugs. I can find no pleasure in that and certainly don’t understand why someone would want that poison in their body. Hang in there!
    Yours in health,

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