pain

[bonney]

It's been just over 18 months since op T2-5 spinal AVM- did not fully comprehend all that was happening - after experiencing massive chest pains, head pain and almost instant paralysis -rushed to hospital- diagnosis came within a few hours - really did think my number was up. Anyway 10 days of tests etc prep for op - what chance, can't recall now but given the choice between paraplegia and the chance of walking again took the latter. Day after op early morning visit by team of doctors . Q? could I move my big toe? predictably my mind wandered to all medical series I'd seen and here it was happening to me. All my mighty effort and YES that big toe moved ever so slightly! 12 more days in hosp then home - wheelchair bound - catheter tubes and all -moving around like a sloth dragging my right leg like a great lump - dull mind - angry- frustrated and all the rest. 15 months of physio - managed to relieve myself of the catherer after 4 months - though bladder/bowel situation not perfect certainly manageable.
Found friends help forthcoming in the first 6 months or so then petered off - now never see anyone - I guess they all got tired of helping - miss the intellectual exchange mostly- My 26 yo daughter is my carer - and though she's been great in last few months its obviously taxing on her emotionally. I do pretty much everything - housework - cooking - laundry- need help with pushing shopping trolley and find it extremely tiring if I have to go out anywhere - so tend to stay home. Thank G for the internet. My health condition has caused me to become alienated - seperated weird? I rarely mention it - and anyone asking why I limp and look in obvious pain I just say its a birth defect - found it pointless trying to explain - the glazed over look people give is enough to stymie conversation.
Can't abide self pity - though it may not seem like that given what I've said - but feel comfortable enough to share it among fellow sufferers of this condition.
My greatest difficulty is in dealing with the pain - never one for pills or the like -have to resort to pain killers just to get through the day- do take myself off them for short periods a week or so - but it gets to the point where I need a break from the relentless 'heaviness' of my body. Does anyone else experience this?
Specifically weakness of my left leg - can walk -have to laugh at myself when reminded of John Cleese the english comedian who did a skit of 'silly walk' well that's me. I take the dog out for a walk - at least this forces me out of the house and the exercise - and fortunately she likes to stop and sniff frequently so as a pair we do OK. It's the middle bit (abdomen) that's stiff and seems to have a life of its own - and my shoulders, arms loss of strength - surgery related to a degree - and the top centre spine and muscles around that are a veritable pain in the back - plus referred occassional pain in my left elbow and right sciatic nerve-
Now I've got all that off my chest - I keep myself as active as possible - truly I hope I haven't lost too many brain particles reasonably high IQ 120 or so. Was in the final stages of a masters degree with the view to PhD when AVM made itself known - don't feel I'll ever be able to complete what I had hoped for - anyway in the meantime have written 2 books, published one and hope to find a publisher for the other one day. Both non fiction about child welfare institutions in Australia - Forgotten Australians and Child Migrants- a disgraceful history in this country and one which I experienced first hand.
Would like to hear whether anyone else has problems with pain and how they manage- everything on the net concentrates on the medical side of things not on how to manage afterwards.
Thanks Steve for putting up the site and for sharing your story - knowing that you're not alone does matter.

[traci]

Hi my name is traci and my 12yr son joey was hit with this as well. I am glad you shared your story for now i know he is not alone. he was paralized from the waist down had surgery and 2 angiograms and is walking with a walker but complains of tingling and pain in right leg, his is massive and we are not done with trying to stop this thing that has invaded his spinal cord. Keep me updated with your progress. I will try to post updates as well.

thanks
Traci

[kennyb]

Hi Bonney, this is Ken.
It is now a year and a half after my surgury and I havn't recovered at all. I still feel the same as before the surgury. The Dr's told me that they would guarantee I wouldn't get worse but not that I would ever recover.
I live in constant pain also. I am not one for pills but my dr has put me on gabapentin. It hasn't helped me any.
I am about 20 % of what I used to be, and like you I walk with a limp. Sometimes I drag my left foot. I shuffle around. I have to laugh at myself because one of my pet peeves is people that don't pick up their feet and now that's me! lol
I wish you all the best.
Ken

[GOP]

Hi everyone, this is my first post.
I found the site when completing a survey for people with neurological conditions organised by MS Australia.
It asked what peer support I had which I did not have, so I thought I better look for one. I'm glad I did.
Prior to that I was investigating pain management which I guess most if not all people with an AVM have to deal with to some degree or other.
Since I have lived with my tangle of veins for almost 20 years I felt that I might be able to point Bonny in the right direction.
If, however, you already know the information I apologise but others may also find the links useful.
It is basically Australian but applicable all the same.
http://www.chronicpainaustralia.org/
RN Australia Talks - 17 February 2010 - Chronic Pain
All In The Mind - 30 September 2006 - It hurts: the elusive nature of pain
Listen online or download the audio
also http://www.painsupport.org and there is a link to Pain Management clinics in your state.
It has useful information and a forum like this one.
I thoroughly recommend the book 'Manage Your Pain' by Dr. Michael Nicholas available from your local library, ABC shops or online from Amazon new or used from $2.96. Plenty of good info in there to start.
Also there is the ADAPT Pain Management program at the Royal North Shore Hospital Sydney upon which the 'Manage Your Pain Book' is based.
It is a two or three week course and helps you manage and get on with your life without the need for medications wherever possible.
Interstate attendees can stay nearby in inexpensive accommodation provided by the Cancer Council.
Someone else referred to Gabapentin (and its successor Lyrica) which did very little for me and just piled on the side effects of the other standard medications for the condition such as Baclofen, Clonazapam, Tizanidine as muscle relaxants and various combinations of anti-depressants for pain management.
I would suggest anyone try to minimise pain killers where possible or try them and get off them as soon as it is obvious that the benefits are outweighed by the inevitable side effects - usually cognitive impairment.
Bonny if you have got this far with the study don't give it away.
It will give you a reason to get up in the morning and there is nothing worse than regrets when looking back and saying I wish I had continued.
Pace yourself and do as much as you comfortably can each day.
If it takes a little longer so what!
Very important, as far as any of my medical suggestions are concerned -speak to a medical practicioner you really trust and can relate to.
I hope that helps.
Good Luck