Hi, don't give up.... it took me what felt like forever to get a definite this is what you have..... in fact nearly two years and move to a different county!!!!.....
What are you taking for your pain?..... have you tried heat? a warm hot water bottle works, a tens machine is also handy.. I find the cold makes my pain worse so this time of year really isn't great for me, likewise cold water sends a spasm through my back, so I cant go swimming any more...
Because there is nothing to see to give away what is happening a lot of people don't understand it.. I get really down days especially since my latest mri scan, I now have a problem with every section of my spine... I'm trying really hard not to let it get me down, I'm thankful for every day I can do stuff...

hi misshamp thanks for your reply I,m sorry to hear that your bad to people just don't understand it do they? the pain is unreal I also have ankylosing spondylitis so I,m in constant pain all the bloody time I take zomorph,oramorph,and gabapentin I,m on a very high dose of the zomorph aswell and nothing takes my pain away its terrible what are you taking for it? and are from the uk like me hope your better soon and I,m thinking of you

skye xx

Hi Skye1971, at the moment I don't take anything for it. in the past I have tried various different tablets mainly anti inflammatory due to old doctors not understanding the condition. I was starting to take tramadol more and more... then I found heat worked for me for some reason and I had a tens machine which was a gods send. now my pain is going upwards, I had a repeat mri in September to see what my pregnancy had done to my back( I had a full spinal plus the dye mri) during my pregnancy I didn't take anything, and my back felt great, now that everything has settled down things aren't great. I got the results of the mri and I now have a problem with every section of my spine... on a bad day or a wobble day as I call it my legs hurt and I walk slow, it hurts to sit and lie.. when I told the midwife what I have she asked what it is... then I ended up seeing a maternity consultant who admitted she had to look it up, I had to see about a general or spinal block.. I met a spinal consultant who said I could have a spinal block for the c section as a natural delivery could put a lot of pressure on your spine, I had a spinal block as he said the pressure of coming round and coughing with tubes down your throat could be as much pressure as a natural delivery... the spinal consultant gave me his direct line.
yes I'm in the uk

Hi Skye. I have SM caused by Chiari malformation. I had the Chiari decompressed in 1996. Pain got so very bad. But now I have a spinal cord stimulator that really helps the nerve pain. After my trial SCS my doc asked me what had I been doing with the trial SCS that I wasn't doing before. I thought a second and said "smiling". Seriously, I hadn't smiled for three years. It's a wonderful thing to be able to control my pain my own self.

You might ask your doc what he/she thinks about SCS.

Gentle hugs.

hi guys sorry its to to long to answer you ive been really bad I used to take anti in flammatorys and the tramadol with the morphine wasn't to bad but now I have blood clots D,V,Ts in my leg all the time and im on anticoagulants for life now so I can know longer take anti inflammatorys again I cant even have heat sprays not that there any good its just that nothing seems to work for the pain ive got my doctor to refer me to a specialist who only specialises in this which will be better for me I hope and he,s from Walton Hospital which has the best there and have the best specialists,and the best neurologists in there so fingers crossed I,m waiting for my apt now my DR.has put it through as urgent for me so hopefully wont be to long and I can let you all know what happens.When is your baby due misshamp?and is it your first love I,m well overdue for another mri scan and a full spinal one at that.due to the ankylosing spondylitis I,am pretty much bed bound and have been told that I will lose the use of my legs one day but they cant put a time on it,it will just happen I,m told as all of my spine is knackered completely I walk with a stick from the bed to the bathroom for shower etc but have wheelchair when I go out I,m in a bad way they say I don't have a chiari keeska but I think I have one now if its possible to develop later on maybe you can tell me keeska if this is possible?sorry this is so long guys I,m just ranting on a bit I,m so down and depressed right now can I get a tens machine off the doctor or do I have to buy one?as I really don't know anyway I,ll shut up now guys I hope you can forgive me for going on so much and so long I hope you both are not to bad but please feel free to rant to me anytime I,m here guys and thanks for reading this hope you have a great xmas.

Love From Skye1971 xxxx