[brochoParticipant]

Hi Everyone I was at clinic today and had a bit of a surprise !! Lately the back pain has become more frequent and more painful despite being on dex and velcade so at my last appointment radiotherapy was mentioned .This week I had appointments through for a ct scan and an mri scan , which I presumed was with a view to radiotherapy.However I was told today that after a team discussion where a surgeon from Stanmore Hospital attended they believe there may be a sugical remedy Apparently in cases where there is extensive bone damage like mine there can be small fractures in the spine which can best be seen on a ct scan So the plan is for the surgeon to review my scans and if he can help for me to go and see him–watch this space !!I was surprised to hear that this is not uncommon in myeloma as I hadnt heard of it before and I must admit the thought of another op does not thrill me but it would be great to get some relief from this pain .I am apparently a challenging patient ___who me? This is because it is almost impossible to monitor my mm by paraprotein or light chain tests Theres always at least one and its usually me !!Tee-hee love Bridget x ps they may stop velcade and bring my sct forward which would be good

[MinParticipant]

Wow Bridget
Your team are certainly on the button, Its great to hear your news, What would the surgical remedy be? did they tell you.
I dont know what damage you have, but I do know how with 5 vertibra crushed Peter is in constant pain.
It went away for a while after his 1st kyphoplasty but the pain returned 6months later. did not know then that this was due to further damage, which will be repaired on 9th Dec all being well.
Please keep us informed on what is planned
Good Luck
Min

[PerkymiteParticipant]

Well I wish you the very best of luck with it all Bridget, amazing what they can do I have attached an X-ray of my neck. My head is apparently held up by the posts yet you would never know to look at me I have a fully functioning neck – incredible

Kindest regards
David

p.s. I note picture 003 is in fact upside down you can turn it up the right way in your photo viewer.

[brochoParticipant]

Hi Min and David I have no idea yet wwhat type of sugery it will be ,but kyphoplasty wasnt mentioned so I assume it wasnt that ! I will keep you posted Min , I hope Pters next procedure sorts his pain out . David I am so jealous of your x-ray I would love a copy of my back x-ray as docs are usually in awe of the metal work which keeps my spine intact , (whats left of it !)It is amazing the techniques they can use now and I am so grateful they were able to keep me walking love Bridgetx

[TinaParticipant]

Hi Bridget,

Very interesting…I wonder what the op could be. Similar to Min, Patrick has five crushed verebrae & two have been "fixed" by vertebroplasty but he too has rcently been suffering with more pain although now in his ribs.
I remember Stanmore Orthopaedic Hospital very well I used to live close by – I attended when my dear brother fractured my arm in a play fight!

Best Wishes
Tina

[PerkymiteParticipant]

Bridget, Next time you go into hospital ask the Doctor if he can email you your ex-rays that is all I did and they were in my computer before I got home:-)

Kindest regards
David

p.s Do not forget to take in your email address;-)

[zasrsParticipant]

Hi Bridget

Good luck with the surgery,and i hope you manage to get a lovley picture of you spine:-D
love sarah

[strictlymyelomaParticipant]

Good Morning Bridget, i realy am slack in talking to people
Access to your pre existing X-Rays,CT and or MRI scans can be got from the hospital you had them done in, in my expeirience (ok so my spelling is not the best)it does cost money and that cost varies from each medical unit.
Contact your hospital X-Ray department, you will need you will need your hospital No and and approx dates when you had them done
if you had them all done at one hospital hopefully you will find that all pictures are on the one computer CD/DVDs
all the above should accessable nowdays
norman

[brochoParticipant]

Hi Norman thanks for the info I will go down that route if my doc wont just e-mail it to me Take care Bridget

[shirleyParticipant]

Hi Bridgett,i wish you lots of luck if you get to have surgery,and it'll be great if you were to get your sct earlier than planned too,good luck and take care Shirls x x

[KWilsonParticipant]

I had radio therapy twice on my back but no surgery but at the last treatment they said I couldn't have any more as I've had my 'ration' for that part of my body.

I've read that a lot of people have had surgery and been pleased with the outcome. Good luck!

xxxxxxxxxxxx

[GillParticipant]

That seems to be good news Bridget and I wish you the very best of luck. Stephen cannot be operated on because there is too much damage and so still relies on MST gabapentin and parecetamol. He has, by determination practicaly cut out the oromorph.

I do hope it goes well for you although the thought of further surgery must be daunting. Keep us all posted.

On a lighter note I did have a bit of a chuckle at the typo in the title of your thread:) especially after you posting about weight gain.

Love from Gill

[brochoParticipant]

Hi Gill hope you and Stephen are well Are you in snowy France or snowy England ? Do the french cope with winrty weather better than we do ? Like Stephen I rely on mst but the pain is increasing despite upping my dose and being on dex and velcade. My doctor didnt say what type of surgery they were thinking of and until the surgeon has seen the scan results he wont know if he can help me . His name is Sean Malloy and he is based at the orthapaedic hospital , London When I looked him up he does seem highly experienced and according to my doctor has a lot of experience with myeloma damage I will keep you posted Oromorph is the stuff of the devil I was only on it for a few weeks and used to fall asleep mid- sentence !!Mind you just lately I found myself wishing I had some for the breakthrough pain as it is getting quite bad love Bridget x

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