[keenParticipant]

Just want to know if anyone out there has had spinal surgery as a result of collapsed vertebrae. I am new to this site so maybe if I keep looking I might find something anyway. I was diagnosed last January and responded well to treatment, in recession after 3 months. My surgery delayed my referral for SCT so when I finally saw the specialist at Barts in London it was to find I can't have it at the moment as the dreaded protein has returned after only a year and I now have to embark on a second, newer,treatment, Velcade. Hopefully it will give me a longer gap before the next relapse. But what I really wanted to ask is if anyone has had the surgery (screws) and how long it took to recover full mobility and upright posture. I would be most grateful to hear. Sylvia from Wanstead

[GayeParticipant]

Dear Sylvia – I have had two operations on my spine, known as balloon kyphoplasty. The operation is done by keyhole surgery where cement is inserted into the collapsed vertebra. I was in overnight for both ops and the relief from pain was almost instantaneous as well as a return to my ease of walking and posture.

I am sorry that you have relapsed but if you are in pain now the thinking may be that the velcade treatment will work and hopefully your pain will go. I know other people on this board have found this happens and it has happened with me.

Good luck Sylvia. You are in good hands and I wish you well with your forthcoming treatment.
Love, Gaye x

[keenParticipant]

Gaye, thank you for responding and so quickly. I have read many of your posts today ( first time for me on the Forum) and feel very privileged to hear from you. Yes I was to have had the Kyphoplasty but unfortunately my condition deteriorated whilst I was having my first course or treatment so I had to have a more serious procedure involving screws in several vertebrae. I came out of hospital on the 5th day and had to wear a brace for 6 weeks, then a further 6 weeks when I went out.I have regular Physio and do exercises at home and whilst I know I am making progress it is very slow. The surgeon has told me it could take upto a year but I will get better. I suppose I just want to believe I will one day be without pain and be upright again but sometimes you just feel it is not going to happen. Obviously the fact the dreaded MM has returned in just under a year is depressing but I am a glass half full person, like you I am sure and am very hopeful the Velcade will give me a longer remission and hopefully no side effects. I was very lucky last time and have read with some astonishment some of the posts re the dreaded Dex! I just found I ate more but for me that was a good thing as I had lost 3 1/2 stone! Thank you again and good luck with your treatment, I shall be following avidly.Sylvia

[brochoParticipant]

Hi Sylvia sorry you have had a relapse after a short time , but lots of people have had great results with velcade ,hopefully it will be the same for you When I was diagnosed 4 years ago, after a year of agonising back pain, it was discovered 2 vertebrae had been destroyed and a third was also damaged .Before I could begin treatment for myeloma I had a surgical reconstruction of my spine This involved a series of titanium plates and screws being erected around my spine .The operation was over 5 hours long but successfull, there was a high risk of paralysis in my case. Within a couple of days I was able to walk a very short distance and I went home a week later Initially I wore a back brace to help with posture , though it was uncomfortable and I didnt wera it for as long as suggested. It took a few weeks to get over the surgery but even during this time I was walking unaided. I have been fully mobile since although I do need to take mst morphine for the pain and I am not able to walk or stand for long periods . I am just very grateful to the surgeon as without that op I would have been in a wheechair .If I have missed anything that you wanted to know let me know Best wishes Bridget

[KeithH17Participant]

Hello Sylvia,I ended up with a collapsed vertebrae just before being diagnosed in Dec 2007.
I was given RT before my Chemo treatment started Jan 2008 which did improve things after a period of around 6,weeks.
I suffered 2,months of agony after the MM relaspsed late last year and have just finished my first of 8,cycles of Velcade+Dex and did notice that within the first week of the new treatment most of the pain had eased off.
The consultant told me at the time of the collapse that they do prefer to try a non evasive procedure ie:-RT before going down the surgery route.
Excellent results can be achieved with this approach but of course it does depend on the Consultant and more importantly the condition of the patient.
Either way I do hope things get sorted out quick for you as all of us know how painful and Debilitating a collapsed Vertebrae can be.

Best of luck Sylvia…Keith.

[zasrsParticipant]

Hi All

As only a carer of a husband with mm, who has not had to suffer anything like you all have, spine ops etc, I am stunned amazed and privalidged that i communicate with you and you with me.

My very best wishes to you all and hope and pray that somewhere there is a miracle around the next corner for you all, and gordon!!

with love

sarah

[GayeParticipant]

Dear Sylvia – I am sorry I was a bit confused about your surgery and it all makes sense now. The balloon kyphoplasty is a doddle compared to your experience and of course Bridget (aka metal mickey, mother whale etc etc). I can understand your need to feel someway normal and I truly hope your treatment will bring that for you. Hold on to that half-full glass!

Yes, dex has a fan club here and reading Gill's story of Stephen is wonderful. High as a kite on dex I went out one morning declaring to the world that if anybody got in my way crossing the road I wasn't stopping. Fortunately they all behaved beautifully.

Sylvia I also attend Barts so if you see an old crone with a stick hunched up and muttering obscenities to all and sundry, that's me. Would love to talk to you but could you take the chance!

Love, Gaye x

[tomParticipant]

Hi Sylvia

Sorry to hear bout ur Relapse 🙁
I cant help re the op's as I haven't had any and hope to god I dont have to 😀 Just wanted to say Hi 😎

And Sarah, you are not [u][b]ONLY[/b][/u] a carer you are speical and needed 😀 as am sure Gordon could tell you.

As for My Young Bride (Elaine) she will tell you that she has been My Carer for over 35 years ha ha >:-)

And Gaye just had a picture in my mind of "so if you see an old crone with a stick hunched up and muttering obscenities to all and sundry," your words not mine ha ha, and that will haunt me for ages Lol xxx

Tom "Onwards and Upwards" xxx

[keenParticipant]

Hi Keith, thank you so much for your response. As with Gaye I had read several of your posts so knew you had started Velcade.I am so glad for you it has started well. How good is it when pain subsides! Long may it continue.With regard to my surgery I had no choice, I would have become more and more bent over apparently so it had to be done. So now it is just a case of keep doing the exercises and fingers crossed I get upright again.At least that was my priority till last Monday when I was told the dreaded MM had returned, somewhat quicker than I had hoped, just about a year. On that score I would be interested to know what gaps others have experienced. I know you went 2 1/2 years which was fantastic and if I am honest, more like I had hoped for. The irony for me is I was not really able to 'enjoy' my remission fully because of my spine and subsequent surgery. I feel robbed! not fair! and so on.Still as I have said I am a glass half full person so I have high hopes of the Velcade and your experience has encouraged me further.I was also very lucky with my first treatment including the Dex in that it didn't really affect me, so fingers crossed I can sail through this lot, with few if no side effects and a good outcome. Incidentally, and this may be of interest to others out there, I seem to be lucky in having an enlightened consultant in that I shall be having one injection a week for 8 weeks and having it sub-C not int-v as current thinking is both are just as effective and side effects are considerably less likely! So watch this space! Meanwhile thank you again Keith, good luck with the rest of you treatment and rest assured I shall be waiting for your posts. Sylvia

[keenParticipant]

Gaye what a delight you are! I almost wish I was returning to Barts just so I could run into you, two bent up old crones with sticks, what a picture!However on a serious note, as MM has returned I won't be considering SCT for the time being which was why I was there,nor have I agreed to Clinical Trials as I feel I need to concentrate on my recovery and getting full mobility and regaining my posture.Perhaps in the future in which case I would let you know as I would love to meet up.Thank you for your good wishes and I shall be following your posts with interest. Sylvia

[keenParticipant]

Hi Tom, thanks for the intro to this newby! If you read my reply to Gaye you will see how amused I was by her description too. She and I would be like 2 peas in a pod as I am a young 70 year old but bent!The Dex I had last year does not seem to have affected me as others have experienced so now I feel I missed out I could do with a surge of energy! We shall see what the next course does. Thank you again for your encouragement I am feeling most welcomed into the group. Sylvia

[keenParticipant]

Hi Bridget, thank you so much for your reply and from a fellow 'operation' patient. Yours sounds even worse than mine I am so pleased you have made agood recovery from that. Your info was very useful, I suppose my big question is were you bent over before you op and if so are you upright now?You say it was four years ago. How long would you say you were pain free from the op, all the other pains to the side?Sylvia

[tomParticipant]

Hi Sylvia

You are more than welcome 😀 and WOW 70 😎 am sure you and Gaye would have a great time at Barts, and run the Dr's wild ha ha.

Have a Good W/end 😀 and roll on summer 🙂

Tom "Onwards and Upwards" xxx

[brochoParticipant]

Hi Sylvia reading your posts it seems like our cases may be very different . I wasnt bent over at all before my op , other than stooping because of the pain As for the pain it didnt seem many weeks , perhaps 4 to recover from the surgery , however I have had continuous pain my back since I am not sure how much of this is due to the metalwork and also I have extensive bone damage everywhere except my left arm Sorry if that doesnt help What sort of pain relief are you on? Your consultant does sound very good perhaps you need a pain review. Since reading Gayes post I have been chuckling to myself just imagine if we all went to the same clinic!!Crikey what a sight that would be , but much more fun ! I have fingers and toes crossed this next treatment gives you a much longer break love Bridget

[keenParticipant]

Hi Bridget, thanks again for your reply. Yes it seems our cases are different. I do still get pain around my back, waist but it is hard to know how much is from the op and how much from MM so you just don't know what, if any will go, or what you are stuck with. I take 2 Cocodomol 4 times a day and anything upto 6x5ml of Oramorph depending on how I am going.Thank goodness it is seldom excruciating but like you I can't walk any distance or stand for long. I have to keep telling myself to be patient, after all I was almost a year crouched over and this old 70 year old body with all its probably non- existant muscle and ligament tone , is going to take a lot of time and effort to recover. I cling to the image of my surgeon leaning forward and saying 'you will get better' So, yes in Tom's words onwards and upwards and roll on Summer. Just a by word to Gaye if I may, we seem to have conjured quite a picture, us two old biddies with our sticks!Now we have a mental picture to include Bridget, how far can this go?! If it raises a few smiles then that's fine by me. Keep smiling all of you, and keep in touch.Your care and encouragement is like an additional treatment, with only good side effects. Love Sylvia

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