[jParticipant]

My Mum was diagnosed with Myeloma in 2005.  She has been battling Myeloma well until a few months ago when the collapsing vertebrae in her neck have started causing severe pain and discomfort.  She has seen specialists and they are not advocating the Kyphoplasty at present (until she is finished her current treatment) as the deterioration is severe.  Apparently the only feasible option is to break her neck and reset…  To try and relieve some of the discomfort she is currently wearing a neck brace.  However the collapsing vertebrae are causing pressure on her rib cage and as such she becomes very breathless at the slightest exercise (having a shower).  Her appetite is also greatly reduced due to the pressure on her chest / stomach.  Does anyone please know of anything that could help relieve this pressure on her chest, lungs and stomach.  Has anyone had any other successful treatment for collapsing vertebrae?

[SalParticipant]

Hello J,

I don’t know if anything I can say is helpful, but my husband had collapsed vertebrae in his neck last year (C6 & C7). At that stage he had not been diagnosed but, after a lot of investigation, a plasmacytoma in his neck was confirmed, and this has now progressed to a diagnosis of myeloma. He had been having treatment for severe back pain – physio and even acupuncture. Eventually he had an MRI scan and everything happened very fast from that point on. He was referred to a specialist spinal surgeon and had surgery within 10 days of the MRI because the surgeon was worried about the possibility of spinal collapse. He also had spinal cord compression, which was one reason the pain was so severe.

His first operation was last April, before diagnosis, and he ended up with two rods and 12 screws to stabilise his neck. He had further surgery in July, at the front of his neck, to insert a cage and bone substitute to replace the eroded vertebrae. He had to wear a neck brace at all times – even in bed – but has been able to stop wearing it in the last couple of weeks, after lots of physio.  It’s such a relief to see him without the brace and free of pain in his neck.

The neck operations were major ones, but they were carried out in a specialist centre and we knew the surgeon had an international reputation and lots of experience. We felt completely confident in his judgment and expertise.

At the moment my husband has a fracture in his lumbar spine but is on chemo and the orthopaedic surgeons don’t want to do anything. He’s coping with lots of morphine. Once he has finished chemo we will push to find out what can be done to deal with the latest fracture, but  his consultant hasn’t had the full report from the orthopaedic surgeons yet.

I don’t know whether they are reluctant to do anything to deal with fractures whilst other treatment is going on, but that’s what we are assuming. However, once we will be asking lots of questions once the full report comes through, and will ask for a referral to the centre where my husband had his previous surgery if the local hospital doesn’t come up with a plan.

I can only suggest that you push the hospital for more answers. What can be done to make your mother more comfortable now? What are the options longer-term? What are the reasons for saying nothing can be done at this stage? I do hope you can get some answerw, but more importantly in the short term, some relief for your mother from her pain and discomfort.

All the best,

Sarah

 

[jParticipant]

Dear Sarah,

Thank you so much for taking the time to reply, it is very much appreciated.  Would you mind divulging the name of the specialist centre and surgeon who treated your Husbands collapsing vertebrae?  Where is it located?

We have been asking all those questions you suggest at the hospital, and have been seeing an orthopaedic consultant, but I think they want my Mum to be finished this course of chemo before any further treatment is scheduled.

Wishing you and your husband well with his current treatment.

With kind regards,

Julie

 

[SalParticipant]

Hi Julie,

My husband’s surgery was carried out at the Nuffield Orthopaedic Centre in Oxford. They have a number of spinal specialists there, but his consultant is Jeremy Reynolds. Our local hospital felt that he needed a level of specialism they didn’t have, as their spinal surgeon was more experienced in lower spine.

I do hope you can make some progress. If my husband is anything to go by, the pain dominates everything and life becomes very difficult. He’s only 44 but wasn’t able to do very much at all. It was almost a relief to get a diagnosis and he has done very well after surgery.

Best wishes,

Sarah

[jParticipant]

Dear Sarah,

Thank you again.

Our local hospital cited a similar issue in that it’s specilaists were more lower spine orientated.  Mum is 66, and until recently, was very active.  Hopefully we can follow up on this to get her some pain relief so she can build upon her fitness and improve her quality of life.

You have been very kind and I wish you and your Husband well.

With kind regards,

Julie

[Anonymous]

Well, Some types of cancer can also cause a weakening of the vertebrae in the spine to the point where they may fracture. It is not uncommon for metastatic cancer that starts in another part of the body to spread to bones in the spine.

A compression fracture of the spine that appears for little or no reason may be the first indication that an unrecognized cancer has spread to the spine. Cancer or multiple myeloma should be considered in patients who also have hypercalcemia, otherwise unexplained anemia, weight loss, or proteinuria.

The first step in obtaining the best treatment is to get an accurate diagnosis of the compression fracture and the underlying cause of the fracture.

[mandyphillips41Participant]

Hi. I had a collapsed vertebrae T7 and I ended up having a Kyphoplasty operation. The minute I came round from the operation it was instant relief. It was definitely the best thing to do as 3 weeks later I had a stem cell transplant, without the operation I don’t think I could have done the SCT. It’s worth considering – good luck

[SIMSParticipant]

Hi, this is quite a late reply however it may be useful for some.
With regards to the calapsed vertabra, my husband had numerous callapsed vertabrae in his back, he has had 3 operation khroplasty? traeting a couple vertabra at a time, IT GAVE HIM INSTANT RELIEF!
We wished that we had gone for the operation sooner, as waiting just made him worse and the vertabrae calapsed.
To relieve the pain in the rib cage, you can have something made called a BOSTON BRACE,
My husbands back surgeon insisted that if my husband went ahead with the ops, then he should wear this brace as much as possible after, the purpose is to give you support aound your middle, its a rigged brace made to measure, my husband swears by it.
At first he was upset, when he saw it, however the relief he gets soon got him over that. He wears it at night time after work and at the weekend, even though he is not in total remission, has had the 3 back operations and has neoropathy he still manages to work, he says it takes his mind of it.
The boston brace is great, because your vertabrae have callapsed, this is why the ribs hurt, as they rub together, and you cant support yourself, the brace helps you support your self and keeps your posture, to its best, and helps to prevent you bending over further.. ask your consaltant about one, there worth it.And remember to try and keep a good posture..hope this helps

[chucklingteresaParticipant]

Hi everyone,

I do not have multiple myeloma but my husband does, he was In complete denial of the whole situation, much as he was when he had his quadruple heart bypass 11 years ago, he is now nearly 66.

he was diagnosed after spending 6 months in severe pain in his arm from Christmas, long story but eventually MRI scan done in a May, funny bone in neck as they called it, turns out plasmacytoma and C6 and 7 are virtually missing, biopsy showed myeloma, paraprotein level of 16, after now being in the middle of treatment with Velcade, thalidomide, dextramethasone etc we are now in the middle of treatment cycle number 4 and his levels at the end of. Treatment cycle number 3 were down to 2! So that was fab news and been reffered to Oxford for stem cell retrieval and transplant, appointment being on 10th October, when we will be in middle of chemo number 5!

he had no symptoms at all on first two cycles! then on second one it hit him like a lead balloon! had dizzy spells! unstable! tired and fatigued! this latest cycle! his legs seemed to hwve stopped working and he is in considerable pain with his feet inparticular, horrible taste in mouth! doesn’t want to eat much! he is completely exhausted all of the time! ai am too! having to do all the things he normally does around the house as ell as working myself albeit only part time since September due to the situation…..

sorry just needed to blurt this lot out! you all know what it’s like! is there a support group for carers for myeloma? I also have a brother and father with terminal cancer at the moment and am struggling to deal with it all, we have three children who are under 20 as well so that is difficult too…….thanks for listening!

chuck……..

[PerkymiteParticipant]

Hi Chuck, Sorry to hear you are going through it. I lost my neck vertebrae in 2009 to this decease. I was pulled of Velcade because of bad side affects namely PN. Went onto Revlimid and never looked back.

kindest regards – vasbyte

David

[jeff605Participant]

Hi, just got round to catching up on the forum, been off it due to several factors, the worst being my middle daughter suffering a bleed in her brain, and being whipped into the Queen’s Medical Centre in Nottingham, where she is slowly improving. Meanwhile, I’ve had a problem with my Stoma, which laid me up for some 10 days feeling awful. The very next day after this cleared up,( and the reason for this post ) I woke up feeling as though I had been hit across the back of the neck with an iron bar, resulting in stiff sore neck and the most horrible heavy head aches that feel as though they are coming from inside the top of my head. I am waiting the result of xrays, had to cancel MRI scan arranged for today due to the level of pain. Does this sound familiar to anyone? The heamo consultant didn’t assume anything, and is arranging various tests. I already have T11 T12 collapse and am waiting for a vertobroplasty op, missed the scheduled one due to being in hospital with a abcessed appendix, perforated bowel and peritonitus Busy time one way or another. Any advice gratefully received. Oh, and aren’t the nights long ! At least my Myeloma reading are staying stable after a small rise through all this.
Regards to all struggling through this disease Jeff

• This reply was modified 9 years, 7 months ago by  jeff605.

[jeff605Participant]

Well, talked to the G.P. tonight, as he put it the good news is it’s nothing to do with Myeloma. What appears to be is arthritis, which is present in most of my spine. What this means for the future in terms of mobility and pain, I don’t know. Very worried about it as both these factors are so important to quality of life. Ah well, just get on with it I suppose.
Best wishes to all
Jeff

[Author]

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