Because of multiple myeloma, I've loss 5 inches of height due to compression fractures. I've attempted to research this site plus many others and cannot find an answer to my new normal. I have the appearance of E.T. (I know it sounds funny ) in my torso and have not been able to workout due to the extreme bone pain.
I'm having 2 MRIs this week to see if more can be revealed and, based on results, will consult with my neurosurgeon.
I wonder if others have had the experience and have any advice to help me move forward.
Thanks in advance!
Kully
Forums
8 posts
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Loss of height causing severe pain
Hi, yes, my Dan has lost a lot of height since diagnosis 2 years ago. No chemo has worked and he is back on Revlimid / dexamethasone / cyclophosphamide [Cytoxan]. He is in severe pain all the time, dispute all the pain meds. Shooting / burning pain down his left leg, stabbing headaches, and generally pain all over. Really hoping that pain will ease soon.
Horrible myeloma, it's relentless. Hoping you can sort pain out soon, sending our best wishes.
Horrible myeloma, it's relentless. Hoping you can sort pain out soon, sending our best wishes.
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wanda and dan - Name: wanda and dan
- Who do you know with myeloma?: partner dan
- When were you/they diagnosed?: 41
- Age at diagnosis: 41
Re: Loss of height causing severe pain
I have lost my T4, its completely gone and my T5 and S1 are in pretty bad shape, and I only lost an inch in height. You must be in agony. Without pain medication, I find it difficult to breath, let alone move.
I have noticed that the Haematology team are not as concerned about the bone damage as they are about the cancer, but from my point of view, considering the fracture occurred after my diagnosis, had the bones been treated first I would be much healthier and better able to face my cancer treatment than I am now. There is the distinct possibility that, even if I achieve a complete remission, or am by some miracle cured of the cancer, I will never be able to work again due to the orthopaedic and neurological damage, not to mention the chronic pain, that could have been prevented.
I have noticed that the Haematology team are not as concerned about the bone damage as they are about the cancer, but from my point of view, considering the fracture occurred after my diagnosis, had the bones been treated first I would be much healthier and better able to face my cancer treatment than I am now. There is the distinct possibility that, even if I achieve a complete remission, or am by some miracle cured of the cancer, I will never be able to work again due to the orthopaedic and neurological damage, not to mention the chronic pain, that could have been prevented.
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Loss of height causing severe pain
Paul, I've watch your post and hope and pray for your life ahead. I have multiple fractures (that's what my skeletal survey says) in my mid and low thoracic and 4 in the lumbar. I do find it hard to get a deep breath, but do well in my pulmonary test.
I do agree that once oncologists control the cancer, it's up to you as the patient to consult with a neurosurgeon. I do have one who's done the cementing in two of my vertebrae and will consult now that my ASCT is done.
I hope others with shared experiences can provide more thoughts for all moving forward.
Cheers!
Kully
I do agree that once oncologists control the cancer, it's up to you as the patient to consult with a neurosurgeon. I do have one who's done the cementing in two of my vertebrae and will consult now that my ASCT is done.
I hope others with shared experiences can provide more thoughts for all moving forward.
Cheers!
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Loss of height causing severe pain
Thanks Kully, I can't imagine the pain you must be going through with multiple fractures. Just having one vertebra go knocked me to the floor and saw me hospitalised. But four ... how do you cope?
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Loss of height causing severe pain
Paul, I had T12 and L1 cemented. I kind of started there as far as stabilizing my back -- I felt like I was balanced on a pole. I went through therapy to increase cardio and of course ASCT, which helped with my endurance. I continue on oxycodone for pain and walk now with a cane to avoid falls.
Stay positive and know that your not alone!
Kully
Stay positive and know that your not alone!
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
Re: Loss of height causing severe pain
Thanks Kully, Oxy Norm is my friend.
Unfortunately cementing is no longer an option for me as the vertebra has disintegrated, screws or rods and screws may be an option in the future but are seen as too risky now. I am getting used to it and hope to be permitted to undertake some form of rehab or training once I'm through the ASCT.
Being able to read the stories a of people who have been through what I am facing is a big help, thanks again Kully
Unfortunately cementing is no longer an option for me as the vertebra has disintegrated, screws or rods and screws may be an option in the future but are seen as too risky now. I am getting used to it and hope to be permitted to undertake some form of rehab or training once I'm through the ASCT.
Being able to read the stories a of people who have been through what I am facing is a big help, thanks again Kully
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Paul H - Name: Paul Harvey
- Who do you know with myeloma?: Myself
- When were you/they diagnosed?: Feb 2014
- Age at diagnosis: 43
Re: Loss of height causing severe pain
Well, I said to myself, I can still walk.
I was informed during my consultation with my cancer center's neurosurgeon that I had a total of 10 compression fractures in my spine. I've had 2 cemented already and will have kyphoplasty to stabilize the remaining vertebrae.
I hope others will see this and understand that you can carry on despite this and it is indeed a blessing that I can stand (with a little assistance from a cane) and walk on my own.
I have indeed embraced my new normal.
Kully
I was informed during my consultation with my cancer center's neurosurgeon that I had a total of 10 compression fractures in my spine. I've had 2 cemented already and will have kyphoplasty to stabilize the remaining vertebrae.
I hope others will see this and understand that you can carry on despite this and it is indeed a blessing that I can stand (with a little assistance from a cane) and walk on my own.
I have indeed embraced my new normal.
Kully
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kullybunnny1 - Name: Kully
- Who do you know with myeloma?: me
- When were you/they diagnosed?: August 2013
- Age at diagnosis: 48
8 posts
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