 Posted 30/06/2012 10:03:01
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Hello
Just wanted to tell you about me last year. I had about six new spinal fractures( an older wedge fracture T7 and T8) I lost 4 inches in height, also a lot of weight. I have severe osteoporosis and multiple myeloma, and could barley walk after all this. My wedge fracture of T7 and T 8 had healed before it could be fixed due to mix up at my first hospital. I was really annoyed to read how if you live in London you are not likely to have to wait long for these operations. we still have a huge North South Divide
Last July I managed to get 4 vertaplasys done on my spine. At the Manchester Royal Infirmary in Manchester...Trouble with new fractures is by time I got appointment there was not much else to see so always too late for khyoplasty and also they are offering very limited amount of vertoplasty ops. The new fractures are round my waist and hips.
It is not the Fault of the doctors, as they do as much as they can with resources apparently it is going to get harder to get this Operation done in next year. It looks very much as though I am not going to be allowed any more operations, my ribs are touching my hips now. I stopped my bone injections as I am terrified of the jaw complications, and they had made no difference that I can see. Not sure what I can do now, I cannot walk very far as I am in pain walking. This leaves me almost housebound, and really quite disabled. I am looking at buying the brace mentioned on the forum Dynamic SpineCor brace. My back is a mess, and my ribs have sunk into my stomach. Does anybody know if this would help me?
I know they have applied for funding for the parathyroid drug for me, but have not heard anything yet. My T score on my spine – 5.5 I know the hips are quite bad too.
Any suggestions welcome on what I can try for treatment. I mean the supplements and diet. It seems to be the osteoporosis causing the problems, not the Myeloma, but we cannot be sure.
I am having trouble with the spelling of the medical words, so please allow for this.
I think that is more or less me, apart from getting pretty fed up with it now..
Linda
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Posted 30/06/2012 10:28:17
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Oh Linda - how dreadful  Dreadful that they have been too late for your operations because of delays and presumably funding. The state of the NHS I wouldn't be as forgiving of the doctors as you are - my previous GP prescribed me medications that NICE and the PCT would not have liked him to due to cost and he laughed about it - as far as he was concerned the patients' needs came before NICE's and the PCT's. I have a letter from my MP which is from the Department of Health which says that NICE's guidelines for doctors are just that - guidelines - doctors do not have to obey NICE, it is simply guidance. So doctors can make a stand. They could have gone on strike last week not for their gold plated pensions but to complain about restrictions in prescribing and the post code lottery of the NHS.
I replied to your message about supplements. Have you tried vitamin K2 ?
Have you been able to get any help from Social Services ?
Osteoporosis - Strontium Ranelate, Dekristol vitamin D3 20,000 IU/week, weight lifting, walking and vibration platform exercise, alkaline loaded diet, vitamin K2 MK-7 200mcg/day. Diabetes - Repaglinide, low carb diet and exercise. Congenital heart defect - Omacor and CoQ10. Small airways disease/asthma - Qvar 100. Probable coeliac.
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Posted 30/06/2012 17:38:49
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Linda
I am not surpised you feel let down, I'd be furious. When your T-score is -5 I am not sure what kind of exercise is good for you. Have you phoned the nurses here to ask?
Hope you get some positive feedback.
SarahW
Tscore Lumbar spine -3.3, Femoral neck -2.6, Hip -2.2
Alkali diet (+ no caffeine/sugar/salt/rhubarb/spinach) and exercise and supplements of Vit D (2,000IUs daily), Vit K2 as MK7, vit K2 Menatetrenone, Cod liver oil.
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Posted 30/06/2012 18:18:04
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Hello Linda
I'm so sorry that you've had such a terrible time. You must be in a great deal of pain. My understanding is that multiple myeloma causes severe osteoporosis - I was tested for it with a spine T score of -4.1. I would recommend phoning the osteoporosis helpline and speaking to one of the nurses - in my experience, they are very sympathetic and knowledgeable. They might also be able to answer any questions you might have about the different drug treatments that are available. I know that teriparatide is a very expensive treatment, and sometimes difficult to obtain, but the helpline nurses would be able to tell you whether you are eligible for it - and frankly, if you're not eligible for it with everything that you've suffered, then the NHS is completely worthless in my opinion!
Best of luck with everything
Jes
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Posted 30/06/2012 19:05:43
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| That was my post above - I had forgotten to log in!
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