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Missed diagnosed spinal tumor

Cambe1CCambe1 Posts: 3
edited 02/13/2015 - 12:13 AM in Chronic Pain
HI, I am writing this on behalf of my 66 year old father who is suffering and literally dying from pain. He has had several back operations over the last 5-6 years to try and cure the pain he was enduring but none were successful. He was even told at one point by a surgeon that operated on him that he needed to see a shrink. He now has plates/rods and screws a fair way up his back. After continuing to suffer terribly after the last operation mum took dad back to the specialist and pleaded/demanded that there must be something else causing the pain which runs down dads left leg. Reluctantly the doctor ordered a PET scan which revealed a tumor growing against the spine and badly compressing a nerve. A 12 hour operation was carried out to remove the tumor, accessing it through the spinal canal. The tumor had attached itself to nerves and not all of it was able to be removed. The neuro surgeon thought that the tumor may have been there for 20 years. Nearly a year has passed and the pain is just getting worse. He is on big doses of oxycontin or oxynorm, gabapentin and others, none of which can supress the pain , he is beside himself. The last word from the doctor was that he has the pain for life, another operation was talked about to remove more tumor, plates and rods have to be removed to do this and he would more than likely end up in a wheel chair and some of the doctors say that he may still have the pain as well. So we heard from dads brother in Australia about a trial that was done on someone similar to dad where a device was installed to interrupt the nerve signals sent to the brain. Dad questioned the specialist here in New Zealand about such a thing and the specialist dismissed it. Can anyone on here give some information about these devices or even put us in touch with someone that could install one. We are desperate! Thanks Cam


  • LizLiz Posts: 7,832
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    Spinal stenosis since 1995
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  • itsautonomicitsautonomic LouisianaPosts: 1,807
    edited 02/13/2015 - 4:48 AM
    Cambe1, I am sorry for the problems and I am sorry your dad had to hear go to a shrink, does that doctor who said that know about the tumor that was found? He should. Did he have MRI during that time , if so I guess they did not show tumor?
    Was the leg pain there all the time he was having the other surguries ?
    I dont know much about the stimulator to block the signals to brain hopefully others do.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • Thanks for that, not sure if the doctor who told him to see a shrink knows about the tumor as dad went out of the area to get further treatment. Dad has had several MRI's , none of them picked up the tumor at the time but after the PET scan they looked back at previous MRI's and could see the tumor was there and had been missed by the readers. After one of the earlier operations dad had (by the shrink guy) to put plates and rods in his back, he come out of the surgery worse than he went in. He was discharged from hospital in a wheel chair and sent home in a hell of a state. We had to get a ambulance for him a day later as he was going to die. He couldnt eat or drink due to the pain and lay curled up on a bed in agony. He went into a small local hospital and was given morphine injections to try and get on top of the pain. They went back to the surgeon who did the operation and that was when he told him to see a shrink. They pleaded for another MRI but the surgeon wouldnt do it. Over a year went by still in pain so that was when dad went out of town to a major hospital in Wellington to a top surgeon. The first thing he did was scan dad and found a 12mm ruptured disk jammed on his nerve which in his opinion had been there since the previous op. That doctor carried out another operation, had to remove all the plates and rods that the local doctor had put in as in his opinion they were all wrong and put in new rods and screws. The nerve had been badly damaged so I guess that the continual pain was put down to the nerve being compressed for so long. So time went on, continual MRI scans were done but it was not until the PET scan was done that the tumor was discovered. During that time dad was diagnosed with Parkinsons disease which they think could be connected with the huge drug intake he has. He also has an acoustic neuroma which is like a kind of brain tumor, had 3 hips replaced, a knee replaced and toe joint. Also had a burst appendix as well. I hope I haven't bored you with all this.
  • Have made some inquiry to Medtronic, nerve blocking device. Hopefully they can offer him something.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    Hopefully ,your dad has been thru enough already
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • itsautonomicitsautonomic LouisianaPosts: 1,807
    edited 02/13/2015 - 6:44 PM
    Not bored at all and very sorry!!! Did not know Parkinson's may be triggered by strong dose of meds , but thanks for sharing the story about MRI missing the issue and taking PET scan to find, that may help someone else with severe pain and clear MRI. I am glad ur dad kept pushing to find issue. Again sorry for all you guys have been through
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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