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Living With Facial Pain

Misdiagnosis


#1

After almost of year of continued medication and gamma knife I was ton learn that the three doctors had made a terrible mistake. I should have never had the gamma radiation and it may well be my death warrant. In January at Duke University Cancer Centre I was found to have a brain tumour which should have been seen back last August if not sooner but because it was not and the pain and symptoms designated as just typical symptoms of trigeminal neuralgia they did not look for a malignancy. Now I am fighting for my life and enduring radiation and chemotherapy that is almost as bad as the symptoms. My partner in doing research found that 5 % of TN is caused by a tumour and because the surgeons did not consider this it was missed and the tumour had a chance to grow and spread. My oncologist designed a treatment regimen to avoid re-radiating the area that was given the highest dosage and since the tumour was a result of the HPV there is at least a chance of controlling the tumour and or eradicating it though the latter is not high on the percentage list. So please demand that they rule this out before proceeding with gamma or any other treatment!


#2

moutain_vica,

So sorry to hear about your medical mistake. My neurologist did a CAT scan as well as a MRI to make sure I did not have a tumor on the trigeminal nerve or brain. My radiologist did another MRI before he did the Gamma Knife procedure to map the brain as well so they could map the brain to pin point the exact spot for the Gamma Knife radiation. I am glad I have very competent doctors. I wish you the best in your treatments.

stephj


#3

mountain_vicar… how did they diagnose the tumor? I have had 3 MRI with and without contrast dye showed nothing. That is terrible you were misdiagnosed, Can you explain to prevent others.from this happening to them ?


#4

I am speechless.
Please let us all know how you make out.


#5

I am so sorry to hear about your misdiagnosis!
But how would they have missed a brain tumor if they did an mri? And I think most people have an mri people gamma knife to visualize the brain.
Good luck!


#6

According to the oncologist here they did not look for a tumour and had they simply looked further at the scan and at the base of my brain they simply could not have missed it. Reason for legal action probably but all my energy now is to survive. Two weeks left of radiation and chemo and then we will know how successful these “treatments” were. I have family in the UK and there as well as in Europe the emphasis is now on gene therapies and there are some promising results so I can live long enough maybe in the next two years or so I will benefit as well as many others!


#7

I am so sorry this has happened to you. Peace and blessings.


#8

Thank you dear soul. This is a tough fight and I am all but empty of energy. If I can just get through these last radiation and chemo treatments and then began the healing process maybe the MRI will show the tumour is shrinking. I have a partner of 35 years and he has been so supportive and there is no doubt without him I would be in hospice. He is worn out too and he hurts me to see him so worried though he tries not to show it. So all positive thoughts are deeply appreciative!


#9

So sorry to hear this and pray for only the best for you.


#10

Sorry to hear this. I went to Wake Forest baptist hospital several yrs. ago they told me the Gamma knife only works 25% of the time for ATN. I elected to to go Duke for MDV. which helped for awhile. ATN and TN is not taken very seriously by enough doctors and just assigned to a patient if they don’t find anything else. The first thing that should be looked for is brain tumor.


#11

So very sorry dear that you are going through this. We are rooting for you! Please keep us posted!


#12

12 Radiations and 3 chemo left then wait for 4 to 6 weeks and see how far the tumour has shrank. Then possible surgery on my jaw so that I can eat again with my dentures and then wait to see how long I have left according to the chart of statistical probability. Doctors sometimes think they and their diagnosis are infallible but they are not. Demand scans and often so that they will know conclusively it is not a brain tumour.


#13

Hi mountain vicar I’m really sorry this is happening to you,and with all the treatment you are going through now is very tiring and exhausting I feel for you,how can any specialist and doctors miss out by not checking the causes by using Ct and MRI scans ! unbelievable but as you say thinking positive is a good way for improvement,you just hang on to the good things coming after all this is over and to the man in your life ,keep in touch


#14

I just want to send thoughts and support and prayers your way. Hang in there


#15

Sending the prayers your way.


#16

Prayers from everyone is deeply appreciated.


#17

Obviously don’t know where your tumor resides, but in the UK imaging for TN of the neck- where in part a large proportion of the trigeminal nerve pathway exists isn’t considered on imaging, ignored. Maybe because the main cause they are looking for/ taught is vascular compression on higher levels- no evidence it causes TN, blinkered to other causes. So in these cases not negligence?? just their teaching, despite DREZ procedure having been used for TN.