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Old 08-18-2012, 04:43 PM   #1
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Nancyremoval HB User
6 days post op... possible Desmoid Tumor

Hello all i am 6 days post what was thought to be a schwannoma removal (nerve sheath tumour) of my c8 nerve, however since resection it has been diagnosed as a possible desmoid tumour. They are pretty sure but sending to a specialised professor to make sure. My tumour is called nancy!

It started with the last 6 months having awful burning and pins and needles in my arm, a ultrasound,biopsy and mri showed a tennis ball sized tumour. I had to wait three months for surgery which was unfortunate but the way the public hospitals work. I had a very kind neurologust and neurosurgeon that bnt over backwards to get me in as soon as possible and were so fantastic in their approach and treatment of me. My tumour was in a very akward place resting within my brachial plexus, sternocleido mastoid and scalene muscles, and so a very invasive approach was used at the back of my shoulder. I ended up having all the muscles that attach my shoulder blade to the chest and spine cut so they could fold my shoulder blade back, remove some rib and resect my tumour. I have to say i'm in alot of pain but grateful the surgery has been completed, the tumour all removed and no nerve damage.

I have an appointment in 6 weeks to get the definate results for my biopsy , i have been doing some research and am surprised of the recurrence rates so am looking into what i can do to help myself. Any ideas anyone? A few sites eating foods that are estrogen inhibitors. It's nice to see that others are sharing there stories. You have all been very brave. No one mentioned FAP to me in hospital and so i gues i should be asking about being tested for it when i return in 6 weeks. So much going on and a big surprise with this diagnosis for me. Having your shoulder blade taken off and on again itself is pretty painful!! If anyone has any thoughts or can help with the questions i should bs asking my consultant when i return i would be grateful. Thanks guys

 
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