I actually had surgery in 2004 after my Son was born. It has not returned, thank God. However, I do have some deformity now because of the surgery. It grew very large through out my pregnancy. I have an original post somewhere in here telling how some doctors wanted me to terminate my pregnancy at around 3 mos and receive chemo treatment. I refused and by the grace of God found a doctor to perform the operation, which by the way he only does about once a year being it's rarity. I do wish you the best, feel free to reply.
By the way..... I gave birth to a beautiful healthy 12 lb baby boy on August 10th 2004 (he is 16 today!)
It has been awhile that i have posted about my journey
with AA, but i am still battling.
i live in South Africa and this rare condition of ours
sometimes give big confusement with diagnoses. After my previous writing in 2018 ,which i said i had
L fingertip removal , inside my nose, hip after 5 operations another one was found eventually,
and my lower leg x2 times removal same place ,and then my fingertip and on top of nose and in this year under my heel also removal of growth with entrapment if x3 nerves. With all of these i had tremendous pain at the end before the removals and
not all could be picked up by Mri in a clear explanations
by the radioologists which don't always now what they
are looking for...
also the pathologist report after the removal sometimes
did not clearly know what the growth" which was removed is, and sometimes report came back "inconclusive"
i find because it is a rare disease which we are all suffering from, it is clear not all doctors, pathologist and xray specialists know what they dealing with.
my medical aid insurance don't want to pay for a whole body radioisotope mri , a yearly Mri which i am supposed to have. i usely know if it is another growth when it starts to pain
and i have a physician which believe me and always knows how to explain to radiologist what to look for.
this disease is a debilitating painfull disease which
I actually realized I never told my story here, so here's my fun little journey with AA if you're interested.
I originally went to a GP who thought it was an infection and prescribed antibiotics which didn't do anything (I couldn't schedule a OB/GYN appointment for another few days and told my mother it couldn't wait that long). Wound up seeing the OB/GYN a few days later anyway, at this point in excruciating pain because (luckily or unluckily depending on how you look at it) my tumor, which was growing in my labia, seemed more intent on growing out than in, and grew so fast it broke the skin from stretching (nothing serious, just enough to make it very painful to the touch and to pee).
As many other have experienced, the OB said it was a cyst and attempted to drain it right then, but as I was only 15 and the moment he started it was already incredibly painful, I freaked out and they had to schedule for me to be sedated in the surgee center the next morning. Cut to that morning, they told me it would only take 15 minutes, and instead I woke up an hour and a half later with a 6 cm scar.
After that I was on Gabapentin/Lyrica for a year for my chronic pain (felt like constant pinching) while they monitered everything, and as the OB hadn't known what he was looking at at the time, he wasn't sure whether he had positive or negative margins and hadn't been comfortable going too deep with the surgery in that moment. The following year I had another surgey to remedy the chronic pain from the damaged nerves, and my doctor at MSK found microscopic cancer cells, so we know for a fact they're there, but so far it's been 2 and a half years since my initial surgery and diagnosis and it has yet to regrow, though I am still getting MRI's every 4-6 months.
