@@Rahul-rn8hs I can’t really say it, but I have lots of it, and 1 got big big, so they did immobilisation . And in March this year, Dr did blood n urine test , n the results was my creatinine level is ,bit high, kidney shrinking, n function also low. So I started to follow CKD diet , but my specialist told me not to follow that diet. Not much information I got. I’m so sad n don’t know what is right to eat n what is not supposed to eat. Thank you 🙏
In 2015 my tumor was only 8mm small. I just did CT scan, and report shows 4.2 cm x 5xm x 7.8 cm. It rapid grew in 8 years. Im currently getting reffered to get radioembolization done. In the meantime while waiting. I would like to know if theres anything i can do to slow down the growth of my tumour. And does a mirena iud contribute to the growth of my tumour.
Could you please give an update on your radioembolization procedure. I am awaiting an urgent referral as one of my 5 angiomyolipomas has grown .8 cms since October 2023. Thank you.
@@janettidswell2092 Hi Janet, Have you had the radioembolization? Or are you still waiting? Hope you're well. I am on the same boat. Last year, the ultrasound cleared me of any kidney masses, then last week I had a scan that found a 6mm mass. I was shocked beyond words. If it grew 6mm in ine year then I either have to find ways to slow it's growth or ask my doctor to refer me to a specialist to zap the darn thing off my kidney. Either way I am not made for these waiting games and I find with Angiomyolipoma, at least on social media platforms, I can barely interact with anyone. All I hear is crickets. I hope you are closer to a solution in managing your angiomyolipoma. I am just starting my journey and my next scan is 6 long months away.😢😢
Useful. I liked to hear it grows 1mm per year.
What diet one should follow with Angiomyolipoma? Plz reply
Are you suffering from Angiomyolipoma ?
@@Rahul-rn8hs yes I’m .
@@shamimgrey41 what's is the size of this and have you done any treatment ?
@@Rahul-rn8hs I can’t really say it, but I have lots of it, and 1 got big big, so they did immobilisation . And in March this year, Dr did blood n urine test , n the results was my creatinine level is ,bit high, kidney shrinking, n function also low. So I started to follow CKD diet , but my specialist told me not to follow that diet. Not much information I got. I’m so sad n don’t know what is right to eat n what is not supposed to eat. Thank you 🙏
@@shamimgrey41 Are you TSC patient ? What is the size of largest Angiomyolipoma ? What is the effect after embolization ?
I have developed blood in my urine. Is that concerning? I have had severe stomach pains
Yes, it should be concerned and do you have any kidney problems ?
@@Rahul-rn8hs Yes I have been getting recurring UTI’s and back pain. Also my stomach is swollen for some reason.
@@beautifulspirit2973 You should goto an urologist or radiologist and ask an advise for CT scans
@@Rahul-rn8hs Thank you. I will take your very kind advice.
In 2015 my tumor was only 8mm small.
I just did CT scan, and report shows 4.2 cm x 5xm x 7.8 cm.
It rapid grew in 8 years. Im currently getting reffered to get radioembolization done. In the meantime while waiting. I would like to know if theres anything i can do to slow down the growth of my tumour. And does a mirena iud contribute to the growth of my tumour.
Could you please give an update on your radioembolization procedure. I am awaiting an urgent referral as one of my 5 angiomyolipomas has grown .8 cms since October 2023. Thank you.
@@janettidswell2092 Hi Janet, Have you had the radioembolization? Or are you still waiting? Hope you're well. I am on the same boat. Last year, the ultrasound cleared me of any kidney masses, then last week I had a scan that found a 6mm mass. I was shocked beyond words. If it grew 6mm in ine year then I either have to find ways to slow it's growth or ask my doctor to refer me to a specialist to zap the darn thing off my kidney. Either way I am not made for these waiting games and I find with Angiomyolipoma, at least on social media platforms, I can barely interact with anyone. All I hear is crickets. I hope you are closer to a solution in managing your angiomyolipoma. I am just starting my journey and my next scan is 6 long months away.😢😢
Mummy suffering angimoylopoma