Seeking Advice Regarding Extramedullary Hematopoiesis

To anyone who may be able to help...

I'm thalassemia intermedia and I've had regular transfusions during childhood - stopped needing them after splenectomy but afterwards, extramedullary tissues were discovered in the spine, which put pressure on the spinal cord a few years back; the doctor gave me radiation treatment which helped significantly.

But fast forward a few years and now, he suspects this may become an issue once more. His recommendation is to seek regular transfusion for 2 years (and deal with all the baggage that comes with it of course).

I have done some googling on this and there appears to be little info available about getting rid of this growth in the spine. Has anyone had this issue like me? What are the alternative treatments? Thank you in advance.

According to Dr Thomas Coates from LA, the only thing that really works to stop the growths is transfusing to a high Hb level. He has found that some patients have to maintain an Hb >11 to defeat the masses. Since there is a real danger to your spine, I agree that transfusion should be done and that you should be raised to a high enough Hb to stop the growth of red blood cell masses.