Discussion Forums > Thalassemia Major
Question for Andy...
Andy Battaglia:
Emby,
Because of the history of low hemoglobin levels, I would suggest asking at the thal center about investigating the possibility that extramedullary hematopoesis has developed in the boys. What happens is that red blood cells grow outside the bone marrow and develop into masses that can press against the organs or the spine, and this can become painful. The best way to prevent this is by not allowing the Hb to drop low. Hydroxyurea is also sometimes used to shrink the masses. Ultrasound can be used to determine if these masses exist in the boys.
Andy Battaglia:
And, I am doing much better. My shoulder and back finally healed and I re-did my work space at work so that I am no longer stretching to reach the keyboard on my laptop.
Emby:
Thank you Andy for a quick response,
Regarding extramedullary hematopoesis, would this not have shown up on the MRI scan they recently had? Also their DEXA scan came back as normal, would the masses on the bone not cause weakness to it? This pain thing happens to them only occasionally, if they had this would they be in pain most of the time?.......you know thal doesn't rule their lives, they have too much stuff to be getting on with but me.....I obcess about things briefly, deal with issues then let it go to the back of my head!!
Really happy to hear you are keeping well.
Emby
Andy Battaglia:
It won't be revealed by MRI and the DEXA scan would scan only the boe. These masses grow outside the bone and tend to cause discomfort more in times when the HB is low and they expand. The symptoms fit but it is not the only possibility, but I would request an ultrasound by a technician who understands what to look for.
Emby:
Reading up on it, hydroxyurea is an option for treating it but radiation is a better form of treatment other than surgery which may remove the masses for sometime but may grow back again.....God Willing, I'm hoping it is not this......will ask for this to be investigated.
What do you think are the other possibilities?......the Doc thinks i worry too much (ask many questions) but there is a difference between worrying and keeping informed.....still..the Doc feels i worry too much..
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