My 32 year old daughter was just recently diagnosed with MM.  She has not had strokes or hemmorhage so far.  She is having the brain Spect in about 10 days but this past week she has been suffering very bad headaches.  I'm very concerned about the headaches and think she should notify the neurosurgeon.  She says she will be seeing him in a few weeks after the test.  Please let me know what you think.  I'm afraid something dangerous is happening while we're waiting for her to get the tests. 

Will she eventually have to have surgery?  From what I been reading, it sounds as though that is the general outcome eventually.

Hi Kate, welcome to our MM family!

I’m sorry to hear about your daughters’ MM diagnosis, but I’m glad you found us. There is so much life saving information here, and it’s very wise to read and learn all you can about this rare disease. It will help you and your daughter with your decisions as you travel down this road where many doctors just don’t know enough about this disease yet.

With regard to your question about surgery… I’m not a doctor, but I can give you some facts about MM, as we know them, and a very important fact is, surgery is the only option with MM, to try and avoid a stroke that comes with this disease. If your daughter was diagnosed with MM, that means she has a progressive narrowing in the arteries to her brain, so she is not getting the blood, nutrients and oxygen she needs, which is one of the reasons for her headaches, and causes the risk for a stroke. Each case is different due to the numerous individual factors involved, but the disease itself is progressive and only gets worse over time. The progression may vary patient to patient, (some faster than others) but the risk for a stroke/hemorrhage is always there. As you learn more about MM, you will find that without surgery, the majority of individuals will experience mental decline and multiple strokes, and it can be fatal without treatment

The good news is--this is a successfully treatable disease with a MM EXPERIENCED neurosurgeon. Plus your daughter is so very fortunate that she was diagnosed before a stroke. Sadly, many are not. So prompt treatment with a doctor that knows and understands this disease is always the safest and best road to take. You will find some general questions DJ posted in a thread above for new members; to help you know what to ask your doctor to be sure they have experience in treating this disease and that you’re on the best path for your particular case.

I wish I could calm your fears, believe me we’ve all been there and understand the ticking time-bomb fear that this disease brings.  So the only advice I can give you is to learn all you can about MM, and be pro-active in your daughters care. Then if someone in the medical field says or does something that raises a red flag, like we see and hear so often, you’ll know it right away and fight it. You’ll find that the majority of patients who had successful treatment, had to fight somewhere along the line to get the proper care they needed.

As Rusty said in the above post, a second opinion with a MM specialist is always smart with a rare disease. Dr. Steinberg is a MM specialist who deals with MM on a daily basis, and he’s done over 700 successful surgeries. So his expert opinion could help you know if you’re on the best path for your daughters’ case. Now a day you simply mail a copy of your films to a specialist for their expert opinion.

If you have any questions, please don’t hesitate to ask. Our thoughts and prayers are with you.

Mar