Meningioma

[shells137]

We live in Edmonton, Canada and three years ago my daughter was diagnosed with a meningioma brain tumor.  It was sitting on her brain, but had broken through the eye cavity and damaged her optic nerve that she lost sight in her right ey.  She was operated on for 10 hours to remove the tumor which also went down the side of her right face almost to the base of her skull.  Everything went well for about 6 months then the tumor returned behind her right eye.  The doctors operated again and this time a nerve was touched which caused her to have a stroke and she is is now partially paralazed on her leftside mostly her arm.  She had Tomo Radiation therapy 1 1/2 years ago to shrink the tumor behind her eye, and everthing was fine until 2 days ago.  She has a followup MRI every six months and it was noted that the tumor behind her eye is starting to come back.  Because she had radiation for Leukemia when she was 3 years old in 1975 and this past radiation, the the radiologist said that she could not have anymore and that the tumor would grow back and there was nothing more that they could do.  Eventually she will die a long painful death and be on Morphine for the pain and be in a palative care hospital waiting to die.  We are seeing her orginal surgeon this coming week, and I was wondering if there is any other form of treatment that can be done for my daughter as we know that another surgery is too dangerous for her and radiation is too.... She is 36 years old.

[Mcnickyo]

Thank u for ur encouragement! I take your words to heart.
Nicky

[rumpled]

The aneurisms can be more threatening actually ( but I am a layman) as they can give out at any time in your shoes I would get those fixed first anyway.

As for the menigioma, if it has been stable since 1998 then you are not in the same boat as the poster's daughter above, thankfully and where most are with that type of tumor from my reading.  It all depends on location, but stability is a good thing.

Not every person has the same experience and that is why sometimes reading boards can be a bit misleading. Your history and genes differ and so will your experience. It is tragic what happened to that lady, but I don't think it is the norm and you luckily have some imaging to show stability.

It is scary when you have a health issue... Hopefully with time and resolving one issue, you will learn to cope. It can be daunting.

[Mcnickyo]

I so appreciate hearing from u. I met with the neurosurgeon this week and he wants me to have a catscan to highlife both Meningioma and the 2 aneurysms I know of since 1998!  Doc isn't too concerned about Meningioma  and wants to fix aneurysms. New techniques allow catheter entry thru leg/neck to fill aneurysms. I am 100 percent freaked out by this. At first I was thinking it sounded ok but now with knowledge of the men. I am just freaked. The tumor u describe sounds pretty worrisome.
God bless Nicky

[rumpled]

Thankfully, not every meningioma is as aggressive. I am sad read in the post that no one responded to the original poster... It was before I was here.

I would ask the doc next time.  There is a thought that since they are benign that sometimes they are not of consequence until they get larger.  We with pituitary rumors get caught up in this (which is not applicable since the rumors stay small typically and the small ones can still be quite nasty).

It can also depend on where your lesion sits and if it is stable.

Please let us know.

[Mcnickyo]

You wrote a long time ago. Please accept my concern for your darling daughter and my prayers that she is holding on and not in dreadful pain.
Thank you for sharing and I hope u receive this message.
I just found out that along MS and cerebral aneurysms, I have a Meningioma . Even tho it shows up on a 2013 MRI my ms doc at the time as well as the people who made the report, said nothing about a Meningioma . Very odd.
I have more to think about.
Thinking of u and your daughter. Nicky