Worried and Depressed

[JMZBA]

4 years ago my wife was diagnosed with a meningioma. She was driving the van to the store and had a seizure. Lucky enough, a lot island stopped the van from moving and kept her safe! She was taken to the hospital and a CAT scan was ordered. They found a large marble tumor deep in her right temporal lobe. We met with the Chicago University brain surgeon and scheduled the surgery. She came out fine without any loss. Amazing! Year and a half later on a routine checkup, they found another growth toward the back of her head in a sinus cavity. They watched it for a year but it grew bigger. They remove that growth without issue. It was close to the skull and easy to get. She went home the next day. Just 3 weeks ago she had her yearly follow up and found a 1 CM growth form toward the back of her head. So this 3 tumors now. We go see the surgeon tomorrow morning. I have 3 boys and I am worried that she might have NF2 Neurofibromatosis type 2. Insurance won’t pay for the gene test, so it will cost me 1100 out of pocket for the gene test. Has anyone paid for a genetic testing? How accurate is it? Would I waste my money? I would be devastated if I have to see my children go through this suffering. I know if she has NF2 then the kids have a 50% chance of having it. If they do have the mutated gene does it mean they will have the brain tumors? Or can they carry the gene and not have symptoms? This has gotten me worried!

BB

[rumpled]

Sending a PM.

Really, ear ringing? That is pretty common. My nephew has perfect hearing as well. I think he is thinking a acoustic neuroma, not NF?

[JMZBA]

No, Nothing with her eyes all. We seen the neuro yesterday and he thinks if we get the gene test that it would come back negative! She got a good checkup yesterday the 3rd tumor has been stable for year. 1 CM big. And her spine was clear! We talked about NF2. Surgeon said the trademark symptom is the tinnitus in the ear or slight deafness. She doesn't have that either. Nor are there tumors on the audio nerve. So anyway my 14 year olds comes home from school yesterday and tells us that he had 2 bouts of brief ringing in his ear. I did too get a ringing yesterday when I got in the car. Mine came and went just as it every so often does. I think everyone has experienced this. Why did it have to be yesterday! My heart fell to the floor. Timing is everything! I will talk to him today to see if he had anymore disturbances. Where did you find a $99 gene test? Alabama wants to charge $2200 with blood and removed tumors. Thanks for the reply my friend!

[rumpled]

I happen to have a nephew with NF1. Does she have the lische nodules in her eyes? If not, it is doubtful. I did a $99 genetic test and got a lot of information from that but I cannot remember if NF was one of the tests.

Some tumors are just simply aggressive little nut balls. It has nothing to do with anything other than that collection of cells. It is not fun, and really worrying for you and your family. You may or may not be able to consider a round of radiation - but that also carries a lot of risk and side effects but that sometimes can get the residual cells that keep coming back.

It is natural to be worried, and I hope all goes well. Please keep us posted.