neurofibromatosis

[JaimeLynne]

I agree, it's good news that your mom found a doc she feels she can trust - that is so important and seems so rare nowadays!

 

I'm very sorry that you're dealing with this but it sounds like you've got a positive outlook. I wish nothing but the very best for all of you!!!!

[Dbld78]

UPDATE:

 

So I just wanted to post another update for those of you who have been generous enough to show your support...

 

My mom's doctors have decided to ahead with the surgery before the wedding. She will having her surgery on June 20th at Penn. They found that the acoustic neuroma on the left side of her brain has a cyst that is attached to it that is 3 times the size of the tumor itself. They are afraid that the cyst will have a sudden growth spurt between now and the wedding.

 

So here's the procedure...

 

The will make a C incision behind her left ear and remove her inner ear leaving her with zero hearing in that ear, which is no big deal because she only has about 12% currently. They will then drill into her skull to remove the walnut sized tumor and the even larger cyst.

 

Now why can't they just drain the cyst? Good question....there is tumor matter all around the cyst so they would feel much better if they just took it out.

 

They will then fill her ear back in with fat from her abdomen. She will be the ICU for about 3 days and then upgraded, that is if all goes as expected. She will then need to be on bed rest for 2 weeks and it will be a total of a 3 month recovery.

 

It all seems so easy, right? Well let's just cross our fingers that it is just that.....easy.

 

Let's just say that when it rains it pours... While my groomsmen are giving me a hard time. Tomorrow I have to drop Tim off at County Jail so he can pay for his night of drinking and driving.... So he will be on work release for the next 90 days and during that time my mom will be having surgery. And I promised myself that I will try my hardest not to strangle the first person that gives me a hard time!

 

Thanks for listening....

[Dbld78]

PS....

 

She went for her genetic testing so we'll know soon where it is hereditary. Looking forward to that one!

[Alyssa]

Wow that is A LOT to be dealing with - i will pray for your mom and hope that everthing goes according to plan!! and make sure you don't strangle anyone lOL if you go to jail - who will hold down the fort?

[Dbld78]

Thanks Alyssa! Yeah, someone has to be responsible here.... if you can't tell, I'm a little bitter.

[Maura]

oh danielle. just read the updates. i am glad they think they will be able to remove everything easily. i bet you are kind of anxious to get the hereditary test results back. its really good that you are so informed about everything, oftentimes people dont know enough and are afraid to ask questions. good for you for taking charge! big hug to you and if you need to vent, we're here to listen.