Here's hope

[Jeff]

Hello,

Since others have been sharing their MRI scans, I thought I would share my first scan and my outcomes. Here is my scan below:



The radiologist report described this tumor as 2.5 cm with a 5 cm cystic area. My hearing was perfect, I did have minor balance and coordination problems. The tumor was first debulked in 2002 by Dr. Robert Spetzler of Barrow Neursurgical Associates in Phoenix, AZ. I lost nearly all of my hearing, but had no other problems. The remainder of the tumor (2.3 cm) was removed in 2003 by Dr. Freidman and Dr. Hitselberger at House. I lost the little hearing that I had, but other than a minor setback due to CSF leak, had very minimal problems. Through both of these surgeries, I had no facial nerve problems at all, not even temporary issues! The only problem that I have is a dry eye, which is managed by a punctum plug. I use no eye drops at all. For those ust beginning this journey, there is hope for great surgical outcomes. I implore you to find the most experienced surgeons that you possibly can.

Wishing you all the best,

Jeff

[Gennysmom]

Jeff,

Thanks for sharing.  I am so fascinated by these MRI's, especially when symptomology is so varied.  It just astounds me that some with very small tumors are so symptomatic, while larger tumors are not.  I know it has to do with the placement on the nerve, but it still is amazing.  I'm so glad that things went so well with you, especially with a second surgery behind you.  And thank you for sticking around the site to help the continuing wave of new patients.  I'm still waiting to see a post surgery MRI.  I'm curious what the brain looks like. 

[Captain Deb]

Jeez--all these whopper MRI's!  Mine was a little pea-booger that totalled my hearing, gave me raging tinitus and horrible ear pressure.  Go figger!
Capt Deb

[Road Trip Dale]

Captn' Deb you have such a way with the English Language, that is the english language isn't it???  Pea-booger??  I love it.....

[Captain Deb]

I belive "pea-booger " is indeed a medical term--I found it in the Merck Manual--along with "wonky-head" and "ragin' whizzies!"
Captain Deb

[Crazycat]

Wow Jeff!!!

              That's heay stuff!!! You had c.s.f. problems too? I didn't have a leak, just a ventricular blockage and build-up of it, contributing to my equilibrium problems. How are you feeling these days? I'm doing okay, considering........


             Paul

[Jeff]

Hello everyone,

It certainly is amazing how differently these tumors affect individuals. Gennysmom: I stick around because I hope to help others by sharing the experiences I have. Unfortunately, my own personal AN journey is not finished. I have NF2 and a large tumor on the other side. The scan I posted previously doesn't show much of it in that particular slice, but I assure you thqt it was there.  Paul: I am feeling pretty good. My balance is poor but I am compensating well. I really don't have any other issues as a result of those surgery, just a dry eye, poor balance and deafness. I had a CSF leak right after my second surgery. The fluid was coming from my nose. I had a lumbar drain and spent 6 more days in the hospital. Did you require a shunt? I am really fearful of hydrocephalus. I have significant brainstem compression and some effacement of the 4th ventricle caused  by my remaining tumor, but it isn't blocking the circulation of the CSF. I am not having this tumor removed yet because I have perfect hearing and I am not ready to give it up yet. But, I will likely have surgery whenever this tumor grows again (3.5 cm now). I have scans every 6th months to watch it closely. I try to get the imaging center to give my a preferred customer rate, but they just laugh. I am very thankful for insurance. It sure is interesting to compare experiences. Here is an "after" scan image, taken this February. Notice the right side tumor is gone, but there lurks another monster.. Everyone have a great day!

Jeff

[Larry]

Hey Captain Deb,

Waddya expect - a pea booger for a parrot head is rather apt don't ya think?