Hi everyone! A quick introduction: I & my wife have been lurking on the board since Feb 14th when she was diagnosed with a 1 x 1 cm AN on her left side. So first let me say thank you to all of you have taken your valuable time to post your experiences here to share with everyone! I (and as my wife says: WE) are in the Navy in Pearl Harbor, so when we first heard about the AN and the House Inst. that's immediatley where we wanted to go, but our insurance (Tricare) only allows treatment in a military hospital which in Oahu is Trippler Army Medical Center.
Let me back up a bit; My wife's symptoms were similiar to many of yours but not very conclusive: a "fulness" in the ear, eustachian tube problems, and once the audiogram was done a mild hearing loss in the left ear, which did vindicate me a little because for the last year or so she has insisted that I was always mumbling when I was talking to her, especially in the car when I was driving
. After an inconclusive CT scan and the audiogram the MRI was ordered.
After reading through some of the recent discussion concerning MRI's and "contrast" I will mention the fact that her MRI was ordered without contrast. However a very savvy MRI tech convinced her to go ahead and do it while she was already there instead of having to come back after an inconclusive read. Thank you whoever you were! It's important to note that contrast is VITAL to a valid diagnosis with an MRI, I don't know why any doctor suscpecting a tumor would ever order an MRI without it!
That's when we (mostly me) started hitting the ANA board hard and heavy. Dr. Ramsey, our ENT surgeon, recommended the board as a good source of info. It did become part of the problem instead of the solution after a time because so many of you have had a really hard time with your tumors. It made my heart break thinking of the suffering you were having to endure and especially the thought of my wife having to go through it also.
Now get this...the plot thickens, I recieved orders last summer to transfer overseas. We were scheduled to fly out on Feb 9th, 06. Right before Christmas the housing at the base we are going to flooded and over 400 families had to be evacuated from their homes
, so a stop movement was put out and we re-scheduled our packout and move and flights for...wait for it....Mar 9th. That's right folks, we were all set to move 3 weeks after being diagnosed with a "brain tumor". So again, our move and travel arrangments had to be rescheduled, and more stress was added to the situation.
When we talked to Dr. Ramsey and the neurosurgeon, Dr. Martin, we felt very comfortable with them and they really inspired a lot of confidence in us for them. We kind of felt at ease while discussing the procedure and the possible outcomes. They felt that Melissa hearing could probably be saved and that the facial nerve should not be impacted at all. We sceduled the surgery as soon as possible to expedite our move. Did I mention? We're going to Sicily! We really wanted to move soon!
During the ensuing 2 weeks I think I read EVERY post in this forum. I am a hound for information. There really is a wealth of great info here. Everything from what to ask the Doctors and what thier qualifications should be, to the worst case scenarios and everthing in between. That's when I looked at GK/CK. It had been given to us as an option by both of the Dr.'s and we had kind of dismissed it arbitrarilly (sp). After we had resigned ourselves to surgery we felt comfortable with the decision. After reading more about GK and CK I really thought that it would be THE way to go, after all there is NO BRAIN SURGERY! It seemed like a no brainer (pun intended). I took it upon myself to talk my wife into it and after a couple of days I had her convinced. Now at this time I hadn't quite made it through all of the discussions here. Then I found the post-treatment discussions on GK / CK and the bottom dropped out. While I know many of you are very happy with your decision to go with radiosurgery it seemed to me that a lot more had complications ranging from irritating to extremely serious, (Vincent, I'm thinking of you & your Mother). So, we talked ourselves out of radiosurgery and back into the craniotomy. Of course when we asked the ENT doc his opinion he wanted to do the surgery, I would expect nothing less from a surgeon after all, when we talked to the neuro doc he really discussed the pros and cons with us. Both docs recommended the surgery option because of it's proven method and predictable results, but encouraged us to make the decision ourselves. My wife put them on the spot and asked them if it were their own family members what route would they go, and they responded, honestly I believ, that they would still do the surgery. So, away we went. T-minus 4 days, we had appointments with the anesthesiologists and all the other key players in the game. I kind of stopped visiting here because I really needed to be confident with our decision, not just for me but also my wife. Reading the conversations here just caused to many questions and uncertainty to come up. There is too much of a good thing.
We are both glad that we made the choice and got it done quickly, it was a very emotional 2 weeks, the analogy of the roller coaster click-clacking up the hill fits very well. Anymore than two weeks and I'm sure that I would have ended up with an ulcer.
Feb 28th: We get checked in and my wife is herded in with the other 10 people having surgery that day for the briefs and instructions. As all the patients and their familiy members are marched to the other end of the hospital to the OR's, I 'm reminded of the movie "The Green Mile" as they say "walking the mile, walking the green mile" on their way to the chair. Not a very comfortable experience.
Melissa was poked about 30 times to get an IV started, although her viens are easy to see and feel apparently they like to "roll" when poked, talk about a lot of bruising!
Once they got a line in a large dose of sedative was given that slowed the flow of tears, then another one that almost stopped them, then another one that made her sleepy while crying. She says she really doesn't remember anything after the first one. It bears mentioning that this is the first major surgery for either of us. An all new experience!
8 hours later they rolled her into ICU and I got to see her again. The doctors said the surgery went very well, the facial nerve was left intact and showed no trauma on the monitor, the hearing nerve was left intact and also showed no trauma on the monitors and they were able to get all of the tumor out with no troubles. Her face did have some paralysis that they said would go away. When I went in to see here something in my heart ohysically cracked. It was the worst I had felt. Ever. And it couldn't compare with how she felt. 4 days in ICU because she had a spinal shunt placed to keep the CSF from leaking while the fat healed. then two days in the regular ward and then home. For the first couple of days she didn't want to open her eyes or move her head. She said she felt like she had been hit with a truck, which is exactly what the doctors told her to expect.
It got gradually better and she was able to walk around the ward hallways in order to be released.
It's getting really late and I need some sleep so I'll give this a quick ending and elaborate more tomorrow.
For the first couple of weeks she wanted to die.
Now she is glad she did it and is very happy with the results, last Friday she went Ice skating, and is back to jogging with the dogs. We fly out in 2 weeks to Sicily and things are going great.
We both are so thankful to all of you for the support you gave without knowing it and the great advice you have given. I hope for the best for all of you that have already gone through this and those that getting ready to. It may seem like the end of the world but you really do have to take it one day at a time, sometimes just one hour. Our bodies are amazing machines that can recover from incredible trauma and adapt to continue living.
God bless you all. Sean
