The Answer List

I know everyone has been on the edge of their seats waiting for the results of my doctor's visits. The results were not particularly bad, but by the end of the day yesterday my mind was a mess and I wasn't feeling like typing it all out. Things are looking up now, but I'll get into that in a minute.

First I saw the neurosurgeon, Dr T, who did a brief history and physical, took a look at the MRI, and went through what seemed a very practiced presentation that followed along my question list almost exactly. He said my neuro exam was fine but I do have a slight facial sag on the left. He said to call his secretary to set up the surgery "as soon as possible", which would "hopefully be within about 6 weeks".

Then I went to the ENT office and first saw the nurse practitioner there. She did an exam that included fun things like marching in place with my eyes closed, which I can't do without falling to the left. Turns out she used to be a midwife before moving to her current field, so we talked birthy stuff a bit. When she asked if I knew how big the tumor is the conversation went something like this:
Me - "Yeah it's 4.8cm by 1.9cm"
NP - "Wow..."
Me - "That's what the CT report says at least.."
NP - "Ooookay. You said you have a copy of those scans, right?"

She took my scans out and I can imagine that they must have been oohing and ahhing over them, because when the doctor, Dr F, came in, he was followed by a small parade - the NP, the fellow, and the med student. They asked more questions about balance and hearing, and did more fun tests like putting goggles on me and shaking my head vigourously for a minute, to see if it made me dizzy. He also put a scope down my nose to check out my vocal cords. Apparently they look fine.

Everyone that I met was very nice, but I liked Dr F especially. He told me that when Dr Q (who was Matt's dad's surgeon) gave him my referral, that Dr Q "looked me in the eyes and said 'You take good care of her'." While I know these doctors are in this field because they really do want to care for people and cure their problems, I also know that sometimes, with some patients, it really is 'just a job'. It's really nice to know that I'm not being considered just another surgery.

Anyway, in terms of my questions I figured I'll list the answers they gave me by the format of my list:

-Do you think this is a vestibular schwannoma or a meningioma? Why? Does it make any difference for surgery or outcomes? Does it look like there is a cystic component (if so, what does that mean)?
They can't be sure until they really get in there and mess with it and all, but they are fairly sure this is a meningioma and not a vestibular schwannoma. While it does have a shape characteristic of a VS, it's also a large tumor with seriously no where else to go, so of course it went in my ear. However, since I still can hear out of that ear, it's probably a meningioma. It doesn't change anything in terms of what they do now. Either way, they may have to leave bits of tumor behind if they removing them would cause more harm than good (ex: if they are stuck to a brain covering that would tear ).

-Are my symptoms (or lack thereof) typical?
Yes. It seems like I have compensated really well, and that's why my symptoms have not come on strong. It's likely I had this growing with me since I was a child, and I just have been working around it as best as possible. This is typical of younger patients with slow growing tumors, like these.

-How many tumors of this size / position have you treated? How many of people my age? Any chance of NF2?
Dr T and Dr F have worked as a team on hundreds of surgeries of this nature. Dr T said he's done 400. They have done people my age, and when people are young with brain tumors they are almost always this big. "Bigger", said Dr T. It's for the same reason I mentioned before, the tumor grows with you so the symptoms aren't as sudden and alarming.
In terms of NF2, no. This tumor is already so big that if there was going to be one on the other side (NF2 results in bilateral tumors), it would already be there at least to some extent.

-Which surgical approach will we be using? Why?
Retrosidmoid. It's the only one they can do for a tumor of this size.

-Can you give me the full step-by-step of the procedure?
First they put me to sleep and shave the hair they need gone. They make an incision from behind the top of my ear down toward my neck (S shaped). It'll all be within the hairline so when my hair grows back it won't show. They make an opening in the skull... (I'll spare this part for non medical people. Basically sounds like the typical course of a retrosidmoid that I've been reading.)

Is anything used to fill the void?
No, they only do the fat filling thing with the translab approach.

Is the bone placed back in alone or titanium or what?
They place a titanium mesh over the bone. It's metal detector and MRI safe.

How much hair gets cut?
About a palm sized piece on the back side of my head. Which is fairly big on my peanut head!

Do you retract the cerebellum? What kinds of effects does this / may this have?
There is retraction of the cerebellum. A lot of it moves out of the way when the cerebrospinal fluid is drained out, but they will probably also need to retract it out of the way. Dr T said it's not a big deal, though. The biggest risk with it is maybe a part of it would get damaged, which they would then remove and I wouldn't even miss it.

Is a drain in the back standard?
No, they don't use any drains.

-How many people will be in the operating room and what are their jobs?
90% of the surgery is done by Dr T, the neurosurgeon, and 10% is done by Dr F, the ENT. Dr F described the tumor as an ice cream cone with a big scoop of ice cream on a little cone. His job is to drill out the ear stuff to get to the 'cone' part. The ENT fellow said he will also be there, and I assume some other fellows and residents will come check it out.

-How long will the surgery take? How long in the hospital? How long for recovery?
The surgery will be long - 8 to 10 hours. I'll be in the ICU one or two nights, and then to the regular floor, with a total of 6 to 10 days in the hospital. After that I will probably go home, but if I need to I may go to a rehab facility. I should expect at least 8 weeks for recovery, as both doctors stressed the recovery from this surgery is tough. Really tough. I have written in the notes "long and difficult."

-What kinds of outcomes should I expect? Given your experience and the details of my tumor, what rates should I expect of ....
-Regrowth? Inability to remove it all?
It sounds pretty likely that they may not be able to remove 100%. However, the piece that gets left (at least for a meningioma) they shock with an electric current, so hopefully it dies off.

-Hearing preservation?
Basically, it's not going to happen. I told them I had given up on it, and both Drs indicated that was probably a good idea. Of course they will try to save it, but the chances are only 50:50 with a 1cm tumor, less with larger, and less with a meningioma. Oh well.

-Tinnitus?
Apparently the wavy sound I sometimes hear counts as tinnitus. ?? At least that's what I think they said. So that might continue.

-Facial paralysis, taste problems, swallowing problems, facial pain / numbness?
My facial nerve is "probably very stretched. Verrry stretched." I think they said there is a "strong likelyhood" (though I also have 10% written here) that I will have some facial paralysis, at least in the short term. In terms of permanent facial weakness Dr F said <5% chance. If there is tumor hanging on the facial nerves they will leave that tumor behind to spare the nerve, but Dr F said there was a possibility with a tumor of this size that they might not even find the nerve. Worst case scenario (which they both explained in detail so it's within a fair relm of possibility) is facial paralsis that will require plastic surgeries and reanimation surgeries. They said they have great results with doing some sort of reanimation with a nerve in the tongue.

Swallowing problems is one of the more major possible outcomes. I don't have a percent chance written down but I believe it was also in the 10% chance range of at least slight temporary problems. That being like not able to handle big pieces of steak or sandwiches. No big loss. Worst case scenario is there is enough of a problem that I will need a feeding tube temporarily while the nerves recover. That would suck, but hey, in the grand scheme - whatever.

-Eye problems?
Forgot to ask this one. They didn't mention it.

-Balance problems?
This was listed as Dr T's #3 top thing. However, this being a larger tumor actually benefits me in this way because I've compensated. I won't miss those vestibular nerves on the left side as much as someone with a smaller tumor who still uses them. In every surgical approach they remove the vestibular (balance) nerves. Still, I'll likely be spinning like crazy after the surgery and worst case scenario is I guess where the possibility of rehab comes in.

-Headaches? (Esp with the retrosidmoid approach)
Here's the kicker. 1:3 chance of chronic migraine headaches. *sigh*

-Cognitive problems, fatigue, depression?
Forgot to ask this one, too. However I do think they said to expect to be exhausted. I think that probably goes with any surgery of this nature and length.

-CSF leaks?
Chances are 1:200. Dr F explained that in some people, but not all, there are air pockets and cavities that may be exposed that communicate to the outside (via the nose, ears, etc). One of his jobs is to make sure everything stays closed up, because the risk is with infection if there is some opening between the world and your cerebrospinal fluid. Most leaks are detected during the hospital stay, and are corrected with another more minor surgery that involves using synthetic bone to fill the passages.

-Hydrocephalus?
Also forgot to ask this one. I think there's probably more of a risk from the tumor staying than going with this one.

-Meningitis?
1:00 chance of infections

-Seizures?
Forgot this one. Seems unlikely.

-Death? (From what?)
Of course it was mentioned on Dr F's concent paperwork, as it is with any procedure involving anesthesia. However, Dr T didn't even list it as a real possibility. He said in the over 400 cases he's done, he's never lost a patient. I don't intend to tarnish his record.

-Medications - Anything I need to take preop? What will I be given postop?
I'll get antibiotics before, during, and after. Steriods for a bit after.

-What is the frequency of postop MRIs?
The first follow up MRI will be done during the hospital stay. Then I'll get one yearly.

-What kind of preop things need to be done now / what is the next step?
The only thing we were told to do is call to schedule to the surgery and the preop visit. Oh and get a hearing test, which they fit me in for that day. Turns out I have "normal" hearing in both ears. I told the guy who did the test, "Oh, that's kind of too bad really, because I'm about to loose the left one." :P

-What things should I be avoiding / not doing right now?
No asprin.

-When can we do this thang??
And here is where the stress came in. I'm up for deafness, migraines, a droopy face, and yeah even a feeding tube, but not for letting Gary the Tumor hang out and mooch off me anymore. So when I called for my appointment and was given the date of November 10th, 9 weeks away, I was pretty devistated. Like, the straw that broke the camel's back.

So, I wrote the doctors and the NP an email. I just thanked them for seeing me, and let them know that I know it's not really up to them, but if anything came up and they thought they could get me in earlier, we all (family included) would really appreciate it. The worst they could say was "I'm sorry, that's all we have." I'm not unrealistic, I know I can't be picky when talking about two of the top surgeons probably in the world to do this.

But they didn't say no. Apparently they got together and I don't know, moved things around or something, and fit me in for September 22nd. It still feels like forever away, but at least I know for a fact that I will be home for Benjamin's spiderman birthday party in November.

Hopefully September stays beautiful and goes fast.