Discharge!

Nicole was discharged from Hopkins Tuesday afternoon. Knowing that she needed someone with her 24 hours/day, she opted to come stay with her Dad and I for a while until she can get a bit stronger. Her care, compounded with the day to day care of two children, would be a lot for Matt - although I know he would handle it if necessary.

As the doctors tried to tell us, recovery is going to be a lot more difficult than expected. Nicole will be going back to Hopkins in three weeks to have a procedure done to implant weights in her eyelids to help them close. Right now she has to put drops in every hour and an ointment every four hours plus wear the piece of Saran wrap over her L eye constantly. She'll also probably have to check in with an ophthalmologist every week until the procedure, just to make sure her cornea is being preserved with the measures currently being taken.

The pain and nausea and still pretty overwhelming. She was sent home with prescriptions for two days more of Decadron to take and pain medication. It's been difficult for her to go into the hospital feeling 'semi-OK' and then to be released feeling horrible with the left side of your face numb. But.... she's a great patient and she still does her exercises regardless.

She'll being have OT and PT sessions for 45 minutes each three days a week - hopefully at Kernan. And of course lots of follow up visits with all of the surgeons on the 'team'.

Moving Day (Well.....Evening)

Nicole's mother 'reporting' again.....

Hopefully this image is not too terribly graphic for fellow bloggers. It passed the 'squeamish' Dad test, so we figured it would be alright to post. You can see why her pain extends down into the neck with the backward 'S' incision.

Dr. T, the head neurosurgeon, said she is able to leave the CCU tonight and go to either Floor 8 or 9 in the Meyer building at Hopkins.

Last night Nicole had an MRI which showed swelling (predictable) of particularly the cerebellum. The word 'infarct' was mentioned, which was concerning, but when we spoke this afternoon with Dr. T, he explained this better to Nicole and I. The tumor, being quite large, was taking up considerable space and compressing many areas such as the cerebellum. Now that the brain has more room, it is expanding back into areas formerly occupied by the tumor . He said the MRI Department will use the word 'infarct' with what they see from the portion of the cerebellum removed, but there was no stroke.

Dr. C from Dr. F's ENT group said she is doing well but will need PT and OT after discharge. He said they would evaluate her progress at 6 weeks but it may be 12 weeks before she's really able to do most things. She was given some 'homework' by the Vestibular PT Department (Yes, there is a specialty within Physical Therapy specifically dealing with Vestibular disorders). One of the tasks she had to try gave me a headache just reading the description! It involves looking at a small 'X" and then turning your head side to side as you keep your focus on the 'X'.

Nicole will need to keep her L eye covered for some time because of corneal drying (She's still not able to totally close that eye when the other one closes tight). They are using a circle of Vaseline around her eye and then a Saran wrap piece to cover it.... so she can semi-see out of that eye.

This morning Nicole was trying to walk a bit with assistance. She feels like her left foot is cooperating more but she's still unsteady. The 'walk' with her nurses really tired her out and she was feeling worse this afternoon - she admits she probably overdid it.

She's down to IV's just in her R hand and a pain level around 5. She ate a few mandarin oranges and drank a little milk for lunch - hopefully she'll feel more like dinner when Matt is there.

Seemed to be a lot of confusion over whether she had to stay in the CCU another night or not. The ENT group was saying she needed to stay another night. Dr. T. said she could be moved. (By the way, he was out earlier in the week from a kidney stone, not Nicole's case!)

Since Dr. T. is the 'head' surgeon, apparently what he says goes, so she'll be moving on!!!

My sister, (Nicole's aunt Cathy), will be coming in to stay with her this evening. Dr. T. said this would be fine. Cathy is a nurse at St. Agnes so she figures if she's given any grief about being there overnight, she'll go into 'private duty nurse' mode. Nicole is still feeling apprehensive so hopefully having Cathy there will help her rest and sleep.

Second Post Surgical Day

It's Nicole's mother, Susan, writing an update again. Nicole filled me in today on what has happened from my last posting.

Things that occurred last night:

- her 'A' line was removed

- she needed a nasal cannula since she was 'de-sating' when falling asleep

- they had to draw blood from her arm - can't get from the L hand any longer

- she got her Spirometer up to 1,700 one time - but usually it's more like 1,000-1,500

- she tried to sleep in 3 hour increments - she still has a fear of aspiration while sleeping

- she has been changed from Fentanyl to Morphine to Hydrocodone for pain

- she had a bed bath

- she needed Magnesium since her level went down to 1.8

- she's had to get insulin a few times - her Glucose this afternoon was 120

- still on Phenergan for nausea

- still has double vision - her L eye is now covered since there are concerns about corneal drying as she can't close that eye totally

What happened today:

- Dr. T is ill and Dr. W, his associate, saw Nicole this AM (Nicole commented she hoped her case didn't make him sick!)

- the ENT surgeon, Dr. S, did a swallowing test and decided there was 'too much gurgling' so a Speech/Language pathology consult was ordered

- The Speech/Language Pathology consult showed she was ready to try soft foods and liquids -but she'd need to go slow and pinch the L side of her lips together to use a straw; to use suction if she felt like she was aspirating

- it would be OK for her to clear her throat

- she had a chest x-ray but still no word on the atelectasis in the RLL

- Her Foley was removed (she was glad about this )

- With the help of two nurses she was able to stand and transfer to a recliner

- She can't be released to a stepped down unit from Critical Care until an MRI is performed and reviewed by the surgeons

- The Occupational Therapist did an examination and said she'd need OT and PT after her release. Nicole hopes this will be possible at Kernan.

Tomorrow the plan is to see how she does when she tries to walk.

Observing her as the nurses helped her to the recliner, the left foot is dragging and she definitely has to concentrate hard to lift that leg.

Before she will be allowed to leave the hospital, she will have to demonstrate an ability to climb stairs.

Some additional information she told me today:

- the surgeon did have to remove a piece of her cerebellum

- the vestibular nerve had already been destroyed by the tumor but apparently she had been compensating well over the years with her right side

First Post Surgical Day

I hope these images are not too graphic for anyone, but Nicole wanted to provide the information for those following her blog. I thought she looked amazing today. It's hard to believe what she had been through less than 24 hours ago.

Her first night apparently was a difficult one as she described vomiting bile and needing Potassium which burned like crazy. She is hoping her glucose level was better today as it was 180 last night - presumably from the steroids. Still the spot in her RLL. Nicole is working with her Spirometer (blowing 1,000-1,500) and swabbing and suctioning herself (as you can see in the last picture). Tomorrow she should have her swallowing test and we're hoping that goes well. Her right hip was bothering her with an area of skin breakdown from lying on that side for so many hours during surgery. She continues to be in a lot of pain but can request Fentanyl every half hour, if needed. She mentioned Dr. Tamagro needed to cut through the musculature in her neck so the pain has been down the entire left side of her head to her shoulder. Her nurse told us her neurosurgeon doesn't like for his patients to have very much pain medication since he wants to be able to note neurological changes. She still isn't able to close her L eye totally so it was bandaged shut last night and the staff has been good about putting in lubricating drops.

Some good news from her neurosurgeon - Nicole told us Dr. T said they were able to preserve all of her nerves except the vestibular so they are hoping against hopes some time down the line she may even be able to regain her hearing in the left ear!

Not losing her sense of humor, when Dr. T asked if she had blurry vision, she said she always had blurry vision unless she had her glasses on but if seeing him with 4 eyes meant her vision was blurry and double, then yes, that was the case. (Sounds like the joke of 'Doctor, will I be able to play the piano when you are finished the surgery?')

For all of her nursing friends following this blog, I hopefully have all of the below information correct regarding her stats and meds-

1- 9%Sodium Chloride/ Decadron 10mg/100cc

2- Phenyephrine 20mg/NaCl 248ml/Vessicant 2ml

3- Potassium Chloride 20mEq

4- Fentanyl - every half hour prn

Pulse at time of recording - 87, BP 104/62mmHg, Respirations-10

Nicole hopes to be moved to a stepped down unit tomorrow - she would still be in the Meyer building at Hopkins just on a different floor. I suppose a lot will depend on the status of the right lower lobe clearing and her swallowing test.

Several people have asked us about flowers. Of course while in the NCCU (Neuro Critical Care Unit), she can't have anything in the room. But speaking with Nicole prior to the surgery, she mentioned her cats would destroy any flowers/plants she might receive.....and honestly, I think she'd prefer a card or a gift certificate to her favorite store, Target, over flowers!

The Longest Day

Good morning, it's Nicole's mother, Susan, taking over at the writing desk helm for Nicole while she's in Johns Hopkins.

Tuesday, September 22nd proved to be one of the longest days in my life and probably feelings were the same for Matt and Nicole's father, Rick.

At 5:15am we arrived at the hospital and were waiting in the first of many waiting rooms with at least 10 other patients and their families scheduled to have surgery that morning. Nicole was taken back to be prepped for surgery. At 7am Matt, Rick and myself were allowed to meet in the surgical prep area (see photo). We were the last to be called back as there had only been one phlebotomist that morning and Nicole was the final patient to get her IV started.

Dr. F, the main ENT surgeon, had already been in as they had not been able to find Nicole's surgical consent earlier and had her re-sign that paperwork. While we were with Nicole, Dr. Z, anesthesiologist, completed her examination and Dr. S, another ENT surgeon, (Dr. F's associate) marked the L side of her head (Yes, let's get that right.). Dr. S will be the physician to test her swallowing capacity on Thursday. Until then she's NPO. Dr. Sa, the head anesthesiologist, and Dr. T, the head neurosurgeon also came by.

At 7:30am, Matt, Rick and myself were moved to the GOR (general operating room family waiting area). We were told it could be an hour before they would actually begin the surgery. Our first update came at 9:24am indicating the surgery was underway with Dr. T beginning the procedure.

Our second update came at 11:05am - they were still operating.

Our third update came at 1pm. Nicole was stable and Dr. F was ready to begin his component of the surgery. Nicole's uncle, Steve, came to join us in 'the wait'.

Our fourth update came at 3pm. They hoped to be finished by 5pm.

By 4pm everyone from our original group of surgical patient family members beginning at 5:15am had met with their surgeons and had gone to recovery. Even the renowned Dr. Ben Carson had completed three surgeries in this time frame - had come to talk with three different families and we were still sitting there. Nicole's cousin, Cammie, had joined us as we waited....

At 4:30pm we were told the procedure would be 45 minutes more and that everything was going well. By this point I sincerely doubted they would have told us otherwise. What were they going to tell you over the waiting room phone - 'things aren't going so well?' This is when the waiting got to be a very long process....

At 6pm Dr. T came out to speak with us. The tumor was a VS and he felt he got it all! Dr. T indicated if you had an option to pick a VS or a meningioma, this was the way to go. The tumor was pretty stuck to the facial nerve, so he expected Nicole to have a level of facial paralysis... although he hoped this would resolve with time.

We moved to the NCCU waiting area (Neuro Critical Care Unit). Again to sit and wait until we could see her. I was really anxious about this part of the day as I remembered how horrible my father looked after his brain surgery for a meningioma. When Matt and I were able to go back around 6:30pm, she looked amazing! They had only shaved the area of hair behind her ear and she wasn't bandaged all over her head. There was the predicted swelling and some roving eye movements, but truly incredible for what she had been through. She was having some trouble breathing and wanted to cough. She was getting a little anxious because she couldn't clear her lungs and couldn't swallow so they gave her a nebulizer treatment with Albuterol to open her airway, which seemed to help. There were some right lower lobe concerns which they were going to watch overnight. She had also been on medication for low blood pressure, which they hoped to wean her off of. When a short PE was performed she did really well, but as expected, she couldn't focus both eyes without dizziness and nausea. There was also the aspect of not being able to swallow. She expressed fear to the nursing staff that she was going to fall asleep and aspirate. She said her pain level was a 7 out of 10.

By 8pm (visiting hours had been 5-8pm), Matt, myself, Rick, Steve and Cammie had been given a few minutes each to spend with her. At 8:20pm, Matt and I were asked, in a kind way, to leave so she could rest. The staff was to call Matt if there were any concerns which developed overnight.

The Last Hours

Wow, the countdown clock as I type this now reads 8 hours, 25 minutes.

I've been thinking for weeks just exactly what I might write on my last pre-op post. Ideas have mostly included award speech type lists of thank yous and/or things I'm grateful for. But honestly, how is it possible to even begin to list all of that out. The sheer number of just people that I have to thank is huge. I can't begin to express how much the outpouring of support has meant to me. I really never knew how many people out there really care until this last month, and it's been so overwhelming.

But, to try.... (Don't be offended if I forget someone! I do have a brain tumor after all [and only a few more hours to use that excuse]!)
Thanks to everyone that's followed along, sent a message, sent warm thoughts and prayers, and offered help in so many ways. Thanks to all of my family and friends who have made up a list of over 30 'volunteers' we can call on in the coming weeks. Thanks to my friends at Maryland General and University of Maryland for your cards and collections and boxes of fruit. Thanks to the Stitch and Bitch ladies for the most beautiful quilt! Thanks to Jenn for my comfy knit slippers. Thanks to everyone who's kept me occupied the last month so I didn't go stir crazy. Thanks to my parents, through birth and through marriage. Thanks to my kids and my husband for just being them.

I also thought maybe I'd be able to post some sort of spiritual epiphany or life lesson to share. It hasn't really come, though. At least, not the epiphany. I remember that hectic hour or so in the ER between when they told me the results of the CT scan (that I had a brain tumor) and the results of the MRI scan (that it appeared noncancerous), where I felt a panic that I didn't "get it" yet. That whole "meaning of life" thing. While laying in the MRI tube, I was staring up at a scratch in the paint of a blue stripe that ran the length of the tube, listening to the random clicks and hums and other terrifying noises it makes around your head. For a moment, a split second, I though "Oh my god I already died, and this is it. I will be in a tube with weird noises around me for the rest of forever!" Maybe I shouldn't share that, I don't want it to be upsetting to anyone, but it was an interesting moment to me.

Anyway, I think the only really conclusion I've come to is, "It doesn't really matter." I may want to "get it", but I probably never will, if there is anything to "get" in the first place, and it doesn't matter. It just is, and it's great.

As for how I've been feeling...
Last night, as we drove away after dinner at my parent's house, the house I grew up in, I started to feel just bad. Like a big ball of nerves rolling down a rollercoaster track. I ended up feeling so much like I was going to vomit that I took a zofran, one side effect of which is drowsiness, so I did finally fall asleep. I just couldn't help but think about all the possible situations and outcomes, and being a nurse and having been in OR cases before, I could almost hear the doctors and nurses saying all these scary things.

During the day today I had some business-type things to try to figure out and phone calls to make that stressed me. Especially with how over-prepared I'm trying to be. I'm hoping that it's all straight now or straight enought that it can wait until I'm out of the hospital. We'll see how long that ends up being, whether it's the three days insurance pre-approved or the six to ten the doctor said I'd probably need.

Tonight I'm feeling an odd sense of calm. Of course I was teary putting everyone to bed, but I know it's not going to be the last time. I sure will miss the kids while I'm in the hospital. At least I should be bored enough without them that it will force me to rest, because I know I'll need it most.

Speaking of which, I suppose I should try to catch at least two or three hours sleep before I have to be up. I had considered staying up tonight, especially when anticipating that I would be, well, a mess. However, I think I could sleep pretty well, so it's probably worth trying.

I hope everyone enjoys the indian summer this week is supposed to bring, along with the rain. Let me be the first to say Happy Fall! My family will likely be updating the blog at some point for me, so keep on the look out for updates.

And I'll catch you on the flip side.

The PreOp Picture Post

This week I've been trying to keep busy. Not with huge things necessarily, but with everyday things that make me happy. Like taking Benjamin to his first soccer practice, watching The Biggest Loser and eating brownies with Liz, play dates with friends we haven't seen in awhile, and watching old movies (this week it was "Giant") with Matt. Today my mom took the kids and I duckpin bowling. I've also been eating whatever I want, just in case I'll end up with a feeding tube for awhile, including pizza, sushi, and ribs.

Unfortunately headaches have been a big problem this week, and nerves are getting the best of my stomach. Emotionally it's up and down. Sometimes I feel so ready and pumped. Like, "Let do this thing! If I can birth a 9+ pound baby in my parents basement no problem, then I can kick this tumor's butt!" But then I get really down, just thinking "what if..?"

One thing that made me teary this week...

This was during soccer practice when the coach asked "If any of you came with a friend, please hold their hand so you don't get separated [when making teams]." Benjamin's never met this girl before. :)

Also..

Brodie was in love with her little friend Vivian, who is only 4 months old. She's been so kissy lately, and even gave the baby a kiss in the eye.

And some pictures of me this week...
With my glasses off, and a face-on shot, you can see the differences in the right and left side of my face. Creepy, huh?

A side view of the curl-hawk.

And a top view of the curl-hawk. What-what!

Finally, some of the planning stuff..

These are goody bags for the kids for while I'm gone. Included in there are Brodie's first Barbie and Benjamin's first legos, so I can make sure they come from me. Also some crafty things for them to do together, goldfish crackers, stickers, and some frog-shaped soaps.


My bag is packed and ready. Long sleeve pajamas, short sleeve pajamas, slippers, socks, toiletries (including chapstick), underwear, a "mini wiffy" (potpourri bean bag), a couple scarves, and my birthday presents from the kids (papers with their names and handprints). All I need to add is some pictures and it'll be ready.

Not long now...

The Planning

I plan. That's what I do. I make lists and outlines, pack and unpack and repack, and worry about things like schedules and scenarios. So that's been the process of the last few days. Now I'm running out of things to do to keep myself busy.

My paperwork is in order. Pre-op work is done. Kids fall clothes are sorted in (including some matching of outfits) and summer clothes sorted out. New pajamas and sweatpants are purchased, washed, folded, and packed. Toiletries are packed. The house is cleaned. A "kid instruction sheet" is typed, along with a list of volunteer helpers. All of Benjamin's activities are added to the calendar.

What is left? What am I missing? Surely there is something else I can do now to make sure things are easier later! Isn't there something I can color code with highlighters or something?

Ah! Need to purchase those scrub caps..

All this busywork is definitely necessary. The more time that passes, the more anxious I get. I'd be lying if I said I slept well the last two nights. I've been tossing and turning with crazy dreams, including one last night where I accidentally took aspirin a week before surgery and they told me it now had to be postponed. The busywork is a nice distraction.

There are my weepy moments, too. When I put my new pajamas into my to-go bag, the 'realness' of it all really hit me, and it hasn't left since then. I get weepy again when I think of things I'd like to do with the kids sometime. Small things like duckpin bowling. Yes, all will almost surely be okay and by winter most everything will pretty much be past me. But the uncertainly of not knowing 100% that I will be fine is, well, terrifying. I also try to think logically, "Well hey, some crazy driver could run you off the road at anytime, and you don't worry about that." I guess it's just that I'm in a car almost everyday, but I've never let an acquaintance cut open my head and scoop at my brains before.

So at the moment the emotional outweighs the physical. My neck is worse this week, and this morning's headache never 100% went away. The big bottle of tylenol only has 2 doses left in it, so that's a milestone, I guess.

I do have to say again a huge thank you to everyone who has read and followed along and offered help and warm thoughts. It really does make a difference! Make sure you go back to August and read "The Thank You"! It still applies.
To everyone who offered help, what I did was made a list with your names and numbers and any specific things you wanted to help with or times you are free if you mentioned them. This list will be out for my family to call you all when they find something we need. It's just easier that way, because as much as I'd normally like to, I don't think I'll be up for orchestrating helpers while I'm "out of duty".

Finally, just to make sure this post ends on a not-so-mopey note, here's an experiment to try:
Push your tongue into the inside of your cheek on the left side. Now do it to the right side. Is the resistance the same? For me, it feels like my cheek is really thin and stretchy on the left, but there is much more resistance on the left. It's weird, and I never would have noticed it before.
Also, you just made yourself look silly.

EDIT TO ADD - One last thing I just thought of. I hope this doesn't come off as rude, but I wanted to ask that anyone thinking about flowers please not send any. Our cats will just make a mess of them and it will be a disappointment for all. :)

The Countdown

The Pre-Op Visit

I had my pre-op visit today. Everything went fine of course. I just had to do an intake triage, have vitals and physical assessment checked, sign some papers, and get some blood work and an EKG. Then I went up to Dr T's office to sign the consent forms for the surgery. All in all not too much stuff, but with the waiting in between pieces it took about three hours. So far so good, nothing more needed until I show up at 5:30am on the 22nd. That is going to be an early morning.

Symptoms wise I'm having an okay week. I notice the difference in the sides of my face more and more, and I've noticed sometimes the right side just feels tired. Like a muscle ache. I'm wondering if it's because the muscles on the right are having to try to pull everything up with the muscles on the left not doing much. I notice things like when I'm facing towards the sun, and my eyes naturally squint and my face scruches up, the right is the only one that does it unconsciously. I can move the left if I want to, but if I don't do it I've got one scrunchy eye and one wide open eye. It's weird.

Headaches, dizziness, nausea - all about the same. The worst is when I get a headache that feels like brain-freeze. It's not that it hurts especially bad at those times, but it just feels so wrong, like my brain is really trying to tell me "I need help in here!"
Help is on the way, buddy.

The main thing has just been exhaustion. I'm sooo tired! I've been going to bed by 9:30 lately, and sleeping until either 6:30 or 9 (depending on if it's my day to get up with the baby or not), and still feeling tired. I'm really sleeping the whole time, too, not just rolling around awake. I just want to sleep all the time.

I've been trying to get post-op stuff figured out so I don't have to worry about it in recovery. They are probably little trival things, but I have to think about something. I need to order some scrub caps to wear to work, since I don't want to scare the patients. (After all, do YOU want the nurse who looks like she just had brain surgery?) I tried to get contacts yesterday, thinking if I end up needing an eye patch on the left side it will be dumb to wear glasses over both eyes. The eye doctor didn't think it was a good time, though. He said "Even though it shouldn't effect your eyesight, doesn't mean it won't. Also, dexterity will probably be an issue for you in the beginning.." and demonstrated trying to put a contact in and instead jabbing my cheek with a finger. Point taken.

I'm also thinking about seeing how much it would cost to have a cleaning person come in a time or two. Our house is small so I don't think it would be that bad. I know me, though, and if there is something I probably should not be doing while recovering, I will want to do it. Even if it's a chore I wouldn't normally care for when able-bodied. Better to just plan for someone else to take care of it in the first place.

I may be calling on all those who have volunteered help pretty soon. I know my kids will be bored and/or stir-crazy if we're not doing much fun stuff, so if anyone wants to spend just an hour or so with them I know a new face with new energy will help. It wouldn't be babysitting per se, just playing!

And of course I need to figure out who to trust with updating the blog while I'm out...

The Hair Cut

Before

I've always wanted to try having a mohawk, but there's never really a good time for "extreme" hairstyles like that. When they told me about how much hair they'd be shaving, though, it seemed like a good chance to try it out. Besides, I think they may be coming in fashion somewhat, with people like Rihanna sporting them.

During - Notice the child's hand..

It was a family affair. Benjamin had just buzzed his hair (he wanted to do it on his own..) and was happy to help with mommy's. Brodie watched from the stroller. Both kids were quite amused with the end results.

After. At least the best pics I have right now.

People may stare or whatever, but I think I ought to get used to it. It's only going to be worse with a big old scar, not to mention if my face is all droopy and I need an eye patch or something. Plus, who cares. I think it's kinda cool and fun. If there was ever a time to let go of the importance of looks, this is it!

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.

The Question List

Two big appointments tomorrow. Luckily the past few days have gone by pretty quickly. It seems I have an up week, then a down week. This is a down week. Headaches, neck aches, dizziness, nausea. I even had to take a couple zofrans. I'm not weak and I cope well, I mean my first baby was a 9#4oz homebirth after a 24 hour labor. But if there are two things I cannot stand they are headaches and nausea. The dizziness is just obnoxious. Sitting here now, if I lay my head back and look up at the ceiling I feel like my face is swirling around in a circle and my eyes can't stay still. Still haven't outright fallen over but I always have that fear.

I also keep getting this weird feeling that comes in waves, where it feels like my head is filling up with goo and swelling, and my ears start to feel like they need to "pop", but of course I can't pop them. It gets to a point and then just goes away. ??

I'm trying to work on my list of questions, and this is what I've got. I hope it covers everything! And even more than that, I hope he can answer all these questions.

-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)?
-Are my symptoms (or lack thereof) typical?
-How many tumors of this size / position have you treated? How many of people my age? Any chance of NF2?
-Which surgical approach will we be using? Why?
-Can you give me the full step-by-step of the proceedure?

• Is anything used to fill the void?
  
• Is the bone placed back in alone or titanium or what?
  
• How much hair gets cut?
• Do you retract the cerebellum? What kinds of effects does this / may this have?
• Is a drain in the back standard?
  

-How many people will be in the operating room and what are their jobs?
-How long will the surgery take? How long in the hospital? How long for recovery?
-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?
• Hearing preservation?
• Tinnitus?
• Facial paralysis, taste problems, swallowing problems, facial pain / numbness?
• Eye problems?
• Balance problems?
• Headaches? (Esp with the retrosidmoid approach)
• Cognitive problems, fatigue, depression?
• CSF leaks?
• Hydrocephalus?
• Meningitis?
• Seizures?
• Death? (From what?)

-Medications - Anything I need to take preop? What will I be given postop?
-What is the frequency of postop MRIs?
-What kind of preop things need to be done now / what is the next step?
-What things should I be avoiding / not doing right now?
-When can we do this thang??

I'm getting nervous again. Everything seems fine until I think BRAIN SURGERY, and then it's scary. I don't know if I'll feel better or worse after tomorrow, but hopefully I'll at least be less confused. Half the things I read sound like there is a hard road in front of me, half sound like this is so common it's no big deal. But neither half has my exact tumor and brain, so who knows?