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[unwelcomebraininvaders]

Are you still there?

I will be having another surgery on June 13.  This is a re-schedule from May. (due to me catching COVID in April) I have mixed feelings about this surgery.  Why?  For many reasons...I am very likely to look worse after this surgery for at least 3-4 months.  I already look “interesting”.  I haven’t been able to close my right eye since last September. I have not been able to smile since then either.  I also have oral incompetence.  It’s kind of like leaky bladder, but of the mouth.  Anyway...the surgery is cranial nerve 5-7 transfer.  Why am I doing this?  Since my facial nerve has not yet shown any definite signs of recovery.  My cheek muscle on my right side has not moved since Sept 2021.  Muscles tend to die off after a year of non-use.  If this nerve transfer is successful it will perhaps mitigate further decay of the muscle while I wait to see if my facial nerve regenerates. It will potentially give nerve stimulation to my right cheek. Anyway....to those of you still being there for me...I love you...thank you for doing hard things.  And thank you so much for being there for me.  To those of you I haven’t seen or heard from since last year...life is hard...there is a moratorium...please reach out.

[unwelcomebraininvaders]

Mis-managed expectations

Nov 13-18

After surgery and for the three weeks leading up to this date--I had been doing quite well.  Progressing with physical therapy etc.  I, seemingly uneventfully, had my stitches on on Nov. 9.   On Nov 13, mid-day I noticed that my hair was wet only on the right side.  Turned out I now had a slow cerebrospinal fluid leak from my incision site.  Great!  So I phoned my surgeons in Calif and they suggested I come in to the ER and they would put in a couple stitches to close things back up and let them heal longer.  That sounds very reasonable but I was two states away.  So they suggested I go to the ER here.  So I obediently present at the ER here, but I’m told they want to do and MRI and a lumbar drain and then stitch things back up.  I say “no way” and leave the ER.  I call back my doctors in Cali and offer to fly down there so I don’t have to endure such and invasive and drastic procedure.  They reassure me that they will talk to the surgeons here and that the appropriate steps will be taken.  So I go back to the ER and basically get admitted and get the same treatment I was initially offered, but since I don’t have cell phone reception--there’s no way to see what got lost in translation.   So they kept me in the hospital for 6 days, when initially I was told I only need a few outpatient sutures.  Looking back I’m really not sure what took 6 days.  Seems so crazy compared to the doctors who deal with more of these rare tumors, who would have just seen me outpatient and give me a few stitches.  Things went incredibly slowly in the hospital.  They admitted me and took all day to accomplish an MRI.  I was in the hospital for a day and a half before I ever even saw a doctor.  They didn’t let me eat for 2 whole days (for no apparent reason)  I was not given IV fluids.  On the 3rd day they finally started doing the lumbar drain.  OMFG was that painful when they placed it.  Then after they placed the drain a few stitches turned in to more than a dozen as they re-stitched my incision.  That wouldn’t have been an issue, except they only gave me enough anesthetic for the first few.  The feeling of the needle going into and out of the skin over my skull--OMFG also incredibly painful.  So after the painful placing of the drain came the actual draining of fluid.  Every hour for 48 hours. I would get a headache and nausea every time they drained.  So they hadn’t let me eat for the 2 days prior to the drain, and once they started the drain, I was so nauseous I couldn’t keep anything down.  So 4 days of very little nutrition or hydration, not sure what happened on the other days...but left feeling very nauseous, dehydrated and weak.  The surgeon and his PA gave me no indication about what to expect when I get home.  The discharge nurse indicates I may not feel my best for about a week.  OK got it.

Nov. 24

It’s been almost a week since I got out of the hospital and I still can’t keep anything down.  I don’t think I can take another day of this so I call my surgeon (here) and get voicemail-so I leave a voicemail describing what kind of condition I’m in and that I think I need anti-nausea meds (and probably IV fluids but I’m too afraid of going back to the hospital to suggest that).  Yes, it’s the day before Thanksgiving, but it’s early afternoon, jthey should have time to call me back.  They don’t call me back.  

Nov. 25 

Well I know they are closed, so I don’t bother calling.

Nov. 26

It’s the day after Thanksgiving and they still don’t answer.  The answering service thinks they aren’t open this day either. So I call my primary care doctor and get anti-nausea meds. 

Nov. 29

I have a previously schedule appointment with a new neuro-oncologist to talk about my future.  I also ask about why I’m still feeling so bad since I was told I might be a little under the weather for about a week.  He advises me that I won’t feel good for about 6 weeks!  That sure would have been nice to know when I got discharged!

I am absolutely in shock about how badly my expectations have been managed.  I actually feel like I have post-traumatic stress.  Six mostly terrible days in the hospital is so different than a few outpatient stitches.  And 6 weeks of feeling bad (I am in worse shape still than when I got out of the hospital from my initial brain surgery) is so different than my surgeon here and his PA not even mentioning that there may be some effects and the discharge nurse only stating that I might feel a little poorly after I ask her.  I could have wrapped my head around all of this had I been warned what to expect.  Prior to the lumbar drain I could walk 5000 steps.  It took me almost a week for me to walk just to the house next door, 170 steps.

[unwelcomebraininvaders]

Oct 12 becomes Oct 22

Oct 11 (day before surgery) So we get the dog boarded, cancel 3 weeks worth of my patients, get the 13 year old kid some adult supervision (thanks Shelby!)  and fly to San Diego.  At the pre-op appt with the first of two surgeons I joke around about can they do a tummy tuck with the fat graft.  The second surgeon appointment is not so lighthearted...he says “so when exactly did you have the avastin infusion?”...based on my reply he says...”you can’t have surgery tomorrow”.  Ummm....what????  “you need to wait at least one more week”.  So I fly home for a week and then fly back. 

Oct 22  Surgery goes uneventfully (I presume since I was completely out) Post-op only results in 2 rounds of barfing.   I’m hitting all the milestones...walking to the bathroom, pooping successfully (it’s a low bar) so they let me out after only 2 days in the hospital.  Thank god since I have a phobia of IV ports and I had 2 at a time while there.  While in the hospital I ask “so how was my facial nerve?”  (fixing this is the main reason I’m going through all of this)  they (the surgeons and residents) respond “it looked good”.   I have 4 follow up visits after being discharged from the hospital.  At the first three we talk about my facial nerve “they talk about how it looked good and they hope that within 6-12 mos I should recover some facial movement -- but no guarantees. The 4th visit is with someone outside of their team.  This was scheduled to discuss an eyelid weight to get my eye to blink.  This doctor’s first comment is “so as I’m sure you know, during surgery it was determined that your facial nerve was unresponsive”  ummm...what???? No, I did not know that.  All I was told was that the nerve looked good.  Unresponsive sounds a lot less positive.  So as I type this I just arrived home in Seattle with my unresponsive facial nerve and some healing to do both physically and emotionally. 

[unwelcomebraininvaders]

[unwelcomebraininvaders]

Background info

Unwelcome invaders of my brain

i decided to share this story for anyone who is interested for two reasons:

1. I believe in the power of prayer and/or intentional thoughts to heal. I could use all the prayers/intentions you can send my way starting Oct. 12.

2. It seems therapeutic at this point to write about this.

So here we go:

The first symptoms:

Back at the end of 2020 I had what I presumed was an upper respiratory infection and plugged right ear. Someone I work with had the same symptoms so I thought nothing of it. After this went on for a month or so I made an appointment with the ENT. They treated me with steroids and my symptoms did not go away. I went back and they tested my hearing. The Dr. ordered an MRI without telling me what he was suspicious of. I assumed some blockage in my ear.

The first MRI:

I go for this MRI. The next day I get an email the the results are posted in MyChart. I look at the results and they talk about two different kinds of tumors. I call my ENT and tell the front desk--"hey I'm kind of freaking out--my MRI report is posted to MyChart and it's talking about me having two different kinds of brain tumors--I don't have an appointment to see the ENT for another week. Can you get me in sooner?" The receptionist--"hmm...let me look....No sorry can't see you for a week" In my mind " @$!&*" Okay...it's up to me to look this up on Dr. Google and see what I'm dealing with. I google--Ok well at least they appear to both be benign--that's a relief. Can I just tell you the panic of not even knowing if they were cancerous or benign and having no Dr. appt for a whole week!

The ENT Visit a week later

Him: "It turns out you have an Acoustic Neuroma which is a benign brain tumor...blah blah blah "

Me in my mind: "No shit -- you are now proceeding to tell me everything I just spent the last week researching online" "Do you actually think I didn't look at the MRI report the day it was posted to MyChart"

Now what

So I spend the next several weeks researching whether to have radiation to try to kill the tumor or surgery to remove the tumor. I talk with two doctors who do radiation and three doctors who do surgery. The two who do radiation think I'm a good candidate for radiation. Two of the surgeons think I should do surgery. The third surgeon thinks I can go either way. Great! A tie!! So helpful....not! People in my personal life advocate for radiation since it's less invasive--so that becomes the tie breaker.

Radiation

I take the week off work and have radiation. It's every day for 5 days. I feel tired during that week and the following week...but then it's pretty much back to normal. Other than the hearing loss...I feel like my normal self again! Yay! This was too easy. (yes it was too easy)

3 months later

Wow I have an earache on my radiated side and feel like maybe I have a sinus infection. Go to the PA at the ENT's office....she gives me a CT scan and prescribes an antibiotic for my "infection" and steroid for my "swelling" A few days later...the pain is now stabbing in my ear and radiating down to my jaw and the right side of my neck. Hmmm...that doesn't seem normal. ENT's office is closed...talk to the ENT on call...he looks at my CT scan..."you don't have an infection" (great! so I've been taking antibiotics for nothing) Just continue taking the steroid. Fine....so now I'm also on 3000mg per day of over the counter pain meds just to keep myself somewhat out of pain. 3 weeks later I talk to the Radation oncology PA. She puts my on a different steroid. Take that for a week....no change. Finally after a month of lots of pain meds and steroids...the pain magically goes away to replaced by....facial paralysis.

Facial paralysis

Alright this kind of sucks. My right eye won't blink and the right side of my mouth doesn't do what it should. But at least the pain is gone!! So make appointments with my care team to discuss paralysis...they do another MRI. "ooh look at the the center of the tumor died like it was supposed to" uhh that's great I guess but there are some quality of life issues with a partially paralyzed face. "well we have never had a patient with your kind of tumor have facial paralysis after radiation" "we'd like you to have Avastin infusions". I think to myself--well you guys seem pretty smart...let's try it.

Avastin Infusion

It took 6 nurses to find a blood vessel to get my bloodwork done and start the IV. SIX!! Do blood vessels hide if you're scared They must. The next day oh my the pain on the side of my face again! After two weeks of respite from the pain I was oh so sad for it to be back again. I call the care team...their response "hmm...that's odd this infusion shouldn't cause pain". Umm well it did.

Exploring my next steps

Once a tumor has been radiated it is more challenging to remove. So I call up one of the top surgeons of these kinds of tumors and ask for him to let me know what my next step should be. His patient care coordinator says he actually wants to speak with me...so we have a phone call. I'm expecting him to say..."if after x number of months you aren't getting better then you should consider surgery". What he says instead is "you should get this tumor removed as soon as possible" OK then. I said, can it wait a month -- He said, sooner is better.

Timing is not the best

I guess the only way timing for something like this could be better is if you have surgery when there is no hurry. But with this timeline my challenges are:

1. I have an office remodel starting 5 days before I leave to fly down for surgery.

2. I am in the midst of hiring a new doctor. When do I onboard her

This unwanted tenant will be evicted Oct. 12

This is top priority