Pre-Surgery Appointments (Round 1)

It is taking me a little while to get these posts up because I'm realizing that revisiting this experience is pretty difficult for me.  Emotionally, I am doing pretty well now, but between July 4th of last year and sometime earlier this year, life was tough.  We had so many unanswered questions and I was constantly sick in one way or another.  It's very freeing to be out of that stage, at least for the foreseeable future, but going back and reliving all of those difficult moments for the purpose of blogging is challenging.  Still, I think it's important to share these posts, so I'm back to put a few more up today.

After my first round of pre-surgery appointments (I had two rounds of appointments right before surgery because my neurosurgeon changed), my husband and I started an e-mail group to give people updates of what was going on with my surgery and recovery.  This e-mail group was a really good idea.  We weren't ready to go totally public with what was happening, but sending an e-mail was much better than having to explain all the details to our individual friends.  Most of this post is from the e-mail I wrote after my pre-surgery appointments.

I had had surgery twice before my brain surgery, but both of those surgeries were c-sections.  There isn't much prep for a planned c-section.  Your doctor decides on a date, you show up, you get your spinal, and they cut you open, take out the baby, and sew you back up.  But for brain surgery, I had a few special pre-op appointments.  I went to my neurosurgeon (summary of that visit is below) and then had an appointment with preoperative medicine.  Prior to scheduling this appointment, I had no idea preoperative medicine even existed as a hospital department.  It was a pretty easy appointment.  There was some blood work, questions about my health and allergies, and a nasal swab so they could make sure I didn't have MRSA.  So, if you have to go in for a preoperative appointment, don't worry, it's no big deal.  Unless you have MRSA, and then I would guess it is probably a bigger deal.

Here's the recap of my slightly more exciting pre-op appointment with my neurosurgeon(s).

On Friday, September 1st, I had an appointment with my neurosurgeon and an appointment with pre-operative medicine at OHSU.  When we went to my appointment with Dr. D, the neurosurgeon, he told us that my functional MRI (completed August 24th) showed my tumor is bordering two of my speech production centers.  Because of how close the tumor is to these sensitive areas and because things shift a bit after they open the skull, they don't want to rely solely on the MRI mapping for guidance during surgery.  Instead they want to do an awake craniotomy, and Dr. D does not do that type of surgery.  He called his colleague, Dr. R, to come talk to us about doing an awake craniotomy.  Dr. R will be my surgeon now, and he said we can do surgery on September 19th.  We still don't know all of the details, but this is what we were told on Friday:

- I will not have general anesthesia at any point during the surgery.  Instead I will have a nerve block and local anesthesia where they cut my scalp and skull open and where the pressure points are holding my head in place so I don't move during surgery.  If I cannot remain calm during surgery, or if I throw up or have a panic attack, they will have to close me back up and try again with me under anesthesia.  So please pray that I will be completely calm before and during the surgery.  

- They won't shave my head, or at least not very much.  Instead I will get some funky braids and grease to keep my hair out of the way.  (I have to admit I'm a bit relieved about this one.)  But I will have a pretty big question mark shaped scar.  I am also relieved that the surgeon said he would be happy to use metal staples instead of dissolvable ones.  Usually they use dissolvable ones so the patient doesn't have to experience the pain of having metal staples removed, but metal staples form a better scar and I had long-term problems with dissolvable staples after my son P was born.  I'm sure having the staples removed won't be fun, but it would be totally worth it to avoid over a year of staple problems like I had after P's birth.

- I will be talking to a neuropsychologist during the surgery, and the neurosurgeon will have a mirror to see my face throughout surgery so both can monitor any changes in my speech and expression throughout the surgery.  This also means I will be able to see the neurosurgeon.  I'm not clear on whether they will have something blocking my view of my brain though.  I hope so, but the neurosurgeon said it would be an "undraped" surgery.  I'm not sure I will be able to handle seeing what is going on.

- Surgery will take about 4 hours.  They will use a 40x microscope to make sure they remove as much of the tumor as possible without removing my other brain matter.  Because I teach for work and speaking is really important to me (like REALLY important) the surgeon will prioritize preserving speech even if it means leaving behind a little bit of the tumor.  Based on the MRI the neurosurgeons think that my tumor is likely benign.  They think it is a low grade glioma, so even though it is hopefully benign right now, because it is a glioma, there is a high risk of it turning malignant at any point and once it does it becomes much harder (nearly impossible) to fight.  They think it is benign because the boundaries are well-defined and they don't see any necrosis (cell death).  Also there was no growth between my July 4th MRI and my August 24th MRI.  Removing a significant amount of the tumor will decrease the risk of future malignancy by reducing the number of tumor cells that could become malignant.  Also, removing the tumor allows for a complete pathology report so we know what the tumor is and what genetic markers it has.  If they only do a biopsy without removing the whole tumor it's possible that part of the tumor has different characteristics than the part they removed.

- The plan is to be in the ICU for one night after surgery.  Apparently they check my neurological response every hour, so even if surgery goes well, this will be a pretty awful night.  It should get better once I'm moved to the neuro ward.

- The risks of surgery are not insignificant.  While unlikely, there is a chance I will not be able to speak after surgery.  If I remember correctly, sometimes the loss of speech happens a few days after surgery.  Should there be any speech deficit after surgery, the doctors are hopeful that I will be able to regain my speech with therapy.  

- I will likely go home from the hospital on Friday, September 22nd.  I will have a follow up appointment a couple weeks after surgery and then every three months for the first year.  I'm pretty sure I will have routine MRIs for the rest of my life to check on tumor growth, but I'm not sure about the frequency.

I should be hearing from Dr. R's scheduler on Tuesday or Wednesday to confirm my surgery date and give me a time and also to schedule another appointment with Dr. R on September 14th.