Introducing myself--Beat breast cancer one year ago, now I'm gifted with AN

[harbormom]

Hi everyone, 
I just joined this forum.  Last July (2017) I was diagnosed with breast cancer.  I beat that by choosing a bilateral mastectomy (even though the lumpectomy had clean margins).  Nodes were negative.  I had reconstruction phase 2 in December 2017.  I had reconstruction phase 3 (fat grafting) in May 2018.  I thought I was good to go and started enjoying this summer.  Well, after loosing much of my hearing on the left side within a matter of days in June (2018), I went to the ENT.  Sure enough, major hearing loss.  I went for the brain MRI the following week and diagnosis was a 1.7 cm AN.  Since then, I've noticed my ability to taste has decreased and I have a tiny bit of facial tingling on the left side.  My left eye also tears a lot. I'm scheduled for surgery (retrosigmoid) on Sept. 6.  Here I go again--another darn surgery.  Both an Otologist/Neurotologist and a Neurosurgeon will be doing the surgery--Each of which heads their department.  I'm in good hands.  Any suggestions for when I wake up after the surgery?  Hints of sleeping positions or comfortable positions in the bed?  Anything at all will be appreciated.

[staypoz]

Hi, Harbormom.  I'm sorry you are having to have another surgery so close on the heels of your breast cancer surgery.  I had the opposite sequence -- AN followed in six months by surgery for kidney cancer.  I learned through my experience the difference between life threatening and life changing.  You've already experienced some of the possible life changing aspects of an AN, but as brain tumors go, this is a good one to have.  It sounds as if you have found a treatment team you trust.  Good luck with your surgery.  I'm 14 years post-op and life is good.   

[v357139]

Hi there.  Welcome and sorry for your issues.  My advice is to focus on how happy you should be that this is treatable, and you have great doctors.  I did not have any pain at all.  Did not have to worry about how to place my head or anything.  Perhaps you will be the same also. Best of luck, and keep us posted.
Rich

[SueLL]

Hi!  I just had surgery this summer.  Sleeping positions were not an issue; however, my neck muscles were stiff, sore and painful when I woke up.  Luckily just sitting up straight helped the muscles stretch out.  For the first month I took a Tylenol as soon as I had some food to help.

A veteran recommended requesting a muscle relaxant after surgery and that was so helpful in the early days!  Your head will be in an awkward position for hours during the surgery and it takes a bit to recover.  I found the muscle relaxant to be more helpful than pain relievers. 

Best of luck!

[Citiview]

One thing to note is that Harbormom has deleted the account because she appears as a guest.


If you are still reading the forum please note that people care.

[harbormom]

Hi,
I'm back.  I did delete my account because I didn't get any replies for quite a while after making my first post.
This week was a busy one.  Three different doctor visits in one week.  #1 was Pre-Surgical testing for the AN surgery.  #2 was 6th month followup with breast surgeon who performed my bilateral back in Aug. 2017.  #3 was my visit to Primary Care Physician who went over all of the pre-surgery testing and gave his OK for the surgery to proceed.  This #3 doctor appt. took place today.  Primary care physician wanted me to have one more blood workup for thyroid function.  Luckily, I was able to run over to the hospital lab and get it done with 7 minutes to spare before they closed. 

Surgery is scheduled for Sept. 6th (unless something weird comes up that makes it necessary to change the date).  I'm planning (hoping) to spend next week enjoying the last bit of summer without doctor appointments.  I've been a good sport through all of this crap over the past year, but the thought of someone drilling a hole in my head is a bit unnerving.  I have to let go of the worry and trust my surgeons.  I have 2 of the best on Long Island--working together as a team. 

[harbormom]

Thank you everyone for sharing your experiences with me.  When searching online about acoustic neuroma patient's post-surgery experiences, there seem to be so many bad outcomes as opposed to good outcomes.  It's enough to rattle the nerves.  Logically, I know I'm in very good hands.  Logically, I know there has been so much progress in reducing the incidences of permanent nerve damage.  Now, if I can somehow magically manage to eliminate the emotional aspect and focus on the logical aspect, I'll be able to reduce my anxiety this upcoming week.  I'm going to try to make this week before surgery a bit of a staycation--hit the beach and maybe go out to dinner once or twice. 

Is there anything you recommend I bring to the hospital?  I know they don't want you to bring anything valuable.  I was told the hospital is freezing (I know someone who is in there now post spinal surgery).  One of his visitor's recommended I bring a sweatshirt and a cozy throw blanket.

[H.Savoy]

Hi Harbormom!

I can sympathize with what you are going through. (3N BRCA in 2007, then 2014 VS).  As I am sure you remember from the BRCA, everyone's treatment affects them differently, so that being said....  When my surgery was over, I had the worst headache ever (so you might want to reconsider any clothing that you have to pull on over your head), and it was somewhat difficult to eat due to the facial nerves being aggravated during surgery.  Soup and fruit plates were the easiest.  My left side did not cooperate for a while so most chewing was done on the right.  I was also warned that no matter how you did with anesthesia in the past, most head surgery patients do throw up...and alas, that was my case.  if they don't provide you with something you can reach yourself, you might request something. (I had the rotation Doc and some interns come check on me.  While they were talking to me, I needed to throw up (hand on mouth)...they all scattered in the room looking for something (even though a garbage can was totally within eyesight)...they didn't find anything before the bed got it.  Having sheets changed while you are in bed with a stellar headache is NOT fun...just saying.)  Be alert for any extra drainage after surgery.  In my case it would frequently be almost like I had taken a drink of water and needed to swallow, there was also some dripping from my nose (one sided) when leaning forward.  This turned out to be a cerebral spinal fluid (CSF) leak that they had to go back and patch.  This is something they should discuss with you if they haven't already.  Best wishes for a speedy recovery!

[harbormom]

Hi @Savoy

Thanks for you advice.  Yes, I was informed of the chance of a CSF leak.  I will bring a soft button down shirt (remember needing to use button down shirts after the bilateral surgery--couldn't raise my arms for quite a while).  Maybe I should bring a puke bucket too  . When filling out my pre-op medical info, I did exaggerate when I had to answer the question about whether I had ever experienced nausea and/or vomiting after anesthesia.  I've had quit a few surgeries and only once did I ever feel nauseous. For that one time, I immediately raised my hand in the recovery room to let the nurse know.  She gave me a shot of something and the feeling went away almost within a few minutes..  Anyway, I told the pre-op nurse for this upcoming surgery that I did experience quite a bit of nausea/vomiting post anesthesia hoping that they will keep me well medicated with anti-nausea meds. 

[harbormom]

I did it. Just released 4 days after 7 hour surgery. Saved my facial nerve!  How do I post pics?

[harbormom]

Nevermind.  I'm going to use the facebook group.  It's more active.

[Citiview]

Congratulations on a successful surgery Harbormom.
Yes, the forum isn't very active and a lot gets missed.
Good health to you with the cancer as well.
I know how nice it is to get those good reports as well!

[jami]

Congrats on the successful surgery!

Mine was removed 8/14, and some parts of the recovery are easier than expected, but many are slower. 4+ weeks after, my #1 advice is to listen to your body. If you are tired, rest. My family would tell me when my eyes/face started to swell, and soon after my eye would itch or my face start to ache. The days I didn't listen, I always regretted.

I also have been doing a lot of meditation to help relax (can i mention the app "CALM"?) and remembering that there is a lot happening under the covers to heal. I am so sorry that you have had two significant issues pop up -- my thoughts are with you and your family!

My next step is to consider my diet more carefully, I think they will help with things like headaches.

Best --

Jami