an update seeing Dr. mckenna and Dr. Barker

[jacki1120]

So here's my latest update. Since Jan 30,2015 when I was diagnosed with my 3.5 Cm an I have had an appointment with a neuro oncologist and a neuro surgeon. Both appointments were extremely informative but they lacked what I wanted most,a surgery date.  I want it over already. It's amazing how something so small has the ability to consume your thoughts. It's hard to plan with a 7&5 year old when you don't have a date.  Nonetheless,  the last surgeon stated that due to the size and location of this pesky bugger ,I'm looking at a 12 hour surgery and 4 weeks in a rehab hospital. Was anyone else told this?  My next appointment is March 9 @ Mass eye and ear with Dr. Mckenna for an audiogram. After that will be appointment  with the neuro surgeon Dr. Barker on March 12. I'm hoping that this is it for doctors and appointments. That I will be given a surgery date and can start the planning. Thanks for support!

[CHD63]

Hi jacki1120 .....

I know it is frustrating not to have a plan, but it really is important to have the best plan and sometimes these things take a bit of time.

Dr. Barker is on the ANAUSA Medical Advisory Board so I know you will be in good hands with him, as a highly experienced neurosurgeon in removing acoustic neuromas.

March will be here before we know it and I am sure those of you in the northeast are rather sick of snow right now.  Your March dates with Drs. McKenna and Barker will hopefully give much needed time to clear pathways and allow for some melting between now and then.

Many thoughts and prayers.

Clarice

[jacki1120]

Thank you Clarice.  I couldn't agree more aboutfinding the right doctors for this procedure. It was just frustrating seeing two specialists that couldn't do it.  I traveled through 2 storms.  I'm just trying to plan on childcare.  Is a rehab hospital common?  Is it necessary?

[CHD63]

Hi again .....

A rehab hospital following AN removal is not common, but I have seen other patients on here who have gone to one.

Several things would factor in on why one might be needed:  your general health before surgery, any unusual complications that might occur, your caregiving situation at home, etc.

I have had two acoustic neuromas surgeries.  Following the first surgery, I had extreme balance issues (because I have no vestibular function on either side), necessitating using a walker for a couple of weeks but I still went home after a five-day hospital stay and did fine on my own with help from my daughter-in-law for a week.

When you see Dr. Barker, ask him about the rehab hospital.  Suggesting four weeks in a rehab hospital seems extreme to me before they even start your surgery.  Did Dr. Barker's office say this or the first doctor(s) you saw?

Check out these questions before your appointments:  https://www.anausa.org/pretreatment/questions-for-your-physician

Clarice

[Mimispree]

Jacki:

I too am very sorry you are dealing with the stress of being in the hallway between discovery and recovery. 

Whatever you do after surgery, get childcare for the first month after surgery.  It becomes clear reading this forum that no one recovery is the same, but most of us will agree that giving yourself a month on the Mommy sidelines is a good idea.  You don't want to lift your kids and your balance may be difficult during that first month making cooking (looking up and down, bending, etc.) hard.

I know how hard it is for a Mommy of a 5 and 7 year old to imagine taking a break, but if you can't do it now, when can you do it? 

Get some easy crafts, coloring, storybooks or Legos that the kids can do on the bed with you for some special easy fun with Mom.  You know how much kids love having your full attention while they're doing something. I really recommend letting someone help to make their meals, get them on the bus, do homework, etc. for the first month. 

Our thoughts will be with you and I'm so glad Clarice can offer you reassurance that you are in very good hands. 

Be well,
Michelle

[jacki1120]

I am so nervous!