two months post-op

[marjoryb]

My Acoustic Neuroma  was removed on 7/7 - so it's been only a little over two months.     My eye is very dry and does not yet close completely - sometimes I can get it to work and other times I feel like a lizard.   I use eye drops and eye lubrication and at night I put a piece of saran wrap over the eye to keep it moist.   I'm sure that it will be only a matter of time before I can close my eyes - separately or together - and smile on both sides of my face!  There is definitely marked improvement over the past two months.
 
My balance is still off and I've been doing therapy, but every once in a while I'll  swerve into a wall or topple over when I'm getting up off the couch.     I have been getting headaches - mostly when I bend over to pick something up, but I've had a few that have been debilitating.    I've been able to manage the pain with Tylenol, but the time between onset and when the medicine kicks in is more pain than I've ever experienced (even compared to birthing 3 kids).

I was so focused on the surgery and actually going through the procedure that I never thought about this side of it - the recovery.  I have not yet gone back to work but tried a dry run yesterday - it was exhausting after only 4 hours.  Generally, I feel OK, but I was very active before surgery and now I feel - at times - like an invalid or an old lady (at 56).      I know that it's likely that it'll take a year or more before I'm "normal", but I'm anxious to get back at it.

[Sue]

Hi Marjory -

Wow, sounds like you are doing pretty good since your surgery. Well, except for those headaches.  That seems to be a side effect of surgery that can be a most uncomfortable and frustrating thing to deal with.  Others on here will certainly chime in with their experience. I do hope that this will go away for you, but I would talk it over with your doctor. There are meds to take that will manage your pain better if the Tylenol isn't strong enough.  That's my only advice, but I have been lucky and haven't had the headache issue, but I certainly feel for those who have to deal with it more often than not.  Good luck with your continued recovery. 

Sue in Vancouver

[Gennysmom]

My surgery was on 7/5 and I know exactly how you feel....except I've been lucky enough to not have headaches.  This is my third week back to work, and the first week full time.  I'm exhausted.  But I have found that the only way to get past it is to work through it.  Not overdoing it, just not backing off if things are a little hard.  The first couple days back were the hardest....I went home and napped for 2-3 hours afterward...but slowly you don't need that anymore.

My face/eye are slowly coming back as well.  I don't need the drops/ointment much anymore, although I still am not blinking right.  

What approach did you have and how big was your tumor?

[marjoryb]

According to the operative report, I had a left suboccipital craniectomy for resection and microdissection and suboccipital titanium cranioplasty.  The tumor was 16 x 21 mm.
Marjory

[Joef]

  Everyone is different of course, but I think the old timeline of one month per 1 hour of surgery before you feel "normal" is about right. I did go back to work after 8 weeks,  but came home and went to bed for the night !!! .. it really did take about 6 months before I felt "normal" again .. now 13 months after surgery, not only I'm I better than before surgery .. I'm better than I have been in a few years! hang in there!

[Battyp]

Hey Margory, I had the same thing..fancy term for brain surgery eh?   
I'm still not back to work but that is because of my throat problems at this point.  the faitgue has gotten somewhat better.  I'm only good for about 3 hours outside of my house.  Of course at 2 mos post op I couldn't even sit up or dress myself so you're way ahead of me!  I started using fiorcet for the naggy headaches.  The tylenol wasn't helping the bad ones.  I've suffered from migraines for years and have a tolerance but they can sure zap you post surgery!  Hope they go away for all of us soon!

[Captain Deb]

marjoryb,
As a post op headache sufferer of 3 1/2 years, I know how debilitating they can be. Does your surgeon know about them? I've found Imitrex to be my most potent weapon against them--I use the injectible. Also there are some good preventative meds out there as well.  Give it a while, but just remember that the surgeons aren't headache specialists and generally will just dole out pain meds.  Of course my neurologist tried just about everything else first, so I had quite a long time of suffering with these nasty things. After 3 1/2 years, I finally went to a headache specialist at a headache clinic, something I wish I had done at 6 months post-op when I was in worse shape than just after surgery. For some of us they just resolve themselves in about a year, but for some of us they don't. I hope yours clear up soon!
Capt Deb

[ppearl214]

marjory, oh, hun... you are doing great and right on target as a "postie" (post-treatment).  That is what I love about this forum.  Those that share the "after affects" of all forms of treatment is so imperative for "newbies" to hear and learn about.  We all know that "individual results may vary" as many here that have had treatments (ie: myself and radio as well as Sue, shoegirls, etc... and gennysmoms, taylor, chris, katie,  and their surgical outcomes) can share so much about immediate and long term (ie: our fearless Cap'tn, matti, battywench, crazykat, etc) share with us.

I have a brochure I picked up from Brigham/Women's about "Brain Tumors and Fatique" that I shared with Capt'n Deb (I think she did a post here in "Post Treatment" about the brochure I shared with her).  It goes into great depth about fatique in those that are pre AND post treatment. I've scanned it into a .pdf file (Adobe Acrobat/reader required to open it, which can be downloaded for free from www.adobe.com). I'm more than happy to email it to anyone that is running into it.  I found it exceptionally informative and even provide remedies on how we can counteract. It's a great tool, as welll, for the 'caregivers' that are in our lives as we go through this journey.


Hang in there hun... you are doing fabulous and continued recovery and wellness to you!

xo
Phyl

[marjoryb]

Capt. Deb -Thanks for your responses to my two month post op message and thanks to everyone else who posts.   It's reassuring to know - even though each of us is different -  that what I'm experiencing falls within the norm.   You mentioned that you went to a headache specialist - what type of doctor is a headache specialist?  Were your headaches sinus related?  When you take your medication , how quickly does it kick in after onset of your headache?  I feel like my head will explode during that time.   My husband and I took my daughter to Boston College and I spent the first day after flying up there lying around moaning in such pain that I was useless .  I found little relief with any medication , even Oxycotin -- I'm not sure if the flying messed me up or the anxiety of sending off my last child!   I'm sure I made a great impression when I met her roommates and their parents - black eye patch and all.

I have one more question - how long does it take before your head stops feeling like it's a block of wood?  The feeling in my head has slowly returned and now it feels kind of tingly - like a limb that has fallen asleep and is returning to normal.  I know they took a drill and opened up my skull and that will take a little while to mend, but how long is that?