Eight Weeks Post Surgery

I think the Bells Palsy is taking a while to resolve, which is normal.  My right eye still won't tear (I only cry out of my left eye now!) and it is very dry.  I was having sharp pains in my eye until I started using the eye drops several times during the day and the eye ointment every night.  That seems to help.  My right eye is more open than my left, making my left eye look a little lazy.  But you would not notice it if you didn't look closely, and then still maybe not.  Otherwise, my face looks normal.

Still some numbness over my incision and my jaw opening is restricted.  That is slowly getting better.

One new development since the surgery that I have not mentioned yet.  My nostrils seem to be very inflamed.  My turbinates are swollen, and my passageway seems obstructed.  Getting bloody chunks out but not really bleeding so much that it comes out on its own.  This may be totally unrelated...but it started when I was about 2 weeks post surgery and it has gotten much worse.  I can't wait to see my ENT next week and have him take a look.

Appointment March 2nd with Neurotologist, Dr. Danko Cerenko.  Audiogram scheduled before the exam so that he will be able to address my hearing problems.  I am hoping that the hearing loss is not all nerve damage so that he can possibly do something about it.  It's only in my right ear.

Facebook Group for CSF leakers

There is a small group on Facebook with some very good information and over 500 people to date posting their stories.  It makes me realize how very lucky I am...some of these people have real horror stories and no answers in sight.  If you are looking for more info, I recommend this page.

Facebook group for CSF leakers

Seven Weeks Post Surgery

Wednesday, February 16, 2011

Tomorrow will be exactly seven weeks since my brain surgery.  I am amazed at how fast you can recover from brain surgery!  I started driving again 2 weeks ago.  Then I started a walking program to get my stamina and endurance back.  I did that for a couple of weeks before I started back to the gym. 

I am now back in the gym full swing.  I did weight training last week for the first time (light weights, more repetitions.)  Then I did a spin class for an hour (did not think I would finish, but I did!!)  This week I have added Pilates one night and plan to try Zumba one night.  I have been pleasantly surprised at what I can do for the most part, and try not to focus on what I can't do, because I know it will all eventually come back to me with some work.

The hearing loss in my right ear is still a problem.  I have an appointment scheduled with the neurotologist March 2nd and will get an audiogram (hearing test) done then.  He should be able to tell me what my options are for hopefully restoring my hearing.  I still have the tube in my ear.  The only problem with it is that I am not supposed to get water in my ear.  Unfortunately we're going to the Caribbean March 19th and I had really hoped to have it out by then.  I am thinking that's not going to happen!

I have some residual Bell's Palsy, which you cannot see to look at me, but I can feel.  My right eye won't tear and it is a little painful.  Still can't open my mouth wide because the muscle they cut in the surgery also controls the jaw.  That should improve with time.

My wound has healed nicely and I can thank my surgeon for being nice enough to leave some hair to cover it so I would not have to have a shaved head for everyone to stare at!  I know, not many brain patients are lucky enough for that, but I was. 

The brain surgeon has released me and now, I am just under the care of the neurotologist.

Again, I can't believe how far I have come in 7 weeks!

Staples Out!

Friday, January 14, 2011 at 5:30pm

Just a quick update today.  Made it in to get the staples taken out of my head and the stitches out of my back (from the lumbar drain.)  Everything is looking good.  No infections; apparently I am a fast healer!!  The Bells Palsy is improving too.  Still draining out of my right ear but it's yellow, which is good.  Clear would indicate brain fluid. They said I could drain for several more weeks.   I did not see the doctor today; just the PA who is wonderful.  My hearing is still bad in my right ear and I guess that will be something I deal with when I am all recovered from this surgery.  The next step will be a head CT and then follow up with the neurosurgeon in a couple of weeks.  Still on anti-convulsants to prevent seizures and that drug makes me very tired, especially in the mornings.  I take it at 8 pm and 8 am and it makes it very hard to get going in the morning.  My goal is to rest this weekend and hopefully get back to work, at least part time, on Monday.

By the way, for all of you who expected screams from the staples coming out, you would have been disappointed.  It was a piece of cake.  Probably the easiest part so far!  Sorry Dennis...I know you wanted a video but it would have been too boring to post!!

Hope everyone has a great weekend!

Hospitalization and Recovery Update

January 12, 2011

There are things worse than brain surgery.  Many things.  In the scheme of it all, this is only a minor speed bump.  I know that.   I hope that my story can help someone else going thru something similar.  We all deal differently and writing has been cathartic for me thoughout this whole process.

In all my research, I failed to ask the question "how will I feel after the surgery?"  Maybe that was divine intervention.  The first day/night in ICU was just awful.  I was not sure I was going to make it and not sure I wanted to!!!  Poor Mike having to watch all that.  But he was a real trooper and helped me thru the worst of it. I remember seeing Aunt Annette, Uncle Jerry and Jeff during that time too.  Thanks for being there for me and Mike.

The surgery itself went well and took about 21/2 hours.  The neurosurgeon said it was much worse than he thought.  One leak turned into 3-4 leaks but he was able to repair them all.  He felt really good about the surgery and even anticipated me going home on Sunday after Thursday surgery, but that was not to be. After they removed the lumbar drain from my spine, I got another leak in my spine!  I had horrific headaches.  Fortunately, there was a fairly simply blood patch procedure they could do, taking blood from an artery in my arm and injecting it into my spinal canal.  Within about 6 hours, the headaches were gone.  Really a miracle procedure.

Then a day or two later I noticed facial paralysis. They were about to discharge me but instead sent me for an MRI.  Nothing "interventional" was needed...turned out to  be Bell's Palsy.  I think most people have heard of it or known someone who has had it.  The right side of my face is kind of paralyzed and it's mainly effecting my right eye (can't blink or close my eye easily so getting dried out and very sensitive to light.)  My face hurts more from the palsy than the surgery I think. But it should resolve itself, hopefully soon!!

Thanks to Jeff, Rachel, Chandler, Ann Marie, Annette and Jerry for coming the night before the surgery. Having friends and family to take my mind off things was a blessing.  Then Ann and Rusty got there that first night and thank God for them.  My memory is sketchy of the first few days (a good thing) but I know they were by my side the whole time.  Then bless their hearts, Ann's son Josh and his fiance Sara came for a couple of days to babysit me in the hospital.  Sara is in nursing school so I was in good hands.

The nurses were WONDERFUL...not a single complaint.  Well, except the rather rapid discharge on Day 7...but they had 6 neuro patients coming out of surgery and needed my bed so I was rather quickly discharged.  But it was all good.  We were ready to go home, just scared.

I have been progressing well.  My cousins Lynn and Erica (adopted cousin) came from Great Falls the first weekend I was home and REALLY took care of me.  They helped me get my first shower in over a week and you can only imagine how good that felt.  Erica made my favorite meal (country steak and gravy) and then BBQ chicken the next night.  She and Lynn washed our clothes, changed the sheets, etc.  Just amazing how loved they made me feel.

Hoping to get my staples out Thursday or Friday but the weather is a problem.  The dr's ofc has been closed all week.  Anyone have a staple removal kit???

I am thankful for the "crazy ENT" Pablo Stolovitzky who first diagnosed me...even though we thought a brain fluid leak was crazy, he was right.  He sent me to Dr. Danko Cerenko who sent me to Dr. James Robinson, who did the surgery.  All excellent and caring physicians and I am lucky to have found them.  Piedmont Hospital was incredible and the staff some of the best I have ever encountered.

I am on meds for pain, muscle relaxants for the face (facial muscle retracted during surgery), and for seizure prevention.  I can't drive for a month at least.  No exercise or anything remotely strenuous for a month.  So I am following doctors orders and resting.  Not getting online much, maybe once a day.  The glare of the computer hurts my eye.

Thanks to all who have brought food, flowers, cookies, and given us support.  Mike and I are so grateful and can never thank you enough.