7-weeks post op today

[Joef]

How you use Laci-lube ?? .. normaly my wife puts it in while pulling down the lower eyelid while I'm lying down.  I cant do this myself .... I just drop it in like the eye drops !!

Joe
4 cm removed by House
Aug 9,2005

l

[Rhonda]

Hi all,
  I have a few updates.  And questions to answer...

I went to the House Ear Clinic on my own nickel.   My insurance was ridiculous to work with pre-op.  I needed to have the surgery in the summer (August 15th) to minimize my absence from the classroom (and kiddos).  I tried the appeal process pre-surgery, but it was so time-consuming and frustrating I gave up after a month and just paid for it myself.  I got a substantial break by paying cash.  My husband is working on the letter, and we just received the invoice from House--we are starting the post-surgery appeal process.  I'll let you know how that goes...

My handwriting is better (not back to normal) since I posted last, about a week ago.  I am seeing a PT right now, OT released me saying I just needed more strength and practice which I can do on my own.  My physical therapist also had a craniotomy 18 months ago, so she gives me a lot of reassurance.  She said that I need to practice writing so my hand does all the work (not my entire arm) I'll keep practicing...

My eye seems to close a little more, dryness is still a problem.  I tried the GenTeal gel (twice), and it made my eye sting something CRAZY!  I'm currently using Refresh Liquidgel drops (about 2-3 times an hour).  I just bought Lacri-Lube last night.  I'll wait til tomorrow morning to try--I'm scared that's going to sting. 

Someone asked how big my tumor was, etc.  It was 3.5 x 3.0 cm.  (translab)  Dr. Friedman said that it was wrapped AROUND my facial nerve.  He said that everyone's AN anatomy is a little different the way it grows.  I'm so thankful I went to the House Clinic because I'd have multiple surgeries and possible facial nerve severation had I stayed in Phoenix.  Freidman also thought I had a lot of cranial pressure because the tumor was extending to the cerebellum.  I think that's why it took so long to lay on that side.  There was tremendous pressure in there.  When the tumor is removed, the brain naturally wants to fill the space that results.  I can lay on the AN side now, but I don't stay there for long (10 minutes or so).

I think that's all the questions that were posed.  Good luck to all, and thanks for all the input.  Take care.

Rhonda

[dpericoni]

Hi Rhonda,

Sent you an email the other day. Don't know if you got it. Great to hear things are going well. 7 days until my surgery at House.

Darlene
A fellow teacher/math (interesting to see all the other teachers listed with AN's)

5mm by 8mm at last check in May.

[okiesandy]

Rhonda,

I sent you a personal email. I really, really would like to talk with you about paying cash as opposed to waiting on your insurance to approve out of network. My insurance company has refused to approve my going to HEI as an in network provider. Today I found out my tumor is cystic and growing rapidly. It is long and complicated and either I do surgery here 6 to 8 hours or HEI 3 1/2 hours. The doctor hear said easier to do if cystic because it collapses in it self. The internet says no. harder on the facial nerve.

[Jeanlea]

Hi,

I'm another 3rd grade teacher with an AN.  I am 6 weeks post-op tomorrow.   Dry eye is the worst part for me too.  I like Ligui-gel during the day, but my eye is still a bit blurry.  Use PM Moisture eyes at night.  My husband puts it in for me and covers my eye with a patch. 

I also found it difficult to lay on my AN side in the beginning.  I'm just beginning to be able to do that.  It feels like laying on a plastic helmet due to the facial paralysis.  Laying on the other side makes it difficult to hear, which is okay most of the time.

Wonder if teachers have a hiigher rate of ANs?   I like the No Teacher Left Behind idea.  :-)

Jean

[Terrie]

Hi Everyone,
I had 4.5 CM tumor removed 5 years ago, ( nope, sorry I am not a teacher  )
I have a dent where the tumor was removed also. Feels really weird.
I still have the dry-eye problem. I did have a gold weight put in my eye lid to help it close. But it doesn't hold the moisture at all. I use the lacri-lube, with the drops I need to put them in almost constantly. I really hate the blurry vision. But that eye doesn't see much even without the lubricant in it. 

The only doctor I have seen since the surgery is a Hearing and Balance doctor ( he assisted the Neurologist with the surgery). Has anyone else not see a Neurologist on a regular basis?

Terrie

[Sam Rush]

You should be back at work by now. I had the same surgery at House and was back at work as a medical doctor in 2 1/2 weeks., with dry eye and partial facial paralysis, which has all cleared up now. 11 months post-op now.

[linda l]

In answer to Sandy's question, not everyone has the dry eye problem.  I am 2 weeks post op and have basically no problems at all except hearing loss on AN side.  Still not sleeping on the incision though, a bit tender yet.
LL

[kimmy]

Hi Terrie. I saw a neurologist one month post-op but I now have to have another MRI scan 12 months after my op and then see the neurologists a month later with the results of the MRI. I do feel somewhat deserted by the medical profession although I work in a group doctors' surgery. I was told that if I thought anything was wrong I should contact the surgeon but I would have appreciated a little aftercare for a few months and help with physiotherapy for the face muscles etc. Have you got a nasty taste in your mouth too? Even chocolate tastes not so nice!!

[debora]

Kimmy,

My taste has changed, I am a food and beverage manager at a golf course, on Sunday I made Chili for a big crowd,  on the way home my husband informed me it was way to hot, (he likes his hot), but I put extra red peppers and jalapenos on mine and it still didn't taste hot enough.  I also noticed that I am salting things way to much and things just don't taste quite right.  I had radiation one year ago Oct 5th.  Has any one else noticed this?
Deb

[Terrie]

Kimmie,
I know what you mean about feeling deserted, I have tried to call the Neurosurgon a few times right after the surgery and got no results from him at all. 

Yes, everything tastes funny!!  I have the same problem as Debora, I have the tendency to put way to much salt on things. but it never really tastes like I put any salt on it.

The last time I saw the doctor, he was looking at the MRI and said that the space has filled up with fluid, he said the brain is like a sponge. it should go back to the originial state after the tumor is removed. He said that mine didn't do that. It stayed smoushed. HMMM?  Wonder exactly what he means. I asked but didn't really get a response. 

Terrie

[Kathleen_Mc]

You should be back at work by now. I had the same surgery at House and was back at work as a medical doctor in 2 1/2 weeks., with dry eye and partial facial paralysis, which has all cleared up now. 11 months post-op now.

Sam Rush: I do not know to whom you are commenting that they should be back to work by now but you should know, as a doctor, that everyone who has a.n. surgery has different outcomes and recovers/heals differently as well as personal previous health issues that may or may not make the difference of when they are ready to return to work never mind differnt level of physical demands etc that may be involved in thier line of work. Now correct me if I am wrong but it appeared to me you were trying to tell someone whom you have never met/assessed that they should be able to work already.......is this appropriate Doctor? Kathleen

[Kathleen_Mc]

To Those Who Wonder What Thier Follow Up Should Be
I too wondered what my follow-up should be after my first resection and my family doctor was unsure as well, it ended up I recieved C.A.T. scan's every few years....that was obviously not adequate as they were all showing no a.n. reoccurance including the one I had two weeks before the first m.r.i. I had post-op (about 7 years post-op) which showed tumor regrowth, I would suggest that you all should be followed up by neurlogists and m.r.i.'s in some frequency....that's just my personal opinion.
As it happens the m.r.i. I had was to rule out another health problem for which I was being investigated, turned out they found the regrowth and never did find the cause of the symptoms I was concerned about. Kathleen

[Bernadette]

Wow its been 5 weeks since my surgery, I'm not back to work yet.After reading that you  went back to work  after 2 1/2 weeks I feel guilty although I have nothing to be guility about, I have not missed work in 12 years and that was because I had my last son.I work in a grocery store,better not work in the liquor dept might be alittle funny.

[matti]

I am 7 years post-op and I see my surgeon every year. My tumor was completely removed (or so I was told), but I still have an MRI every other year. Last MRI was Nov. 2004 and no sign of regrowth.
According to my doctor, he will be following me for quite sometime. I wonder if it is because it was done at a teaching/research hospital. At one time I was told I was a case study and maybe that is why I still see him. I am not complaining, I actually look forward to my MRI's and my yearly visits. Gives me peace of mind.

Terrie - I also have a large dent and I hate the way it feels when I  touch the area. Hard to describe the feeling, other than wierd. I had middle fossa, did you as well?

Matti