Post surgery going into CK

[jintaneugene]

Hi everyone.

I was diagnosed with a 4cm big AN on my left 8th nerve 2 months ago and already went through the surgery to remove 80% to 90% if the tumor by breaking the middle and sucking the tumor, leaving a thin layer capsule because the tumor was so big it was compressing my facial nerve, brain stem and others. 1 week after surgery I had terrible headaches everyday. When back to the hospital and did a MRI scan. Doc told me I have hydrocephalus which also means excess brain fluid. MRI did show a slight decrease in size of the AN capsule but unfortunately not significant enough for the brain fluid to flow smoothly. Doctor did not want to put a Shunt in me so Doctor prescribed me a Diuretic(Acetazolamide) which really helped a lot. Another thing is that after surgery I've lost 100% hearing on my left and also left facial paralysis which Doctor say will recover. Will be back to do a MRI in 2 weeks time and might go for CK. Is CK going to do any help on the brain fluid and my facial paralysis? I'm worried that it will be even worst as I'm already struggling in life with post surgery symptoms. Can anyone pls advise? Thank you in advance.

EuGene.

[LakeErie]

Is the brain edema from mass effect of the tumor on your ventricle preventing normal drainage of cerebrospinal fluid?

Facial paralysis is from damage to the facial nerve itself, CK dos not treat nerve damage. CK will rearrange the DNA in the schwann cells forming your remaining tumor and hopefully prevent any further growth.

The brain swelling itself may be compressing your facial nerve and causing the paralysis, that is what happened in my case following Gamma Knife last Oct. Again in my case, steroids reduced the brain swelling to the degree my facial weakness improved.

You may want to ask your doctor to explain the exact mechanics of your post - surgical difficulty and exactly how the proposed follow up care will improve your situation. Good luck

[ANSydney]

EuGene,

It sounds like following surgery, you have communicating hydrocephalus rather than obstructive hydrocephalus. Did you have headache before surgery?

Communicating hydrocephalus can occur when something "clogs" the re-uptake of cerebrospinal fluid. This can be from protein shedding from the tumor. Obstructive hydrocephalus occurs when the various pathways for cerebrospinal fluid are blocked. In our case, the fourth ventricle is occluded by the tumor pushing on the brainstem.

I don't think you doctor will recommend (or allow) CK while there is hydrocephalus.

How can 80 to 90% of a tumor be removed and show only a slight decrease in size?

What chance before surgery were you given of retaining hearing?

[jintaneugene]

Hi LakeRrie and ANSydbey,

 Yes the tumor was pushing the brain stem on the left. I did have headache before the surgery and to be honest that was what made me decide to go for MRI scan in the first place and the chances of retaining my hearing was dead 0%. After surgery there was no headache at all until 1week post surgery the headache began. It was so terrible I would wake up middle of the night. So got another MRI scan and was told that I have excess fluid in my brain causing pressure. Doctor said that he did not want to put a shunt so he suggested to try the diuretic first. It helped a lot so I guess the fluid drained off? In the next visit there will be a MRI scan to see if the diuretic really works then only get into CK. Is inserting a Shunt the only way if the diuretic is not working? I'm worried. Please help. 

EuGene

[ANSydney]

Are your headaches worse when you lie down?

Something to consider is an external ventricular drain, which is less invasive and a temporary solution. Given that your doctor looks like thinking that things are temporary, this may be the way to go.

Be guided by your doctor.

[jintaneugene]

Hi,AnSydney,

After taking the diuretic the headache seems to be very mild. Laying down is where I don't feel pain. I really hope I don't have to undergo another surgery. Anyway thx for helping.

EuGene

[ANSydney]

Odd, I thought hydrocephalus headaches become worse when lying down. I'll have to increase my knowledge.

The main thing is things are moving in the right direction.  Whether things improved because of the diuretic or time is a moot point.

Keep us informed of progress.

[ANSydney]

EuGene, is there an CSF leak?

[Donna Marie]

Hello everyone.. I'm new on here.. I'm soooooo grateful I found this site...im trying to get hope through your testimonies right now.. In June I had radiation for my tumor. I've high dose...ladt month I went on a road trip for months after my radiation.. I live in California,  and travelled in our travel trailer.. From California to Arizona,  to New Mexico,  then lastly Colorado.. We ended up getting altitude sickness.. Nausea,  very dizzy,  and weird feelings in my head. Didn't get treated for it cause my husband got it too.  So we drank lots of water.. Not even a week after getting back home I had facial paralysis.. Devastating.. My eye collapsed,  face sucked in like someone punched me and left there fist print on my face,  and crooked mouth... Thank GOD it only lasted a few minutes.. Then went back to normal.. After going to ER twice,  talking to my radiologist,, I'm on steroids trying to reduce swelling... It's been a month since the face paralysis and has happened 7 times... I feel weird in my head with slit of pressure,  my facial nerves moving like it can happen again.. Been isolated in my house cause I'm afraid,  I don't feel good,  and balance has been horrible... I can deal with my balance,  and hearing.. But face,  and funky feelings.. I'm losing hope,  and control... I try not to cry,  because it has an impact on how I feel.. But I was wanna cry so hard from the soul... I'm only a month in this right now,  and can't imagine how in gonna pull through.  Feel like I'm dying inside.. If anyone has any glimmer of HOPE to share with me.. Please do so...i also have cancer Leukemia to be exact,, and I have horrible panic... So I have alot going on... My panic is adding on to this horribleness... I'm sorry u all are going through this... I try to remember that GOD IS GREAT and he will see me through.. I know he will.. But I just feel hopeless right now... GOD BLESS u all..and hope u all come out of this fine.. Does anyone have an idea how long these symptoms stay.. Seems like since we're in the less than 1percent..nobody will know.. But I hope.. It ends quickly... Is it because the tumor is swelled.. My tumor is swelled right now based on the new MRI image... Thank u all.. So much for whatever comments I get back.. Thk u