About Me

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North Augusta, SC, United States
I am an otherwise very healthy and active woman who was shocked with a sudden medical condition in 2010 and decided to write about my experiences in hopes that it will help at least one person possibly be diagnosed and treated without having to go through the medical maze I went through! If you are an ADULT with chronic ear infections and can't get any answers, ask your ENT to rule out a CSF leak!!!

Tuesday, February 22, 2011

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

Wednesday, February 16, 2011

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. 

Pre-Ops Done

Monday, December 27, 2010 at 2:34pm 

I went to the doctor and hospital for my pre-ops today.

I asked if the surgeon could take pictures for me during the surgery and I think he can!!!  We are going to take him a thumb drive and hopefully he'll save a few for us that I can share later for those not too squeamish!

The CT scan (stealth...like a GPS for surgery) will be done this Thursday morning before surgery, which is scheduled for 7:30 am.  We have to be at the hospital at 5:30 am.

I'll be in the hospital until at least Tuesday and possibly until Friday depending on whether they have to leave the lumbar drain in for 3 or 5 days.

Once I get home, no strenuous activity for a month.  No lifting over 5 pounds and no driving.  But I should be able to be alone so no babysitters required!!!  I'll have to be on a soft diet (no chewing because of the muscle they will have to retract during the surgery.)

My friends, Jeff and Rachel, will be coming to stay with us Wednesday night and going with Mike and I to the hospital.  Ann and Rusty will be here Thursday evening and Ann will spend 3-4 nights with me at the hospital.  She's also a neuro nurse so I will be in very good hands.  I'll be in ICU the first day or two, so no visitors then.  After that, you can call Piedmont Hospital to get my room number to call me.  If no answer, call Mike's cell and he can update you.

Piedmont Hospital is located at 1968 Peachtree Rd NW, ATL, GA  30309.

Tube Update

Wednesday, December 22, 2010

Today was the day I was supposed to take the fluid that was supposed to be draining out of the tube in my ear to the lab for analysis.  But of course, not a drop of fluid has drained out!!!

Dr. Cerenko says that's ok.  My body is trying to heal itself and has probably created "fibrin" to patch the hole in the dura...but it won't last.  A sneeze could open it back up.  And the bone defect is still there.  He went in and rotated the tube 90 degrees just for good measure.

I asked him if this would impact my surgery scheduled for the 30th and he said no.  The tube had more than one purpose and the other is to promote healing and improved hearing.  Hopefully it will get 2/3 right.

I have my pre-op apt with the surgeon and hospital Monday.  Probably not much more news until after the surgery.

Tube in the ear (myringotomy)

Friday, December 17, 2010

I had a tube put in my right ear in the doctors office today.  My friend took me down to Fayetteville, GA for the surgery.  Not so bad really but it was not pain free.  Glad I only had to do one ear.  My friend had a birdseye view.  The surgeon showed her every step of the procedure.  And she was holding my hand the whole time...quite a friend.   She saw him put the numbing drop in (which was the MOST painful thing), gave me the local anesthetic, then cut me and put the tube in, which did hurt but he got it in the 2nd attempt!  He showed her my brain fluid pulsing behind my ear drum.  And then stuck the cotton ball in and I was done.  She enjoyed it WAY more than I did!!

Now I have to collect brain fluid until Wed when I take it in to be analyzed.

The worst part of all of this?  My husband has been in Arizona all week and he's sick. Had to go on antibiotics as soon as he got home.  Checked in to a hotel 5 mins from our house because I can't be around anyone sick.  I miss my husband soooooooo much.  He is sick and can't come home.  How awful is that?

What's a craniotomy?

Tuesday, December 14, 2010

The craniotomy is the most common type of brain surgery performed.

What is it? Craniotomy is the surgical opening of the cranium, the bones of the skull. Crani- refers to the cranium, and -otomy means to cut into.  In my case, it will be done to identify and repair the hole in my dura and repair bony defects in my skull and ear bones.

Once asleep, my head will be placed in a 3-pin skull fixation device, which attaches to the table and holds the head in position during the procedure.  The surgeon will shave the area for the incision, but hopefully not too much!

  1. A horseshoe shaped (about 4 inches) incision is made in the scalp above the right ear.
  2. The skin is pulled back exposing the temporalis muscle underneath.
  3. The temporalis muscle is pulled down exposing the bone over the brain.
  4. Next, small burr holes are drilled in the skull with a power drill. A surgical saw is used to connect the holes and create a "window" in the skull through which surgery will take place. The removed bone piece is kept sterile for replacement at the end of the operation.
  5. At this point some spinal fluid is drained from a catheter placed in my spine called a lumbar drain. This allows the brain to relax.
  6. Gentle retraction of the dura exposes the structures at the base of the brain and will allow the surgeon to locate and repair the tear in the dura.
  7. He will also repair the 11 mm bone defect, using a graft from my own skull if it is thick enough or a titanium mesh if not.  He will be able to look around for other potential leaks as well before he closes me up.
  8. After the dura has been stitched closed, the bone flap is replaced back in its original position and secured to the skull with titanium plates and screws.  They say I won't set the metal detectors off and can still have an MRI!

The whole thing will take 2-4 hours and then I will go to ICU for 1-2 days.  My total hospital stay is supposed to be 5-7 days.  Recovery at home in bed for a couple more weeks and hopefully in 6-8 weeks I will be like new again.

Brain Update 12-13-10

We have finally made a FIRM decision on what to do.  Just canceled cisternogram and appointment with the new neurotologist for this week and will move forward with the craniotomy surgery scheduled for Dec. 30th at Piedmont Hosp here in Atlanta.

I've looked at so many studies online and it seems patients treated with a middle fossa craniotomy have the best chance of permanently stopping the CSF leak and retaining their hearing.

The cisternogram apparently has a low yield and high possibility for false positives so I am not going to put myself thru that when all the doctors warn me that it may be inconclusive.  And, injecting the radioactive material into the spinal canal may introduce a new CSF leak, which I sure don't need!!

Sometimes you have to say, STOP THE MADNESS.  The surgical approach I've chosen is proven and the surgeon I've chosen had confidence from the beginning.

I am trying to schedule the surgery to get the tube placed in my right ear this week.  I have the pre-op meeting with the surgeon this Friday and will go to the hospital for all my pre-admission tests after that.

For those interested, I'll explain the craniotomy in another note later.  I should be in the hospital 5-7 days if all goes well.

 It is a relief to know I have a plan now.

Brain Update 12-9-10

Today I was pleasantly surprised by a physician...Dr. Oyesiku from Emory called me at 10 am to tell me he had already reviewed my scans with the neuroradiologist and the neurotologist and they agree, I need a lumbar puncture to test my cranial pressure and then a cisternogram (type of MRI with contrast medium injected into the spinal fluid) to visualize the leak better.  (Not looking forward to this.)

His ear guy, Dr. Doug Mattox at Emory, does not necessarily agree with the assessments of the other ear guys and wants me to come in (even though I previously refused, I will now.)  He may be able to offer a mastoid approach to the surgery which would be through the ear and bones of the ear rather than the skull. The one concern with that is hearing loss and he says I may not necessarily lose my hearing with that approach.  So that's positive.

Waiting on Emory to call me back to schedule the lumbar procedure and appointment with Dr. Mattox.  Hoping that will be the last of the diagnostic work and THEN I can move forward with one approach or the other!

Very impressed with how quickly Dr. Oyesiku did what he said he was going to do.  Although he didn't call my ear guys...

Brain Update 12-7-10

Mike and I went to Emory Neurosurgery today and saw Dr. Oyesiku.  He's the head of the department.  Kind of frustrating.

He wanted to send me to ANOTHER neurotologist but I refused; I've seen two, one of which was trained at Emory and was a Professor there for years.  I asked him to talk to one of the Neurotologists I've already been to, and he agreed.  He said he would call Dr. Cerenko, my doc, and also the guy at Emory that he knows, tomorrow.

He is also going to go over my CT and MRI with the head neuro-radiologist at Emory.  He may suggest one more type of MRI, called a cisternography:  The radiographic study of the basal cisterns of the brain after the introduction of an opaque contrast medium.  He thinks that will exactly pinpoint the source of the leak so there is no question. Although he clearly pointed to a 11 mm defect in a bone in my ear canal that is the likely culprit.  He's very conservative and wants to be 100% sure before recommending brain surgery. Although he did confirm everything I already know, he would like to pinpoint the leak.

Basically, he said mine is an "interesting case."  I think that's medical lingo for "we know what's wrong but not so sure how to fix it."  At least he is going to talk about my case with some other doctors and maybe they will all be able to agree on the best approach.

Still scheduled for surgery Dec 30th unless Dr. Oyesiku comes up with a better plan.

In the meantime, I have to get a myringotomy to take sample fluid from the middle ear to examine in the lab for the presence of CSF.  This small tube is inserted into a hole they make in the ear drum (mostly done on children.)

Brain Update 12-2-10

Met with the Neurotologist today.  That was a nice chunk of change...$420 out of network...so we had to pay it all!!  Oh, and that included a $200 courtesy discount!!!!!

Anyhoo...

He was worth it.  He has basically confirmed that we should go with the neurosurogeon.  He did recommend one more exam to "localize" the leak... an Indium 111 scan.  I will talk to the neurosurgeon about having this done pre-surgery.  Apparently you inject radioactive material into the spine and if it leaks out of your ear, then you know that's where the leak is.  And it confirms 100% that it is brain fluid.

He said I would have a better chance of saving my hearing if I have the neurosurgeon do the surgery.

I had a hearing test and a nerve test and he walked me thru the actual CT scan and MRI films and showed me where everything was happening.  First time anyone has really done that.

Only one appointment left, next Tuesday at Emory.  For now, we're keeping the Dec 30th surgery date.

Brain update 12-1-10

Saw Dr. James Robinson, neurosurgeon, today.  REALLY liked him.  He was very informative and very confident that he could help me.  The only problem is, he is booked until Dec. 30th.  So I am on his surgery schedule tentatively for that day.  Still have to see the neurotologist (ENT that specializes in the ear) tomorrow and then Emory neurosurgery next week. 

Dr. Robinson is not only an excellent brain surgeon, but has great bedside manners and communication skills. He would do a craniotomy, which he does all the time.  He gave me a lot of details, which I will not bore you with.  But Mike and I got a very good feeling from him and his staff. He is not worried about me waiting until December 30th.  He says it is likely I have had this leak for a long time and the bump on the head just caused the fluid to come out of my nose.  He has another patient with this exact same thing right now. So we will keep doing our homework but we may have found the guy.

Here's what's up with my brain.

Monday, November 29, 2010

Everyone wants to know how I came to have this brain problem...so here it is!

I have a CSF (Cerebral Spinal Fluid) leak.  A CSF leak is an escape of the fluid that surrounds the brain and spinal cord.

The dura is the membrane that surrounds the brain and spinal cord and contains the cerebrospinal fluid (CSF). CSF can leak from any hole or tear in the dura.

Causes of a tear in the dura include:
  • Certain head, brain, or spinal surgeries
  • Head injury
  • Placement of tubes for epidural anesthesia or pain medications
  • Spinal tap (lumbar puncture)
Sometimes there is no cause.  CSF leaks can occur in the ear through weaknesses in the roof of the middle ear although they are very rare. Of course, that's what I have.

I have had chronic ear infections for about 4 years. They think those infections weakened the bones in my ear. Then about a month ago I hit my forehead rather hard.   I immediately got a leak, like someone turned on the water faucet, from my right nostril. Turns out my whole right inner and middle ear cavity had filled with CSF (cerebral spinal fluid...aka brain fluid.) I have lost almost all hearing in that ear now and they do not know for sure if that will come back.

The moral of the story...it is not normal for adults to get chronic ear infections. Nor is it safe...too close to the brain. I have a hole in my dura (membrane that covers the brain and keeps it in place) and the CSF is leaking out into places it should not be. And on the flip side, that hole has opened up an opportunity for bacteria to get into my brain and I am at risk for meningitis until it is repaired.

If you get chronic ear infections as an adult, you should go to an ENT and let them rule out CSF leak. It can come out of your nose or ear, and is a watery consistency...not like normal mucus.

Spontaneous leaks into the middle ear are usually diagnosed by high-resolution CT scans. This may reveal discrete tegmen defects, which I have.  These can be repaired via a middle fossa craniotomy. Surgical repair is used in patients with leaks in the skull, which I have. 

Most patients have conductive or mixed hearing loss, the conductive component caused by CSF in the middle ear.