About Me

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Atlanta, GA, 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!!!

Monday, January 14, 2013

Questions for your Surgeon

NEUROSURGEON QUESTIONS for a head leaker

Answers are in italics from the surgeon I chose.

1. How many of this type of surgery have you done? Lots of craniotomies done every week. Strictly a brain surgeon now. Mostly tumors but two CSF pts right now.
2. Is there more than one way to treat this? (Endoscopic intranasal?) Not for a leak in this position.
3. Will I be asleep or awake for the surgery? General anesth…asleep.
4. How long will the surgery take? 2-4 hours (Mine took 2 1/2 hours.)
5. What is the most common complication? Failure to repair leak, seizures after surgery
6. What is the total anticipated Length Of Stay in hospital? Up to a week.
7. Will I go to ICU after the surgery? How long? YES, At least one night.
8. What is my total recovery time? When can I return to work? 2 weeks minimum (it took me about 3 to go back to work.)
9. What, if any are the long term issues? Consider this a speed bump. You should get back to doing everything you do now. (I can.)
10. Will I need to take an anticonvulsant? YES Keppra For how long? 4-6 weeks.
11. Will I be able to drive? No driving for one month at least.
12. Will you have to shave much of my hair off? Horseshoe incision over right ear, will leave as much hair on top as possible to cover it
13. What is the chance of any recurrence of the problem? Am I at any higher risk for future problems? Minimal. After 2-4 weeks, home free.
14. Will my ear symptoms improve? They should once the fluid drains out or dries up.
15. Will I have permanent hearing loss? Should not. Most seems to be from the fluid. Less risk of hearing loss with neurosurgeon approach vs. Otologist.
16. Will you operate with an Otologist/ENT? NO If not, how do you fix the ear problems? Should resolve them.
17. Should I stop any of my meds or vitamins/supplements? Stop vits and supplements only for one week prior.
18. When can I return to sports and exercise? Low impact after 4 weeks
19. Will you put a tube in the ear after the surgery? Probably yes, Will have Otologist put tube in 8-10 days before surgery to drain and test for CSF. Leave same tube in after surgery. Tube will improve hearing faster.
20. Will you put a lumbar drain in? YES Intracranial drain/pressure monitor? NO Catheter? YES
21. What is the Benign appearing cyst or polyp in the left alveolar recess? Infection? Ask the Otologist
22. What about the fracture of the floor of the middle crania fossa? Will repair in surgery.
23. Physical Therapy anticipated? Maybe, will set up while in hospital. Chewing may be painful/difficult after the surgery. (I DID NOT REQUIRE PT.)

NOTES: I typed up the questions in advance and had my husband go with me to take notes to that I could listen. These are some things he wrote down:

  • Sleeplessness, alcohol and dehydration will give me a higher risk of seizures. A little alcohol ok but no drunkenness. :)
  • Tylenol ok for any pain pre-surgery.
  • Piedmont has all of the surgical navigational instruments. CT before procedure to mark where they will cut. ASK YOUR SURGEON ABOUT THIS...critical for brain surgery!!!
  • He will use split thickness skull graft or titanium mesh to repair skull fracture.
  • Will have to lay FLAT in bed for 2-3 days after surgery. Cannot get up.
  • Can go home the day after they take out the lumbar drain

Tuesday, May 8, 2012

Clooney speaks at the Wortham Center in Houston, Texas. I am in line to ask him a question.

Me, asking George about his CSF leak.

My Conversation with Fellow Leaker, George Clooney

My Conversation with Fellow Leaker, George Clooney

It was one of the most thrilling things I've ever done.

When Ann and I got to the Wortham Center in Houston, we took our seats only to find we were on the 8th ROW...so close and so happy!  I had brought all my returned letters, cards, literature, etc with me in hopes of finding a way to get it to George.  I could have tossed it up on the stage from my seat!!

We had programs, but I didn't look at mine...I was too busy taking pictures and trying to get a good angle for when George came on stage.  But then Ann showed me something that made my heart race...AUDIENCE QUESTIONS.  Oh my gosh...I would have a chance to ask a question???  I could not think of anything else...except...you have one question...what's it going to be???

George was "interviewed" by a lady who may have never seen and certainly has never done an interview before.  She was not the best but I am sure she gave quite a lot of money to the Foundation for that honor!  Good for her.  George, on the other hand, was beyond charming.  Ann, my best friend, said she wasn't a huge fan before the talk, but now she's in LOVE with George.  He has an every man way about him that is disarming, candid, intelligent, funny and honest.  You cannot help but love him.

Lo and behold, 5 minutes before the end of the interview, a sound guy put a microphone in the aisle one row behind me!  I was excited to know I might have a chance at being first in line to ask a question.  As soon as he stopped talking, I jumped from my chair and into the aisle...but much to my dismay, there were already lots of others coming down the aisle to the microphone.  I managed to get third in line and thought, surely, he'll take at least 3 questions?!?

But something seemed off.  The people in the line were pointing at me and whispering about me.  Then a young man finally came up to me and said, ma'am, what are you doing?  I very confidently said "I am asking George a question."  I kind of implied...end of discussion, if you get my drift.  But it wasn't.  Another man asked the 17 year old boy in front of me, "is that your mother?"  He said no he didn't know me.  The entire time, a Sudanese refugee was asking George a question right in front of us.  It was rather surreal.   Finally, The Blonde Woman came up to me and told me I could not ask a question and I needed to take my seat.  I told her my seat was in front of the microphone and I did not want to go in front of the Sudanese woman while she was speaking so I stood my ground.  She was flustered.  The other young man came back and explained that they were only allowing the three pre-selected, pre-screened people to ask questions and I HAD TO SIT DOWN.  I was devastated. I explained that I had flown from Atlanta to have the chance to speak to George and I wanted to ask him about his brain and spine injury. He didn't budge so I gave him the envelope I had brought with all of my George literature and BEGGED him to PROMISE me he would PERSONALLY hand it to George.  He did.  So I handed it over and was forced to take a seat.  I did not go back to my seat but sat on the empty row where the Questioners had been seated.  I had a direct line of vision to George.  I also had on my bright red dress, which you could not miss.  I stood out like a sore thumb.

I kid you not, the third person pre-selected to ask a question actually asked him if he could choose 3 words to describe himself, what would they be.  REALLY????  I could have told her...SEXIEST MAN ALIVE...now move over and let me ask him a serious question!!!  After she moved from the microphone, George looked toward me and said "come on up."  So I jumped up and was at the microphone in 2 seconds.  The next thing I know, my face was splattered across the JUMBOTRON and I looked up and saw myself and sort of had a freak out moment. 

Unbeknownst to me, there was another lady right behind me who had raised her hand to ask him a question.  I still don't know if he was talking to me or her but I do know, I saw my chance and I took it.  They did not allow anyone else to ask a question and made that poor lady sit down.  As we were leaving the theatre, I walked past her and heard her telling her friends "I was robbed!  George told me to come on up but then that lady in the red dress jumped in front of me!"  It's true, I did.  I was on a mission.

So what did I ask him?  I don't really remember word for word, but it went sort of like this...

Hi, I am Tracy from Atlanta. As I have been sitting here listening to you talk, I have discovered that you and I have a lot in common.  First, you're about to celebrate your 51st birthday and I just turned 51.  Second, I also had Bell's Palsy.  And third, I, like you, am a CSF Leaker.  I represent a group of Leakers on Facebook (at this point he laughed out loud as did the crowd...and I said, not THAT kind of leaker...we don't need Depends!)  Once the laughter died down, I continued.  We call ourselves leakers because we all suffer from the same condition you have.  My question to you is, what have you had done, how are you now, and how can you go about your business so cheerfully if you are still in great pain?  Leakers know how debilitating this condition is and we are all very impressed with your fortitude, knowing you are also a leaker.

His first response was to tell me how sorry he is that I suffer from leaking.  He then proceeded to give the audience a lesson in leaking.  He talked about the dura, the spine, how you can tear it, how you can leak, how horrible the pain is, etc.  He said he has gone through a 13 hour surgery (I was not able to ask him exactly what kind of surgery) and has had multiple blood patches and glue patches.  He says he is much better but sometimes still has headaches.  He said he has had to adjust to this new reality of life with chronic pain.  He said it is not as severe as it was but occasionally he has to go in for more patches.  He expressed sympathy for anyone suffering with it.  He ended as he started, telling me he was sorry for my pain and suffering.  I was able to tell him that I am healed...and the audience clapped.
Then, The Blonde Woman told me to "shut up and sit down now."  I am not kidding, those were her exact words and I was happy to oblige.  George was off the stage in about a minute and that was it.  I could not believe that, out of 2500 people in attendance, I was the only one who was able to actually ask him a real, unrehearsed question.  He listened intently and answered thoughtfully.

I chased down the young man who I gave my envelope to after the program and asked him again to PROMISE me he would give it directly to George and he said he would.  I told him I was sorry to cause a scene, that it was not my intention, but I hoped I had brought some awareness to an important issue.  He said George definitely invited you up.  (I don't think this guy saw the woman raise her hand behind me either!)  I felt empathy from this young man so I can only hope my literature made it into George's hands. 

Now, if only George would call...or text...or email....the wait begins!

Monday, April 16, 2012

Imaging of Skull Base Cerebrospinal Fluid Leaks in Adults

Cerebrospinal fluid (CSF) leak occurs when there is an osseous and dural defect at the skull base, with direct communication of the subarachnoid space to the extracranial space, usually a paranasal sinus. Recognition of the leak site and source and appropriate treatment are necessary to avoid rhinorrhea or otorrhea, low-pressure headaches,  and meningitis, known complications of CSF leak.  The imaging evaluation has evolved over the past several decades. Description of current techniques available to direct treatment options, including multidetector thin-section computed tomography, and imaging recommendations are presented.

http://radiology.rsna.org/content/248/3/725.full.pdf

Kristen M. Lloyd,MD
John M. DelGaudio,MD
Patricia A. Hudgins,MD