About Me
- Tracy
- 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, May 8, 2012
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!
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
Tuesday, March 6, 2012
Health: How spinal condition lead to crippling headaches
Published on Friday 2 March 2012 12:04
Wonderful article about a fellow leaker, Deborah Ogg. She told her story to gain publicity for Sarah Ambrose's fundraiser!
http://www.scotsman.com/news/health/health-how-spinal-condition-lead-to-crippling-headaches-1-2150059
Wonderful article about a fellow leaker, Deborah Ogg. She told her story to gain publicity for Sarah Ambrose's fundraiser!
http://www.scotsman.com/news/health/health-how-spinal-condition-lead-to-crippling-headaches-1-2150059
Monday, February 13, 2012
Sarah's Cause-Please help if you can!
Sarah's CSF Leak Fund
Sarah Ambrose has been suffering from this rare and debilitating condition for almost five years. She is leaking Cerebral Spinal Fluid (CSF), a dangerous and potentially deadly condition. She lives in the UK but has been told there are no facilities to treat her and that she must learn to live with the pain. Unfortunately, that is not an option for Sarah as the pain is too great. She has attempted suicide twice. We are trying to raise money to get her to Duke Medical Center in NC where she can see and be treated by Dr. Linda Gray, a world renowned neuroradiologist specializing in CSF leaks of the spine. This is a last resort for Sarah. If she does not get this treatment, and soon, she may not have the will to continue. Her life, as she knew it, has been taken away, and she does not want to live in this constant state of pain and misery.
We are starting this fund to firstly, help get Sarah to Duke for treatment. But the long term goal is to create a foundation or fund to help other Cerebral Spinal Fluid (CSF) leakers and sufferers get treatment. There are many people suffering with this condition and we hope to shed light on it and possibly provide access to treatment for ALL sufferers in the future! The urgent goal is to get Sarah here as she has come to a major dead end in the UK and is hanging on by a thread at this point. We hope you will help us help Sarah!
Wednesday, January 4, 2012
Imaging of skull base cerebrospinal fluid leaks in adults
http://www.ncbi.nlm.nih.gov/pubmed/18710972
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.
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.
CSF leaks: correlation of high-resolution CT and multiplanar reformations with intraoperative endoscopic findings.
http://www.ncbi.nlm.nih.gov/pubmed/18079188
BACKGROUND AND PURPOSE:
Skull base defects can result in CSF leaks, with meningitis as a potential complication. Surgeons are now routinely repairing these leaks via a nasal endoscopic approach. Accurate preoperative imaging is essential for surgical planning. A variety of imaging regimens have been employed, including axial and direct coronal CT, CT cisternography with iodinated contrast, radionuclide cisternography, and MR imaging. Now that multidetector helical CT is available, the purpose of this study was to determine how well coronal and sagittal multiplanar reformatted (MPR) images generated from a high-resolution axial dataset correlate with intraoperative findings in a group of patients with clinically proved CSF leaks.Tuesday, January 3, 2012
One Year and Counting!
It has been one year since my craniotomy to repair four skull leaks.
I am still not leaking, which based on what I know now, is practically a miracle. I have found a support group of leakers on Facebook who have taught me a lot...mostly that I am very lucky and blessed.
I have not spoken this to anyone, nor have I written it, but even though I am healed, I am still scared. Scared that I will start leaking again and my world will be turned upside down. My ear hurts almost constantly (the side of the craniotomy and also the ear tube surgery.) I am always worried that I might have an ear infection...which could mean the leaking has started again. (My doctor confirms I don't!)
When I get a headache, I wonder if it will be THE BIG ONE...and a sign of another leak. When I bend over to dry my hair, and stand back up, I wonder...will CSF pour out of my nose this time?? When I get a massage, and they work on my scalp, I am afraid they will disrupt the surgery and cause me to leak again.
All probably irrational thoughts...but I have seen what this disease does to people and I don't ever want to go through it again. I was lucky the first time because I was diagnosed and treated so quickly. My FB friends are not so lucky and I wonder how/why my experience was so different.
Mostly, I wish there was something I could do for the others who suffer from CSF leaks. Even though I don't know any of them personally, I feel connected to all of them. I hope my story gives them hope.
I know I can't control whatever happens to me now...and if I leak again, I will just have to deal with it. I feel so guilty for my cure when so many others are suffering beyond belief. Guilty but thankful. And scared...always scared. Maybe one day I will be able to put this behind me and get past the fear. That is my hope for myself.
My hope for others suffering with a leak is that they will find a knowledgeable and compassionate doctor who will care enough about them to help them find a cure. And for those still searching, I wish them the ability to HANG ON as long as it takes.
I am still not leaking, which based on what I know now, is practically a miracle. I have found a support group of leakers on Facebook who have taught me a lot...mostly that I am very lucky and blessed.
I have not spoken this to anyone, nor have I written it, but even though I am healed, I am still scared. Scared that I will start leaking again and my world will be turned upside down. My ear hurts almost constantly (the side of the craniotomy and also the ear tube surgery.) I am always worried that I might have an ear infection...which could mean the leaking has started again. (My doctor confirms I don't!)
When I get a headache, I wonder if it will be THE BIG ONE...and a sign of another leak. When I bend over to dry my hair, and stand back up, I wonder...will CSF pour out of my nose this time?? When I get a massage, and they work on my scalp, I am afraid they will disrupt the surgery and cause me to leak again.
All probably irrational thoughts...but I have seen what this disease does to people and I don't ever want to go through it again. I was lucky the first time because I was diagnosed and treated so quickly. My FB friends are not so lucky and I wonder how/why my experience was so different.
Mostly, I wish there was something I could do for the others who suffer from CSF leaks. Even though I don't know any of them personally, I feel connected to all of them. I hope my story gives them hope.
I know I can't control whatever happens to me now...and if I leak again, I will just have to deal with it. I feel so guilty for my cure when so many others are suffering beyond belief. Guilty but thankful. And scared...always scared. Maybe one day I will be able to put this behind me and get past the fear. That is my hope for myself.
My hope for others suffering with a leak is that they will find a knowledgeable and compassionate doctor who will care enough about them to help them find a cure. And for those still searching, I wish them the ability to HANG ON as long as it takes.
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