Facebook Support Group

If you have or think you have a CSF leak and would like to join our PRIVATE Facebook support group, send me a friend request on Facebook ALONG WITH a Private Message and tell me why you'd like to join the group and I will temporarily add you as a friend so that I can add you to the group!!  My Facebook profile name is Tracy Moss Stolarski.  

It is absolutely THE BEST group on Facebook.  Lots of resources, research, knowledge and experience among the 1200+ members!

Dr. Robinson is baaaaaccccckkkkk!

I am overjoyed to announce that my neurosurgeon, Dr. Robinson, has resumed his surgical practice in Atlanta and is taking new patients!

You can find him here:  Brain Expert, Dr. Jim Robinson

You can also contact him at the following:


2001 Peachtree Road
Suite 670
Atlanta, GA 30309
Office: 404.254.3160
Email: info@brainexpert.com

James Robinson, M.D.

James (Jim) Robinson, M.D. is a board certified and nationally recognized neurosurgeon providing the most leading edge neurosurgery. The hallmark of his expertise includes Cranial Microsurgery, Gamma Knife Radiosurgery and Endoscopic Cranial Surgery. Dr. Robinson’s outcomes dramatically exceed the national average. His complexity adjusted case mortality has ranged from 27-29% of predicted on the basis of par data on a national level, with significantly better than average length of stay and readmission rates, reflecting a smooth post-operative course for his patients.

Dr. Robinson earned his medical degree at the Medical College of Pennsylvania in Philadelphia, PA where he graduated Magna Cum Laude. At the renowned Bowman Gray School of Medicine at Wake Forest University he completed a surgical internship, neurosurgical residency, and research fellowship in Epilepsy Surgery. Most recently, Dr. Robinson earned an Executive MBA, finishing first in class, from Goizueta Business School at Emory University.

Dr. Robinson has also participated as a Principle Investigator on several successful clinical trial initiatives.

As Founder and President of Atlanta Brain and Spine Care, Dr. Robinson became a recognized leader in minimal access spinal surgery and cranial microsurgery serving the Atlanta market and southeastern region for a decade before. He also held the position of Medical Director of the Piedmont Gamma Knife Center where he was recognized for high quality of care and served as Chief of Neurosurgery and Chairman of the Neurosciences Department at Piedmont Hospital. 

Dr. Robinson returned to Atlanta to open his clinical practice, Brain Expert, after a sabbatical that afforded him the opportunity to serve the poor in developing countries and to do research and development work to advance his field.

Dr. Robinson is a member of many prestigious organizations including the American Association of Neurological Surgeons (AANS), The Alpha Omega Alpha Medical Honor Society, Georgia Neurological Society (GNS), AANS Section on Tumors, Society for Neuro-Oncology, and is a Fellow of the American Board of Neurological Surgery.

In addition to authoring and publishing multiple textbook chapters and journal articles, Dr. Robinson, has, on numerous occasions, presented his research findings at professional meetings on topics that include tumors, head injuries, and minimally invasive spinal surgery. He has also taught other surgeons advanced surgical techniques at meetings of the American Association of Neurological Surgery, The Congress of Neurological Surgery, and the Joint Spine section of the AANS and CNS.

Dr. Robinson remains actively involved in organizations such as Honduras Outreach, Inc. (HOI), Medication Radiation Centers, LLC, a social entrepreneurship project to Latin America, Hospital Bloom in El Salvador and Hospital Cedimat in the Dominican Republic. He is also a supervising mentor in Biomedical Engineering at the Georgia Institute of Technology, and a Cub Scout Den Leader.

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

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!

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

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

Sarah's Cause-Please help if you can!

Sarah's CSF Leak Fund

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!

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.

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.

http://www.ncbi.nlm.nih.gov/pubmed/18079188

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.

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.

Six Months Post Surgery

All is good!  I still have a little nerve damage which causes dry eye and nostril on my right side.  And some hearing loss.  But the leak has not returned so everything else is good!  Feeling very lucky and blessed.

Dr. James Robinson leaving!

I just receieved a letter from Atlanta Brain and Spine care that Dr. Robinson is leaving as of June 30th.  Sounds like he's taking time off but that is all I really know.  I hope he is ok.  I feel very fortunate that he was able to operate on me because I don't know where I'd be without him.  This will leave a huge hole in the Atlanta brain surgery community.  He was the best.

Great Article for Diagnosing a CSF Leak

http://emedicine.medscape.com/article/338989-overview

Ear Drum Follow Up

I had my follow up apt with Dr. Cerenko today.  He removed the packing, peeled off the paper patch and pronounced it "all good news."  My eardrum has healed and the water precautions are lifted!!  I will go back in a month for another hearing test.

Ear Tube Removal and Repair of Eardrum

Surgery March 31st to remove the ear tube and do a paper patch on my ear drum.  Dr. Danko Cerenko did the surgery at Southern Regional in Atlanta.  Very short procedure; only under 30 minutes.  Went home that day.  No pain.  Just a lot of packing in the ear which has to stay in for two weeks.  Hopefully my eardrum will heal properly and that will be that.

CSF Leaks Article

http://www.utmb.edu/otoref/grnds/CSF-leaks-050112/CSF-leaks-050112.htm

Excerpts from another very good article.

"Cerebrospinal fluid (CSF) leaks are composed of CSF rhinorrhea or otorrhea, which implies an abnormal communication between the subarachnoid space and the nasal cavity or tympanomastoid space.  CSF leaks may present in a number of ways, including middle ear effusion, hearing loss, or unilateral rhinorrhea secondary to Eustachian tube drainage.  Therefore, the otolaryngologist must keep a high clinical suspicion.  The diagnosis must be either confirmed or excluded as the risk of meningitis is high, with reported rates varying between 2-88%.  The clinician must be aware of the diagnostic and treatment options available in order to best manage such patients."

"With transverse fractures, the tympanic membrane is typically intact and the fluid may build within the middle ear and mastoid and eventually drain thought the eustachian tube producing CSF rhinorrhea."

"Surgical repair is recommended for those cases that do not resolve in order to prevent the morbidity and mortality associated with meningitis.  Tegmen defects may be multiple rather than single, and identifying only one defect may not be sufficient for achieving definitive repair.  Because surgical repair by way of a mastoidectomy approach alone can be inadequate if there are multiple tegmen defects, a middle fossa approach alone or in combination with a transmastoid approach should be considered in most cases."

"The success rate is significantly higher for those patients who undergo primary closure with a multi-layer technique (using bone wax plus 2 additional materials, such as Oxycel cotton, muscle, fascia, or abdominal fat) versus those patients who underwent primary closure with a single-layer technique.  The surgeon should also be prepared to deal with an encephalocele encountered incidentally during surgery.  This herniated, pedunculated tissue is functionless and can be amputated."

"The successful management of a patient with a history suggestive of a CSF leak involves ensuring that it is a true leak by testing the fluid for beta-2-transferrin.  Imaging studies should be performed in order to anatomically localize the site.  Surgery, if necessary, should minimize morbidity while maximizing the chances of a successful outcome.  This may be achieved by meticulous preoperative assessment and meticulous intraoperative techniques.  Success rates of over 90% can be expected with proper patient and surgical selection."

 

Neurotologist Apt Update 3-2-11

I had an audiogram (hearing test) and saw my neurotologist today.  Hearing is about the same as last time.  He won't be able to know my real hearing level until after he removes the tube. Will schedule surgery for that in April.  I will have to go under general anesthesia but it should be quick.  He will remove the tube and do a patch immediately to promote healing of the eardrum. 

In the meantime, I have to continue to avoid getting water in my ear.  I told him that is going to be a BIG PROBLEM when I go to St. Martin in 3 weeks!!!  He agreed that I could use a silicone ear plug and he sold me an Ear Band-It which I will have to use to get in the water.  It will just look like I have on ear warmers when I am swimming!!  I am sure it will be cute (NOT!)  He also prescribed me antibiotic drops to put in my ear should any water accidentally get in.

As for my residual palsy, he said it was definitely related to the surgery. My right eye still won't tear and he told me to continue to use drops hourly and a gel at night.  There is no way to really tell if that will come back, but if it does it could be months.

Lastly, he looked into my nose and said the swollen turbinates and bloody discharge are probably due to some minor irritation or injury from the surgery (tubes in nose when asleep?)  He did not think it was anything serious.  He recommended sinus rinses, antibiotic ointment, and AYR gel (saline gel) in my nostrils.

So, I'll schedule the surgery when I come back from my birthday trip and after that, we'll see how my hearing shakes out and if there is anything that can be done to improve it.  But if that's all I have to deal with after all this, I consider myself one lucky girl.