Has Any Heard of This Condition???

Oh my goodness! How frightening! I'm so sorry to hear of your daughter's condition.

I would get a second opinion. In fact I would seek one immediately.. fax records, make phone calls.. I would not wait idle over the weekend. Not because you discount the first doctor but just to be responsible and thorough. Your current doctor should not take offense to you wanting one.

This website (http://groups.msn.com/pseudotumorcerebri/yourwebpage11.msnw) lists some TX doctors that apparently specialize in the condition (I did not see any in that list in Austin).Although I know nothing about any of them, I myself would probably lean towards the pediatric specialists in Houston (Dr. Ian Butler and Dr. Koening) because they are pediatric and Houston is closer... or you can contact the email for the website and see if he has any insight for who you should get a 2nd opinion from (?):

Texas
*Dr. John G. McHenry, Associate Professor Department of Opthalmology, Neuro-Opthalmology, Oculoplastic and Orbital Surgery. Aston Ambulatory Care Center, 5303 Harry Hines Blvd, Dallas, TX 75390-9057. ###-###-####
*Dr. Anthony Riela, Neurologist, Plano Texas and Medical City Hospital, Dallas, Texas. ###-###-####
*Dr. Babu Welch, Neurosurgeon/Neuroradiologist, UT Southwestern Medical Center at Dallas, 5323 Harry Hines Blvd, Dallas, Texas 75390. ###-###-####. Affiliated Hospitals: Children's Medical Center of Dallas, Parkland Health and Hospital System, University Hospitals-Zale Lipshy Building.
*Dr. David Sacco, Neuro-Surgery, (This is the group that worked on sperating the Egyptian twins!). ###-###-####
*Dr. Kurt Bangerter, Neuro-Surgery, Dension, TX. ###-###-####
*Dr. Ian Butler and Dr. Koening, Neurology (Pediatric), University of Texas Pediatric Neurology - Univ of Texas Professional Building, 6410 Fannin Suite 1010, Houston, TX 77030, ###-###-####
*Dr. Judianne Kellaway, Neuro-Ophthalmologist, Hermann Eye Center/ Hermann Hospital, 6411 Fannin, 7th floor, Houston, TX 77030, ###-###-####
*Dr. Rudolph Churner, Opthamology, McKinney, TX. ###-###-####
*Dr. Paul Flavill, Neurology, McKinney, TX. ###-###-####
*Dr. Philip Blum, Houston Neurological Institute, 4141 Vista Rd., Pasadena, TX 77504, ###-###-####
*Dr. Marc Spurlock, Family/GP, Richardson, TX. ###-###-####
*Dr. John Carter, Neurology/Opthamology, UT Health Science
Center, University Eye Consultants, San Antonio, TX. 1-800-778-3627
*Dr. Richard Evans, Opthamology, San Antonio, Texas
*Dr. Lee M. Buono, Neurosurgical Associates of Texarkana, P.O Box 2750-1002 Texas BLVD, Suite 406, Texarkana, Texas 75504-2750. Phone ###-###-####

My son was 9 years old when he was diagnosed with the same thing, first let me tell you that he will be 18 in January and is doing great! We were told this condition usually happened to young women who are overweight! I do not know Dr. Kane personally but his partner Dr. Jeffrey Kerr was Clayton's doctor. His eye doctor is Melinda Rainey at Children's Eye Center and she is very familiar with pseudo tumor cerebri. Fortunately he only needed Tylenol for his headaches but he was on diuretics for years and we always kept Phenergan on hand as he would become nauseated when the headaches hit and would have blurred vision. He had two spinal taps, both times his fluid level was close to 40 (over twice what it should be) and they would "drain" him down to about a ten. We took him to a doctor in Houston at the Children's Hospital for a second opinion. Dr. Kerr encouraged us to do this, we just wanted to make sure that he was receiving the appropriate treatment and felt much better when we found out that he was. Clayton had not had any headaches in quite awhile so he was taken off the diuretics when he became a Freshman in high school and has not had a problem since, that may just be luck or our prayers were finally answered. We have not had his eyes checked in a long time but his optic nerves were not "normal" the last time. I do know what you mean about the "pit" in your stomach, it is an awful feeling because your hands are tied. I am so sorry for what you are having to go through but please hang in there. Get second opinions and just stay on top of it, you will feel like you are living on eggshells but hopefully she will eventually grow out of it or the medication will keep her stable. Please let me know if you have any questions, I would be glad to try and offer you more information.

Hi, I can't tell you a lot of info, but I can tell you that I am a 32 year old adult who has had pseudo tumor cerebri since I was about 19 or 20. Back when I was in college, I had huge headaches and then like you said, I had always had perfect vision,but for a short period of time, I wore glasses for about a year until I got it under control with a medicine that I have now been taking for almost 12 years. I don't have any vision problems anymore, don't wear glasses anymore and my headaches are under control. I do think the weather changes affect my headaches now, like I know when it's going to rain usually, b/c I can feel it in my head. Let me know if you have any more questions. I know I am a lot older than your daughter, so it's more scary to go through that with your young daughter.

K.,
I will have you and your baby in our prayers, God WILL see you through this.

Ask, no TELL your Dr to do a CRP test on her, this is a simple blood test. CRP stands for C-Reactive Protein test,
this test will show How Much Silent Inflammation is in her blood stream. It will also show where it is coming from.
dr do not like to give us these test as there in NO drug for it, also dr do not like to get challenged.
we need to take control of our body.
the dr will probably tell you WHY do you want this test and WHAT are you going to do with the results,
answer;
I will find a Natural Alternative. like aloevera, or something natural,
Dr's don't like to hear that, but sometimes natural way is better since we ALL know the Serious SIDE EFFECTS of drugs,

ask the Dr, What can XANTHONES do for my child.
what are xanthones?
they are powerful anitoxidants, anti Inflammatory, anti VIrus, and the list goes on,
find the scence to it, on www.pubmed.gov, the National Library of Medicines.

I have not heard of this condition, I know my Mom was going blind and these xanthones found in fruits, have helped her tremendously.

I can send you more info or dr's websites so you can be prepared to answer questions you need answered.
tecuento123 at yahoo. com

God bless,
Oly

WOW! My heart and prayers go out to you! I don't have any idea about this problem but since it is so serious I would get a second opinion NOW! Maybe even a third. Doctors sometimes are blind to all the other possibilities. They get locked in on one diagnosis and that's where they stay until something drastic changes and then they still try to figure out why their diagnosis caused that change versus looking to see if it was a different problem all together. They are human but they forget this sometimes.

Talk to someone else immediately! They may come to the same conclusions but have a better idea as to what is going on or how to treat it. I would also consider seeing a neurologist if the surgeon you saw isn't one. They will have more to do with the brain and might have a different view of things.

Again, my prayers are with your family and daughter.
Keep us posted.
Jen
http://www.mommysjoy.com

I'd love to pray for her over the phone. We've seen a lot of people healed of various things this way.

My heart goes out to you K..

I would get a second opinion. My son's neurologist is Dr. Dilip Karnik and he is awesome. I'm just not sure how long it could take to see him. He's at the Children's Hospital here and his office number is ###-###-####.

Good luck with everything.