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Old 07-24-2009, 10:48 PM
 
1 posts, read 3,934 times
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Hello i am 12 and i just went to the eye doctor today and i was diagnosed with pseudotumors on bothe eyes. this friday ihave a ct scan and i am worried about what they will find .i am deathy afraid of needles and my ieye doctor metioned a spinnal tapp . i looked it up and the needles are masive . is there any one who can tell me hoeit is going to be like you know with out surgar coating it i want the real truth please thanks for your time>
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Old 07-26-2009, 12:10 PM
 
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Default psudo tumor/ idiopathis intracranial hypertension

I had written to the forum in May asking if anyone had information on a doctor with knowledge about this condition. Since that time I contacted the Intracranial Hypertension Research Foundation in Vancouver, B.C. and spoke with Dr Tanne. He and his wife started this foundation after their daughter was diagnosed with this disease. He directed us the Sinai Hospital and Dr. Michael Williams in Baltimore, Md. We are in North Carolina so this was the closest place for us. Dr. Williams is associated with LifeBridge Health Brain and Spinal Institute and Sinai Hospital. I feel like we are on the right track now with someone that knows as much as their is to know about this disease. The Intracranial Hypertension Research Foundation (or IHR foundation) can be reached by e-mail at contact@ihrfoundation.org, phone 360-693-4473,or mail 6517 Buena Vista Dr Vancouver, Washington 98661. They are non-profit and fund research in this very rare disease. They also have a registry. Check out their website www.ihrfoundation.org. Good luck to all
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Old 08-10-2009, 09:50 AM
 
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Default pseudotumor Cerebri/ Chiari Malformation

My son was diagnosed with Pseudotumor at the age of 4 and is now 6. We have gone through 3 MRI's so far and a Spinal Tap. Fortunately he was under general anesthesia for his spinal tap, as I have heard it is extremely painful. I am currently having a HUGE issue with his Pediatric Neuroloist located @ Children's in Columbus, OH. His prescription(Diamox or acetaZOLAMIDE) was changed incorrectly from 125mg/120ml to 125mg/5ml. Of course this is a huge change, which caused his pharmacist to question the dosage. Thank goodness they did, because a change that dramatic could cause severe damage to my son! We are scheduled for another MRI on Friday and also scheduled to see his Optic Nerologist on Tuesday. I was wondering if anyone out there can recommend another Pediatric Neurologist in Ohio. I prefer they be one of the TOP ranked in the state or nationally if possible. I will travel wherever I need to to make sure my child gets the best ranked care out there. FYI: my son is a rare case for this disease, since he is only 6 and is not obese.

God Bless you all!
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Old 02-19-2010, 09:15 AM
 
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Default pseudotumor cerebri

Quote:
Originally Posted by mother&wife View Post
I was diagnosed with pseudotumor cerebri on jan. 31st, 2009. I am still trying to understand it all and its really starting to scare me because the neuroligist wants me to have a shunt put in. The thought of that scares the crap out of me. I would like to talk with someone who has this same problem. Im so confused and dont know what to do.
If you were just diagnosed with it just last year, how is a doctor recommendinga shunt already. I have had it for years my symptoms got worse im currently on diamox 500mg 4x's a day. and yes I have all the side effets, And Im up to the point were I cant take it anymore, but no surgery has been suggested yet....???
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Old 02-19-2010, 09:21 AM
 
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I think you should try New York City, they have amazing facilities for children. And they have one of the top Neuro hospitals. New York Presbetiran, New York Childrens Hospital, and Cornell New York. And Yes the spinal drainage is very very painful. I had done twice..... after years im still in pain with headaches, and blurry vision. I cry alot since Im still young I have three children and I hate this... I wake up with headaches and go to sleep with headaches. you are doing the right thing for your son. I hope this helps. Good luck with your son.
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Old 02-19-2010, 09:25 AM
 
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Well the ct scan will not hurt. but the spinal tap will, it is very painful. and that is the honest truth. I had it done twice. but this is the only way for them to read the pressure. try to be calm dont think about it too much. As long as your parent (s) are there you have nothing to worry about. You are young its good they are helping you now. I hope this helps. Good luck.
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Old 02-19-2010, 09:26 AM
 
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Thank you so much for this information......
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Old 02-06-2011, 04:02 PM
 
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I have been having symptoms of this for almost four months my Dr kept pushing it off as sinus infections and ear infections finally after my second round of antibiotics that were not helping I started to look up the wooshing in my Right ear and got freaked out and a ultrasound showed no signs of artery clogging and then my ENT said to get a MRI of the 8th nerve and with this is when they saw the idiopathic intercranial hypertension and flattening of the optic sheen and right juglar I am waiting to see the neuro DR and my vision is getting worse Im tired of reading about weight loss as I am not severely obese and have not had recent weight gain and things are not getting better I quit taking a new medication that I started after I started having these symptoms because I seen it on a list of meds that increase having this so per myself i quit taking it minocycline. my vision loss is scarring me I currently am a full time student, work full time and have a 5yr old, so I am very active and the vision loss is not helping It takes forever to adjust from book to computer child to computer or getting over the dizzziness while standing I dont know what to do while I am just waiting for the refferal to the neurologist I feel I am just slowly going down hill
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Old 05-14-2011, 07:02 PM
 
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\I also have the idiopthic intracranial pressure a.k.a. pseudotumor cerebri. My symptoms began immediately after I gave birth to my son on May 28, 2010. It has been almost one whole year and test after test after test. I am on morphine 24 hours a day seven days a week. Also Valium tends to help the pain a whole lot. However I have had four spinal taps since October and still no relief. I also had the same horrible side effects when taking Diamox (so i refuse that one). Has anyone found a neurologist specializing in p.t.c.? I am on a waiting list to get into Mayo Clinic in Minneapolis, Minnesota. I know there was an extended clinical study of p.t.c. done there. But, in the mean time does it just have to be one agonizing day after another? Are any of you able to hold a job and/or run a household? Or are you on disability?
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Old 05-14-2011, 07:07 PM
 
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I would go to the nearest high class neighborhood hospital or university hospital in your area.
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