Pseudotumor Cerebri Support Group
Pseudotumor cerebri (PTC) is a neurological disorder that is characterized by increased intracranial pressure, in the absence of a tumor or other diseases affecting the brain or its lining. Diagnosis requires brain scans and lumbar puncture. Characteristic symptoms are headache, transient visual obscurations or transient visual loss in one or both eyes usually lasting...
I have been responding to others posts today. And honestly I joined this group with one thing in mind. and that was trying to conceive and wondering if anyone knew it PTC would hinder that in any way. However after reading posts and responses I have seen that this is not just a group or discussion board, It is more like a family.
I am so used to dealing with this on my own I haven't been around others who understand or ... get it. So let me introduce myself. Ive been doing this for five years with no one who really understood. Five years alone and it is refreshing to see so many who do understand and care and help eachother. :)
My name is LeaAnn. I am 23 years old and I live in Kentucky.
When I was a child, from infancy, I have had terrible vision. I was under the knife before I ever turned one. I had numerous surgeries, more than I can count before I was twelve, and at twelve years was my last surgery. There is no more help for my eyes because the treatment for them can only be done before the eye reaches its adult stage.
This is important becuase my eye doc told me I would be blind by the time I was 20.
Well. I was showering one day and I noticed black spots in my vision that were about the size of a dime. I was petrified to say the least. I thought to my self. This is it. It is happeneing. I immediatly seen an eye doctor. He looked in my eyes, did all them awful things we hate and preformed a visual field exam. He found nothing. He told me that the next time i seen anything like that to get to the nearest eye doctor asap. About a week later I was sitting in the office of Dr. Moats. He was closer to home.
In the first visit he noticed my optical nerves were swollen. He said that the first Dr. did not see it because I naturally had small optical nerves. He was scared that I had hydrocephalus.
From there I seen Dr. Rebecca Woods, Nuerologist. She Did an MRI and LP. The MRI came back fine with the exception of small blood vessels in my brain. My LP results were CSF levels of 20. (200). I never put two and two together. The ringing in my ears. The bubbles as I call it and the fuzzy static in my vision. Chronic headaches. Not to mention my bladder problems. (Not all of my bladder probs but some) all this was bc of PTC.
Diamox had too severe side effects (which from the sounds of it I am not alone in that). My CPF count is not high enough for any shunts. So I am left with LP.
I have no health insurance and am fighting my weight problem. trying to lose weight and stay away from things that I have read increase CSF. It is very scary so I dont think about it too much and i dont tell everyone what this is capable of. I just do what I can untill I can get insurance again.
I am so used to dealing with this on my own I haven't been around others who understand or ... get it. So let me introduce myself. Ive been doing this for five years with no one who really understood. Five years alone and it is refreshing to see so many who do understand and care and help eachother. :)
My name is LeaAnn. I am 23 years old and I live in Kentucky.
When I was a child, from infancy, I have had terrible vision. I was under the knife before I ever turned one. I had numerous surgeries, more than I can count before I was twelve, and at twelve years was my last surgery. There is no more help for my eyes because the treatment for them can only be done before the eye reaches its adult stage.
This is important becuase my eye doc told me I would be blind by the time I was 20.
Well. I was showering one day and I noticed black spots in my vision that were about the size of a dime. I was petrified to say the least. I thought to my self. This is it. It is happeneing. I immediatly seen an eye doctor. He looked in my eyes, did all them awful things we hate and preformed a visual field exam. He found nothing. He told me that the next time i seen anything like that to get to the nearest eye doctor asap. About a week later I was sitting in the office of Dr. Moats. He was closer to home.
In the first visit he noticed my optical nerves were swollen. He said that the first Dr. did not see it because I naturally had small optical nerves. He was scared that I had hydrocephalus.
From there I seen Dr. Rebecca Woods, Nuerologist. She Did an MRI and LP. The MRI came back fine with the exception of small blood vessels in my brain. My LP results were CSF levels of 20. (200). I never put two and two together. The ringing in my ears. The bubbles as I call it and the fuzzy static in my vision. Chronic headaches. Not to mention my bladder problems. (Not all of my bladder probs but some) all this was bc of PTC.
Diamox had too severe side effects (which from the sounds of it I am not alone in that). My CPF count is not high enough for any shunts. So I am left with LP.
I have no health insurance and am fighting my weight problem. trying to lose weight and stay away from things that I have read increase CSF. It is very scary so I dont think about it too much and i dont tell everyone what this is capable of. I just do what I can untill I can get insurance again.
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My 6mo twin DD's are EBF and just started rice cereal on the first. Everything has been going fine except this morning one of them had a diaper rash (lots of redness around her anus). I read this as one of the signs of an allergy. BUT I did just buy a different brand diaper yesterday (which they have used randomly before w/no issues). Do you think its the cereal or the diaper? Im ready to start...
It's wonderful here. it's nice to talk to people who understand.
When I actually admit that I'm not feeling well to the people around me, there like awww.
Truth is, I don't feel good, ALL THE TIME. If I mention I don't feel good, that means there's really some bad stuff happening inside me.
Meh.
No pretending here, just understanding.
So welcome:D
I have a Vp shunt, had an op of 28 with papilledema. I also seemingly have chiari (will hopefully get the dx on Monday). I have headaches daily and can not stand light of any kind which makes it hard for me to return to work. I also suffer from neck pain, balance issues, memory and concentration issues and those are just the tip of it.
Please if you aren't on anything right now, please talk to your drs before this progresses any further. You may at least be able to control it or hold it off as long as possible. An op of 20 is borderline for diagnosis but still elevated. You didn't mention headaches, not everyone gets them and if you don't have that issues keeping your pressure down may save you from those too.
Please feel free to ask any questions you can think of. We will be glad to answer.
Hope
I am new as well. Just joined a couple days ago and I am very excited to have such a great group to help me through this and get to know. I think I will learn so much. It is nice to meet you!!!
Tonia (VNC3)
Kay
Repeated LPs can be very dangerous, especially if you have experienced more than 1 post-LP low pressure headache. The risk there is for developing a Chiari Malformation.
Sorry you're here, but this is truly the best group around for info & support :) No energy to write more, sorry, but hope you're feeling okay today!