Hi Shannan: I am so sorry that your daughter had to go through all of these problems...I rarely check my email on my yahoo account because I use my gmail account more often...However,I had to respond to your email today, because it really touched my heart...I can relate to what happened to your daughter and I really need to vent this evening...I hope that you do not mind me sharing.
My name is Freeda. I was diagnosed in with PTC in October 2005...Like your daughter, I was not taken seriously...I think that I had PTC long before I was ever diagnosed and I have never been morbidly obese...No one who looks at me understands how doctors can say that it is my weight that caused this problem...Although I did have less fluid on my brain after losing weight, I still think that there is a missing link...I never had any symptoms until
after I fell and knocked myself unconscious in the midst of fainting in April 2005, about six months before the diagnosis...And in November of 2004,I fell and lost my balance, while at work in my classroom...I had been having headaches....And the fall caused an injury to a nerve in my right leg and under my knee cap...After enduring weeks of headaches, then neck pain, then neck stiffness, ear pressure, a leaky nose, eye pressure and discomfort, I went to emergency ROOMS...All of my MRIs or CT Scans were normal...The doctors said I was suffering from Post Traumatic Stress because I had lost my father in 2005...And my love life was problematic...Well, it was a nightmare! Of course I had problems in life but my head hurt so bad that I wanted to commit suicide or at least be put to sleep for a while...Nothing ever helped the pain, not even the Maxalt or Topamax for migraines...Even the neurologists insisted that I had bad migraines...And it took my
EYE DOCTOR less than ten minutes to go into a near panic when he discovered the massive pressure on my optic nerves...My eyes were seeing patches of black and then a little bit of nothing,moving on their own...Just in time, I rushed to a FOURTH hospital, to have a lumbar puncture done....And as soon as they opened my spine, fluid went everywhere, all over the doctor and nurses, etc...I was crying and they had so much compassion because my pressure was 38 or 39 as well...And this was not the end....I have had many other lps and narrowly escaped the shunt...In 2006, I developed balance and coordination problems, severe neck pain, muscle fatigue, head and neck tremors...I have not worked since 2006 and have had problems finding work since then...Substitute teaching is going really slow and I am yet looking for work. I pray that a doctor will find out the real cause of this rare disorder...While losing weight, although, I was never morbidly obese, has
helped reduce my fluid levels, I have still continued to have other problems that seem to be related. I have never been the same...Never. I pray for you and your daughter...I am grateful for every day. After occupational and physical therapy for my balance and coordination problems and tremors, I seem to manage my symptoms better...I really think that the fall I suffered caused the neck problems, which have affected the strength in my arms. Only God knows what is really going on...Take care...I enjoy painting from time to time. And I am trying to come out of isolation...PTC has changed my life in both positive and negative ways...On the positive, I do not take anything for granted anymore. After watching Mystery Diagnosis, I now know why so many doctors screw up in their diagnosis...And so that I do not make myself any sicker, I have had to let go of the bitterness and the anger...Yet, I still believe that many doctors could be more sensitive to what is
going on with a patient, regardless of the test results...I no longer rely on or trust MRIs or CT Scans...I mean, I really learned the hard way, that my ultimate trust must be in God...I know that he is the only reason I am yet alive.
Sincerely, Freeda
--- On Mon, 3/9/09, Shannan Bridgewater <shannan15434@...> wrote:
From: Shannan Bridgewater <shannan15434@...> Subject: [ptc] introduction To: ptc@yahoogroups.com Date: Monday, March 9, 2009, 2:28 PM
Hi, I’m Shannan from Arizona and my daughter was
diagnosed with PTC in Dec 2005. She spent 7 years with increasing
intracranial pressure before a good optometrist discovered the PTC. She
was a competitive gymnast and 12 years old when the headaches started and 6
months after they started, she was forced to quit gymnastics due to the
uncontrollable headaches. She had an MRI and a CT scan, but they showed
nothing. I had just remarried and her dad remarried 2 days after me, so
they tossed them off to psychological migraines and all the doctors blew her
off as psycho for the next many years. After 5 years, she was popping
handfuls of ibuprofen and a psychologist had her committed for trying to commit
suicide (she said she wasn’t, just trying to stop the pain, but no one
believed it was a physical pain). She had been date raped and the
counselors believed she needed to deal with that and the remarriage of her
parents. When it was discovered that her biological father had molested
her (a revelation that NO ONE had ever suspected, but was confirmed by her
brother- who said he also was molested, but didn’t want to get his father
in trouble), then they REALLY believed it was a psychological. Thank God
for the optometrist who found the PTC. Since then, my daughter has been
able to go forward with her life. Her lumbar peritoneal shunts were
failing every 4-6 months and the last lp shunt got horrendously infected and we
almost lost her. After they removed that and cleared up the sepsis, they
put in a ventricular/ peritoneal shunt in. That lasted 10 months until
scar tissue built up around it and it became clogged. She just got out of
surgery Friday for that to be replaced. 8 surgeries in 3 years. Diamox
and other meds didn’t help and the pressure always seems to be 35-39 when
they do an lumbar puncture when they suspect the shunt has failed. She
didn’t have a weight problem until 3 years into the disease, then the
inactivity and constant needing to rest to try and let the headaches go away,
brought on the weight.
Hi, I'm Shannan from Arizona and my daughter was diagnosed with PTC in Dec 2005. She spent 7 years with increasing intracranial pressure before a good ...
Hi Shannan: Â I am so sorry that your daughter had to go through all of these problems...I rarely check my email on my yahoo account because I use my gmail...
Yep, you hit it right on the head! The optometrist she went to also went into panic mode as well as the opthomologist they sent her to. Everyone else just...
My God Shannon, I do feel for your daughter, molestation, rape, other things also happened to me. (Not by my dad). One nuero said that all that was wrong with...
Hello everyone! My name is Janice and my ten yr old daughter Maia was diagnosed with PTC on Feb 25 of this year at Sick kids hospital in toronto. We live in ...
Hi Janice, I am sorry about your daughter. I can definately empathize as I have often been told that my eyes are okay, so the PTC is better. It is very...
My daughter also felt sick to her stomach most of the time- basically from dealing with the pain. When the shunt is working, she feels great and is able to...
I need to know. Do you people sweat a lot with PTC? Do you have stomach aches?Do your arms feel weak and are your leg reflexes diminished? I was very glad to...
Hi Martha: Â Â I just wanted you to know that I have the sweating problems as well as feeling cold. I was diagnosed with PTC in 2005. Also, I have weakness in...
Thank you for writing About the all in your head thing...boy do my daughter and I know that through experience... Sick kids listened to us. Why does it need a...
Hello-I just wanted to chime in about being hot - excessively - the majority of the time - even when I'm not feeling over heated - my skin is burning up -...
Hi Denia: Â Â You are not alone! For many years, even during my childhood and adolescent years, my mother told me I was hot to touch! My husband says the same...
Thanks Freeda - you described my circumstances to a tee! I don't remember feeling "hot" as a child - but was never able to get pregnant - did fertility...
Hi Denia. Don't be embarrassed about the rashes. It happens to a lot of women. It is probably a fungal/yeast infection that happens naturally in moist,...
Thanks Bridget - I really figured it was a type of yeast infection - but knowing by hearing it from someone with your experience makes me feel better - I will...
My daughter was cautioned and put on a special diet as a precaution she is five ft two and 122 pounds is not overweight... She is having a bad case of the...
... arms...she has also had horrible back pain then it went away but came again. Thanks for the reassurance her sweating was so bad before diamox she couldnt...
Hello Janice and Maia - My neurologist prescribes phenergan for me to use with my really bad headaches - not only does it work wonders for the nausea, but he...
Hi Denia Thanks so much for the support and advice. It is really difficult esp in canada and we are in a small town...but I will never give up on my ...
You are very welcome! I had forgotten about you guys living in Canada. Have you seen the dr. since your last post? I don't mind you taking my email to the dr...
... From: Sequins <sequins@...> Subject: Re: [ptc] Re: introduction To: ptc@yahoogroups.com Date: Wednesday, March 25, 2009, 6:02 PM Â Today I found out...
Hello there i dont mean to scare anyone with what I said about the drinking...I am as confused as anyone else about this. I wanted to let people know that I...
Janice, I'm so sorry to hear the news about lupus, but at least you have a better understanding of your daughter's illness.? I remember specifically asking my...
My daughter has been told by her neuropthalmologist to drink tons and tons of water. However, I've noticed that when she is given intravenous fluids, she...
Hello Martha, I also have problems being hot, when the temp is not actually hot. Just thought it was me. Also have to take antacids w/each meal. OK, we have...
Its funny (not the haha kind) that you should mention the rashes you get on your body in those 2 places. I am currently experience a very painful rash under my...
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