Recovery after the vp was 2 days for my daughter and 2 weeks for
a lp shunt. AND the vp lasted longer!
From: ptc@yahoogroups.com
[mailto:ptc@yahoogroups.com] On Behalf Of jwtooblsd blessed
Sent: Thursday, March 12, 2009 7:37 PM
To: ptc@yahoogroups.com
Subject: Re: [ptc] PTC since I was 14, I am now 31
|
Well Kettra, I am sorry to hear about all you have
been through. I had a neurosurgeon that didn't want to do a vp shunt because
he said I was too old (27) and my ventricles were too small. He was a older
guy and I think he didn't have too much experience with them. My neurosurgeon
now is great!! He is a young guy and cute. He put a special bracket on my
head and did a special mri to see which ventricle would be best to use. Let
me tell you, I am 37 now and have had 13 surgeries and that was the 1st one
that I came out of feeling like I never was sleep. My nurse gave a regular tray.
I noticed that you must be in Texas, I live in Ftw, but go to Dallas to see
my neurosurgeon. Let me know if I can be of any help. From: kettra
<lpriestly@...> My name is Kettra. I was
first diagnosed with PTC when I was 14. I went several months of having
difficulty with headaches, my eye began to protrude and the pediatrician had
no idea what was wrong with me. I was sent to Texas Children's Hospital and
they did my first spinal. My pressure was so high it shot accross the room.
They put me on diamox and sent me home. After a few months of battling the
side effects from the diamox, the headache stopped and I didn't have any
problems. My family thought I was completely cured. Fast forward to age 22. I
gave birth to my first child and actually lost about 50 lbs after his birth.
The headaches started again and I started having trouble with my vision. I
went to the optometrist for my vision and he told me I had an eye urgency
which led to a lp. At that time my opening pressure was 46. I was placed on
diamox again, along with Topamax and pain meds. My optic nerve continued to
be elevated and I began having spinals almost biweekly. After a year, the
specialist consulted and decided that I should have surgery. I went into the
hospital the last week in June of 2002. I had a lumbar shunt put in. I told
the doctors that I didn't feel right and that I had a horrible headache, but
they discharged me anyway. I got home and my head was hurting as well as my
back. I told my parents that I thought I was leaking and that I told the
Doctors but no one believed me. My mother suggested I lay on a vibrating
massaging pad. The minute I layed down, my entire suture opened and CSF
leaked every where. I was rushed back to the hospital in Houston where they
stitched me, with no numbing medication mind you, and admitted me. I
continued to leak and they decided the shunt had coiled. I had surgery to
correct the coil. I then developed MRSA and required another surgery to clean
the infection. The infection persisted, so there was fourth surgery to remove
the shunt. I ended up being in the hospital for an entire month. I went back
on diamox and then learned I was pregnant. I had to come off the diamox.
During my pregnancy, my optic nerve lowered, the fluid came off and the
headaches went away. We couldn't believe it. I did not have any problems for
1 year, then it started again. About 4 months into the diamox, I was pregnant
again. I stopped the diamox, and same as before, the headaches went away.
Pregnancy was definately a good thing for me. My nuerologist and I joke all
the time that I should just have more babies and the ptc will go away. Now, 2
years later, I am battling ptc again. My headaches are back, and I am
experiencing vision loss. The doctors wanted me to consider a vp shunt, so I
saw a nuerosurgeon and he said he couldn't put the shunt in becuase I don't
have one big pocket of fluid built up but small pockets. I am so frustrated.
They have decided this time that PTC came became back because of weight gain.
So they've referred me to a bariatric surgeon. I tell you, I am skeptical
that weight loss is the answer, but to get the headaches to go away, I am
willing to try anything. I know this was a long post, but I just needed to
get it all out and share with someone who knows what it feels like to battle
PTC. Any advice on coping with the day to day struggles is welcomed because
after all these years, I still feel like I live on an island all alone. |
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