More of a comment then question - Pseudotumor Cerebri

[whcrmc]

Today is my 39th birthday and I am almost 3 weeks post-op.  Please allow me to explain my story in hopes that it will help someone else.

For months I had suffered with headaches but took medication and ignored them, it wasn't until my eye sight became affected that I decided to do something about it.  I made an appt with my Optometrist in April of 2008, after a series of failed field tests, he sent me to an Ophthalmologist.  The Ophthalmologist made an emergency appt for me to see a Neuro-Ophthalmologist.

The Neuro-Ophthalmologist was concerned because the nerves in my right eye were very swollen.  After a series of MRI’s and MRV’s, I was admitted to Jefferson Hospital for a Spinal Tap.  A normal person’s spinal fluid pressure should be between 10 – 20, mine was 38.  I was scheduled for surgery on June 30 with the diagnosis of Pseudo tumor Cerebri, which is also called a fake tumor.  The brain thinks there is a tumor so the spinal fluid increases.  However, the spinal fluid cannot be absorbed by the brain quickly enough and this causes swelling and pain.
This disease apparently affects women between the ages of 20 and 40 who are overweight and have unusual menstrual cycles.  

So, on June 30 I went into brain surgery to have shunt placed in my head to drain the spinal fluid from my brain, this will stay in forever, as the disease is a lifelong disease and can be life-threatening if not treated in time.
The days after the surgery were difficult.  The surgeon told me that they would only shave a 2” patch of my hair.  I had long blonde hair down to the middle of my back.  After awaking from surgery the whole right side of my head had been shaved, while the whole left side still had all of my hair!  I wish I would have known so that I could have had my head shaved on my own and dedicated my hair to Locks of Love.  Before I left the hospital, my physical therapist was nice enough to cut the left side of my hair so that I would look somewhat normal when I left the hospital.

I was very tired and sore for about 2 weeks after surgery.  I had about 10 stitches in my head, 8 behind my right ear and 15 in my stomach.  

I went for a follow-up with my Neuro-Ophthalmologist and everything seems to going well.  I see my neurologist in September for a follow-up appointment.  I have recently read that the shunts only work about 70% of time and become frequently clogged.

If anyone has experienced any of the symptoms I have experienced, please let me know how you are making out and any side affects you have had from the shunt.

Thank you!

[Judy1961]

Happy Birthday.

[medchick0523]

Happy Birthday!! I too, have IIH/PTC, diagnosed in October of 2006. My case isn't severe enough to warrant a shunt, but I did have an ICP monitor placed for four days in May, pictures of my scar is on my profile page. When I woke up I was mortified as to how much he shaved, and how close it was to the my forehead, I can't imagine having the entire side of my head shaved. My highest OP was 34.5, but I have no optic nerve involvement.

I hope are recovering well, and your shunt settles soon!!

Take Care,

Samantha xx

(IH Sisters forever!!)

[CURLSNJ]

Hello  Just read your harrowing story .. I truly hope you are feeling ok now.. what a whirlwind hellish situation to be in.. and about your hair..  I can relate some people dont understand the significance of a persons hair  but I do and even though you were really sick they should have been upfront with u(maybe they did thnk they would only have to take a small square and thngs went beyond their control)  I hope you are healing well and  please drop me aline if you need to "talk"   I am a chronic pain patient.  take care.  curlsnj

[Cath278]

Hi Just read your post. I was recently diagnoised with Benign In tercranial Hypertention. thats what they call it in Ireland,After being treated for the wrong illness for the last 8 months i finally met a wonderful neuro and her team who brought me in to hospital fof two and a half weeks and got to the bottom of it all. Among so many tests I had a lumbar puncture and the pressure was 46. Every one was a bit shocked at this. I also have a few more problems but at least like you I am going forward. I Havnt started treatment yet, I have to get my srteght back first but  I know it will repeat LP  for about 2 yrs to relieve pressure and medication. Then move on to the shunt. Id love to talk to you about it all if you want. My eye sight is not that great, some damage has been done but im good to type for about 20 mins! Im so sorry about your lovely hair. Thats very tramatic under any circumstances but so much worse this way.I hope you continue to feel well and you have no futher problems with the shunt.Best wishes, Cath278