Gabriel's Life Topic: New to the forum

Usqua on "New to the forum"

Usqua — Wed, 03 Jun 2009 18:17:03 +0000

Martha!! Your story is VERY inspiring and I am so glad I took the time to read it. I was directed to it because you replied to my post ;) I have tried to read many of the stories on here, but there are just SOOO many!
I was diagnosed with hydro about 3 months ago, and am having surgery on the 18th of this month (NO SHUNT)! We are trying the other thing I mentioned first. I am 35, headaches, right eye pain, dizziness, morning sickness....same. They did not say mine was acute, just needed to have it fixed before it caused more trouble.
I am SO happy to hear that you have had NO shunt trouble. It seems all I hear are negatives about them, which really scared me. I just cant see having revisions, infections...etc...for the rest of my life!
I hope that you are feeling and doing GREAT! From all the posts I have read, you seem to be such a caring person. Bless you for taking time out to care for so many others. May you feel all the suport you provide to others :c)

Stacey

mp327 on "New to the forum"

mp327 — Fri, 20 Feb 2009 00:17:00 +0000

Hi Philip--

Just want to thank you for sharing more about your eye problems. I'm so sorry you have had so much to deal with in this regard and that it has had such an impact on your daily life. As for me, I'm still not sure of the source of my eye pain--perhaps I will never know. I haven't had any problems with it for quite a long time, so perhaps the shunt has helped. I just don't know.

Thank you again for the information. I wish you the very best and would look forward to hearing from you again in the future as to how you are doing. Take care.

Martha

PMBlind on "New to the forum"

PMBlind — Thu, 19 Feb 2009 04:21:50 +0000

Hi Martha,

I have had constant eye pains ever since the 1993 incident. My eye pressure mostly goes up due to the Toxoplasmosis condition more often than the hydro. In the Summer of 1997, my eye pressure really had gone to a High level in the left eye. The highest measurement I had on the left eye was a 48, which is three times the normal pressure of 16.

My eye pressure at this level also caused a tremendous amount of damage to the left eye. Before the event, I was seeing close to 7 - 8 feet during the day and maybe 4 - 6 at night. Now I only see from 3-4 feet during the day and now less than half (1/2) foot at night

After the event in that year, My eyes have really become sensative to light during the day and at night with headlights from cars.

Since have the pressure go upto the 48, I have also become to notice when the pressure increases on its own, So i then take some Tylenol or Ibuprofen to help reduce the pressure as well as wear sunglasses.

The doctor had perscribed me two kinds of eye drops and oral medications to help bring down the pressure from its dangerous level. The pain felt like a migrane headache, just mainly on the eye. At times when the brightness of the light is too bright, my eyes do tend to water up as well.

In 2004, while working at Barksdale AFB, during construction of the facility I was working in, I ran into a white pole in the building. Mainly because I did not see it. The pole had blended in with the background and with no depth perception or being able to see distance. This was when I had started wearing the sunglasses more on a permanent basis when at work.

Also for a few days after this particular incident, I used my white cane in the facility just to make sure I can figure out where all items were and locate using (echo location) from sound on metal to pin point objects in the building. I use this more now at my current location of work in the San Antonio area as well with the constant changes they do in the store.

Philip

mp327 on "New to the forum"

mp327 — Wed, 18 Feb 2009 13:30:21 +0000

PMBlind--

Thank you for your post. It is good to meet someone out there who has had their original shunt for as many years as I've had mine. I'm so happy to hear that you have not let Hydrocephalus hold you back from life's pursuits and that you have become quite successful in your business.

I am interested in your mention of eye pain. Before I was diagnosed, I suffered from a terrible bout of extreme right eye pain, which was accompanied by constant watering of the eye, to the point I really couldn't see out of it. I must say it was some of the worst pain I've ever experienced. I saw an opthalmologist, who diagnosed me with tear duct obstruction, due to scar tissue from a very old eye injury. I went along with this diagnosis, and had several subsequent bouts. However, after being diagnosed with hydrocephalus a few years after that, I now wonder if that eye pain and constant watering of the eye was related to the hydro instead. Did you experience extremely watery eyes along with your pain? I don't believe that my eye pressure was tested until after I was diagnosed with the hydro. If you could share more of your experience regarding the eye pain, I would appreciate it.

I really don't think of my hydrocephalus on a daily basis. It has not kept me from being extremely active and into fitness. However, I do sometimes still suffer from the occasional headache or days when I feel not quite as sharp mentally. It always makes me wonder if I'm beginning to have a malfunction. But the headaches always seem to go away with Tylenol and the sharpness makes a quick comeback, so I have not had to go through that to this point, and hope I don't.

Thanks again for your post. If you don't mind sharing more about your eye pain, I would be most interested. Take care and it was good to hear from you.

Martha

PMBlind on "New to the forum"

PMBlind — Wed, 18 Feb 2009 05:05:40 +0000

Hi Martha,

I had my vp shunt placed in August of 1993. The main part of my shunt is still the original. The only revision I have had done, is to have a new tube inserted due to a rupture I had back in 2003.

My Hydrocephalus condition was diagnosed at age 19, while attending a school for the blind. I was originally diagnosed with Congenital Toxoplasmosis. From the months of November 1992 through March 1993, I started having some flare up problems with the Toxoplasmosis. Constant eye pains in both eyes. My Eye specialist had put me on some medication for the Toxoplasmosis, however after a few months on being on the medication, is when the hydrocephalus was developing.

In late March 1993, When I kept on going in constantly for the eye pain, the eye doctor decided to measure my eye pressure. I was measuring 35 in both eyes. He then requested a Spinal Tap, to get the diagnosis of the Hydrocephalus.

As you can imagine, at Age 19, No family in the San Francisco/Oakland CA area. (Family in Southern CA), I was really scared and called my parents to tell them the bad news. They were at my side within hours of driving from near Los Angeles to the Oakland area.

I am currently 35 now. Still with the original shunt, now operate a small business online. Also with less than four feet of sight in my left eye. I started a small business doing Braille Services (Greeting Cards) for which as of today I am the largest provider.

mp327 on "New to the forum"

mp327 — Fri, 13 Feb 2009 20:27:47 +0000

Hello everyone. My name is Martha and I am a 55 year old female who was diagnosed with decompensating congenital hydrocephalus in 1993 at the age of 39. After experiencing excruiating headaches, severe pain behind the right eye, numbness and tingling in my extremities, morning nausea, and cognitive and memory difficulties for several months, I went to my GP who ordered a CT scan. Initially, he thought I was having migraines; however, the scan showed severe hydrocephalus. I was immediately referred to a neurosurgeon who had already seen my scan in the radiology department. His exact words to me were "this is the worst case of hydrocephalus I've ever seen and I wouldn't touch you with a 10-foot pole." Well, talk about being upset and scared to death! I returned to my GP and he referred me to a neurologist, who ordered an MRI to rule out chiari, which was not present. I then saw two more neurosurgeons, who agreed that shunting was necessary. I had the surgery on December 29, 1993 and still have the same VP shunt 15 years later. I have had no problems, but did have concern 9 months after surgery that something wasn't right, as I began having some symptoms again. My neurosurgeon tapped my shunt and sent the CSF fluid to the lab to rule out infection. It came back clean and ironically, I immediately felt better once he did that procedure. I have had a completely normal life since then. I am very active, am a runner and weight lifter for exercise, and feel that hydrocephalus has not really impacted my life since undergoing the surgery. However, I was diagnosed with anal cancer in June 2008, so I have been dealing with that health challenge in recent months. After undergoing chemo and radiation for 6 weeks, ending on September 9th., I am now beginning to feel like I am putting the pieces of my life back together. I feel so fortunate to have been spared up to this point the problems and revisions that so many others on this forum have experienced. My heart goes out to those who are dealing with ongoing complications.