
Hydrocephalus Support Group
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Hi:
My name is Kurt, and was diagnosed with hydro in late Noveber 1977. Before the age of 13, I had roughly 15 revisions done. Since then surgeons changed the tubing in 1997 and again in 2000. When I spoke to my neuro-surgeon in 2004, he ordered a few scans and tests, and advised me that he found nothing wrong. After severe persistance in telling him of my symptoms, he FINALLY agreed to take me in for surgery. At that time as it turned out, there was in-fact nothing wrong with the shunt itself, but did remove some eccess scar-tissue around the shunt that was caused a potential blockage. All was find afterwords.
Now over the last six months, I have severe pain in my entire right sode of my heads from the bridge of the nose, right through to the very back of my skull.
Apon requesting another referal to the the surgeon, I managed to get in to see him sooner than I thought. I had an appointment with him Monday, February 21st. After talking with him at length and explaining other symptoms like loss of vision in one eye, lock jaw, nausia/vomitting, and severe fatique, he agreed to order a CT Scan and MRI, to see what is going on. THat is great, i'm happy he's ordering a full investigation into this.
My fear of this is that he may find one of two things:
A) that there is in-fact another blockage, OR
B) he'll tell me that there was nothing found in the tests that warants going in for surgery.
Now, when I was very persistant last time in getting him to do the surgey, he had remeoved the scar-tissue that was causing the increased pressure in my head.
I am afraid that now, he may not find anything wrong and tell me that I am just hullusinating or imagining things.......
So my question is, if you were in my position, what would you do......? Any advise or suggestions would be greatly appreciated.......Thankyou. Kurt......known formerly as IDONTBELONG
My name is Kurt, and was diagnosed with hydro in late Noveber 1977. Before the age of 13, I had roughly 15 revisions done. Since then surgeons changed the tubing in 1997 and again in 2000. When I spoke to my neuro-surgeon in 2004, he ordered a few scans and tests, and advised me that he found nothing wrong. After severe persistance in telling him of my symptoms, he FINALLY agreed to take me in for surgery. At that time as it turned out, there was in-fact nothing wrong with the shunt itself, but did remove some eccess scar-tissue around the shunt that was caused a potential blockage. All was find afterwords.
Now over the last six months, I have severe pain in my entire right sode of my heads from the bridge of the nose, right through to the very back of my skull.
Apon requesting another referal to the the surgeon, I managed to get in to see him sooner than I thought. I had an appointment with him Monday, February 21st. After talking with him at length and explaining other symptoms like loss of vision in one eye, lock jaw, nausia/vomitting, and severe fatique, he agreed to order a CT Scan and MRI, to see what is going on. THat is great, i'm happy he's ordering a full investigation into this.
My fear of this is that he may find one of two things:
A) that there is in-fact another blockage, OR
B) he'll tell me that there was nothing found in the tests that warants going in for surgery.
Now, when I was very persistant last time in getting him to do the surgey, he had remeoved the scar-tissue that was causing the increased pressure in my head.
I am afraid that now, he may not find anything wrong and tell me that I am just hullusinating or imagining things.......
So my question is, if you were in my position, what would you do......? Any advise or suggestions would be greatly appreciated.......Thankyou. Kurt......known formerly as IDONTBELONG
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