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Neurology (Expert Forum)
Re: Hydrocephalus and Deafness
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Re: Hydrocephalus and Deafness
by CCF Neuro[P] MD RPS, Jan 01, 1995 12:00AM
Posted By CCF Neuro[P] MD, RPS on February 17, 1999 at 17:54:07:
In Reply to: Hydrocephalus and Deafness posted by Rosablanca on February 16, 1999 at 12:54:37:
Hello : My name is Rosablanca, I have a 9-year old boy who was born premature (32 weeks)(8-9-89), he was on a "ventilator" for a long time, it was almost 21 days and he received (gentamicyn)(antibiotic). When he has 1 month old, he had his first shunt placed. When he turned 1 year old and he was not talking we began to worry, so when he was 16 months we knew he was deaf. He has a sensorial hearing loss. He was fitted with hearing aids right away. About the hydrocephalus, he had no trouble at all until we made the extention (the abdominal tube was short)(2/92). In March/92 the shunt stopped working and he had another revision. In April/92, not even 30 days had passed, he had another revision. That shunt lasted until August/95 (one more revision). Then he had another revision in September/97 and the last one was on Thanksgiving day Nov.26/98. So he has had a few revisions., too many if you ask me. I DO NOT UNDERSTAND WHY HIS SHUNTS STOP WORKING SO OFTEN ? ! (I have heard of people that they only need one revision in their life).
The doctors,they have changed the "pressure of the shunt"., they have changed the "location" and even "left" a piece of a previous shunt inside his brain. (Nobody told us about it until we saw it in an X-ray) and still, it seems that "almost" every year he needs a new shunt. He has never had an infected shunt and he shows the "symtoms" of hydrocephaly very clearly and very fast, we have acted very fast too.
At the same time, my son is deaf, he wears two hearing aids,and he has a "good rest" (residual hearing), he has been in a hearing impaired program all these years and yet he has so much trouble communicating, writing (spelling) and reading.
Even with his lack of communication they perfomed a psycho- educational evaluation and he scored 78 (slow learner range)
His doctors have performed multiple Cat-scans, MRIs, EEGs and even an extended EEG. One of the doctor said that Carlos has a clinical picture consistent with static encephalopathy (mild degree cerebral palsy). His lated EEG did not show any evidence of any paroxysmal activity as notice previously and the chromosome analysis is completely normal. There was no evidence of fraxe. They wanted to perform the extended EEG to find out if Carlos was suffering from the "petite mal" but is extended EEG results stated : This is a normal video EEG telemetry monitoring study which shows no definite epiletiform activity.
I am a worried mom, he is now in a new "residential" school for the deaf and still his progress is slow, specially in making sentences, in spelling (he forget the words he just learned last year), he does "fair" in math and I do not know what to do. I do not if all this "revisions" affect him and how much.... I know that just the fact of being "deaf" makes things more difficult for him.... what advice can you give me ? and thanks.
Dear Rosablanca:
I am sorry to hear about your son. It is so difficult to understand what you parents have to go through with the problems your son has and I wish I could give you a easy answer to follow and your son would be cured. Your son's deafness could be due to alot of reasons, the medications he has been on, the prematurity, etc. it is impossible to tell. I can not tell you why so many shunts have failed. I know that sometimes this happens to a particular patient, but the reasons for which I can not say. At 32 weeks premature, this is not that early that we expect to see problems with cognitive function, but it might be playing a role. This would be especially true if he had a bleed in his brain during this time. Even if he did not, being premature and deaf might be large factors in his learning problem. He needs all the early intervention and help that he can get. Tutors to help him in school, special schools that help the hearing impaired, etc. You as a family will have to spend alot of time helping him
reach his full potential. Progress must be measured by your son, not by what other boys are doing. Rejoice that he is improving. Hang-in there, this is a very tough road to travel and you have all my heartfelt hope. Do the best you can and try not to get too discouraged when things are going slowly.
Best of luck.
Sincerely,
CCF Neuro[P] MD
In Reply to: Hydrocephalus and Deafness posted by Rosablanca on February 16, 1999 at 12:54:37:
Hello : My name is Rosablanca, I have a 9-year old boy who was born premature (32 weeks)(8-9-89), he was on a "ventilator" for a long time, it was almost 21 days and he received (gentamicyn)(antibiotic). When he has 1 month old, he had his first shunt placed. When he turned 1 year old and he was not talking we began to worry, so when he was 16 months we knew he was deaf. He has a sensorial hearing loss. He was fitted with hearing aids right away. About the hydrocephalus, he had no trouble at all until we made the extention (the abdominal tube was short)(2/92). In March/92 the shunt stopped working and he had another revision. In April/92, not even 30 days had passed, he had another revision. That shunt lasted until August/95 (one more revision). Then he had another revision in September/97 and the last one was on Thanksgiving day Nov.26/98. So he has had a few revisions., too many if you ask me. I DO NOT UNDERSTAND WHY HIS SHUNTS STOP WORKING SO OFTEN ? ! (I have heard of people that they only need one revision in their life).
The doctors,they have changed the "pressure of the shunt"., they have changed the "location" and even "left" a piece of a previous shunt inside his brain. (Nobody told us about it until we saw it in an X-ray) and still, it seems that "almost" every year he needs a new shunt. He has never had an infected shunt and he shows the "symtoms" of hydrocephaly very clearly and very fast, we have acted very fast too.
At the same time, my son is deaf, he wears two hearing aids,and he has a "good rest" (residual hearing), he has been in a hearing impaired program all these years and yet he has so much trouble communicating, writing (spelling) and reading.
Even with his lack of communication they perfomed a psycho- educational evaluation and he scored 78 (slow learner range)
His doctors have performed multiple Cat-scans, MRIs, EEGs and even an extended EEG. One of the doctor said that Carlos has a clinical picture consistent with static encephalopathy (mild degree cerebral palsy). His lated EEG did not show any evidence of any paroxysmal activity as notice previously and the chromosome analysis is completely normal. There was no evidence of fraxe. They wanted to perform the extended EEG to find out if Carlos was suffering from the "petite mal" but is extended EEG results stated : This is a normal video EEG telemetry monitoring study which shows no definite epiletiform activity.
I am a worried mom, he is now in a new "residential" school for the deaf and still his progress is slow, specially in making sentences, in spelling (he forget the words he just learned last year), he does "fair" in math and I do not know what to do. I do not if all this "revisions" affect him and how much.... I know that just the fact of being "deaf" makes things more difficult for him.... what advice can you give me ? and thanks.
Dear Rosablanca:
I am sorry to hear about your son. It is so difficult to understand what you parents have to go through with the problems your son has and I wish I could give you a easy answer to follow and your son would be cured. Your son's deafness could be due to alot of reasons, the medications he has been on, the prematurity, etc. it is impossible to tell. I can not tell you why so many shunts have failed. I know that sometimes this happens to a particular patient, but the reasons for which I can not say. At 32 weeks premature, this is not that early that we expect to see problems with cognitive function, but it might be playing a role. This would be especially true if he had a bleed in his brain during this time. Even if he did not, being premature and deaf might be large factors in his learning problem. He needs all the early intervention and help that he can get. Tutors to help him in school, special schools that help the hearing impaired, etc. You as a family will have to spend alot of time helping him
reach his full potential. Progress must be measured by your son, not by what other boys are doing. Rejoice that he is improving. Hang-in there, this is a very tough road to travel and you have all my heartfelt hope. Do the best you can and try not to get too discouraged when things are going slowly.
Best of luck.
Sincerely,
CCF Neuro[P] MD
