ANA Discussion Forum
General Category => AN Issues => Topic started by: amyreit on March 05, 2011, 01:27:05 pm
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Hello,
My mother was in the watch and wait phase for her AN for several years. Last May, her walking deteriorated to the point that she could barely shuffle around, her balance was horrible, she had incontinence and finally severe dementia which scared my father enough to take her to the doctor. I live 1200 miles away but had to make two trips cross country to make sure someone asked the right questions. They diagnosed her with Normal Pressure Hydrocephalus and said she needed a shunt. I spent untold hours trying to get someone to tell me that this was connected to the AN, but to no avail. Every neurologist and neurosurgeon there told me it was unrelated. She did have the shunt prodedure at the end of May which dramatically improved all of her symptoms. The report the surgeon sent to her primary care doctor said "it appears that this was not NPH but actually caused by the AN affecting the ability to absorb the CSF." Are you kidding me? DUH!!!! I was incredibly frustrated. When she went back for her follow up with her ENT who was monitoring the tumor, he didn't even do a new MRI, just knew from the ones in May that it had grown and suggested the Gamma Knife procedure. She did that in September and we are waiting for an appt later this month to see if there has been any reduction in size or at the least no more growth. In the meantime, it is very hard for me to monitor her from such a distance. My dad tells me that she seems to be extremely moody. Very happy one minute and unreasonably angry the next. Her other complaints include a loss of taste and lack of appetite. I notice that while the dementia is gone, her short term memory has definitely been affected. Do these symtoms seem normal for this situation or should I be pressing them to get the CSF pressure checked? Anyone have similar issues?
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Hi, Amy ~ welcome to the ANA discussion forums.
I'm genuinely sorry to learn about your mom's problems and hope things improve, soon. I'm not a doctor and cannot 'diagnose' the exact source of your mother's issues but of course they may be related to her radiation treatment because within this time period (6 months) of the Gamma Knife procedure, tumor swelling often occurs with various associated symptoms. The loss of taste could definitely be related although the short-term memory loss is usually associated with AN surgery, it could also be related to the AN swelling as a result of the GK procedure. Your moms 'moodiness' may also be related to her AN and/or the radiation but that is difficult to determine from a distance, as you well know. I would seriously consider having your mother undergo a complete medical exam to determine if she has other issues that could be the source of her problems - as well as having the MRI scan, which should be informative. Checking her CSF pressure should definitely be considered. I salute your efforts to help your mother as she struggles with these issues. Not easy from 1200 miles away. You are doing the best you can and I trust that further posts will add to your information and that these problems can soon be resolved. Please don't hesitate to ask anything. Our members are knowledgeable and want to help. Just ask. :)
Jim
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Hi,
you didn't mention what is the size of your mom's AN?
All the doctors that I have seen have explained to me that there are two ways through which ANs can cause hydrocephalus. One is because they may release a protenaceous fluid (I know that I probably mispelled this), which interferes with the absorption of CSF fluid. The other reason (for larger ANs) is that the ventricles are partially blocked, leading to CSF fluid build up. I am surprised that her doctors didn't think that the AN was the reason in the first place.
Whatever the reason is, it probably still exists even after the GK, since the AN is still there. If there is some swelling, like Jim suggested, it is likely to get worse. On the other hand, the shunt should help alleviate the pressue. Obviously I am not a doctor, but my non-medical opinion is that you should insist on another MRI - this can give an indication about hydrocephalus and swelling of the AN.
Of course moodiness and other cognitive problems may just be part of the whole AN package. The AN compresses the cerebellum and this may case cognitive problems.
I hope you will find a way to resolve this soon.
Marianna