ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: mamugel on July 09, 2019, 09:12:52 am
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I had GK for a 2.1 cm AN on February 7, 2019. I was doing well with few issues Completed vestibular therapy with good results. On June 5, 2019 I was hospitalized after losing my ability to balance (no falling), stumbling gait and some confusion. I had a VP shunt placed on June 10, 2019. I am now 4 weeks out. I reached out to the peer support list and was helped immensely by someone with a shunt. Hers was placed for another reason.(CSF leak) I am hoping to find someone with a shunt for hydrocephalus. I am experiencing lightheadedness (no Blood pressure issues). Anyone out there with this issue. Would love to hear from someone. This supposedly a very rare side effect of GK or possibly just from tumor? Thank you, Mary Ann
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Welcome to the forum Mary Ann,
Sorry to hear about you placement of a VP shunt. How did the operation go? Any complications (apart from the lightheadedness)? Is your lightheadedness worse when you stand or lie down?
Communicating hydrocephalus following gamma knife occurs about 5% of the time:
11/221 = 5.0% https://www.ncbi.nlm.nih.gov/pubmed/22535199
14/244 = 5.7% https://www.sciencedirect.com/science/article/abs/pii/S187887501501520X
27/702 = 3.8% https://www.ncbi.nlm.nih.gov/pubmed/27882725
8/92 = 8.7% http://www.asianjns.org/article.asp?issn=1793-5482;year=2019;volume=14;issue=2;spage=487;epage=490;aulast=Shimizu
It appears that the larger the tumor, the more chance of hydrocephalus. Apparently ring enhancement patterns (whatever they are) are also not a good sign.
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The surgery went well. Took about 1.5 hours and I was fortunate to have 2 surgeons with whom I have worked for years ( recently retired as a RN after nearly 40 years). In describing the lightheadedness I am not sure I have selected the right words. It is a fuzzy feeling not involving my thinking and ability to analyze or converse well. I saw a post where someone described the feeling as light headed. My B/P is fine. I do well lying down and sitting up. Standing is where I feel the issue. My balance is quite good. I took 12 weeks of vestibular therapy after the GK treatment as I mentioned. I fully believe that I will get better. When I do I hope to be able to reach out to someone else with the same problem. I know it is fairly rare after GK but the stats in these article look as it it is not as rare as I thought. Thank you very much for these sources.
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Is your "lightheadedness" whenever your standing or only for the first few minutes after standing?
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Hi Mary Ann,
my neuroma was a small as yours. In the 2010 I had cyberknife but a year later I had a VP shunt placed.
The neurosurgeons defined it as an aresorptive hydrocephalus due to a malabsorption of proteins.
My neuroma treated a year before with cyberknife was probably going through an inflammatory process and maybe this was the cause.
I could not say it for sure as I am not a doctor.
Anyway the cyberknife did not stop the growth of my neuroma and in the 2013 I had a retrosigmoid surgery.
I read you are reaching out to the peer support list and I was wondering if I could do the same.
Any hint which could help?
Alberta
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Alberta, you've had quite a run with radiosurgery, shunt and open surgery. Back in 2010 when you were diagnosed, what were your symptoms. How is your HB4 going?
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You are right it was quite a run. In 2010 I had a sudden hearing loss and after a TAC I had the diagnosis.
Thank you for asking about my HB4.
The real issue is synkinesis and I will try to explain why:
First to avoid synkinesis while I am eating I chew on the other side. This could cause a jaw malalignment so eating very slow is the best way to cope with the problem.
Second issue is speaking.
I try to speak moving my lips as little as possible so to keep my face less involved.
The best exercises I found for synkinesis are on facialpalsy uk for their self-help videos.
Ptosis is an other issue. The last hint I read about it is to rub very gently the upper lid so to move the old epithelial cells. I use a sterilized gauze but not every day.
Any other tips?
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Thank you so much for mentioning Facial Palsy UK - they have very informative videos. Now I understand better why we are told to wait following surgery before getting treatment or exercise for facial nerve issues. I've started the massage, and learned alternate way to tape my eye at night & (even though my paralysis is pretty mild compared to many) feel so much better!
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I joined the hydrocephalus association facebook private page. It has been most helpful. I found this on the HA website. after emailing a person on ANA peer support list.At 9 weeks I am almost back to myself! The first 8 weeks were challenging and very difficult. Would reccomend this to anyone with a shunt.
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Has anyone had their neurosurgeon suggest having a CT with contrast instead of an MRI with contrast for follow up studies? Is a CT an acceptable means of following the acoustic neuroma?
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From my research an MRI without contrast is adequate for follow up. That's what I use to monitor progress on growth (none for 3 years now without treatment) A CT uses ionizing radiation (like x-rays) and contrast agents are controversial on their health impact.
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My NS suggested that a CT with contrast vs an MRI could be an acceptable means of follow up for my 2.1 mm AN. I I was treated with GK. I have a VP shunt now after a complication leading to hydrocephalus. Each time I have an MRI my shunt will need to be checked for proper pressure setting. It is a little scary to have this each time I have an MRI. Would that tumor be followed as well with the CT with contrast?