Author Topic: Medications following GK surgery  (Read 2272 times)

keepingthefaith

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Medications following GK surgery
« on: November 08, 2010, 06:42:04 am »
Yesterday we attended our local ANA support group meeting.  As usual it was very informative and a positive experience as we always gain some new ideas from others. 

The first new tidbit was the use of a drug called Avastin now being recommended by a well known neurosurgeon after having GK. 

Second was the over the counter med called melatonin (3mg) which some attendees agreed helped with sleep and tinnitis.

Have any of you tried either of these meds and if so, sure would appreciate your comments.  I am 14 months post GK surgery and thought before I start trying either or both of these I would ask the Board for their medication experiences post surgery.


Cheryl R

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Re: Medications following GK surgery
« Reply #1 on: November 08, 2010, 07:48:31 am »
Avastin is an cancer drug and has been on trials for NF2 patients and had to meet a certain criteria to even get it.    It helps the hearing in some who have took it.        Interesting that it would used for past GK.          I have not done any checking into it lately that it is being used now by who ever wants to prescribe it.        Interesting.                       Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

jerseygirl

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Re: Medications following GK surgery
« Reply #2 on: November 08, 2010, 09:14:42 am »
Hi,

I understand why Avastin is being tried but melatonin? And why 3mg, not smaller or larger dosage? I take melatonin for years now but no larger than 1mg. A dosage of 3mg will make me sleep not only at night but during the day as well. So, I am curious for the rationale of recommending the medication at this level?
 
     Eve
Right side AN (6x3x3 cm) removed in 1988 by Drs. Benjamin & Cohen at NYU (16 hrs); nerves involved III - XII.
Regrowth at the brainstem 2.5 cm removed by Dr.Shahinian in 4 hrs at SBI (hopefully, this time forever); nerves involved IV - X with VIII missing. No facial or swallowing issues.

keepingthefaith

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Re: Medications following GK surgery
« Reply #3 on: November 08, 2010, 10:10:31 am »
Thanks for your response.  Can't answer your questions as to why 3mg, but that is what was discussed and yes, some people did say it made them sleepy but others said it really helped with their tinnitis.  That is why I was hoping for responses like yours and others to clarify whether melatonin was helpful or not.  One thing I have learned from our support group members is that medications often affect everyone in different ways and what is good for one may not be good for another.

Lizard

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Re: Medications following GK surgery
« Reply #4 on: November 08, 2010, 12:20:21 pm »
Interesting note on melatonin, my headache specialist recommended trying it for my headaches as an OTC remedy, but there is not a lot of evidence or support about side affects and whatnot because it is an herbal remedy and is not regulated by the FDA.  She was talking up to 75mg....crazy right?  How would I function, what affects would it have on my body etc...too many unknowns so I never tried it.  Haven't' heard anything about tinnitus relief.  My Mom also uses it as an alternative to a sleeping pill, but very small dosage.

Let me know what you discover.
Liz
Left AN 2.5CM,retrosigmoid 11/2008, second surgery to repair CSF leak. 
Headaches began immediately.  Dr. Ducic occipital nerve resection, December 2011!!!!!

"When you come to the end of your rope, tie a knot and hang on"
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