Recent Posts

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Post-Treatment / Extra sleep during GK recovery period
« Last post by buzneg on October 14, 2018, 11:39:48 pm »
How important do you guys feel getting extra sleep during GK recovery is? 

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Radiation / Radiosurgery / Re: Surgery and then radiation
« Last post by Sanderson on October 14, 2018, 06:42:48 pm »
I have the same concerns. Should I be seeing a neurologist and my neurosurgeon? My eye closes but I can’t blink or smile. Will radiation seal the deal in my ability to improve with my facial paralysis? I feel stuck!

I have asked this question before: Are there recovery stories or just getting used to circumstances?


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Post-Treatment / Re: Travel after Surgery
« Last post by Rhcdad on October 14, 2018, 07:25:19 am »
I flew back from California to Albany NY about 7-10 days after my surgery, it was a nightmare but from a health concern, I had no ill effects from the flight. Just not enjoyable.
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Radiation / Radiosurgery / Re: Regrowth after Translab
« Last post by JLR on October 13, 2018, 08:05:19 pm »
HI Colleen, I believe you and I had AN surgery around the same time. I'm almost 2 years post op. I had regrowth and radiation was recommended but thankfully the tumor is status quo. How many sessions will you have. Are there any side effects. I have facial paralysis and fear the radiation would make it worse. I'm due for another MRI and hoping all is well. Good luck to you. Please keep me posted on the radiation and how you are feeling.  Regards, Joan
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Radiation / Radiosurgery / Re: Surgery and then radiation
« Last post by JLR on October 13, 2018, 07:56:19 pm »
Hi all, thanks so much for your responses.  Nov 1 will be2 years post op.  The regrowth has remained stable. Have MRI every 4 months. I do still have facial issues. Eye still dry but can now close easily but I do have synkensis. Had therapy, Accupuncture, more facial excercises etc none have worked. I think it's time that has to heal. My forehead was numb and now I do have feelings there but at surgery site remains numb. Re additional radiation for regrowth my biggest fear is that my facial paralysis would get worse. And any progress would go back to square one!  Any direction about this.  Good luck with your radiation. Please keep me posted. I wish all continued good health. Joan
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Microsurgical Options / Re: completed microsurgery on 9/11/18 by Drs. Friedman & Schwartz
« Last post by JLR on October 13, 2018, 07:46:42 pm »
Thank you all for your responses. I wish you both a very successful recovery.
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AN Issues / Re: HRT and Tumor Growth? (For women here)
« Last post by CHD63 on October 13, 2018, 09:12:49 am »
For what it is worth, I have been on HRT for many years with no tumor regrowth since my 2011 surgical removal of my AN.

Clarice
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For those in the 'watch and wait' status / Re: Radiosurgery Consults
« Last post by rupert on October 12, 2018, 07:54:21 pm »
If you're interested in Dr. Lundsford at UPMC you can call 412-647-3685 and get requested information.  That's the latest number I know of.
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Inquiries / Re: Second Opinion
« Last post by janerioux on October 12, 2018, 06:04:23 pm »
I am in a similar situation as Nic -Ruby.  I am still waiting to hear from the first doctor I saw who said to observe.  I sent my 2nd MRI to them August 2 and they haven't called me back.  I have been reading and listening to webinars and it is so hard to make a choice.  I will have to travel out of State where ever I choose but it's where should I go.  I know my hearing is worse and waiting for my second hearing test and plan on sending my information out.  If I have to choose between hearing loss and facial paralysis I  would prefer hearing loss.  So hard to make a decision! ???
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For those in the 'watch and wait' status / Re: Radiosurgery Consults
« Last post by Blw on October 12, 2018, 03:26:56 pm »
If you send MRI, they will tell you whether or not you are a candidate for radiation. There can be many reasons why you would be excluded. But most of those guys are good  and they'll answer promptly and thoroughly. I consulted with Chang, Lunsford, and Sheehan, visited all except Lunsford.
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