Author Topic: Around 3.5 to 4 months after GK...  (Read 838 times)

buzneg

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Around 3.5 to 4 months after GK...
« on: October 22, 2018, 03:09:56 pm »
Is it "normal" for the headaches to return around 3 to 4 months after GK?  Is that when the AN tumor is supposed to be dying off and can result in a new episode of feeling crappy for a while?  That's what one radiation oncologist mentioned to me a long time ago.  I think he was right.

Anybody else go through this 3 month thing?
March 1, 2018 - Hearing loss left side, acute vertigo
March 2, 2018 - MRI show 13 x 7 mm AN (probably growing)
May 2018 - ENT/audiologist indicate 100% hearing loss on left side is permanent
June 29, 2018 -  GK at Wake Forest in NC
Dec.2018 -  follow-up MRI shows zero growth

LakeErie

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Re: Around 3.5 to 4 months after GK...
« Reply #1 on: October 23, 2018, 03:51:27 pm »
I had headaches behind my ear from day 3 after GK, especially early am, from 4 am on. I was told to take ibuprofen at bedtime for three weeks and it did stop the headaches, only to return when pain reliever was stopped. I went back on the pain reliever for 2 - 3 weeks with continuing headaches for 3 months. Eventually, after 3 months, facial paralysis set in and I went on steroids. Once on steroids the headaches stopped completely. MRI showed central necrosis of the tumor, a 1% chance with GK, which is a fluid generator. The edema (fluid build up) swelled both the tumor and brain adjacent to the tumor which impinged my facial nerve. The steroids quieted the fluid build up. Just had my 2nd year MRI following GK yesterday and my tumor is several millimeters smaller and brain stem is normal (no fluid.) Neurosurgeon stated 90% chance the GK has stopped the growth. I still have mild facial weakness and synkinesis though others notice nothing. I have regained full lid coverage of my eye and can hold liquids in my mouth. Massage and stretching help the tightness in my face from synkinesis if done regularly.

Our headache patterns differ, and my central necrosis is a rare adverse event, but be aware of the possibility of a potential problem with continued headaches, especially if in the area of the tumor.
4.7 cm x 3.6 cm x 3.2 cm vestibular schwannoma
Simplified retrosigmoid @ Cleveland Clinic 10/06/2011
Rt SSD, numbness, vocal cord and swallowing problems
Vocal cord and swallowing normalized at 16 months. Numbness persists.
Regrowth 09/19/2016
GK 10/12/2016 Cleveland Clinic
facial weakness Jan 2017

buzneg

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Re: Around 3.5 to 4 months after GK...
« Reply #2 on: October 25, 2018, 04:25:55 pm »
I had headaches behind my ear from day 3 after GK, especially early am, from 4 am on. I was told to take ibuprofen at bedtime for three weeks and it did stop the headaches, only to return when pain reliever was stopped. I went back on the pain reliever for 2 - 3 weeks with continuing headaches for 3 months. Eventually, after 3 months, facial paralysis set in and I went on steroids. Once on steroids the headaches stopped completely. MRI showed central necrosis of the tumor, a 1% chance with GK, which is a fluid generator. The edema (fluid build up) swelled both the tumor and brain adjacent to the tumor which impinged my facial nerve. The steroids quieted the fluid build up. Just had my 2nd year MRI following GK yesterday and my tumor is several millimeters smaller and brain stem is normal (no fluid.) Neurosurgeon stated 90% chance the GK has stopped the growth. I still have mild facial weakness and synkinesis though others notice nothing. I have regained full lid coverage of my eye and can hold liquids in my mouth. Massage and stretching help the tightness in my face from synkinesis if done regularly.

Our headache patterns differ, and my central necrosis is a rare adverse event, but be aware of the possibility of a potential problem with continued headaches, especially if in the area of the tumor.

Wow.  You've had it way worse than me. 

In general and hypothetical only...  and I haven't done this since a Pink Floyd concert in the 1980's...
Would "mary jane" possibly give relief to post-GK neuroma headaches?  I don't think Tennessee has medicinal yet, so I would have to go rogue to get some.  ::)
March 1, 2018 - Hearing loss left side, acute vertigo
March 2, 2018 - MRI show 13 x 7 mm AN (probably growing)
May 2018 - ENT/audiologist indicate 100% hearing loss on left side is permanent
June 29, 2018 -  GK at Wake Forest in NC
Dec.2018 -  follow-up MRI shows zero growth

gary.s

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Re: Around 3.5 to 4 months after GK...
« Reply #3 on: January 21, 2019, 04:44:54 pm »
I had Cyber Knife about 9 months ago and recovery is like a roller coaster ride. My head aches persisted for several months afterwards along with dizziness and tiredness. I still get headaches from time to time that may go on for several days then disappear. Tylenol works for me along with rest. Relaxation techniques can really alleviate some of the stress most of us have dealing with a tumor. I like to hike and ride horses, some folks have found meditation and yoga to really help. Have to find what works for you and know that you will be okay. Take care,

Gary
Mild symptoms July 2014
MRI 1/3/2017 rt side AN 1.40 cm x 1.59 cm
MRI 3/5/2018 AN 1.70 cm x 2.07 cm
CK April 16-20, 2018 at Barrow Neurological Institute, Phoenix, AZ
9/2018 hearing aid Phonak Audeo B and Phonak Cros B
MRI 11/30/2018 AN 1.62 cm x 1.83 cm

kestes

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Re: Around 3.5 to 4 months after GK...
« Reply #4 on: January 22, 2019, 09:26:46 am »
I had GK on Nov 2 so just about to hit that 3 month mark.  I have not had headaches at all except for right after and I think that was more so due to the head frame and pressure and Tylenol helped.  I had very slight eye twitching for a week or two after also and that has disappeared.  I had some hearing loss, tinnitus,  fatigue and brain fog before and I have the same amount after.  Will be following this post and curious to see others responses.  I do know they said some side effects start 4-6 months after......
12mm diagnosed Feb 2018
14mm at 6 mo MRI Aug 2018
tinnitus, high pitch hearing loss, balance issues
GK at UVA Dr Jason Sheehan Nov 2, 2018
Next MRI May 2018
Columbia, South Carolina

 


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