Recent Posts

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91
Radiation / Radiosurgery / Re: Cyber Knife and CBD Oil
« Last post by Gtmochi on April 12, 2018, 07:10:52 pm »
Hi Gary,

I start my treatment on 4/23!

The same question is on my mind - I hope someone can elucidate. If not, I'll ask the doctors when I go for treatment and report back.

Prompted by my anxiety at diagnosis (which resulted in not sleeping well) I began taking CBD (as a tincture) for about the last month. Boy - it doesn't make me sleepy, but when I fall asleep I am 100% asleep. I no longer wake up with my brow furrowed or to scour the internet for information about ANs  ;).  Additionally, I've noticed that it also seems to help me overall - the slight face tingling has reduced quite a bit (although it was not so bad before, and may have been exacerbated due to lack of sleep). Sleeping well will be really important to healing, and I understand that CBD is good for inflammation. It makes sense that it might help in some way..even just as an aid to restful zzzzs.

Somewhat related, I have been taking a supplement called Green Vibrance. I read that Sulforaphane miiiiggghhht hinder AN growth (https://www.researchgate.net/publication/309657837_Sulforaphane_a_natural_component_of_broccoli_inhibits_vestibular_schwannoma_growth_in_vitro_and_in_vivo _  ) which was enough for me to start taking some in the form of Green Vibrance. It's gots loads of Sulforaphane (among other things). After taking it, I for sure feel brighter...despite its gnarly taste (I drink it mixed in water with a cranberry juice chaser). It has all sorts of good-for-you ingredients so I figure at the very least I am supporting my health.

Good luck with your treatment!
92
Radiation / Radiosurgery / Cyber Knife and CBD Oil
« Last post by gary.s on April 12, 2018, 12:38:10 pm »
I will begin my Cyber Knife treatment on Monday, April 16. Five sessions next week at Barrow Neurological Institute in Phoenix, Arizona. Nervous to say the least, but solid with my decision.

I have read that CBD oil, which is extracted from hemp plants, can help with a variety of medical issues. Has anyone tried using CBD oil to help with the recovery from radiation. Just wondering if this is worth a try.
93
Post-Treatment / Re: CSF Leak?
« Last post by gunns on April 11, 2018, 09:55:12 pm »
Thanks for the replies. Now, once again, I’m back in the wait and see mode.
94
Facial Issues / Re: Facial Paralysis after GK ???
« Last post by LakeErie on April 10, 2018, 01:01:05 pm »
Just to be clear, my incomplete eyelid closure is not just at night, nor is it complete. My eye doctor estimates it 1 mm, which is not enough to cause exposure keratitis which I quickly developed when the lid would not stay closed. I could close my eye but it would not stay closed. Lagophthalmous is used to denote incomplete lid closure. If it did become a problem I am advised simple lid surgery can correct the problem as it is so minor at 1 or 2 mm's., no gold or platinum weight is necessary.
UPMC ( Univ of  Pittsburgh Medical Center ) has a Facial Paralysis Center that also treats synkinesis. UPMC installed the first GK in the US and has treated the most AN's so it is familiar with complications from GK treatment. It is a short drive for me so it is available if I need it.
95
Facial Issues / Re: Facial Paralysis after GK ???
« Last post by alicia on April 10, 2018, 12:41:00 pm »
You taught me a new word...lagophthalmous, not a bad compromise if your cornea stays wet enough and you can't tell its open when you sleep!
I was not able to tell anything happened with the methylpredisolone either time I was on it. good or bad. If I have another episode in which I need steroids, I may push for something stronger.
I had my Gamma in Omaha, NE. I was diagnosed here by these doctors but knew they didn't have much experience with large tumors which led me to California for surgery. But 8 years later, CA is not covered by my insurance so I stayed here.
Thank you for all the synkinesis info. I try not to force healing at the beginning of things and was hoping you agreed. I am glad you've found opposing movement to off set the miswired ones! And for the speech clinic to give you the possibility to get to HB I or normal is music to my ear  ;)
96
Facial Issues / Re: Facial Paralysis after GK ???
« Last post by LakeErie on April 10, 2018, 12:19:46 pm »
I forgot to mention I also had a punctual plug which was a great help to me. With lid closure mine was removed. I still have some small lagophthalmous, but no exposure problems to my  cornea as a result.
I am surprised to hear that the Medrol pack is the "best." The methylprednisone had no effect for me so I was on decadron for a month, decadron rule of thumb is that it is at least 6 x's as strong per mg. But maybe your more minor swelling accounts your doctor's decision.
And no, I did not do type of any therapy. Synkinesis can result from the lesion on the facial nerve from the swelling when it heals. The new neurons can mis-wire, connect to the wrong places. In my case it is called jaw - wink syndrome. When I open my jaw to yawn for example my eye would close. Closing my eye tightly would move my chin. Pursing my lips or chewing would make my eye squint. Another feature of synkinesis is tightness of the muscles. My right eye is noticeably smaller than the normal left one. I believe a rule of thumb is to not attempt therapy for a year as it can make things worse. I waited until today which is one year since I first started to see movement back in the corner of my mouth.
I have learned that, at least in my own case, I can minimize the mass movement in my face by slowing down the motion that produces the incorrect other movement. If I chew slower, my eye does not squint as much. If I close my eye slowly, my chin movement is less perceptible. The other technique I discovered is relaxation. If I concentrate on relaxing the area just under my eye, I can yawn without my eye closing. It has taken months of practice to slow down my facial and jaw movements and to make a habit of relaxing my jaw and eye, but it does work for me and hope it will continue to improve. The Cleveland Clinic speech therapy department has given me exercises to improve muscle tone and strength now that I am one year since recovery began. They also recommended stretching and massage techniques and to try to get back to HB Grade I, or normal.
Where did you have your GK procedure done?
97
Facial Issues / Re: My Smile
« Last post by Tod on April 10, 2018, 12:14:41 pm »
Really Awesome!! Congrats!

-tod
98
Facial Issues / Re: Facial Paralysis after GK ???
« Last post by alicia on April 10, 2018, 11:10:22 am »
LakeErie, I remember you from commenting on a "sliver" post of mine a few years back. When we all still believed they would die! Thank you for your details. So within 6 months, your eye was closing...Gives me something to look forward to!

I would say over 6 week period (feb-mid march) I had 3 episodes of tightness and spasms and each time leaving my face a bit weaker (eye, mouth, nose). I am at a III'ish level of weakness now. I did see an ophthalmologist immediately as eye pain was rapid and intolerable. Had a punctal plug inserted. Used overnight ointment all day. Plug fell out last week, but am doing ok with an eye gel during the day and ointment at night. Saw my neurosurgeon within a week and although he "had never seen this" (ugh) he put me on a 6 day methylprednisolone steroid when I said steroids were needed. When the last episode happened, I called and was put on another round. Just 6 day. I asked if there was something stronger, he said this was the best.

Also perplexing, is at the 2 week point of weakness (2mo post GK) I had an MRI with only slight, very slight, swelling. That's why I think he mentioned possibility of direct nerve damage.  Synkinesis is the next hurdle I hope to avoid if possible. Did you do any "therapy" that could have brought that on or do we think it can just happen?
99
Post-Treatment / Re: CSF Leak?
« Last post by tarheelEH on April 09, 2018, 07:12:02 pm »
copy info
Vasomotor rhinitis occurs when the blood vessels inside your nose dilate, or expand. Dilation of the vessels in the nose produces swelling and can cause congestion. Mucus may also drain from the nose.
It’s not known what causes the blood vessels in the nose to dilate. Some common triggers that may produce this reaction include:
irritants in the environment such as perfumes, odors, smog, or secondhand smoke
changes in the weather, particularly dry weather
viral infections such as those associated with a cold or flu
hot or spicy foods or drinks
medications such as aspirin (Bayer), ibuprofen (Advil, Motrin), or beta-blockers (Propranolol, Metoprolol, Atenolol), certain sedatives, antidepressants, oral contraceptives, drugs used to treat erectile dysfunction
overuse of nasal decongestant sprays
hypothyroidism
stress

Hope this help a little.
100
Physicians / Re: OHSU for radiation?
« Last post by tdlight on April 09, 2018, 07:08:52 pm »
That IS good news!  For watch and wait do you know if there is ever a length of time of no growth where one would be out of the woods and the tumor is considered stable?  17 months seems like a very good sign; keep it up!

I went with Cyberknife with Chang and am doing great two years post.  Slight hearing loss but good otherwise.  You can read every detail here if interested (maybe save it for an attack of insomnia):

https://www.anausa.org/smf/index.php?topic=22598.0

Take care - Terry
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