1
Post-Treatment / Re: Rapid Regrowth
« Last post by chrisabbott on Today at 11:10:48 am »Thanks Jami,
Glad to hear you have promising results at this time.
Glad to hear you have promising results at this time.
News:
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2
AN Community / Re: A Hope for the Future
« Last post by Maria Odete on Today at 10:36:07 am »Dear Jami,
You are welcome. ((((Hugs))))
Maria Odete
You are welcome. ((((Hugs))))
Maria Odete
3
Eye Issues / Re: Post trans lab surgery pain in my eye
« Last post by jami on Today at 10:05:41 am »HI,
I still get a sandy feeling in my right eye at times, when tired or stressed. My non-medical assessment is that the nerve is somehow 'inflamed' (when tired, as well, if i suck on a straw the upper eyelid twitches at bit too).
that said, it might be a good idea to see a ophthalmologist, or schedule your next opthalmology appointment early. They can see "inside" the eye to identify any issues specific to the eye.
Jami
I still get a sandy feeling in my right eye at times, when tired or stressed. My non-medical assessment is that the nerve is somehow 'inflamed' (when tired, as well, if i suck on a straw the upper eyelid twitches at bit too).
that said, it might be a good idea to see a ophthalmologist, or schedule your next opthalmology appointment early. They can see "inside" the eye to identify any issues specific to the eye.
Jami
4
Microsurgical Options / Re: Having surgery on Dec 12th and freaking out a bit.
« Last post by jami on Today at 09:59:32 am »Many well wishes for your surgery!
5
AN Community / Re: A Hope for the Future
« Last post by jami on Today at 09:57:57 am »Thanks for the encouragements, maria!
6
Post-Treatment / Re: Rapid Regrowth
« Last post by jami on Today at 09:57:20 am »hi Chris,
Sorry to hear about this. At my 6 months, the growth was small but it was there:
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
They told me that the tumor can 'puff' a bit initially (?) but strongly recommended action. I was shocked, as well, but not too surprised because i was experiencing increased facial numbness again. I ended up doing Cyberknife - after a consult with the neurosurgeon, the ENT surgeon (I always forget the formal term for that guy) and then the radiation oncology specialist.
The Cyberknife treatment was about 6 weeks after the 6 month MRI, and amazingly easy (although i took the week off work). I had my 6 month post CK MRI at the end of October, and the tumor had actually shrunk a tiny tiny tiny bit, it was SUCH a relief.
I am now waiting 12 months for my next MRI (per my request of the medical team, with a promise to call them if i get new symptoms).
Jami
Sorry to hear about this. At my 6 months, the growth was small but it was there:
8/15/18: 1.0 x 0.4 x 0.4 cm
3/04/19: 1.0 x 0.8 x 0.5 cm
They told me that the tumor can 'puff' a bit initially (?) but strongly recommended action. I was shocked, as well, but not too surprised because i was experiencing increased facial numbness again. I ended up doing Cyberknife - after a consult with the neurosurgeon, the ENT surgeon (I always forget the formal term for that guy) and then the radiation oncology specialist.
The Cyberknife treatment was about 6 weeks after the 6 month MRI, and amazingly easy (although i took the week off work). I had my 6 month post CK MRI at the end of October, and the tumor had actually shrunk a tiny tiny tiny bit, it was SUCH a relief.
I am now waiting 12 months for my next MRI (per my request of the medical team, with a promise to call them if i get new symptoms).
Jami
7
Radiation / Radiosurgery / Hi and question about side effects.
« Last post by chefcrsh on Today at 09:37:09 am »So I was diagnosed with an 8mm VS this past summer after about a year of progressing single sided hearing loss. Second MRI coming December 23 (merry Christmas) and am currently leaning heavily towards linac surgery at Mayo Phoenix.
The medical team has pretty much hand waved away any potential side effects of this saying things like many people do the treatment on their lunch break and go right back to work. This is a key element of my decision process as it would be hard to arrange enough time for wet surgery and recovery, while still affording life.
But recently I’ve seen some patients reporting, mild to medium side effects, and loss of work. So those who have been through the process what was your experience on side effects and what life changes did they bring?
The medical team has pretty much hand waved away any potential side effects of this saying things like many people do the treatment on their lunch break and go right back to work. This is a key element of my decision process as it would be hard to arrange enough time for wet surgery and recovery, while still affording life.
But recently I’ve seen some patients reporting, mild to medium side effects, and loss of work. So those who have been through the process what was your experience on side effects and what life changes did they bring?
8
Headaches / Re: Medicines for headache
« Last post by gbkim86 on Today at 04:00:02 am »Thanks for your answers Stephanie, Jami, and Harbormom. I did read your replies although I did not respond.
I tried several things but end up with taking Naproxen twice daily and Tyrenol arthritis together. Naproxen worked much better than Advil, in my case. I think changing matress also helped. It seems like sudaped also help little bit, but not sure it really does.
Since taking Naproxen, headache was well controlled, although I sometimes had to take Norco when headache went bad.
I haven't tried nerve block yet, but probably should discuss with doctor about it, because now I'm having stomach pain when I take Naproxen. It is pretty severe, and I'm a bit nervous if this is the side effect of Naproxen. I think I can't take Naproxen anymore. I stopped Naproxen a few days ago, but Tyrenol couldn't handle it alone. I can't work now due to the headache. I really don't know what to do.
I hope all you are getting better now.
Sincerely,
GB
I tried several things but end up with taking Naproxen twice daily and Tyrenol arthritis together. Naproxen worked much better than Advil, in my case. I think changing matress also helped. It seems like sudaped also help little bit, but not sure it really does.
Since taking Naproxen, headache was well controlled, although I sometimes had to take Norco when headache went bad.
I haven't tried nerve block yet, but probably should discuss with doctor about it, because now I'm having stomach pain when I take Naproxen. It is pretty severe, and I'm a bit nervous if this is the side effect of Naproxen. I think I can't take Naproxen anymore. I stopped Naproxen a few days ago, but Tyrenol couldn't handle it alone. I can't work now due to the headache. I really don't know what to do.
I hope all you are getting better now.
Sincerely,
GB
9
Post-Treatment / Rapid Regrowth
« Last post by chrisabbott on December 13, 2019, 01:12:02 pm »Yesterday I had an MRI - 6 months post translab surgery. They left some tumor behind because it was sticky and lying along my facial nerve. The report shows increase of 8 mm, 2 mm, and 7 mm in the size of the tumor compared to the post op MRI. I didn't think they could grow that fast. My appointment with my neurosurgeon is Tuesday (17th Dec) and I emailed him to be sure he knows I've seen the report and I'm shocked.
Has anyone else had a rapid regrowth of their tumor after surgery? I'd like to know how you addressed this situation and how you're doing?
Thanks everyone.
Has anyone else had a rapid regrowth of their tumor after surgery? I'd like to know how you addressed this situation and how you're doing?
Thanks everyone.
10
AN Community / Re: A Hope for the Future
« Last post by Maria Odete on December 12, 2019, 11:07:10 pm »Hi everyone,
My apologies. Here is 1 Corinthians 2:9 how it should be read: 1 Corinthians 2:9:" Eye has not seen, nor ear heard, neither have entered into the mind of man the things which Yahweh has prepared for those who love Him."- The Holy Scriptures
Maria Odete
My apologies. Here is 1 Corinthians 2:9 how it should be read: 1 Corinthians 2:9:" Eye has not seen, nor ear heard, neither have entered into the mind of man the things which Yahweh has prepared for those who love Him."- The Holy Scriptures
Maria Odete