My wife had terrible pains 6 months after the surgery. It was unbearable, moving from her neck, to her head and around the eyes. Neurologist didn't know what to do either. BUT we decided to use towels with HOT WATER and the pain was at least finally under control! Then we started visiting a physiotherapist and he diagnoses that the paralysis andsurgery damaged the neck muscles. These muscles compressed nerves that cause the pain. It's been 1 year, there is still pain, but improving!HotTowel
Good to see you improved! I had an acoustic neuroma partially removed in January of 2011. I know what you have gone through and find your videos encouraging. Good luck!
I had Retrosigmoid in early April of this year.I have the usual hearing loss,dizziness/vertigo(my face is OK) but now the worst part is the excruciating neck/head pain.I tend to avoid pharmaceuticals but I'll have to try the one you mentioned.
Hi Jhonny. Do you remember? I'm Carolina from Chile and i fell happy for see your advance. I removed 3 year ago acoustic neuroma 3 cm diameter. I feel the same feeling in my neck, but with the time it will become less. I Have a great family and friend for help me. Now I work normally and life goes on.
Thanks for sharing. I had a 3.2cm R-sided AN removed 3/08 and have also had a nasty headache since then. My surgeon said the same "the pain doesn't happen" and I had one (of many) pain specialist say that post-craniotomy pain resolves in 3-5 years (spontaneously) for 80% of people with chronic daily headache. They also said the paralysis would not improve after 1 year, but it definitely continues to improve 3 years out. It's small but wonderful improvement! Have you tried Botox injections?
Right on,you're looking great.I'm glad your neck is getting better.Mine is pretty sore two days out but It's actually been worse.I'm not on any pain meds at the moment.Thanks again for the video the support we can give each other is great.I also have great friends & family around.I don't know what I'd do without them.
please tell me where you went for sugery? no one ever seems to say where they went for sugery. i'm waiting for an appt. at the mayo clinic...hopefully it will be in the next 2-3 weeks.
I have had surgery for AN in 1997, reoccurred in 2006 and had Gamma knife, more problems in 2010 and another surgery. I have seen it all. I have some suggestions of who you might contact regarding current research and experts on AN. Not enough room to tell here. You can e-mail me at dmickler1@yahoo.com. Hang in there. I know how depressive this can be and I am still dealing with some of that.
wow!! I have watched all of your videos and I definitly see great improvement. I also had an acoustic neuroma removed on march 1st 2010, then had to have a second surgery because I had an allergic reaction to the filler they put in my skull... Because of the that, my doctor seems to think my facial paralysis is permanent. I am a 29 yr old single female and this experience has completely destroyed my self esteem. watching your progress has given me hope. hope you continue to get better!!!
@MerrySexton424 I had 4 surgeries for my nueroma, its still hard for me sometimes but reading your positive attitude is really great! my face is not back to normal yet and its been over a year, but slowly its getting there and my paralysis is permanant too! nothing is permanant.
My wife had terrible pains 6 months after the surgery. It was unbearable, moving from her neck, to her head and around the eyes. Neurologist didn't know what to do either. BUT we decided to use towels with HOT WATER and the pain was at least finally under control! Then we started visiting a physiotherapist and he diagnoses that the paralysis andsurgery damaged the neck muscles. These muscles compressed nerves that cause the pain. It's been 1 year, there is still pain, but improving!HotTowel
brasukart 3 months ago
Good to see you improved! I had an acoustic neuroma partially removed in January of 2011. I know what you have gone through and find your videos encouraging. Good luck!
darnett 4 months ago
I had Retrosigmoid in early April of this year.I have the usual hearing loss,dizziness/vertigo(my face is OK) but now the worst part is the excruciating neck/head pain.I tend to avoid pharmaceuticals but I'll have to try the one you mentioned.
Simp44 5 months ago
Hi Jhonny. Do you remember? I'm Carolina from Chile and i fell happy for see your advance. I removed 3 year ago acoustic neuroma 3 cm diameter. I feel the same feeling in my neck, but with the time it will become less. I Have a great family and friend for help me. Now I work normally and life goes on.
caroantonie 6 months ago
I may have one and I am seventeen, how traumatic is it?
Seracinfinity 7 months ago
Thanks for sharing. I had a 3.2cm R-sided AN removed 3/08 and have also had a nasty headache since then. My surgeon said the same "the pain doesn't happen" and I had one (of many) pain specialist say that post-craniotomy pain resolves in 3-5 years (spontaneously) for 80% of people with chronic daily headache. They also said the paralysis would not improve after 1 year, but it definitely continues to improve 3 years out. It's small but wonderful improvement! Have you tried Botox injections?
georgiamei7 10 months ago
Right on,you're looking great.I'm glad your neck is getting better.Mine is pretty sore two days out but It's actually been worse.I'm not on any pain meds at the moment.Thanks again for the video the support we can give each other is great.I also have great friends & family around.I don't know what I'd do without them.
Simp44 10 months ago
I'm so glad you're able to kiss your wife again :)
Thank you for sharing your story, my co-worker has just been diagnosed with a 4cm
AN and I'm just trying to understand more of what he's dealing with
dianalavona 1 year ago
please tell me where you went for sugery? no one ever seems to say where they went for sugery. i'm waiting for an appt. at the mayo clinic...hopefully it will be in the next 2-3 weeks.
duckft87 1 year ago
I have had surgery for AN in 1997, reoccurred in 2006 and had Gamma knife, more problems in 2010 and another surgery. I have seen it all. I have some suggestions of who you might contact regarding current research and experts on AN. Not enough room to tell here. You can e-mail me at dmickler1@yahoo.com. Hang in there. I know how depressive this can be and I am still dealing with some of that.
deborah2winterpark 1 year ago
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They never told me about the excruciating pain either! I still have headaches. You look great here, Johnnie! Thank you for sharing your AN journey!
kelli1000 1 year ago
They never told me about the excruciating pain either! I still have headaches. You look great here, Johnnie! Thank you for the videos!
kelli1000 1 year ago
You look like you feel much better! I had a 2.4 removed 081409. I have had my own issues. Just wanted to congratulate you on the turn around.
Jmcfaddin3 1 year ago
wow!! I have watched all of your videos and I definitly see great improvement. I also had an acoustic neuroma removed on march 1st 2010, then had to have a second surgery because I had an allergic reaction to the filler they put in my skull... Because of the that, my doctor seems to think my facial paralysis is permanent. I am a 29 yr old single female and this experience has completely destroyed my self esteem. watching your progress has given me hope. hope you continue to get better!!!
MerrySexton424 1 year ago
@MerrySexton424 I had 4 surgeries for my nueroma, its still hard for me sometimes but reading your positive attitude is really great! my face is not back to normal yet and its been over a year, but slowly its getting there and my paralysis is permanant too! nothing is permanant.
jett330 1 year ago
You definitly look better! Keep it up
Zekee27 1 year ago