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Survey about Neuroma to help me cope
rad81:
Hey all, I just got diagnosed with a 10.5mm x 6.5mm Neuroma....and am obviously a bit nervous about it but wanted your honest opinions on my questions below so I know what I'm in for, I would obviously appreciate your full honestly, and feel this would help the community as a whole so please try and keep it in a similar format.
1) How big was your neuroma compared to mine? Is mine considered large?
2) Did you do radio cyberknife surgery or get it taken out?
3) If radio surgery how long did it take? Were you under the whole time? What was recovery like? Pain level on a scale of 1/10?
4) If regular surgery what kind was it? Where was it done and with which doctor (I am in the NJ/NY/Philly area)? What was the pain level 0-48 hours after the surgery? How about 2-7 days after? 1-4 weeks after?
5) What side effects did you have during your recovery process and for how long?
6) How old were you when you had the surgery done?
7) Did it reoccur?
8) Any benefits of cyberknife vs regular?
9) Anything else I should know?
10) Overall, how bad was it for you?
Thanks for all your responses in advance.
areles:
hi, rad81. i know how scary this is, so i'll jump in with some answers to your questions from my son's POV. not sure how useful they'll be to you, and i'm nowhere near the expert some folks here are, so take my responses with a grain of salt. :) but, if nothing else, perhaps it will make you feel less alone:
1) How big was your neuroma compared to mine? Is mine considered large?
my son's was 2.8cm. yours is considered small on the scale, to my understanding. perhaps medium, depending upon who's looking, but definitely not 'large'.
2) Did you do radio cyberknife surgery or get it taken out?
unfortunately, no radiation, so i can't weigh in here. my son's was too large and he was too young for radiation to be an option.
3) If radio surgery how long did it take? Were you under the whole time? What was recovery like? Pain level on a scale of 1/10?
see #2
4) If regular surgery what kind was it? Where was it done and with which doctor (I am in the NJ/NY/Philly area)? What was the pain level 0-48 hours after the surgery? How about 2-7 days after? 1-4 weeks after?
my son had translab at house, with drs. schwartz and miller. he reported pain between 9 and 10 for the first... week or so, honestly. (this was managed quite well with dialudid and norco, though, and also, even though he was reporting 9s and 10s, based on his behavior 7s and 8s seemed to be more accurate.) by 7 days he was reporting 6s and 7s. today, a month post-op, a 5 on his worst days, but generally under 3.
5) What side effects did you have during your recovery process and for how long?
we're still early, but for the most part, nikolas isn't having any 'side effects' other than transient head pain and the expected SSD as a result of translab. his balance is fine (they'd told us it would be, due to the size of the tumor and his brain's prior compensation, and that has proven true; he was standing on one leg within two hours of being discharged from the hospital, and currently you'd never know the balance nerve was severed), and he can even get around in the dark, which we expected to not be the case. he reports very slight dizziness from time to time. he can turn his head from side to side now with only very mild dizziness. he does get fatigued more easily, but that's also to be expected the first four to six weeks.
since he hasn't been very active post-op, it's hard to say what he may experience once he resumes normal activity (which to my mind is the real yardstick), but for now, side effects are at a minimum.
of note, he did develop a csf leak within three days of surgery, and had to have a second surgery four days post-op.
6) How old were you when you had the surgery done?
he was 22, a couple of months from 23 (surgery was late feb, birthday is mid-april.)
7) Did it reoccur?
time will tell. hopefully not. they did achieve total removal.
8) Any benefits of cyberknife vs regular?
see #2. :(
9) Anything else I should know?
my best advice is to educate yourself beforehand (which you're obviously doing), and after treatment, be patient. healing takes time. i'm sure i have more detailed suggestions, but i'm at a loss right now; please feel free to ask questions.
10) Overall, how bad was it for you?
answering for my son: this is hard to say. if you're looking at Life Before Knowing compared to Life After Knowing and Treatment, it sucks. if you're looking at Life After Knowing compared t Life After Treatment, i think my son would say, it wasn't as bad as he expected / feared. in some ways better - his headaches post-op, while still present, are far less intense than they were when that monster was still in there. as i write this he's upstairs giggling over a tv show. last night he hung out with his girlfriend. he's getting used to the SSD. life isn't like it was three months ago, when his biggest problem was finding time to surf between work and school, but in the end, it could be far worse than it is.
michellef08:
Happy to share my personal experience:
1. Mine was 1.4 cm. I tend to think that under 1cm is small, and anything above that is medium, so I would call yours small-ish!
2 and 3. N/A
4. I had Middle Fossa at House Ear Clinic with Dr. Schwartz and Dr. Friedman. Pain level the first 48 hours was simply a headache from the world spinning, from the cut balance nerve and I basically slept the entire time. 2-7 days after I only took the pain meds for neck pain (as the hospital bed was so uncomfortable) and slight headaches. 1-4 weeks and after I was pain-free.
5. Zero side effects from recovery, and they did preserve my hearing! Unexpected benefits from surgery: cured my motion sickness, and stopped having (what I thought were normal) headaches a few times a week.
6. I was 27, which I'm sure helped with an easy recovery
7. Surgery was only 3 years ago, but 1 year MRI was clear!
9. This is definitely a scary journey to go on, but we have all been through it! My best advice is to do enough research and meet with enough experienced treatment teams to make the decision that feels right for you. If you are on the fence, then you haven't met with the right team, or discussed the right treatment option yet. The best thing about an AN is that it is normally slow-growing, so you have enough time to do research and weigh your options, or even watch and wait.
10. Honestly, I know I'm in the minority - but my surgery gave me more benefits than harm! I am so happy to know that I no longer have a tumor in my brain, my hearing was preserved, and I didn't have a single balance or facial issue afterwards.
arizonajack:
--- Quote from: rad81 on March 23, 2016, 10:32:02 am ---1) How big was your neuroma compared to mine? Is mine considered large?
--- End quote ---
9mm x 4mm x 3mm
Yours isn't much bigger than mine and I consider mine small. Mid size generally start about 15 mm.
--- Quote from: rad81 on March 23, 2016, 10:32:02 am ---2) Did you do radio cyberknife surgery or get it taken out?
--- End quote ---
Gamma Knife radiosurgery.
--- Quote from: rad81 on March 23, 2016, 10:32:02 am ---3) If radio surgery how long did it take? Were you under the whole time? What was recovery like? Pain level on a scale of 1/10?
--- End quote ---
a - About a half hour actually in the machine.
b - They don't put you out for the machine but I did get put to sleep for about 20 minutes for the installation of the head frame.
c - Recovery - Easy peasey. I felt fine after getting out of the machine. My friend picked me up, we went to lunch, he dropped me off at home, I rested for the rest of the day (just tired - I was up since 4:30 AM), back to normal activities the next day.
d - Pain - None. But my AN journey has always been without pain. Well, no physical pain. This AN thing can be a royal pain in the ass (so to speak).
--- Quote from: rad81 on March 23, 2016, 10:32:02 am ---5) What side effects did you have during your recovery process and for how long?
--- End quote ---
No side effects, per se. No difference after than what I had before. Balance issues improved dramatically after a few months post GK.
--- Quote from: rad81 on March 23, 2016, 10:32:02 am ---6) How old were you when you had the surgery done?
--- End quote ---
67.
--- Quote from: rad81 on March 23, 2016, 10:32:02 am ---7) Did it reoccur?
--- End quote ---
Been 3 years since GK. So far the AN is deceased and stable. Still waiting for shrinkage.
--- Quote from: rad81 on March 23, 2016, 10:32:02 am ---8) Any benefits of cyberknife vs regular?
--- End quote ---
Lots of info on that question elsewhere on this site.
--- Quote from: rad81 on March 23, 2016, 10:32:02 am ---9) Anything else I should know?
--- End quote ---
Your mileage may vary.
--- Quote from: rad81 on March 23, 2016, 10:32:02 am ---10) Overall, how bad was it for you?
--- End quote ---
Having an AN is the worst experience of my life. I wouldn't wish it on anybody. Well, maybe on my ex-wife, but that's it.
bethtretrault:
-mine was small but grew in a year (still under 1 cm)
-retrosigmoid-I had issues with vertigo before surgery so no radio surgery
-I had surgery in Nov 2015 and initially had double vision which has resolved, balance which improved with daily walking, I had tinnitus before and it is louder now, lost some hearing in AN side pre surgery and lost more hearing after (still have some), get "headaches" which I think are really muscle pain in my neck - not horrible but annoying. The pain from surgery was not bad at all. Mine was done by Broaddus and Coelho at VCU Medical College in Richmond, VA
-58 years old
-I have not had my 6 months MRI but they said they got it all and removed a section of balance nerve so I am counting on not having to do this again
-I am glad I don't have to decide all over again-that was hard along with the anticipation. I feel very fortunate to have come through brain surgery so well and humbled by all the support I got along the way. It was not as bad as I imagined.
Sending you a virtual hug...
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