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?
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.

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]

1) How big was your neuroma compared to mine? Is mine considered large?

9mm x 4mm x 3mm

Yours isn't much bigger than mine and I consider mine small. Mid size generally start about 15 mm.

2) Did you do radio cyberknife surgery or get it taken out?

Gamma Knife radiosurgery.

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?

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).

5) What side effects did you have during your recovery process and for how long?

No side effects, per se. No difference after than what I had before. Balance issues improved dramatically after a few months post GK.

6) How old were you when you had the surgery done?

67.

7) Did it reoccur?

Been 3 years since GK. So far the AN is deceased and stable. Still waiting for shrinkage.

Any benefits of cyberknife vs regular?

Lots of info on that question elsewhere on this site.

9) Anything else I should know?

Your mileage may vary.

10) Overall, how bad was it for you?

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...

[UpstateNY]

1) How big was your neuroma compared to mine? Is mine considered large?
Mine was just a bit larger than yours.  It was 12mm at my last MRI, which was estimated to be 14-15mm at surgery.  The sizing varies, but most consider this small or medium.

2) Did you do radio cyberknife surgery or get it taken out?
I took the microsurgery approach for a number of reasons.  Mine had an aggressive growth rate, so radiosurgery was seen as having a lower chance of success.  I didn't want to have the exposure to radiation if the same or better result could be achieved with microsurgery.  I didn't want the unexpected flare-ups and fatigue for up to 5 years (although this varies per person), since I travel in my career. 

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?
Since my tumor was close to the cochlea, I had no usable hearing left in the AN ear prior to surgery.  Therefore, I had the translab (more specifically transcochlear) approach.  This provides better exposure to the facial nerve to minimize any damage.  My surgery was performed by Drs. Slattery and Schwartz at the House Clinic in Los Angeles.  I live in upstate New York and found it very much worth making the trip to Los Angeles for the best medical care possible.  My pain was close to 0 for the first 48 hours, but I was also given pain meds while in ICU.  For the next week I had periodic pain at night due to my head moving around when trying to sleep that I only used Tylenol for.  At 1-1/2 to 2 weeks after surgery all pain was gone and I no longer took Tylenol.  My understanding is that that smaller the tumor is, the less complications one typically has with microsurgery.  I was afraid of surgery at first, due to all of the horror stories on the internet and being that I never had any kind of surgery in the past, but quite honestly it was much easier than I had thought.  Once they put me under, the next thing I saw was waking up in the ICU and the surgery was over.  I was walking 5-10 miles/day 4 days after surgery and doing pretty much everything I had done prior to surgery except for being careful how much weight I lifted.

5) What side effects did you have during your recovery process and for how long?
I had no facial/eye issues and not even much drowsiness from the medications.  My balance improved, since I had some lightheadedness when moving prior to surgery.  The tinnitus I had prior to surgery (various sounds all of the time) was completely gone after surgery, but replaced with a low volume squeak when I speak or after loud sounds come in my good ear.  This is a bit strange, but is a good trade-off since I don't notice it unless I listen for it.  I recovered in the first week for the most part and even better after 2 weeks.  I did walk 5-10 miles and perform vestibular exercises every day.  I officially returned to work full-time at 4 weeks post-op, but was checking in and answering emails after week 1.

6) How old were you when you had the surgery done?
I was 50 (and still am).  My surgery was on Feb 18, 2016.

7) Did it reoccur?
No.  Will get an MRI in 6 months, but the neurosurgeon (Dr. Schwartz) said he removed it all. 

Any benefits of cyberknife vs regular?
9) Anything else I should know?
I believe the typical recovery time for microsurgery is 6-8 weeks, but I have seen several people in the past few months that had similar sized tumors to yours and mine that recovered in weeks. 

10) Overall, how bad was it for you?
The worst part for me was the anxiety prior to the surgery.  The actual surgery was quite easy.  I believe this was due to the size, location (very close to the cochlea, not the brain stem), very experienced surgeons (this was probably the largest factor), my age/physical shape, and luck.  You see many bad microsurgery and radiosurgery stories on the internet, but in reality most have very good outcomes.   

Good luck with your decision process, since that was the most difficult for me.  The best piece of advice I received was to choose a facility and surgeon with a lot of experience, even if that meant traveling.

[mcrue]

1) How big was your neuroma compared to mine?


My Acoustic Neuroma was 18mm x 9mm x 9mm and considered small-to-medium.




Is mine considered large?




No. Yours is considered small.
Generally speaking, I believe anything under 1.5cm is considered small.
Medium is 1.5cm - 2.9cm
Large is 3cm and over



2) Did you do radio cyberknife surgery or get it taken out?


Gamma Knife radio surgery by Dr. Jason Sheehan at the University of Virginia in Charlottesville.



3) If radio surgery how long did it take?



52 minutes in the Gamma Knife machine. I had to arrive at 5:30am and I was treated at 9:30am. I was the first person of the day to be treated. I was done by 10:30am.



Were you under the whole time?



Fully awake. They gave me "conscious sedation" while the applied the head frame. I was very relaxed. They will give you whatever it takes to make you comfortable. They played music during my procedure.



What was recovery like?



Minor dull headache for a few weeks, hearing decline, increased tinnitus, major fatigue, and eye issue which may be allergies.



Pain level on a scale of 1/10?


ZERO



4) If regular surgery what kind was it?



I had Gamma Knife radio surgery; however,  I likely would have opted for Middle Fossa with Dr. Schwartz as my second option.  Dr. Schwartz said the "Retrosigmoid" approach was not an option for morbidly obese patients like myself. I didn't want Translab because my hearing was excellent.




Where was it done and with which doctor (I am in the NJ/NY/Philly area)?



University of Virginia with Dr. Jason Sheehan in Charlottesville, Virginia.
I basically spent an extra $1000 to see Dr. Sheehan and travel to Virginia (plane, cab, food, hotel, etc.).




What was the pain level 0-48 hours after the surgery?


ZERO



How about 2-7 days after?



ZERO




1-4 weeks after?



ZERO




5) What side effects did you have during your recovery process and for how long?



Constant dull headache ( 2 out of 10) for several weeks, increased tinnitus, decreased hearing, major fatigue, eye issues (possible allergies not related to treatment), anxiety if treatment worked and/or future side effects.



6) How old were you when you had the surgery done?



It was just 5 days after my 42nd birthday.



7) Did it reoccur?



Hopefully it won't grow anymore.



Any benefits of cyberknife vs regular?



Yes. Radiation offers virtually no immediate side effects and you can literally go back to work the very next day. There is no intensive care, or lengthy hospital stay or recovery. No deaths on the hospital table.

The goal of radio surgery is stop future growth. The goal of microsurgery is to remove the tumor so it stops growing. The goal of "Watch & Wait" is to hope it doesn't grow to avoid complications from treatment.

I didn't want to have to face up to 3 months recovering from microsurgery, plus even longer with vestibular therapy, etc. if there are complications. I didn't want to risk living the rest of my life with facial paralysis. Gamma Knife offered me the best outcome for both hearing preservation and avoiding facial paralysis.

I selected Gamma Knife because I saw all the YouTube videos of Acoustic Neuroma patients post-op who suffered deficits. Many had Bells Palsy (facial paralysis), eye issues, taste issues, balance problems,  swallowing issues, cognitive issues, etc.

Just look at all the sub-categories on the ANA website forum for a partial list of all the major complications possible from microsurgery. I was terrified. I don't care if they "get it all out." I just wanted to make it stop growing. If Gk treatment fails, then microsurgery is always my second option available.

Since my Acoustic Neuroma was still classified as small, and since the majority of specialist I spoke with said because my Acoustic Neuroma was aggressive and growing faster than normal, they felt Gamma Knife would be the best selection and most responsive treatment. World renowned Gamma Knife experts told me since it was growing faster than normal, it would respond more sensitively.

I have also unfortunately read many times on this forum of people who opted for microsurgery to be told they "got it all" only to have it regrow a few years later with avengeance. If the surgeons leave just once cell, then that leaves the opportunity for the tumor to regrow.

Many doctors can have polar opposite views on treatment. Some will neglect radiation claiming "age" or "vertigo"  or some previously existing condition which likely can be mitigated with radiation.  1 out of 500 will die on the hospital table during microsurgery. 1 out of 20,000 will develop cancer from radiosurgery. You do the math. Doctors will most likely favor the treatment they perform, which often leads to a biased opinion while recommending treatment. This is equally true when it comes to patients recommending treatment options. Just because radiation or microsurgery "worked' for one person, doesn't guarantee it will work for you. Naturally people will recommend the option they had if it worked for them (myself included). There are no guarantees with Acoustic Neuroma treatment. It is brain surgery.

I look at it like getting a 16 in Blackjack. Some people will "hit" while some will "stay", but at the end of the day it is a bad hand that you wish you were never dealt.

There are no guarantees with any treatment. Even the very best docs at the high-volume "successful" world renowned treatment centers will tell you that there will be patients in the future who will suffer facial paralysis at their hands. I hope you grasp the reality of that statement.




9) Anything else I should know?




Keep in mind doctors/surgeons can, and-do, manipulate statistics to favor certain outcomes. This is true for most everything in life.  I once had a local surgeon tell me statistically his results were as good as the House Clinic in Los Angeles. Also, many doctors will claim some side effects may or may not be the result of their treatment (claiming it may have happened anyway without treatment). It's very political. Use common sense when evaluating teams and treatments.

 At the end of the day, it has to be YOUR decision. Don't feel pressured or obligated to follow through with a certain treatment plan if you're not 100% comfortable with it.
Don't be afraid to cancel and/or fight to see another team. It's your brain after all. Many have traveled across the world for the best treatment. Find the most skilled surgeon with the most successful outcomes regarding Acoustic Neuromas specifically (not just brain tumors). Don't be afraid to spend a few months fighting the insurance company. It's better to spend months fighting to get the team you want, than a lifetime second-guessing if you made the right choice. You will likely be second-guessing after treatment anyways.

I found that I could have asked as many questions I had wanted, but it was pointless, because I knew at the end of the day I would be having that treatment regardless. I was also afraid I wouldn't fit into the CT Scan or GK machine since I was 6'5" tall and 375lbs.




10) Overall, how bad was it for you?




The anxiety and second-guessing during the immediate 48-hours prior to treatment was the worst part for me. I needed all the reassurance I could get. Also, the months of anxiety "watching & waiting" prior to selecting a treatment were no fun. In a sense, having an Acoustic Neuroma requires you to "watch & wait" for the rest of your life, even after treatment.

Do as much research as possible and select the most experienced team who specifically treat Acoustic Neuroma brain tumors. Find a "high volume" acoustic neuroma treatment center that is recognized for their successful outcomes, and be sure you and your surgeon are on the same page on what the definition of "success" means. If the surgeon "gets it all out" but you suffer facial paralysis, is that success?  I mentioned previously how some can manipulate statistics, so be clear on every expectation and "back up" plan should problems arise. For example, who will perform the follow up surgery if you get a CSF leak, and how to contact your doctor over the weekend in case of emergency?

In my opinion, these are some of the top docs:

Microsurgery:
Dr. Marc Schwartz - House Ear Clinic in Los Angeles
Dr. Rick Friedman - Keck in Los Angeles

Gamma Knife radio surgery:
Dr. Lundsford - Pittsburgh
Dr. Kondziolka - New York
Dr. Sheehan- Virginia

Cyber Knife:
Dr. Steven Chang - Stanford,CA

Proton Beam:
Dr. Loeffler - Mass Gen Hosp
Dr. Allan Thornton - Hampton, VA

[elizabethpoff]

hi just got diagnosed feb 18th 2016 ... 2 by 3mm ...had way too much vertigo ...dizziness...nausea....im on a watch and wait .... but find it extremely difficult...im the kind to face things...get it done...whatever needs to get done...feel I will eventually opt for middle fossa operation....I will see how things look after 2nd mri...but I already know I will have to do something for sanity sake.... lol 

[rad81]

Thanks for the post everyone....I am sure this will help the community overall, and if anyone else wants to give their input, please do so.

[Stina44]

1. Mine was the size of a golf ball, about 4.3 cm
2. I had regular surgery
4. I dont exactly what type of surgery it was. I was under for 12 hour and 99% of my tumor was removed. 0-48 hours were excruciating. I woke up in more pain than i can explain, as well as being confused because i suddenly couldn't move the left side of my face and couldn't hear put of my left ear. I was on morphine for 4 days. And in the hospital for 2 weeks. Lots for pain while i was in the hospital. As well as sensitivity to light and smell. The pain from surgery subsided after about 3 weeks. My surgeon was Dr. Satish Krisnamurthy. He currently practices in Syracuse New york. But at the time he worked in michigan.
5. I lost 100% of my hearing in my left ear. I had to re learn to walk. And facial paralysis on the left side of my face. I have regained about 60% of the movement in left side of my face.(progressivly over the last 8 years)
6. I was 14. 3/4 of the way through my freshmen year of high school.
7. What is left of my tumor has not grown at all. Which makes me very happy because its been 8 year and my drs told me it would probably regrow and i would most likely need surgery again in 15-20 years.
8. No benifits either way that i know of.
9. What to expect? Expect everything. Expect nothing. Before i went to surgery. The hospital gave my parents a list of over 100 things that could have happened to me. Everything from not know who i was when i woke up, to complete hearing loss on that side(which happened) every outcome is diffrent. Worrying will drive u crazy.
10. Personally i am left with tons of pain constantly. It gets better and worse but it is always there. It keeps me from being able to work.
I hope ur experiance is easier than mine. Best of luck to u.