ANA Discussion Forum
General Category => AN Issues => Topic started by: chrisabbott on January 02, 2020, 06:18:41 am
I can't seem to find anyone else that has had this/posted outcomes? I had translate on a 3.1 cm tumor in June, and was prepared for possibility of the residual 15% to regrow, but everywhere says these buggers are slow growing. I was shocked to find 8 mm growth in 6 months.
I have surgery scheduled for January 13th, and surgeons are recommending to follow up with radiation as soon as I've healed. Call me crazy, but I'm more nervous about the radiation than the surgery - what if that fails too?
Has anyone else had fast regrowth like this? I'm hoping if someone has, they were able to nix it?
Hi Chris, do you have an MRI immediately after surgery done last June? I'd say you need this baseline.
Yes I did - they did that same evening as the day of surgery. That's how we know the residual tumor grew 8 mm in the longest dimension in just 6 months. The tumor is stuck along my facial nerve so they took out the thickest area, but left a sliver along the nerve.
So a residual amount was left and it grew 8 mm. How big is the tumor now?
It's back up to 24 x 14 x 16 mm
Funny thing is, in the last month I've had considerable improvement in my symptoms, including those I had well before surgery. I still have a little numbness in my face, and do not make tears in my left side, but the area that is numb is smaller & I still get ticklish ripples/mild zaps which I think is a sign its still recovering. I have my energy and metabolism back, and my eyelashes are growing normally again (I assumed they stopped growing a couple years ago due to menopause, but they're back!)
Chris, It's great to hear that your symptoms are improving. Have you had a look at your MRIs on your PC (you can readily get the CD)? Given things are improving, what do you think about waiting for 6 months (or 3 months) after your last MRI to do a detailed comparison?
I can't wait, the tumor grew 8mm in 6 months. I'm counting the fact that I recover well from surgery as a blessing, and that the reduction in size of the tumor has helped my symptoms, but I can't walk around wondering when this thing pressing on my brain stem is going to do some serious harm.
I have a little anxiety about facial nerve damage the second time around - I really didn't see any worsening first time but they need to be more aggressive to stop this thing. I think I can deal with that, but I had hoped to avoid radiation and it appears that this would be recommended following the surgery (about 8 weeks after). That's the part that worries me - what if it doesn't stop regrowth? Everyone says these things grow slowly, but mine isn't slow at all, so how do I know it won't keep coming back?
It doesn't hurt to send your MRI's to another qualified surgeon for evaluation and advise. We don't get many chances with decisions like this.
Thanks - I will try to get opinions after my surgery on Monday. I just don't have time to chase up right now, with work, filing for divorce and having a life. I believe surgery to get the size back down is the correct route, and no worries about the quality of care/skills of surgeons for that task. My tumor quickly grew past the size that other options as first line of defense are an option. I looked at the MRI before I met with my surgeons, and already deducted that it was now slightly double in size since surgery in June, and grew 8 mm in 6 months.
What I'd really like to know, is has anyone had a very fast regrowth of residual tumor following surgery, and if they had radiation treatment after, did it work, and who did it? My surgeon proposed the radiation as follow up, and OU in OKC has all the latest in equipment, however I have reservations.
-Not keen on the idea of radiation period
-Tumor is stuck to facial nerve and brain stem - can radiation take care of the tumor and not damage those?
-One hears about tumor regrowth being harder to treat if radiation fails, what if that happens with my tumor that appears to be a sprinter?
-Is it possible that there's something different about this tumor and its not even a regular vestibular Schwannoma? I had a giant cell tumor in my hip in my twenties, and it seems impossible for the two to be related, but highly improbable for the same person to have both?[/li]
I just wish I could hear from anyone that had a fast growing tumor and what their experience was....
Sorry to hear about this, about all of it. BUT I support the having a life! I have to remember to do that...
At my 6 month post surgery MRI, there was growth and the recommendation was to take action (vs wait and see) from all the medical personnel.
I personally leaned towards surgery, because recovery went SO well, and (to be very very honest) it seemed that i would get more time off to recover. This stuff can be overwhelming. After talking to 3 drs, the third one told me that he STRONGLY recommended radiation. He distinctly remembered how tightly the remnant was hanging on the facial nerve and thought that CK would be a better choice.
The way i understood it, its better to go surgery > CK > surgery. Additional surgeries mean they have to adjust the plane (the way they go in i guess) but thats the biggest challenge. Additional radiation can have longer term impacts to health, maybe. But its so much less invasive.
And it was SO much less invasive in comparision.
Those are my thoughts.
Thank you so much for sharing your experience - I was feeling like the odd one out ;o)
I'm tying up loose ends this weekend, and report to hospital 5 am Monday morning for my surgery. My son is taking me, and a dear friend is going to join him. I feel blessed in many ways, and determined to be so positive about this, that I'll be driving everyone crazy!
Be sure to let us know how it goes- although I know it will go great!
For sure I will!
I'm busy adding extra goodies to my bag, and snacking/drinking - because after midnight, I don't know when I'll get another decent meal ;o)
Thinking about you, Chris! Let us know how you're doing. Sending good vibes over to you today.
Here's an update:
Started good Monday - surgeons said they got more of the tumor, but as expected still had to leave some. My abdominal incision for the fat transplant was trying to bleed again but they were keeping an eye on it and fixed it before I left the operating theatre. I came round a bit sore, but in the to be expected range. Unfortunately, a couple hours later, I heard a noise like a very loud white noise, and 10 minutes after that my hearing on my right side was gone. I'm deaf right now. they took me down for an MRI no cause identified.
Steroids might help, but the surgeons are not highly hopeful - they chatted with other neurosurgeons, some had heard of this happening, none with their own patients. Apparently this can happen with surgeries not even done on the head (like heart or spine). For some reason, I have become ComplicatedChris! A magent for unusual stuff and its not a good unusual. On the bright(wish) side, I can have a cochlea implant if the hearing isn't returning within 6 weeks.
Today, I noticed a drip from my nose when I leaned forward - I'm sure at least half members of this website knows what that means... CSF leak will be fixed tomorrow morning. I have to swap my lovely PJs for a stylish hospital gown again!
I was feeling great today (well once they ramped up the steroids I did) - the surgery will be simplified by the fact that they can plug up my left side knowing the hearing is already gone. I was using a bicros hearing aid and doing very well with it. Not sure about what comes next, but as someone that interviews people for a living, the thought of being deaf is not easy to feel good about.
I'll keep you posted - hopefully everything will turn out fine in the long run, and others won't despair if they run into some hurdles on their healing journeys
Thanks for the update -- and I love your positive attitude!
I hope you are home and recovered. I have a story very similar to yours. My first surgery turned into 3. First I hemorrhaged from the stomach (2) and then the leak (3). My fragment that was left grew back in 14 months, so I had radiation last October. Now the bugger is growing again. I go back in April and we decide then what the next course of action is ::)
So sorry to hear this. You have had such a rough go of it. Any chance the CSF leak is causing the hearing problem on the right side?
Prayers for you.
Prayers, mojo and kind thoughts - all works wonders for me.
I just got my head wrap off - what a relief! Ears are not meant to be tightly bound - mine was sore before the wrap came off, and screaming tender for the first half hour after. The area that was re-stitched looks a bit rough, Dr Bien said in effect, its like most of my incision is only 4 days old again vs 21 days since the surgery. I'm used to being a quick healer so this feels almost like I'm letting the side down which is silly and fruitless so I'll eat some chocolate until I feel better. My other surgeon Dr Dunn came over to look at the incision too - those doctors give me such personal attention and are so responsive, it really helps me feel better about this. If I'm not leaking after I finish taking the diuretics in a few days, I should be good. If the CSF builds up, then I may need a shunt but they are trying to avoid going down that road and I love them for that.
I have regained just a little hearing on the right - I can hear high beeps on some of my appliances, and can tell the difference between music and speech on the TV but not what anyone is saying. Interestingly, I can tell what my GPS is saying about 75% of the time! We're going to repeat my hearing tests in another week to see if there's been any change in the hearing improvements. I don't feel I'm going to gain enough to be functional, but I do feel it is exciting that I may be able to take advantage of residual hearing in order to have some acoustic hearing with a cochlear implant.
I have been blessed yet again with support from my beautiful friends and family - my son has been amazing, one of my doctors even said he would be very proud if his kids grew up to be as caring as him. My sister flew from England to spend a week with me, at her husband's insistence that he didn't need her as much as me, when he'd just had radioactive isotope for thyroid cancer (he said he had a treatment, I had surgery).... a local friend stayed with me from 7am to 7pm the day of surgery and rushed out to buy dry erase boards when I lost my hearing. And now, another friend is flying from California to spend a week with me in Oklahoma after they turn on my Cochlear Implant so we can have fun testing the implant in different scenarios and working through as much rehab as I can.
Boy am I ever wordy these days - sorry about that but glad I have good stuff to share too
So glad to hear you are doing ok. You are in my thoughts.
Hi Chris, thank-you for replying to my post on my slowly growing AN. Forgive me if I ask this question improperly, I am new to this site posting. So, you say you had 35% hearing loss and after surgery you had total hearing loss? My surgeon told me in 2017 that if I had surgery I faced 30% TOTAL hearing loss in BOTH ears! He had CK doc phone me who said I could live with this tiny AN for 20-30 more years (I am 62). I've heard horrible things about CK surgery. "Crawling, pulling sensations on side of face, partial sight loss in right eye CK surgery done on, horrific tinnitus, 4x worse than before CK surgery."
Hi - nothing improper at all. This is why we come here - to ask &/or answer questions.
So I started out with impaired hearing due to measles when I was a baby - that probably made it harder for me to notice that my hearing was getting worse on the AN/left side. I noticed other symptoms like strange taste and then numbness in my face - but hearing tests showed that the tumor took the last of my left side hearing a couple months before I had my first surgery.
A few months after the surgery, I got hearing aids with a CROS picking up sound from the deaf side and directing it to my right -the right side hearing aid also enhanced my hearing so I was very happy.
A couple hours after I came round from the second surgery I had, my head suddenly filled with the loudest noise (sounded just like the massive emergency generators my office has) and I realized I couldn't hear what people around me were saying. My post op MRI didn't show anything to cause it, and the surgery didn't go anywhere near that side - apparently I had secondary endolymphatic hydrops/sudden idiopathic hearing loss, could be a change in my CSF, its not common. I did my own reading up and it seems more common following spine surgery, even then there are not many cases of this happening to an unaffected ear as a result of surgery elsewhere in the body. So I don't think this is something for others to worry about, and I would question why you should have a 30% chance of losing hearing in both ears? That merits an explanation &/or getting a second opinion.
When you say CK surgery - you mean cyber knife? I ask because the radiation treatments aren't surgery - they say things like "knife" but there's no cutting. (Pardon me if I'm stating the obvious). It is true that many people find their tumors grow little if at all, but I also think that if CK is the only option discussed with you - I'd be inclined to seek another opinion (well if your next MRI shows growth I would).
I have another hearing test Wednesday to see if I have regained any more hearing, then MRI & meet my otolaryngologist, and cochlear implant feb 24th. They're keeping me busy ;o)
Just thought I'd post an update:
I have recovered a little hearing, but it's of little value. I can hear the indicator on my car if I wear a hearing aid turned up full. I can make out about 50% of what my mother is saying on FaceTime, again with hearing aid turned up also bluetooth connect to the phone, and if I have my finger pressing the aid into my ear. This morning I had a pre-implant MRI - I heard a high pitched sound briefly, and that was all. I'm sure most of you have had a brain MRI and know that for me to not hear almost all of it with no ear plugs, means I have doo-doo for hearing. To be honest, I'm really sick and tired of seeing how many transactions I can't complete because they're all just a phone call away, and I haven't figured out a practical way to take a call unless my son is around to help.
So when Dr Bien asked if I had any doubts about getting an implant, I felt comfortable telling him to go full steam ahead. I'll gladly take any positive mojo & well wishes on Monday 24th when I get my cochlear implant.