ANA Discussion Forum
Archive => Archives => Topic started by: DeniseSmith on November 22, 2005, 03:12:42 pm
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Is there anyone out there whose tumor has or had grown so fast there was no choice of radiation or surgery? This is a nice site, but I found it after the fact.
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What size was it when it was discovered?
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Denise-
I had had surgery in 1996, followed up by an MRI about a year and a half later that showed nothing. In Sept. 2004 an MRI showed a 3.2cm reccurrence. I had it debulked in Feb. (it was too large for radiation and there was some brainstem compression) and followed up with FSR. I have my first MRI next month. So yes, my reccurrence did grow a lot faster than most ANs and preserve my facial nerve I opted for the debulking.
Jane
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Denise: When my initial tumor was found in 1990 the only available option here in Canada was surgery, had other options been available I would not have been able to have them anyway, the tumor was very large when found (never have asked measurements, it took 15 hours to remove surgically). When my regrowth was found I initally thought of having Gamma knife when treatment was needed however over the years I was under observation I changed my mind and had the regrowth surgically removed this past Sept. (significantly smaller and hense shorter surgery). If I had it to do over I would have likely had gamma the first time around to save my hearing and face etc. but it didn't seem the choice for me the second time around...there was no long term gain and the small chance it wouldn't be effective and I don't want to ever deal with a.n. again.
Kathleen
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Sorry for the lack of response, I have not been on for awhile, everytime I come on here I get a little more depressed.
On 4/1/05 I went to my GP for acid reflux problems, while there I told him of my loss of hearing and numbness in my left check. He checked my hearing and told me to see an ENT specialist and he scheduled me for an "MRI of the brain". He said I might have a pinched nerve. I went to my MRI on 4/5/05 and while in there the technician asked why I was there, so at that point I knew something was wrong, but still did not want to believe. That afternoon my GP called and said it was a tumor, and he moved my appointment with the ENT specialist up to the next day, my original appointment wasn't until two weeks later (first available). So I
went the next day an was told I had an Acoustic Neuroma and it was 3.1cm x 3.8cm. I was then told I had two options radiation or surgery, and sent to the University of MN to see a neurolgist. I was told my tumor was quite large and that surgery was my only
option, as radiation could possibly cause it to swell and then would press on my brain stem, which would not be a good thing. So
I was scheduled for surgery on 5/09/05, a mere 34 days after my initial dr. appt. I had the surgery, my tumor ended up being bigger than my MRI showed. I had a blood vessel feeding it so it was growing like a weed. It was emeshed in my facial nerve, like
speghetti, and my nerve had to be cut to get all the tumor.
I have facial paralysis, a platinum weight in my left eye, balance issues, and am extremely pissed off. I am sick of trying to be strong,
and my positive attitude is almost none existent.
I am not and will never be the same person I was on 5/8/05. I am taking Zoloft for depression and I am very unhappy about the way I look now.
Sorry for the downer, but I needed to vent.....
Denise
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Denise,
I read your post and couldn't help but feel for you. My scenario is completely different, so I can't say I have been there. I can only hope that somehow, someday you can make peace with all of this. I don't blame you for being pissed off, I would be too. Facial paralysis is devastating, is there any reconstructive surgery to the nerve or otherwise that can help? How is your hearing in your AN ear? I admire you for your strength and courage, you have been through alot.
Please vent as much as you want - this is a great place to come for support. Keeping talking to your doctor about the depression, I hope the Zoloft is helping. I am sure it is hard to feel like you used to or normal again after all of this, please take it one day at a time and be good to yourself. You deserve it!
Best Wishes, Suzanne
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Thank you Suzanne,
I am deaf in my left ear. I do not know what the future holds as far as the facial paralysis. My doctor says it could take up to 18 months before anything happens. >:(
I hope you have a great holiday and new year celebration.
Denise
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Hey Denise,
Props to you for still looking for answers! I had my surgery November 7th for a 3cm AN. Lost the hearing, but recovering okay.
I knew that the surgeons wouldn't really know what they were dealing with fully until they opened me up, and I was very concerned about my facial nerve. Although mine was spared, by surgeon has grafted other nerves to replace the facial nerve. He specifically mentioned the nerve that controls the side of the tongue as useful to repair the facial nerve. The side effects are that your tongue sticks out sideways - but that would probably be okay, compared to facial paralysis. (My face stayed paralyzed for a few weeks - I know how awful that can be!)
Anyway, I just wanted to mention this as an option - I don't know if your doc mentioned it to you.
Good luck! We'll be thinking about you!
Josh
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Denise,
I can't say that i understand the daily trauma you have (not specifically experiencing it) but you must try and think positive - as difficult as it sounds. You have your mind, you can move around, albeit with a little discomfort, and there is still so much to enjoy in life. Keep fighting. Think of those poor individuals who are severely handicapped and can't do anything for themselves. Even though you have been dealt a lousy hand, there are always people worse off. Think positive.
Larry
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Denise, sorry to hear of your unfortunate outcome, however there is hope on the horizon for those who have injured nerves, I posted this a while back, but it may give you hope for the future:
AxoGen has licensed several patent-pending technologies from the University of Florida. AxoGen’s product development team plans for three product lines that combine the state-of-the-art recovery and processing technology from the allograft-tissue industry with the biochemical mechanism of axon growth and regeneration. This unique technological synergy makes possible the introduction of nerve repair products that improve the outcome of primary nerve repair and are substantially superior to artificial nerve grafts and the nerve-autograft procedures that are the current state-of-the-art techniques for peripheral nerve repair. AxoGen products will offer an integrated approach to peripheral nerve regeneration and will quickly expand and develop the solutions available to patients who suffer peripheral nerve injuries.
http://www.axogeninc.com/about.asp?page_id=4
Also, here's an article about cranial nerve repair procedures in use currently:
http://www.emedicine.com/ent/topic408.htm
I hope these articles will give you a good outlook on the future of nerve repair, maybe you can participate in trials if you wish. Just stay positive, medicine is changing daily, I am confident you won't have this problem too much longer. :)
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Hi Denise,
I had no choice but surgery either. I was diagnosed with a 5cm x 5cm AN in early August.
I'd been dealing with symptoms for some time, having lived with double vision since Jan. 2002.
I'm an athlete of sorts and had been running 5 miles per day and weight training so, although
the double vision was always there my equilibrium hadn't been effected and I could work around it. I'm also a musician and thought that the hearing loss in my left ear was due to loud music - I'd been playing 4-5 nights every week so it didn't surprise me that it was finally starting to wear on me. It wasn't until Feb. 05 when my equiibrium took a turn for the worse that I took action and had some tests done. My initial impression of my condition was either a brain tumor or M.S. back in 02, but because I had control of it through exercise and nutrition I thought I'd overcome it.
Last Feb I got worse and continued to deteriorate. When I was jogging downhill I couldn't
stop running or even slow down unless I grabbed on to something like a sapling or a street sign to break my forward momentum; I'd stagger around like a drunk and could not, for the life of me, walk a straight line. Also, my hand writing was deteriorating.
Finally, I went for help. MY primary care doctors at Mass General ordered an MRI and the next day the phone began ringing off the hook after the results came in. The day after that, I found myself sitting in the Neuro-oncology department at Mass General waiting to see Dr. Barker, the staff neurosurgeon. He had said, after viewing the MRI photos, "This guy is still walking around?"
Both he and Dr. McKenna, the ENT surgeon, had never seen anyone with an AN growth that size. It would seem that fitness does indeed play an important role in one's survival.
I had two surgeries; the first being in mid-August where a shunt was installed to remove C.S.F.
build-up in my head. The tumor was so big it was compressing the briain stem and preventing
the fluid from draining. It was also pressing on the cerebellum and effecting my left side - I happen to be left-handed. I was in the hospital two weeks for that procedure.
The date for the tumor resection/debulking was set for Sept. 21st - 3 months ago.
During the interim - about one month - I had plenty of time to reflect on what was in store for me, i.e.: facial nerve damage, swelling of the brain, permanent deafness, problems with anesthesia, catheders, entubulation, etc.....lots of fun!! After having had a taste of what it was
going to be like with the shunt installation I was worried. The amazing thing was that after I was home for a week I was jogging and started playing my gigs again even though my left hand was somewhat impaired. I noticed that I was much more sure-footed than I had been but still impaired. That thing had to come out. I made a conscious effort to stay as fit as possible because I knew next surgery would be much harder to endure. I was right.
When I woke up in ICU I couldn't even utter a word. I was in for three weeks, two in the hospital and one in a rehab hospital, hobbling around with a walker.
I noticed that my double vision had kicked in in earnest - I mean full blown double vision. I wore an eyepatch every day. Also, there was what can be considered, some facial paralysis on the left side. It was like, and still is, like I'd been shot up with Novocain that never wears off.
I want you to know though that these problems have been improving little by little. I no longer wear an eyepatch, chew more freely when I eat and no longer requier a straw when I drink.
Last Monday, the 19th, I visited with Dr. McKenna, the ENT surgeon that worked on me. I asked him about my facial numbness again. He touched a place on my left cheek and asked if I could feel that. I could and he said that the feeling will come back in entirety. It could take up to a year but it will get better. It already is after three months. He also said that what I was feeling was from the "Trigeminal Nerve," which is responsible for sensation and not the facial nerve.
At the end of our session I thanked him for having saved my life. He said, "You have no idea how big that tumor was". He also said that he does fifty to sixty AN surgeries a year and has never seen a growth like the one I had.
Paul
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Paul,
I am very happy that you are doing well and your recovery is progressing in such a positive way.
I sometimes feel all alone with all of this going on. My family and friends have been super supportive, although I still have a few friends that don't know how to act, and don't realize I just want to be treated the way they always treated me. When i
found out about the tumor I started keeping a journal. I write in it every few days. I can see I have made progress, but time moves really slow when you really want something.
I joined the Y and am going during my lunch hour at work and walking on the treadmill, which seems to be helping with the balance, my PT recommended doing that. I used to be able to run on the treadmill, now I walk so slow its almost embarrassing!! :o
Again, Paul, thanks for taking the time to share your story with me. I really appreciate it!!!!! I hope you have a great holiday season, and continued positive success in your recovery.
Denise
Also, a BIG THANK YOU to everyone who answered, and provided supportive and helpful information!!!
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Thank you for the kind words Denise!
Have a great holiday too!!
Paul
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Denise,
It is OK to be pissed. I wish I could be as thankful as some of our fellow posters are for the small gifts they are offed. I too become frustrated with the way people react when you tell them you have a brain tumor. I had to tell my boss that I am not going to fall down and start foaming and kicking, nor am I going to die at work.
Many times I thought I have been robbed or my life. I have worked all of my life to be able to retire and ride my horses. Now I can't even be around them. Many people think this would be a small thing to them and I am crazy to be angry about giving them and my life as I know it up. I have three years to work and can't afford to lose my job. For the past 3 and a half years I have worked 10 to 12 hours a day 9 months and 8 to 9 hours a day the other three months of the year in a very high stress job to get to the point to retire. Forget that, I will have work until I am 90 to pay off all of the bills that stack up.
I live with the fear that I will lose the hearing in my good ear again and be totally deaf. I didn't realize until it happened the first time, you can't hear you own voice. I am gratful to be able to hear out of one ear and it put that into prospective. Being pissed is not a bad thing. It takes a lot of energy and you will tire of it. It will come and go. This thing has not only robbed me it has robbed my husband and the rest of my family. I still laugh, I still function and I still get pissed sometimes. Life goes on with us or with out us.
Blessings,
Sandy
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Hi Denise,
I couln't help but read your entries again. You say they deliberately cut your facial nerve?
Not that I'm an expert but I was told by my doctors before my surgery that there would be a technician present during the surgery whose job was solely to monitor the facial nerve so that it
wouldn't be damaged. Cutting around the facial nerve is considered serious business. You'd think that this would be standard operating procedure in our day.
In my case, with a 5cm growth, the thing was entangled with the other nerves so they cut around them, leaving a minute portion of the growth in there, to be dealt with at later date, if it were to grow again. Then it would be small enough to be treated with radiation. You'd have to be checked yearly with MRI scans to catch it in time. My next scan is in May.
I have some facial numbness on my left side that is improving but the doctors say that it is from the "trigeminal nerve" and not the facial nerve.
During the last visit to my neurosurgeon I asked him how long I'd have to return for MRI check-ups. He replied, "How long do you plan to be around?". He told me of one person who had absolutely no regrowth until ten years after his initial surgery!
I know I was luckey enough to live near one of the best hospitals on the planet, Mass General;
but how are we supposed to find out about all of these complications when we're inexperienced with the problem, running out of time and scared? Through forums like this if we're luckey enough to find it in time. I know I didn't find this until recently and my ordeal occured in August through September and I'd been feeling the symptoms since Jan. 2002
Wnen I was five years old I was clocked on the left side of my head with a golf ball - on the ear
specifically. I started having short, profound dizzy spells at age 11 that would occur only once in a while up through the age of 30. I often wonder if those dizzy spells were a sign of what was to come? The hearing in my left ear was good until 2001 or so.
Hope to hear (no puin inteneded - I'm also completely deaf in my left ear now) more from you
Take care.....Paul
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Sorry, I have not responded sooner. I only have access to the internet through work.
My dr. said the tumor and facial nerve were like speghetti and it was impossible to get the whole thing without cutting the nerve. He did this to remove the whole tumor. He said he had not seen a tumor this big in about 8 yrs. I had been having symptoms for a couple years, but brushed them off as something else. Headaches from stress and using the computer at work. Dizziness because I didn't eat a good breakfast before working out. Actually, when I really think about it I have had the dizziness issues for many years. I wish I had paid attention and gone to the dr. sooner, but from reading some of the entries here, they still might not have diagnosed AN for a few years.
I go back to see him in May for and MRI and one year check up. I am really worried, that it will somehow come back. Also, I wonder what are the chances I will get one on my right side?? Maybe i shouldn't think about it. Maybe I will only end up with more gray hair. HA HA!!
I have been reading some of the other responses, and you know, when I was 12-13, and in 7th grade, I had a mild concussion and was in the hospital overnight for observation. Now I wonder if that might have been the start of all of this. I wish I knew.
But on a positive note.... at least in some sense of the meaning.... a good friend of mine told one of her friends about me and she was experiencing some similar symptoms, went to the dr. right away and they found a mengioma tumor. So she is in the wait and see phase of her tumor. I am glad my experience helped to someone not postpone going to the Dr.
Denise
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Denise,
I am sorry to read about how difficult your experience has been. I did want to offer one bit of comfort, however. In your last post you mentioned that you were concerned about getting an AN on the other side. When I was first diagnosed that thought occurred to me as well. I asked about this and learned that unless you have a rare condition that causes tumors to grow on the cranial nerves in general, you have next to no risk of having an AN grow on the other side. It is that random and rare.
I have yet to have surgery - mine is scheduled for late January - so I may yet share in some of your journey. I can tell you that when I was first diagnosed and scared out of my wits that I found great comfort here on the site. There is always someone here that shares in some aspect of your situation and can provide perspective. Stay tuned, as we will to follow your progress.
Sanddollar
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Thank you, Sanddollar!
I wish you the best in January, I hope you have minimal obstacles to overcome or none at all, once your surgery is complete.
Be Safe,
Denise
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Denise,
Thanks so much for the well-wishes. I am hopeful that my outcome will be positive, but with nerves you just never know. Such tricky, delicate things! Once the surgery is complete and I can function well enough to get online I will start a thread with my experiences, so watch for it in early Feb. I have gained so much from what I have learned here, I feel the need to contribute what I can.
Best wishes for the new year!
Sanddollar
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Denise,
You're not alone. My situation was very similar to yours. I cut my head last summer, went in for stitches, they did a CT-Scan for the hell of it and eventually found a 3.5cm AN (No Symptoms at all), They didn't give a choice, it had to be surgery because it was embedded in my brainstem, smashing some of the other nerves and so on. After stage 1 in which they removed the embedded portion from my brainstem by brain swelled and compressed the stem which kept me in the hospital for 31 days, I lost my whole left side, very weak and uncoordinated in addition to the hearing, balance, facial numbness, eye problems, blah, blah, blah. This was last October and now on Feb 1st I go in to have the residual tumor removed. How exciting, huh?
Dr's told me that I am a case study, will be written about in text books and cases like mine only come around once every 10-20 years. Because of my issues, they have now started putting shunts in to some folks prior to surgery, thus, proactively anticipating swelling. I think it sucks too. Everyone says I'm "brave," and "strong" and that's nice, but I still can't get past people calling me "lucky" or saying that "it could be worse." I try to keep a good attitude about it, but I understand your frustration. You're not alone ... I have a full account of my story, if anyone is interested just email me at sryan@villagegreen.com
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Hey Scottie....
Just read your post and it scared the hell out of me. I had a gargantuan tumor and didn't go through what you did. They did, however install a shunt before taking the tumor out.
The neurosurgeon told me I had two problems between the fluid build-up and the tumor.
You gotta see the MRI photo of this thing at 5cm x 5cm. I'd like to post the scan i did but need some pointers on how to do it. That "insert picture" icon above isn't doing much for me.
Paul
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Good Luck in February, Scottie....
please let me know how your're doing.
I agree, if one more person says how lucky I am, I just might explode!! I also have poor coordination on my left side, and I am just starting to get the hot/cold feeling back on my right side, and I am also, starting to feel pain on my right side. It is very weird, I take a hot shower and the left side is nice, and the right side of my body it feels room temperture. My surgeon calls it a "brain stem insult", that while they were removing the tumor they tapped my brain stem. They should be more careful!!!!
Good Luck in Feb.
Denise