ANA Discussion Forum
General Category => Inquiries => Topic started by: michelej on July 11, 2014, 09:09:48 am
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I was recently diagnosed with an AN a couple of months ago. I have had it for over three years. I did the watch and wait thing without knowing it. It was missed on my MRI back in 2011. It was plainly there and it now has grown 7 mm. I wasn't happy about that. I was told it was "reflux" by a local ENT :'( I had gotten used to the decreased hearing and the off balance at time symptoms. I finally went to anothe ENT and got another MRI. I got a copy of the old one to compare (the one that was reported as normal). It showed a 19 mm. AN. So I went to another ENT neurontologist who does several of these a month at University of Iowa Hospitals and he suggested translab since my hearing is pretty much shot in that ear. I didn't want SRS because I am only 52 and I don't want radiation going into my brain and getting to somewhere it is not supposed to be. As I have researched the options this seems to be the one that will be the best for me. I have surgery scheduled for July 17th. I am freaking out reading all the posts on here because it seems that everybody has had bad results. I refuse to let this AN control my life and make it not what it is now. I will continue to do everything that I do now including working as a transcriptionist, working in the yard, biking, ziplining, etc. So does anybody have any stories other than the horror stories I am reading? It would be nice to know. I know people all deal with things differently.
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Some people have easier recoveries than others, not all outcomes are " horror shows." Some of the more difficult outcomes improve considerably over time. Some of the complications from surgery that do not improve simply prove to be less difficult as we can adapt to them. After time the symptoms just seem less problematic.
There are no guarantees of outcome, but smaller tumors are more easily treated and generally have fewer complications. Larger tumors are more difficult to treat and more prone to complications. The accepted best way to avoid complications is to find experienced surgeons at
neurosurgery centers that specialize in AN's and skull based tumors. According to Harvard medical School, the two most important factors in the outcome of AN surgery are tumor size and experience of the surgeon/s. The first factor you have no control over, but you do control the second factor. Good luck.
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Hi, I had radiation and I am only 31 years old. I finished my treatment on the 1st of April. To be honest I didn't have any problems. I forget that I have an AN. I just see myself as a person with hearing loss rather than with a tumor. I felt the same. That everyone will have big problems. But it's not like that. People that feel good don't write here. Only the ones with issues reports often. So try not too worry too much. Having said that, I still avoided surgery. Seemed like it had more risks than radiation.
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Michelej, Keep in mind that many of the people that post here are doing so because they feel the need of support, or wish to support others. You may not wish to base things on everything you read here, especially if you miss the good stories.
Like mine.
Admittedly, my story is pretty scary because I am such an odd case. I had a large tumor and a 32 hour surgery (you can read much of the story here http://randomdatablog.com/brain-tumor/). Nothing went quite as planned and I ended being home more than twice as long as I expected, and my recovery even longer. To top it off, because my tumor is on the artery and has such a good blood supply, I still ended needing radiation. I am now 52, and radiation was just over two years ago, but I did not hesitate.
Life is extraordinarily good. I have a few deficits, but none that normies are likely to notice, save the occasional doctor. I do anything I want - including kayakfishing, backpacking, and hunting. Professionally, life is wonderful - I just work too much.
I hope this helps,
Tod
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Mr. Tod,
I read your blog, thank you for posting it. I'm paraphrasing you here, but you had an enormous tumor, incredibly long surgery, and ICU stay three times longer than typical. You end your blog with the fact that you were back to work in ten weeks! As bad as things were (and maybe still are?) you were back to work in fairly short order. I think this is a huge deal and I am vary glad to read this.
Since this was a few years ago now, can you give us some idea of how things are now? Frankly, my circumstances are much rosier than yours were, at least for now. I'm 47 and recently diagnosed with a 1cm x 0.9 x 0.8 and my symptoms are pretty mild. With 20/20 hindsight, I now see that I've had it for 8 years since this is when I first had a vertigo/vomiting attack. In other words, with your horrible tumor, and AFAIK positive outcome, I think things are actually looking good for me. Sorry if that is a bit selfish. I am just trying to get a good perspective on things as I wait to hear from Duke as my records are being forwarded to them.
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AnGuy,
4.5 years later I am doing pretty much anything I want. My only real issues are that I work far too many hours to be as active as I want. I spent last Saturday kayakfishing in the Chesapeake Bay, about three miles from the Atlantic Ocean in a 11mph breeze - right to the ocean.
As for tumor-specific issues, I still must use night-time ointment in my left eye, I have some remaining swallowing difficulties that simply mean I have to be aware of what I am doing, and I have hemifacial spasms that are annoying to me, but that no one else notices. I also can't really sing much or yell when outside. The cold also does things to my voice. And I still cough.
But these things are really so incredible minor.
Last February I was invited to a meeting a White House. Thursday night I received an invitation from the Office of the Vice President to participate in an event in a couple of weeks.
It is really, really, really hard to complain. I have much greater struggles in raising my former daughter-in-law and two grandchildren. A brain tumor is relatively easy in comparison.
You seem to have plenty of options at your age and size of tumor. If you are able to do all you wish, I see no reason to worry until it is clear you need treatment. There are many different stories across this site and it is so hard to predict a given outcome. Unfortunately, even treating the smallest tumors can end with bad results and some with very large tumors have really easy outcomes. Tumor location, experience of the docs, and patient attitudes can make huge differences.
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How many kayaks did you catch?
Sorry, that was worse than many symptoms lol.
I'm so glad you are doing well and taking the time to share it with us. This is a good thread.
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Who is doing your surgery in Iowa? I'm in Rochester, MN and may need a some more options..
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4 years ago this November I had translab and am single side deaf. When I went back for my follow up MRI, they found a parotid gland tumor on the opposite side. So another surgery where the cut was 6 inches long. I had some Bell's palsy for a while, but did my exercises faithfully and 99% of it went away. Sometimes I notice a slight crooked smile that others do not notice. I have not had any problems. I was able to go back to teaching Kindergarten in 2 months.
Sandy, WV
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As far as having good results: I would GUESS that there are basically three subsets of people on this site- newbies looking for info & support, post-treatment people still having a lot of issues, and post-treatment people with few or no issues but who are high up on the empathy scale and wanting to offer support to others. There may be a huge subset of people who were successfully treated who never joined this site or who left because they no longer needed the support. So you may not be hearing from them...
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Well, I guess I could consider myself as having a good result. At 65 I knew right away that I was not going to put up with all the potential side effects of surgery so I chose CyberKnife. I feel basically the same after CK as before. I knew that whatever symptoms I presently had would remain after treatment and that is exactly what happened. I still have the slight balance issues, tinnitis, and SSD that existed pretreatment and none of which have gotten worse (yet). With radiation, the tumor normally swells from 2 months up to 2 years post treatment but that does not necessarily mean your symptoms will get worse. There is no correlation between tumor size and severity of symptoms. I am 4 months post CK and I feel the same as before CK. It didn't hurt that Dr Steven Chang and Stanford Medical Center was in my backyard. To obtain the best possible outcome, it is critically important to seek out the best AN physicians out there with the most experience. Afterall, it's your brain that is being messed with!
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Six months ago, Feb 2014 I had my 2.5 AN removed Trans Lab approach my Dr Schwartz/Dr Slattery from the House Clinic in LA, California. I had a very successful surgery, Back doing all my normal activities, facial preservation, only thing is loss of hearing from surgery and minor taste diminished but very happy with my results and post surgery progress.
please feel free to contact me I am available to talk or provide any assistance should you need it
Dana
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Thanks for this thread. I just had my MRi and waiting (nervously) for my results. Have PM some people on this board and really appreciate their support!
Asymmetrical hearing loss ...
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I think the idea of "good results" is a personal opinion, what one will not see as good results another will and vice versa
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MicheleJ-
Can you post and let us know how the procedure went for you? Hopefully, it was great and that is why you didn't post.
;) Rod
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I am a 57 yr old woman who was diagnosed 5 years ago with an intralabyrinthine schwannoma. I am in excellent health and exercise daily. I have severe tinnitus, somewhat severe vertigo with a few recent incidents of nystagmus and occasionally I have some pain. I have no hearing in my right ear even with the use of an hearing aid
In October 2010 the tumor was 5mm in length. November 2011 it measured 7.6 mm transverse and 1.3 mm anterior-posterior. The last MRI indicates a measurement of 8.7.
I am seeing Dr. Jennifer Maw in San Jose, CA. Dr.Maw has in the past suggested a watch and wait plan. Or she said I could have the tumor removed surgically if it is bothering me so much that it is affecting my quality of life. This is bothersome because I understand the recovery period can be quite long.
I am waiting to hear from Dr. Chang at Stanford to see if I am a candidate for the CyperKnife surgery. I'm also going to see Dr. Blevins at Stanford for another opinion.
I am told removal would mean months of PT to regain my balance but even with therapy I would probably not be able to walk on uneven surfaces. Being an avid hiker and skier this would affect my quality of life so I am hesitant to do anything. Hopefully the docs at Stanford will have a plan.
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I know this is an old post, but I had great results!
I had my 1.4cm tumor removed 2 years ago with Middle Fossa with Dr. Friedman and Schwartz at House. They completely preserved my hearing (only had about 10% hearing loss pre-op), and had no facial or balance issues whatsoever! I was back to work in 6 weeks, and haven't looked back! My advice is to stay positive, do as much research as you can handle, seek the advice of specialists who have a lot of experience with our rare ANs, and make the decision that feels right for you!
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I hope your surgery went well!
I had AN removed in 1992, at that time I had 2 surgeries because after the first I started leaking cerebral spinal fluid from my nose and the doctor had to go in and fix the leaks.
Other than that the only things that really were left over was that I am deaf in my right ear, my balance is not good, and I have very occasional head and neck aches.
I never bothered with a hearing aid because I can hear fine (unless there are distractions like loud music, talking or water running). Only thing is I cannot tell what direction the sound is coming from, which is annoying sometimes.
I hope things work out well for you too!