ANA Discussion Forum
General Category => AN Issues => Topic started by: coloradokidd on October 20, 2007, 09:36:34 pm
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Hello, Unfortunately I needed to find your sight. Yet, fortunately you are all here with a wealth of information. My 17 year old has been diagnosed with AN. I have googled until I am crazy and have not found any info about teenagers with AN. His tumor is small 6mm, yet he is losing hearing quickly. We have sought 2 opinions and received 2 different suggestions. The first Dr. says translab is the only way to go due to the position of the tumor. The other Dr. suggested Gamma Knife. We are so confused, one Dr says he would not even consider Gamma Knife on such a young person. So what are everyone thoughts? Does anyone know of a young person having either procedure at such a young age. I am a walking basket case right now, and am trying to be a good mom to my other 5 children. Any info would be greatly appreciated. GO ROCKIES!
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Hi Coloradokidd,
I'm sorry you had to even look for this site but you've come to a very good place to get information and support. There are several teenagers here that have had AN's. Most of them were very large tumors. There is another 17 year old, Eric, who I believe is also from Colorado. His moms forum name is Robynabc. If you search her name you can then click on her name which will eventually give you her e-mail address. She could probably help you as far as where Eric was treated. His was a difficult case and they are very pleased with the sucess of his surgery and outcome. With your sons AN being only 6mm this gives you a lot of time to do your homework and find the best treatment option. My daughter, Chelsea, was also diagnosed at 17 years old. Her AN was 6cm and compressing her brain stem. She went through some very difficult surgeries with many complications due to the size of the tumor. This was followed 4 months later with 6 weeks of daily radiation as they weren't able to remove all of the tumor Like I said, most the kids here had large AN's and didn't have any options except surgery. A couple other teenagers that have posted their stories are Taylor and Chris (he was 20 or so when diagnosed). If you have any questions let me know and I'll try and help answer if I can. I know how you feel but take a deep breath and keep searching for what feels like the best for your son. I'll be thinking of you. Michelle
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The long term effects of radiating a benign tumor are unknown. Therefore his age should rule out radiation. If they reccomended translab, then his hearing must be mostly gone. Translab is the safest and easyist surgery, in experienced hands!!
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Well, radiation some times gets a bum rap, based on a "guilty until proven innocent" idea that is applied preferentially to radiation because it is "spooky". There were no long term results to prove trans-lab surgery was safe when it was first carried out - and that evidence took 30 more years after the first surgery to be gathered.
There is now a large body of evidence that suggests strongly to most radiation oncologists that the focused radiation of gammaknife or cyberknife is unlikely to trigger long term effects at significantly higher rates than what happens without radiation. That does not in itself mean it is right for your son, but as one of your doctors has suggested, it can be considered. There are various experts in gammaknife and cyberknife that can be consulted to find out if it would be appropriate in your case.
At 6mm, you have time to do some research, although if hearing is at risk, you you may not want to wait too long (3 months yes, 3 years maybe not). There are some facilities for both surgery and radiation that will give free evaluations, if you can send copies of the MRI and hearing tests.
There are lots of people on this forum who can provide you with information, and also help you deal with the stress of the whole process. Don't be shy; you are welcome to post all you want.
Steve
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I guess I am really nervous about Gamma Knife in such a young person. Are most teens treated with surgery? How hard is it for a young person to handle SSD? My son is a senior and plans on going to college in the fall? How long is a typical recovery at home and when would he be able to go back to school? It is important to him to graduate with his class this spring. I know I am full of questions.......
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Recovery from surgery is usually 4-6 weeks, from what I gather on this forum. SSD is not great by any means, but anyone can make the adjustment, I would think. How much hearing has he lost so far? People on the forum with SSD often suggest that preserving hearing is worth it if it is possible.
On the radiation question, you should contact a gammaknife or cyberknife center, and talk to a radiation oncologist. Or try the cyberknife forum, which has several doctors who answer questions. You need an expert's opinion (or several) on whether radiation is a reasonable choice for your son.
The cyberknife forum is at
http://www.cyberknifesupport.org/forum/
You can also contact some of the doctors directly (Dr. Chang is known to reply to emails on weekends):
http://www.cyberknifesupport.org/about_the_doctors.html
Just ask them straight up, is cyberknife okay for a 17 year old with a 6 mm AN? What would the long term consequences be? I'd be curious to know their answers myself.
Steve
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Hi Coloradokidd,
My daughter was also a senior and found out 5 days before graduation she had a tumor. She walked with her class on Wednesday, met the neuro-surgeon on Thursday and was admitted on Friday. Like I sad, she had man complications and was in the hospital for 3 months. Her recovery was long and slow. She had to defer her first year of college but is now attending the University of Redlands and doing well. Her SSD can sometimes be frustrating but with those that are younger the brain helps to compensate with some of the problems that SSD brings. As far as the radiation, Chelsea's docs at UCLA felt it was best for her to have the Novalis FSR as they are able to use lower doses over a longer period of time. There are a lot of opinions about which is the best-safest-mosr effective, but we totally trust her doctos. One just has to do the research and have a trusting relationship with the doctors they choose and believe in the treatment plan. All My Best. Michelle
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Dear Coloradokidd--
As you can see, people hold strong opinions on all sides of this question. I think that a website that does a good job of providing info is the University of Pittsburgh site at http://www.acousticneuroma.neurosurgery.pitt.edu/index.html
Pittsburgh is a leader in gammaknife radiosurgery and they will generally recommend that, but the site gives plenty of info on all approaches. I would also echo chelsmom's suggestion that you find robynabc (just put that name in the search box). She did a lot of research on doctors in Colorado for her son who had a huge AN, and at last report he had a good result after surgery. Personally, I do not think you should rule out radiation on a small AN because of age. I had radiosurgery at the age of 54, and I intend to be around for a long time.
Mac
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Hi,
I am sorry to hear about your son and the AN diagnosis. I have to tell you
that he is very lucky that you caught it so small. My sons was 45MM. Or
4.5 CM. So there was brainstem issues and the like. Eric was diagnosed
right at the end of his senior year so make up work was not an issue. But
he did defer all of his scholarships to January. The only reason Eric had to defer was
His Paralized vocal cord and swallowing. If he didn't have that I think he may have
been able to attend in the fall. I would say that recovery in the best of circumstances is
2-3 months. I think anyway.
I would really suggest you
get an opinion from doctors here at University of Colorado. They are really
fantastic. If they don't do the surgery they they will at least have really
good information. Dr Jenkins is a miracle worker. They told us at our
last appointment that they have done 3 more large tumors. I don't think they were as
large as Erics, and saved the facial nerve in all of them. In fact Dr Jenkins said That Eric's falls in the
top 15 largest he has ever done. But Eric also falls into the top 5% of best recoveries too. He also was the
only one that had a vocal cord problem. Every case is different. The fact that your son's is small is
really good. I know it doesn't seem like it but really it could be way worse. Ask Chelsea's mom.
http://www.uchsc.edu/otolaryngology/faculty/Jenkins.html
Eric is deaf in his ear. That really is the least of the problems. Losing
hearing is pretty common. But I know our docs at University prefer the
retro method and you have a better chance of saving hearing that way. I
would definetly call them. They will know who would be best for the
surgery. They are both heads of their departments. We cannot say enough
about their skill.
As far as making our decision it was difficult. Because of the size of
Eric's tumor we had to hurry and had to have the best. It was down to them
or House Ear Clinic. I felt House was pushy and I didn't feel 100%
comfortable. I felt like the guys at University were the best but I felt
like I should "want" to go to house. It was agonizing because House made us
feel like if we did not go with them something bad would happen. I listened
to myself and my intuition and finally knew to go with Jenkins. I will
warn you his bedside manner is terrible but he is a very skilled surgeon,
in my view that is the most important thing. And he really is a caring person just
really, really down to the facts kind of guy. He called from out of the country after
Eric's surgery to find out how he was. Not that house is bad. We would have gone with
them if we did not have the University of Colordao guys. But I did not agree with
how they made me feel about it during our decision. After we told them who we
had picked they supported us and wished us well. I think House is very good too.
Also, Jenkins has been doing these for 25 years. He knows about the
radiation and the like. I would definetly be concerned about radiation at
your son's age. I know our doc didn't want to do radiation unless
absolutely necessary. So, once agian I would call Dr Jenkins and see if he
can give you any information. I think that radiation may be okay but I feel at 17 there is no
reason to risk it unless absolutely necesary.
In my humble opinion the guys at sweedish are not the ones that have the
most experience. If it were me I would not go with them. Dr Hagerty is a
very sweet person and I have talked to him. I felt he was pretty
knowlegable. He did not feel he had the expertise for Eric's but that is
because his was gigantic as one doc put it.
Eric is doing very well and his age helped him recover fast. The fact that
you guys caught yours so early is great. He has a great chance of saving
everything else. I think the hearing thing is something you will have to
get used to. I guess it didn't bother us as much becuase my ex has been
deaf in one ear and he does fine with it. We were used to it because of him.
Eric has a few problems with loud noise. We went to a loud bar the other night to watch the ROCKIES.
(Yaay Rockies) and Eirc got agitated and we had to leave. It took him a couple hours to
feel better. But really Eric has had asthma from a really young age and he just takes this
stuff in stride. Part of the reason it took us so long to catch the tumor was because
He doesn't notice this stuff. I found out one day when we were sitting on the floor
petting the dog and he was drooling. I was laughing at him for drooling and he said, " I do that
sometimes" then I was like, "why, and he said he had the numbness. Even then it took us 2 months to go to the doc.
Really, the SSD has not
been bad at all. He rarely brings it up. He was a little sad at first. But you know, we got an adaptor for the ipod and
that is all a teenager needs. LOL. Really, Eric did not have any hearing loss before the surgery so it was sort of worse for
him. He lost it all at once.
With your son's tumor being so small I am wondering if you couldn't wait
until the end of the year.
I hope that helps. I am glad to help in any way.
Sending sunshine,
Robyn
PS. Aren't you so cute wishing the Rockies well.
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For me, the main issue with SSD is not being able to tell where sounds are coming from. Finding the portable phone and locating someone's voice can be tricky, but not too big of a big deal. And overall, I don't hear as well as I used to with one hearing ear, but really, it's not that big of a deal. To me, it was a small sacrifice to get rid of the tumor. I had translab, and if I understand correctly, out of the 3 procedures, this procedure allows the surgeon to see the facial nerve the best. You want to preserve the facial nerve.
I had a child who had major surgery for her spine a couple of years ago (severe congenital scoliosis). She didn't get the doctor's approval to go back to school until 6 weeks later. However, it took 9 months for her back to heal to where she could run or catch a ball. Our school had a homebound program and even provided a tutor to come for those 6 weeks. So she was able to keep up with her classwork, but she was able to do it at her own daily pace which was great.
Most people recover in 4-6 weeks from the surgery with no ill effects (except for SSD). Remember that many who post are people who have had problems and that those who have had surgery w/NO problems may not have a reason to post. Don't let that scare you. If you do choose surgery, choose the best doctor in the US that your insurance will cover. And if you find THE BEST doctor, and your insurance says they won't cover it, don't stop there. Just give the surgeon another call, and they can work with your insurance company for you. Truly, this is one of those surgeries that the experience of your surgeon means EVERYTHING. Try to find a surgeon who has done several hundred AN surgeries per year. Ask about the outcomes. You'll need to interview the surgeons.
However, because my own tumor was large, radiation was not an option for me. You might want to research the radiation option as well. I would just check your child out of school, and spend a day driving from one doctor's office to another getting opinions, and interviewing each surgeon or gamma knife specialist. Then mail your MRI CD with a letter containing your specific questions (based on your research) and start mailing it out to the BEST 2 or 3 doctors in the US. Some doctors prefer to see the films instead of the CD. It's okay, as they'll send the films back. The week we found out about my tumor, we made an appointment at Emory. After interviewing him, we asked this surgeon if he knew any gamma-knife specialists, and there was one right down the street. We called, and they took us right in. Then this doc gave us a different surgeons name... and we were able to see several doctors in one day this way (with out an appointment -- they just worked us in). Maybe that would work for you... I don't know. It was helpful for me b/c I was able to knock out most of my questions, get several different opinions, and I was building my information base. After that, I sent a well-educated letter (I had done my homework) to an extremely highly-regarded surgeon in the United States with my films and got an expert opinion. When he called me to discuss the options, I could actually understand what he was talking about, b/c by that time I had already read so much and talked w/so many other doctors.
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Thank you so much for all of your support and information. This is a great place. We meet with the 2nd doctor on Friday to go over the test results. Time feels like it is moving so slow. Have a great day. GO ROCKIES!!!!!!!!!!!!!!!!!!!!!!!
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hey,
i am not a whole lot older than your son. I am 21 years old.
my name is clifton and i live in san antonio, texas.
I just went through everything that your son is about to experience and i got a lot out of it. It made me a better person.
I too was led away from everything except surgery, for good reasons, and my doctors suggested trans lab because of the position of mine as well. I had surgery on the 14th of september and im pretty much fully recovered right now.
If your son has any questions, or would like to talk to me personally, just send me a private message or email and i'll provide you my phone number.
hope i can help, i know everyone is a little scared and stressed right now but just breathe and everyone will be ok. :)
thanks!
ps: i hate baseball but GO ROCKIES!!!
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Clifton Thank you so much for your post. It is nice to hear there are some young adults that have gone through this. Robynjabc and Chelsea's mom have also had great information. Yours was done not too long ago. How is your recovery going? How long until you can go back to daily activities? I will pass your name on to my son. We meet with another dr. on Friday and hope to have a decision made. Did you consider gamma knife? Thanks so much. By the way we love baseball. all 3 of my boys play and unfortunately could not get world series tickets! Hope you are feeling well.
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Well we went to our 2nd opinion Friday, (we had seen him before but went back after more through testing). He is still convinced the gamma knife is the way to go. The other opinion said our son was far to young (17yrs), to recommend the gamma knife procedure. I just have not had that gut feeling of what to do. For those of you that had a chioce of what procedure to do, how did you know? I keep praying about it. In the mean time my son is so stressed out . This is such a tough decision.
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I had a choice of gamma knife and surgery and chose surgery (retrosigmoid to be exact). It's a hard decision to make and it pretty much all boils down to personal choice. I didn't want radiation inside my head - it just wasn't for me. I also didn't want to live my life with a tumor inside my head - even if it was "killed" by the radiation. There were obviously numerous factors, but in the end I just wanted the tumor removed. Although surgery didn't sound like a picnic, I got to a place where I had complete confidence in my two surgeons (neurosurgeon and neurotologist) and I just somehow knew that surgery was right for me. Others find their comfort level with radiation rather than surgery and I think that's commendable; everyone is different.
Your son is still young, but he's a young adult and it's his tumor. Has anyone asked him for his opinion? It's a hard choice at any age, and I'm not saying that he should make the final decision, but maybe his opinion/feelings should be considered in the decision.
Just a thought,
Jan
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Yes, we are definately including him in this decision. In fact we have told him we would support the decision he makes. Fortunately, he REALLY wants our opinion. I am leaning towards surgery, yet the radiation does still sound appealing. Thanks, for your help....
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It is a tough call. What data have the doctors presented to support longevity for such a young patient having their treatment approach?
Another question... with a person in the third, fourth, or fifth decade of life wait-and-watch would be suggested for a small tumor. Has this been considered? A 17 year old could go far in three or four years of higher education before the tumor would have to be addressed.
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Yes, the 3rd doctor suggested the wait and see, but his hearing is decreasing quickly and frankly my son is a basket case with all the unknown. The Dr. said he should have a normal long life with the gamma. However for every piece of data there is a contradictory data as well.
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coloradokidd,
i just sent you a personal message.
let me know if you need anything
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Hi kidd and welcome.
Well, as you can see, you definately have a vast array of thoughts/inputs/opinions. Once you research, you will be able to come to terms with your own personal decision as this is highly personal. All options are viable, including radiation (as a means to help maintain current usuable levels of hearing as well as certain forms of AN microsurgery). As you know, no treatment option is 100% and risks involved with all choices. So, please do your homework as you have been, but most of all..... as you can see... we are all here to help!
Btw, YAY BoSox! (sorry, had to toss it in! :D )
Again, welcome.
Phyl from Boston
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Ok, we finally made our decision. Our son will have Translab surgery on December 3. It was a tough decision but hopefully the right decision. So onward we go... Any tips or things I need to do beforehand? please let me know. when will this lump in my throat go away? This is not suppose to happen to my boy. Sorry for whining, I have to be so stong and just needed to vent. Happy Halloween Everybody
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Dear coloradokidd,
Well, I am/was 32 when I was diagnosed with my tumor. My tumor was the same size 6mm x 4mm, however, I did not have the hearing loss that your son is experiencing. I woke up with the room spinning. I, too, received different opinions from different doctors, the same as your son. One doctor stated that it was too small to do that kind of a surgery, and that radiation was the way to go. Another doctor stated that I was too young to have the radiation and to deal with the tumor for the rest of my life, that I should just have it removed. Yet a third doctor finally told me that I would only be rid of the vertigo if I had the surgery, so that was the way that I went. Unfortunately, to my surprise, I woke up completely deaf in the right ear, and part of the tumor had to be left in to save my facial nerve. But, on the lighter side, after the first 4 days post-op the dizzy spells were gone.
It took me 6 1/2 weeks before I went back to work full time. During that recovery phase, I did work with a physical therapist to work on my balance, but I had balance/dizzy issues from the very beginning, as opposed to the hearing loss. I went three months later for the implant for the bone anchored hearing aide, and my 3 month healing time for that is almost over!! The Monday after Thanksgiving, I go to get the processor hooked up and turned on, so I am pretty excited about the thought of having some kind of hearing on that side again. I do well with one on one conversations with the SSD, however, sometimes restaurants and group gatherings are a little difficult, so I am hoping that gets better.
It is a very difficult decision to make about which treatment to choose, because there are adverse effects (complications) to each option.
Good luck to you and your son,
Tonya
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Hi colarado,
When I was in California for CK radiation (by the way, after about a month I just knew that was the right choice for me), I met a woman who revealed, after about half an hour, that she was deaf in one ear. I would not have guessed had she not told me. She went suddenly deaf about fifteen years ago, had an MRI and the whole works, but it was not an AN, and the docs just chalked it up to a virus infection. While I'm sure she would like her ear back if it were offered, she had obviously completely adapted to hearing in just one ear.
A year from now, your son will be the same way. It will all be a vague memory, with the one sided hearing as a permanent reminder. He will do just fine, and will enjoy all the experiences of a young man growing up in the world, and will no doubt make a good life for himself. As for the lump in your throat, well you are a mother, and you will be forever, so you will just have to get used to it. :)
Best wishes to you both,
Steve
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My son's tumor was diagnosed when he was 16 (he's 18 now and still recovering). His was 5 X 7 cm - gigantic - and he had it partially removed surgically, and had the remaining tumor zapped with radiation to prevent it from further growth. Drs all said (University of Colorado hospital did all procedures) his chances for cancer from the radiation were very small but would not show up until he was 40 or 50 years old. That's all we know. The damage is done, but we felt comfortable with what these drs were telling us.
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Dear Kidd,
I am 37 years old and have NF2. You are probably not familiar with this disease, but I have an AN on each side. I was diagnosed in 1994 when I was 24 years old. I had surgery to remove the right AN because of hearing loss. The tumor was very small (not sure of the size, but possibly smaller than your son's) and they were able to remove the tumor without causing damage to my hearing or facial nerve. They did remove my balance nerve, however, so a little wobbly. I am still able to golf, play basketball, etc. When the left side grew, they noticed that the right side was not totally gone. They recommended radiation on that side because radiation gave me the best chance to preserve hearing. I had gamma knife radiation done in 2001. I just had my annual check up and the side that was radiated has not grown at all. But, the side that I had the tumor "removed" has grown to 16mm. They are suggesting to have something done on this tumor again. My sister has the same disease as well as my mother.
I guess my point is, even with surgery, there are no guarantees. Not to scare you, but these tumors sometimes do grow back, or they do not get all of the tumor. If I do decide to have something done with the right side, it will definitely be radiation. If it grows, then I will have surgery.
Just my opinion.