18yo with a 3cm AN. How do I cope?

[Rhefitzy]

Hello all,
I'm not too sure about the statistics, but I'm assuming I'm pretty young to have an Acoustic Neuroma (18). Therefore I'd really like to hear from people my age (or around it) who have coped with it. Not to seem melodramatic but I am worried about how people will treat me after the Retrosigmoid surgery. I want to be a Vet and I've been accepted to The University of Edinburgh in Scotland for September, (well its conditional so I need to meet the grade requirements in my final exams in June). I'm so exited to go but my surgery is in July and because of the size of the tumor, the doctor says I will have facial paralysis after the surgery, the question is simply how long it will take to go away, if at all . Anyway I am positive and hopeful for the best possible outcome.

I'm really scared that people will meet me after the surgery and treat me like I'm disabled or ugly, not to be vain but I don't want people to be apprehensive about my appearance and not approach me because of it.

Are there any suggestions on how to cope or lessen the effect on the facial or hearing nerve?

Kindly
Rhea F.

[LisaM]

Hi Rhea.  I'm well beyond 18, but wanted to respond to your post anyway.  Where do you live?  The skill of the surgeon you choose has everything to do with your outcome, along with your feeling at ease and confident about going into surgery.  I just got diagnosed April 14th and am struggling with the idea of surgery.  Fortunately I live in Los Angeles where I have many skilled surgeons to choose from.  Facial paralysis is a risk but there are many surgeons who have great track records of avoiding that risk.  In my research, hearing preservation gets pretty iffy with tumors over 2cm.  I spoke with a woman who had a 3 cm tumor and had surgery (Dr. Shahanian - Los Angeles) with no facial issues, just hearing loss.  For her this was difficult because she went into surgery with perfect hearing.  Nothing you have posted is melodramatic.  It's a pretty big deal to have an AN... especially at 18.  I'm sure you will hear from others who have been in the AN world much longer than I have.  Take your time, do your homework and find the best surgeon to do the job.  Brain surgery is not something to rush into unless your life is at stake.

[Rhefitzy]

Dear LisaM,

My parents are very much interested in the surgical process and I am booked to have my retrosig July in Johns Hopkins Hospital in Baltimore.
I think because of my balance and the size of the tumor, they want to do the surgery sooner than later. Thank you for responding, it really helps.

Rhea F

[chelsmom]

Hi Reha,

I'm so sorry you and your family are going through this!!!  There are a few young people here that have gone through this with large AN's and are doing well since their surgeries.  My daughter Chelsea is one of them.  She was 17 when diagnosed June 2006) with a 5.5+ cm tumor.  She had a lot of complications after her surgery because of the location of the tumor but she eventually recovered and did not have any facial paralysis.  That was the Retrosigmoid approach. Because they were unable to remove all the tumor she had radiation treatments in the hopes of stopping the tumor from growing.  Unfortunately there was regrowth and in 2009 she had another surgery to try to remove as much tumor as possible.  This surgery was Translab and she was left with facial paralysis.  The tumor had wrapped itself around the facial nerve and although the nerve was left intact it was quite damaged.  This last March she had a major surgery to try and innervate the facial nerve(s). This process takes time to heal and see any results.  She will have the second phase of this surgery in March 2012.  The good news is...life goes on.  through it all she would recover and get back in the game of life.  Just this last Saturday she graduated with her degree in mathematics.  Her next step is to start her student teaching in Aug. and finish in Dec.  She still isn't sure she wants to be a teacher and said that maybe she'll go back and get her Masters of Engineering. 

I know how horribly scary and devastating this diagnosis can be.  5 years ago when she was diagnosed I thought this was the end of the world.  I was terrified.  But with the wonderful and skilled team of caring doctors and a strong support group we all made it through.  You are fortunate to be going to a great hospital for your treatment.  If I remember correctly, Johns Hopkins is one of the top neurosurgery hospitals in the country. 

As far as being able to head off to school in Aug/Sept you might be rushing it.  This surgery takes a while to recover from especially when your about to take on your first semester of college.  You might check into the possibility of deferring your start date once you have been accepted.  Because of Chelsea's complications she waited until spring semester to take one class to see how she would do.  She then started that fall with a full load of classes and although she was often fatigued, she did okay.  I know you will be up and moving forward with your life in no time at all.

I will be praying for you and your family.  If any of you have any questions please feel free to email me.  I'm sure Chelsea would be glad to talk to you if you would like.

Take care of yourself,
Michelle

[LisaM]

Which doctor are you booked with at Hopkins?  Check out his/her prior patients.  Ask for patient contacts and talk to them.  What are your balance issues?  From what I have gathered, there are two vestibular nerves (balance nerves); superior and inferior.  Apparently ANs usually start in an area that is sort of like a junction box of nerves, on the superior nerve in the inner ear canal.  Then the tumor grows outside of the canal and pushes into the brain stem and cerebellum.  The surgery almost always sacrafices the superior nerve but some surgeons leave the inferior nerve intact while others feel that cutting both nerves is better as the brain and the other parts of the balance system are able to better compensate with no nerve.  Don't be afraid to have your own opinion about this.  You are studying medicine.  Use this opportunity to learn from your own experience.  Be proactive!  Keep us posted.

[steph28]

Hi and Good Morning!

I had my surgery in Oxford - John Radcliffe followed by GK at Sheffield.

I was 28 when my AN was found. It was classed as very, very big and my surgeon thinks it would of most likely started growing when I was 13, but because it had grown so slowly the only issue I had was hearing lost on the AN side, but looking at my MRI scans it looked like I only had half a brain as it had pushed it over so much.

To be honest I am not 100% sure, which surgery I had all I knew was that I needed surgery. They were able to remove 70% of the AN, however I am know SST on the AN side and I do have facial weakness. It has know been 18 months and compared to just after the surgery were I had no movement down the AN side of my face, life is going good. I can be completely honest with you and it was Children who would starr at me or old people (I did have my right eye botoic's shut for the first 3 months) anyway people wont treat you differently. New people that you meet will not know the difference.

Anyway most importantly dint let this stop you from achieving your goals. Study hard and do well in your exams. At the end of the day its what inside that counts, not how you look. if you do end up with facial issue (I must stress everyone is different and has a different story to tell) you will be fine, the experience has changed my point of view on life, things could have been a lot worst.

I am yet to know the outcome of if GK has killed the remaining part of the tumour I will not find that out until Feb 2012, but I am sure I will come to terms with what ever the outcome is. I know my face will never be 100%, but I have a small smile now and its so nice to be able to use that small bit.

take care

Steph

[suboo73]

Rhea,

I read your post and want to say Welcome to the Forum - the folks here are FANTASTIC!

I am so sorry you have to go through surgery at such a young age - with youth on your side, I pray that your surgery and recovery will go well.
There are some wonderful, experienced doctors at John Hopkins.  I met Dr. Tamargo for a surgery consultation and he is very nice.  Will he be the neurosurgeon on your team?  Also, know of one young lady who had surgery with Dr. Tamargo and did very well.  Her name is Kim and she lives in the Washington, DC area.

My thoughts and prayers are with you and your family during this time.
Take care and keep us posted on your progress.

Sincerely,
Sue (from Virginia)

[cindyj]

Hi, Rhea and welcome...here's a link to a recent thread/topic from the mom of one of our younger "members."  Danna is 14 (she may be 15 now?) and just had AN surgery last Fall.  I'm sure if you contact her, she'd be happy to talk with you.  You can send her a personal message/PM by clicking on the IM icon by her name.

Best to you!

Cindy

[mk]

Hello Rhea,

I am sorry that you are going through this at such a young age. So if I understand well you are prepared to travel for treatment. I am not familiar with the doctor's at Hopkins, they are probably very good, but I didn't like it when I read that the doctors said that "you will have facial paralysis", as if they are certain. Do they base this statement on their stats, or on the literature stats? Do they mean "paralysis" or "weakness"? Have they discussed the option to leave a tiny portion of the tumor if it cannot be safely removed from the facial nerve?

Here is a brief account of my story: I had a 3 cm AN, which was previously radiated by GK. So a more difficult case than yours. I consulted with many doctors. One gave me 100% chance of paralysis. The other 3 gave me 30-50% chance of paralysis. The fifth told me that there is a very high chance of temporary weakness, but based on his data, 5% for paralysis. Guess who I went with - the last one and I ended up with weakness that is unnoticeable and actually has improved since surgery. My point is that there is a wide range of skills and expertise out there - since you are willing to travel, there are many facilities with excellent expertise and reputation. The House Ear Institute comes to mind, but there are many other good surgeons that have been mentioned in this forum.  Of course there are no guarantees, but if you are not satisfied with the opinions that you have heard so far, make sure to consult further. Many of these centres offer consultations for free.

Regarding hearing, unfortunately hearing preservation is much more difficult the larger the tumor is. But many of us have adjusted well to it, and there are also hearing aids like the BAHA that have been proven very helpful for those who have not.

Good luck with everything, don't be afraid to ask as many questions as you want.
Marianna

[RichB57]

Hi Rhea,

I agree with the folks saying you should talk to several doctors.  I had seen several documents on the Internet saying that a facial nerve "had to be cut" in order to remove an AN.  I had a 1.5 cm AN removed 6 weeks ago at Mass General in Boston, and when talking to Dr. Barker, one of the surgeons involved in my case, before my surgery if he thought they might have to sacrifice any nerves and his response was he could see no reason why anyone would have to do that.  That was exactly what I was hoping his response would be. 

After my surgery, the doctors said the tumor was heavily involved with the facial nerve, but for the first four days afterward there was no facial paralysis at all.  I did end up with paralysis a few days later, but I'm already getting some movement back, and the doctors believe it is probably due to swelling and should clear up with time.

The hardest thing I found in finding out what to do about an AN is that there are lots of different opinions about what the right thing to do is, but no one can say what is definitely the best approach.  Every doctor seems to have their opinion.  Some hospitals, such as the House Ear Institute in LA, will do 2nd opinions over the phone.  I don't know the particulars because I didn't pursue it, but I've seen comments in this forum about how great they were.

[CHD63]

I have to weigh in here on the "you will have facial paralysis" comment.  In today's world of AN treatment, that should not be in the pre-op conversation.  No doctor can say for sure whether you will have facial nerve involvement until they actually get in there and look at the tumor's location in relation to the facial nerve.  Too many factors involved.

I recently had my second AN surgery and naturally had concerns about a higher risk of facial nerve involvement because of the inevitable scar tissue from the previous surgery.  I point blank asked the doctor before surgery what he would do if the tumor and/or scar tissue was stuck to the facial nerve.  His reply was "I know what I would do but what would you want me to do?"  I, of course, said "save my facial nerve."  He said "that is my answer, as well."

Point is, if you are not happy with the pre-op answers to your questions, look for second or third opinions before agreeing to a procedure.

By the way, I have no facial paralysis and they removed all of my tumor.

Best thoughts and welcome to this forum.  Clarice

[sterry]

I'm not 18, but my tumor was 3.7 cm and I had a trans lab by great surgeons at the HEI and I have NO facial paralysis ! It can be done, keep searching:)
Susie in Wyoming

[Rhefitzy]

 
Thank you everyone for all of the support. I am booked to have my surgery done by Dr. Tamargo and Dr. Francis in Johns Hopkins Hospital on July 5th. I am confident in the doctor's ability there and I trust that Dr. Tamargo will do his best. We asked about the translab approach but because of the placement and size they do not think it is a good option. I'm still terrified though, all of this just feels like too much to handle.

Thanks again,

Rhea

[phx]

Hi,

I was diagnosed a year ago, at age 23. I had a 4 cm tumor. Surgery only removed 30% of it, but I had cyberknife done last August. I was diagnosed in my first semester of grad school. I finished the term completely fine even though I had balance and vision issues. I worked too and it seemed to turn out okay. I didn't go back the following Spring because I would have to miss 6 weeks of class, so I figured it might be a better idea to take it off. I returned in the summer and fall. I did fine then too. I started this past semester, but had to withdrew because of severe problems due to hydroceaphalus. I had to have a VP shunt inserted due to that. I made sure I communicated with instructors coworkers. All, if not most, of them were very understanding. The only thing that I really noticed after surgery, and others around you might to depending  on how well they know  you, is that you may not be as you were with social situations.

Congratulations on your acceptance into the University of Edinburgh. I hope that that all goes well for you. I found it helpful to let instructors know what was going on with me. I didn't need to tell them the whole story, just that I was diagnosed with a fairly large brain tumor. They pretty much understood from there.

As for the facial paralysis, I didn't even notice much of it until after I had radiation. I have a little bit of it, but it's not that noticeable unless I laugh really hard. I feel like it is, but I think most of the times it's just me thinking that it's noticeable. I had the same worries as you about how people would treat me differently. Most of the time this happened, I think it was because they were worried about my "condition". As I showed the people around me that I was "normal", it didn't happen as much anymore. "Brain tumor" does sound scary. I actually referred to mine as "the tumor in my ear", as if saying that made it less worse than what it was.

Even though having a brain tumor is not great, I beleive that I've learned a lot through this journey. It's great to have support and this forum does a great job of that. If you'd like to talk, feel free to email me.

PHX







Hello all,
I'm not too sure about the statistics, but I'm assuming I'm pretty young to have an Acoustic Neuroma (18). Therefore I'd really like to hear from people my age (or around it) who have coped with it. Not to seem melodramatic but I am worried about how people will treat me after the Retrosigmoid surgery. I want to be a Vet and I've been accepted to The University of Edinburgh in Scotland for September, (well its conditional so I need to meet the grade requirements in my final exams in June). I'm so exited to go but my surgery is in July and because of the size of the tumor, the doctor says I will have facial paralysis after the surgery, the question is simply how long it will take to go away, if at all . Anyway I am positive and hopeful for the best possible outcome.

I'm really scared that people will meet me after the surgery and treat me like I'm disabled or ugly, not to be vain but I don't want people to be apprehensive about my appearance and not approach me because of it.

Are there any suggestions on how to cope or lessen the effect on the facial or hearing nerve?

Kindly
Rhea F.
[/quote]

[jk327]

So sorry to hear about your AN, but this is a wonderful place to learn more about it.  I was diagnosed with a medium-sized AN in August of 2010 at age 20, right before I began my junior year of college.  My symptoms weren't too severe at the time, apart from the hearing loss, so I continued with school.  My symptoms got worse and worse (and so did my grades because I was so dizzy all the time) throughout the semester, but I was able to finish up the semester, all be it with damage to my GPA.  Ha.  I had the retrosigmoid surgery in December (the day after I finished my finals).  After they took all of the dressings off my head and I washed my hair, you couldn't even see the incision because my hair covered it.  (I must credit my surgeon with the excellent hair-cutting skills haha.)  I also  did not have even the slightest bit of facial paralysis.  My surgeons used some equipment that monitored my facial nerve during surgery to ensure that I had no facial paralysis.  You may want to ask your surgeon about this.  It took me a little less than a week to be able to be able to focus/concentrate/stay awake long enough to read a book.  I had planned on returning to my college classes in January and would have been completely up for it had there not been complications.  (I was strapped to the operating table too tightly and it caused severe nerve damage in my legs.  Both legs are now numb from about mid-thigh down to my toes.  I had to learn how to walk again and I still have to wear a brace on one leg.)  I am very much looking forward to returning to college in August.  I would definitely recommend talking to your professors about your surgery.  Also, you may want to look into any disability services on campus in case you have trouble concentrating for a while.  Generally when I told people that I was going to have brain surgery/ was deaf in one ear they were usually worried about my health, and apart from that did not treat me any differently.  I always try to joke about making people I don't like stay on my "deaf side" so I can't hear them and things like that, and that generally lightens the mood.  Should you have some facial paralysis, if you don't freak out about it, chances are other people won't either.  I know people look at my leg brace and wonder about it, and if they ask, I tell them about it; otherwise, I just go on about my life as usual and ignore the brace.  Overall, people tend to be more caring and concerned than judgmental about the changes the tumor may cause in your life.  I found that the more knowledge I gained about my situation, the better I felt about it.  I hope this helps!  If you have any questions about anything, feel free to contact me!  Best of luck!
Jamie