ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: iz2014 on March 27, 2014, 02:16:31 pm
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Hi, I'm 27 and in the UK. Today I finally found out the size of my AN... it's 3cm and needs treatment. Haven't seen anyone about treatment yet. Just wondered what your stories were... like if you were offered radiotherapy or surgery or both. How was your face after treatment? Any information is interesting to me right now. Cheers.
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Hi! Mine was 3cm, and both surgeons I saw recommended surgery. I did not ask about radiation at the time, but have since learned it's generally not preferred for tumors this size. Others on this site can perhaps speak to this better than I can.
I had complications during surgery, and my recovery is ongoing. However, my tumor was unusual in that it had tentacles, like an octopus, which made the procedure more difficult. We had hoped to preserve hearing but it didn't work out that way. Also, the facial nerve was damaged, but not completely severed. So there was complete facial paralysis on that side for a while, but with time and therapy, most of the nerve has regenerated. I ended up with a wonderful speech therapist who worked on my facial paralysis, and along the way I learned that not all therapists approach this the same way. Some even recommended no therapy -- they were confusing AN with Bell's Palsey. Fortunately I ended up with someone who helped me immensely.
I live in a small city in the southeastern US, and was thankful to find an experienced surgeon within a few hours' drive. Given the complexity of my tumor, the outcome could have been much worse. I am grateful to the surgical team for minimizing the damage while removing virtually all of the tumor. I was also grateful to be so close to home when it came time to leave the hospital, because I had severe balance issues and nausea. I was using a walker. If we had flown, I can't imagine getting on a plane like that. Lots of people do -- there were neuro patients on my floor from all over the world. I think my level of balance loss was unusual (and I recovered well).
Don't know what your options will be in the UK, but I would encourage you to find someone with extensive AN experience. These tumors are tricky, and each is unique. There can be surprises once they get in there, as in my case. But despite the complications, I am recovered from much of it, and am learning to live with the rest -- and I mean live abundantly. It's the strangest thing, but this experience has actually been a blessing in many ways.
This is just my perspective. I hope it is helpful. You will see others with similar size tumors and less complications, with shorter recovery times. Their experience is probably more typical than mine. Each case is unique, and you have youth on your side. There is every reason to expect a successful outcome. Keep asking questions, continue taking care of yourself through nutrition and exercise, and work through the process. Because it is a process. Give yourself time to take it all in.
Keep us posted, and best wishes to you!
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my surgery on my small orange sized tumor was 25 years ago...didn't speak in mm or cm then, but it was on the giant sized end of giant sized tumors. i had full facial paralysis for six months, now recovered to a normal look, although i still see the difference and grieve for "my smile", ssd, tinnitus ( major) and very slight balance issues. had 12 hour surgery that got the whole thing, although, mine as well was wrapped around nerves and had tentacles everywhere.
get the best surgeon you can. it doesn't guarantee results, but it does increase your odds of a good outcome. you may not be given too many options, given the size of your tumor. these can be nasty beasts, but the outcome is not always, or even usually, bad. it made me mentally stronger and gave me more empathy...not exactly bad outcomes.
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I discovered a 2.9cm AN on the right side in April 2011, April Fool's Day. My doctors encouraged me to take FSR treatments, 26 in all, over surgery. I saw some surgeons too who were equally confident, but in the end I chose FSR mostly because I'm a teacher and I was a little worried about problems with my face resulting from surgery. It is now almost three years and my two and a half year MRI shows no growth. The FSR sessions were painless and quick, although I did experience some side effects from swelling, such as dizziness, television, and tinnitus. But things improved and now the only reminder that I have an AN is mild tinnitus. Good luck with your choice!
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Thank you for your replies. I accept surgery may be the only way for me. It's hard to imagine being unable to teach my 20month old little girl to speak because of facial paralysis. I am terrified I will be partly paralysed on one side and a bit useless with taking care of her. My husband works long hours and I do everything for our little girl and him. I can't imagine how things will be for us after surgery. Very scared. Waiting and wondering. ???
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Keep in mind, if you do have facial paralysis after surgery, it is only on the AN side. And it very often improves or regenerates completely, especially with the help of a good speech therapist. My right side was completely paralyzed for almost a year, but I still was able to return to work, and people have no difficulty understanding me on the phone. A great deal of movement has since returned, and I feel the process is ongoing. I still do my facial exercises daily. And last week, I spoke at an international business conference -- broadcast live over four continents, with simultaneous translation into three languages. I hardly even thought about my facial appearance, and the translators had no difficulty understanding me.
All that to say -- your little girl will have no trouble learning to speak from you. What paralysis you may experience -- if any -- will only be on one side, and may be temporary. This diagnosis really is a lot to take in, and my heart goes out to you. But rest assured everything will be okay. It's normal to have these types of concerns.
All my best to you and yours :)
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Thank you for your replies. I accept surgery may be the only way for me. It's hard to imagine being unable to teach my 20month old little girl to speak because of facial paralysis. I am terrified I will be partly paralysed on one side and a bit useless with taking care of her. My husband works long hours and I do everything for our little girl and him. I can't imagine how things will be for us after surgery. Very scared. Waiting and wondering. ???
I was also very scared, so I know how you feel. Mine was 3.5cm and I had surgery with no problems. So yours might work out just as well. The key here is to consult with doctors who have lots of experience and a great track record. Doing this will give you a great chance, and should also instill some confidence that you have done the best for yourself that you can. Best of luck and keep us posted.
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Thank you v37139 and Hokiegal. You have given me hope. :)
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I was back to work as a RN in a hospital setting with no big problem talking with facial paralysis. I might have a bit of a problem with a few letters of the alphabet but can't tell you what now. This also was twice I did this as have had more than more tumor due to NF2. The last surgery had no facial paralysis. So I would not worry about ones talking ability post op if it does happen. For many it is only temporary.
Cheryl R
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iz2014 ~
I'll offer my AN experience in the hope you'll find it encouraging.
I was diagnosed with a large (4.5 cm) acoustic neuroma just about eight years ago, when I was a lad of 63. A few weeks later I underwent debulking surgery to reduce the size of the tumor, relieve my symptoms (dizziness, severe fatigue, stabbing pain at the AN site, loss of the sense of taste) and make radiation feasible. This procedure was adopted in order to give my neurosurgeon the best chance at avoiding facial nerve damage. The surgery (9 hours) went smoothy with no complications and no facial paralysis. My symptoms disappeared immediately. Three months later I underwent 26 FSR treatments that were uneventful and produced no side effects. Subsequent MRI scans over the next two years revealed tumor necrosis and signs of tumor shrinkage. It took awhile but in time my balance improved and the fatigue abated. Today, I'm doing great!
I have to add the caveat that one AN patient's experience (good or not-so-good) is not a guarantee for another patient to have the identical experience as many factors are involved, including the doctor's skill and experience (my neurosurgeon has 30 years of experience with ANs). I was in otherwise good health at the time of my AN surgery and have remained so. I also went into it with a positive attitude, which certainly helps. I assumed I would be fine and I was. Luck? Perhaps, but a lot of folks were praying for me and otherwise supporting me. It helped.
Of course I wish you the greatest success with AN surgery, if that is your option. Please try not to allow your fears to control your attitude as you approach a decision. Meanwhile, try to keep us updated. Thanks.
Jim
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Thank you all for your positive replies. I have found I have days where I am absolutely fine and other days where I worry. But as my next MRI and follow up appointment with the ENT after that gets nearer I am feeling more and more determined to get through this. I am reading more and more positive happy stories about ANs which is fab.
Thank you all so much for calming me down.
Best wishes to you all. :)
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IZ,
Miracles do happen. I am a living example, I had a 3.2 cm round AN and came out (>80%) of retro surgery with NO deficits (facial or balance issues.)
My hearing got preserved and it is at the same level as pre-operative, I have a feeling that it's getting better or I am getting more used to 60+% (leftover hearing) on operative side (Rt.)
My surgery was 2 1/2 months ago and NOT at the house rather at Columbia, NY with a amazing Neuro surgeon "Micheal Sisti"
I am grateful to God for giving me a chance to be boastful on this board....
Thanks!
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Rm516, reading your post made me smile. It's good to remember that miracles do happen. Celebrating your successful outcome with you :)
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That's fantastic rm16, hoping and praying for a miracle myself :)
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Pick a doctor with a great track record and you have a great chance at your miracle. Let us know how your next MRI goes.
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Most docs won't radiation an AN over 3 cms.
At the time I was diagnosed my MRI showed my AN was 1.5 cms so I was given the choice of radiation (GK) or surgery. It was a tough decision, but I ultimately opted for surgery.
During surgery (6 weeks after my diagnostic MRI) my docs discovered my AN was actually 3+ cms. They told me it was a good thing I chose surgery because if I had chosen GK they would have realized during the procedure that my AN was too large.
My surgery was retrosigmoid approach. My outcome was excellent - no permanent side-effects except SSD (single-sided deafness) and only because my AN was wrapped around my hearing nerve and it had to be "sacrificed" during surgery.
Jan
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I had a 4 cm. I woke up with facial paralysis and I'm five weeks post op and it's starting to come back. Start walking and then keep walking post surgery. I have no trouble speaking clearly. They somewhat cut into my neck muscles so I keep moving my neck- this helps recover my vestibular dizziness as well...
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My tumor was 3 cm x 3 cm and I had surgery. I believe surgery is the recommended approach for larger tumors. You will surely be able to teach your daughter how to speak. I met 2 people yesterday who had the same size tumors and have no paralysis. I had total paralysis but regained movement in the lower half of my face. I am sorry you are going through this. Good luck to you.
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Thank you.
Surgery in about one or two months.
This worrying will all be over soon.
Just waiting for NF2 results now.
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Best of luck and keep us posted
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IZ we are praying for you. Your best days are ahead of you too and as Jim said keeping a positive attitude and being educated with experienced doctors and your determination will get you through this difficult time.