ANA Discussion Forum
General Category => AN Issues => Topic started by: InnerGrace on April 29, 2016, 06:15:40 am
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Hi...my name is Laura and I was diagnosed yesterday as having an acoustic neuroma. It all started February 6th of this year when I had a sudden loss in hearing (mild loss) and tinnitus. Looking back over the past year I can say that I've had balance issues but nothing that alarmed me. Thought it was my shoes. I really don't have a lot of details right now as I am just scared poopless and just trying to wrap my head around the fact that this is my life now...what I must deal with....I didn't know the questions to ask in my state of fear yesterday except if I'd lose my hearing. That concerns me the most which seems silly....I should hear from my ENT today as to a date for a meeting with which will be my neurointologist. I am in Pennsylvania an will be receiving any treatment in Pittsburgh. Right now I'm just reaching out to where I can to find some peace/acceptance/knowledge... I am 46 ... Single mom with 3 daughters at home...an older daughter that lives away with her daughter..(my little Harper) I have my faith in God...but....still scared.
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Sorry to hear of your condition. I am just now returning home from Pittsburgh after gamma
knife surgery with Dr. Lunsford. I was terrified - but it was a very simple procedure. The outcome
will unfold over time, but I'm going to remain positive that, eventually, all will be well.
You will learn much in the coming months from this forum, and depending on the size of
your tumor, you will have pleanty of time to research all the options until you decide on something
that seems right for you. I have faith in God too. Having faith isn't the absence of fear, but
trusting He is right there with you through every hurdle. God bless you and may you be comforted
as you seek your path through this challenge.
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I am sorry you had to join our AN club.
When I was diagnosed my youngest started wearing a butterfly necklace I had given her years ago. She was away at college and had to process that I had a brain tumor and would be having surgery. She told me that she felt that I was with her when she wore the necklace. You know this process is way too scary for us but worse for our loved ones. I think I had the easy part. My AN was big enough that I had to do something and I chose surgery.
Maybe it would help you and your daughters if you had matching necklaces. They could look at the necklace everyday and know you were thinking of them. Take care.
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scared poopless
ewew.
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I just ran to my ENT office and got my report. When I found out yesterday, I was in such shock that I didn't take the time to ask too many questions....however, I think he told me what size it was.. I just didn't get past the word tumor... the tumor is 2.4 cm. I'm not real sure where that puts me.. That is a lovely idea about the necklaces for my daughter.. or something similar.. it's going to be a bit tougher for us, I suppose, as I have 50/50 custody with their dad.. and we do week on/week off... they usually go back to him on Friday night's.. (tonight would be that Friday night) but he is letting them stay one more night as I don't really wanna be alone right now. I am, too, sorry that I had to join the AN club.. but... it is what it is, and it's not something I can escape. So I just need to start getting my head wrapped around it and getting myself informed. Thank you for your replies.
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I have faith in God too. Having faith isn't the absence of fear, but
trusting He is right there with you through every hurdle. God bless you and may you be comforted
as you seek your path through this challenge.
For those of us who don't believe, we hope you get well soon too!
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Sorry for joining our prestigious group. 2.4 cm is the upper end of a medium size tumor. Large is is more than 2.5cm. Keep in mind I read many post (including me) over 4 cm and a member posted few days ago with a 6.5 cm surgically removed tumor (crazy size) and he is doing great.
You are in the group that needs to decide on the next step. Those of us with really large tumors had no choice but surgery. You should have options for watch and wait (maybe), radiation (cyber or gamma) or surgery. Go through the forums looking for people with tumors your size. This is the stressful time.
Use the forum search tool, for Pittsburgh and you will find doctors in your area.
Experienced doctors are the number one rule. Many of us have traveled far to get our choice of doctor but this all depends on insurance and other factors. For example, House in LA is one of the most popular choices. I went to John Hopkins which is closer to you. However, I've read great posts on the care in Pittsburgh.
As noted, this process becomes more stressful for our loved ones. As scary as it for you, I'm sure it will be worse for your daughter. Tumor + brain = scary. AN seem to follow no set rule but they are NOT cancerous and tend to grow slowly.
Pfeel free to post any questions.
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One item I learned with my diagnosis. My first MRI found the tumor but wasn't 100% accurate in the diagnosis. As I selected a facility with experience with AN they completed a new MRI and this provided a more detailed and accurate MRI report. Identify the nerves under stress are important when deciding on approaches and possible complications.
You are NOT one in a million as promised by your mother, but 10 in a million. Still an elite group.
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Hi...my name is Laura and I was diagnosed yesterday as having an acoustic neuroma. It all started February 6th of this year when I had a sudden loss in hearing (mild loss) and tinnitus. Looking back over the past year I can say that I've had balance issues but nothing that alarmed me. Thought it was my shoes. I really don't have a lot of details right now as I am just scared poopless and just trying to wrap my head around the fact that this is my life now...what I must deal with....I didn't know the questions to ask in my state of fear yesterday except if I'd lose my hearing. That concerns me the most which seems silly....I should hear from my ENT today as to a date for a meeting with which will be my neurointologist. I am in Pennsylvania an will be receiving any treatment in Pittsburgh. Right now I'm just reaching out to where I can to find some peace/acceptance/knowledge... I am 46 ... Single mom with 3 daughters at home...an older daughter that lives away with her daughter..(my little Harper) I have my faith in God...but....still scared.
Be positive and keep having faith in God.
All problems will go smoothly..
We can only send you wishes you being well
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I am doing wonderful, Soly. Thank you! I had my tumor taken out on May 30th. Just got back from our vacation at the ocean yesterday. Life is good!!! :) I am facial paralysis but I also have faith in God that it will resolve itself.
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Well, it sounds promising- I am 24 months post and I just had a 12-7 nerve graft, an eyelid weight implant and a hearing aide is last on my list and I need to be able to smile a bit. Good thoughts to you keep us posted.
Feline
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I am doing wonderful, Soly. Thank you! I had my tumor taken out on May 30th. Just got back from our vacation at the ocean yesterday. Life is good!!! :) I am facial paralysis but I also have faith in God that it will resolve itself.
My heart goes out to you that you suffered facial paralysis after your microsurgery. Did the doctor say if this would be transient?
I almost went to UPMC for Gamma Knife with Dr. Lunsford but his office canceled just 2 days before my scheduled surgery, claiming my insurance was no longer in network wit their hospital.
Best wishes in your recovery.
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I've been seeing a facial therapist and he has given me much hope. I have already been improving and just today, my smile appeared for a minute....it went away, but.. .it only means it is coming back!!!! I am elated!!!!!! My surgeons told me to give it 6 months before seeing any improvement and it's only been 3 months so.... I'm very optimistic for a full recovery!! Maybe not 100%, but pretty darn close.. the therapist said one of the things he sees a lot is that the forehead usually doesn't come back.. and I'm like... Ya, well, I didn't want those wrinkles back anyway! lol
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I hope you continue your success and make a full recovery. You seem to be in good spirits.
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(http://i1125.photobucket.com/albums/l584/TaeBoDork/14022089_10154510717441554_9012833348218698483_n_zps2r3eflw3.jpg)
This was taken yesterday. For a moment in time, I was smiling.. they told me I may not see anything until 6 months out. Last Monday was 12 weeks out and my mouth is already wanting to smile! I am over the moon!!!
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Great news!
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From another observer's perspective, I definitely see improvement between the photos. That is awesome!!!
When I researched possible outcomes prior to my surgery, I recall Mark Ruffalo (in his video) did not see improvement until 10 months. You are far ahead of many others, so that is a very encouraging sign.
Keep the positive attitude and faith.
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You are doing great, Laura!!! So happy for you. Best wishes on your continued recovery.
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I haven't read all the replies, so I may be duplicating here. If so, I apologize. Getting the diagnosis can be overwhelming and frightening, but take heart. AN tumors are not malignant, so you can take some time to think about your options (of which you will no doubt get lots of information) and decide, one foot in front of the other, what is best for you. The fear is unnecessary, so you can afford to set it down and take the time you need to go forward on this. Be prepared also to get second opinions as needed, if you aren't happy with the information or treatment you get. AN cases vary widely and so do doctors My first neuro-whatever-he-was counseled watch and wait and told me that my symptoms could not be caused by AN. This website and my second neuro-whatever said otherwise. The symptoms I encountered went away with the surgery, so the second doctor was right. Of course, I have had other symptoms with recovery and that is a long road and another story, but I am certainly better off for having had surgery. Hope this helps. Take heart, keep breathing and trust that you are on a path that will lead to healing.