ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: jenichol on May 09, 2012, 07:38:50 pm
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Hello all.
I have been encouraged by reading all the posts on this forum. I was diagnosed 2 weeks ago with 23mm×16mm right AN. I am waiting to hear back from scheduler at UVA medical ctr. in Virginia. I am going to have retrosig with Dr. Gregory Helm.
I have been symptomatic for two years. I am a physical therapist and began feeling unsteady, floaty and weird when working with my patients. I had fullness in my right ear and thought I had an ear infection. Was also getting buzzing in my ear and having difficulty hearing. MRI at that time was unremarkable. It was decided that I must be suffering sx of a closed head injury, as I had been head butted by my horse shortly before my sx began. I took some time off work and performed balance exercises. When. I returned to worked I noticed I felt really bad on busier days. I got progressively worse. On 2-1-12, I suffered sudden hearing loss in the right ear. I did not improve with oral steroids or intratympanic injection. Had another MRI that showed the AN. Was relieved in a way to know I must wasn't crazy, although that may have been better.
I went through a period of deciding between gamma knife and surgery. Now that I've decided to have surgery, I am trying to focus on getting past the surgery. I find that if I think about the actual surgery, and try imagining myself in OR, it freaks me out. So I'm trying think past the surgery to the recovery. Knowing that others have traveled this road gives me great comfort and confidence that I can do it too. I have a loving family, great kids, husband of 20 years and a great church family. I know I will have a lot of support. Having ya'll to talk to willreally help as well. There is nothing like talking to others who have been, or are going through the same thing. I appreciate any encouragement and prayer.
Jan
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Jan,
Welcome and sorry to hear your story/experiences...
Yes, we have all been there,, glad you have made up your mind about treatment, that should be a great relief. Don't dwell too much on the surgery as you don't have any control over it anyway ,, put your trust in God and prayer and the Dr team you have chosen and all will be well.... Having a wonderful support system is crutial to getting through this experience successfully... and sounds like you have the best!
Our prayers and thoughts will and are with you as you complete your journey.. Jane
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Thanks so much Jane. I know I'll get through this, not because of me, but because of my faith in God, who I know loves me. My family and my friends and this site , I know, will be crucial. Thanks so much for your encouraging words. I'm getting ready to call To schedule the surgery . I'll let you know the date when I find out. Thanks so much again. Please forgive my typing errors. I am working off of a droid phone. Jan
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Hi, Jan - and welcome ~
I'm sorry you are afflicted with an acoustic neuroma but glad you managed to discover the ANA website discussion forums.
Your AN is very small but as many small tumors do, it is obviously affecting your quality of life. Because you've already made the decision to undergo surgery and have a team and a facility, I'll simply endorse your attitude of looking past the surgery and envisioning your recovery. I did the same thing and it was very helpful. My (Retro) 'debulking' surgery (on a 4.5 cm AN) went remarkably well and my recovery was relatively swift. Later (planned) radiation was also without complications. That was in 2006. Today, I'm pretty much the same as I always was except for being deaf in one ear - which I've fully adjusted to. Some cannot. Fortunately, we have the BAHA. My balance is not quite as good as it was prior to my AN manifesting itself with imbalance symptoms but hardly a problem (I can walk a straight line and don't need to use handrails on stairs).
However, I was blessed to never experience any headaches or any facial nerve problems post-op and no CSF leaks, either. Like you, I had solid support from my wife and (adult) son, my church family and of course, the folks on these ANA forums, who were very encouraging. I'm proud to still be an active part of the forums and want to offer my personal welcome, good thoughts and certainly my prayers for you as you embark on this journey.
Jim
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Thanks for the welcome and encouragement. I sure hope I'll be able to report no complications with surgery. Again I'm focusing on recovery whatever the outcome. My physicians have told me this is a medim size tumor and believe that it has been growing fast. That may account for the onslaught of sx I've experienced. Whatever the case, I feel fortunate.to have treatment options available and I can still look forward to a fullfilling life. All in all feeling blessed.
What a wonderful outlet-- ANA. It appears that there are some real dedicated listeners and supporters here. I hope that I will be able to provide support to others as they embark on this journey. Thanks so much for being there.
Jan
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Jan -
sending prayers and encouragement your way.
I had AN surgery almost 5 years ago. My tumor was 1.5 cms at diagnosis and almost 3 cms when it was removed (approximately 6 weeks later).
I had a very good outcome - only lasting issue is SSD (single-sided deafness) and I opted for a BAHA so it's not much of an issue anymore.
Like Jim, I've never experienced headaches or had a CSF leak. I had a very slight facial nerve problem immediately post op but a single dose of steroids cleared it up.
I recently had my 5 year post op MRI and it was clean. WOO HOO!!!
There is life after surgery. You'll get through this ;D
Best,
The Other Jan
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Hi other Jan!
Thanks for the encouraging words and prayers. Hallelujah on your good MRI report!
With a fast growing tumor, did you have more rapidly progressing symptoms? Did u you have another MRI before surgery or did they tell you how big had gotten after removing it?
Thanks for still being on this forum 5 yrs later. It means a lot- shows how much you care about others. What a great virtue. I mean that to all who have stuck with this forum, to be there for those of us just starting out on this road. I'm tearing up at the thought of people who don't even know me that are showing genuine concern. There is so much more to learn from this that goes beyond the nature of a dumb ole tumor. I understand how important knowledge of this condition is. ANA has offered a wealth of information. I must say, though, that LOVE is the greatest of all. Thanks from the bottom of my heart. You all help to make a heavy load lighter.
Graciously
The newbie Jan
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Hi Jan, I'm glad you found this wonderful group.
My faith is what has gotten me through this journey! Once I made my decision about my team I was able to relax and trust God. I mostly felt bad that my husband was going to have to sit in a waiting room for hours while I had brain surgery. Many people from our church came and kept him company.
You mentioned you have occasional dysphasia. I also had that problem. It got worse for a couple days after surgery, then cleared up completely.
If your church is like ours, you will have many people bringing you meals. 13 out of 18 were chicken meals! LOL. It became a joke with us to see how our chicken would be prepared that night! I was happy when chili showed up!
I pray that you can relax in The Lord during this time.
Blessings, Karen
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Hi Jan .....
Adding my welcome to this exclusive group. ;D Your past two years sound almost identical to my experience ..... right down to initially a clean MRI, to the sudden hearing loss.
I, as well, experienced the rapid growth of my tumor so I had very little time in which to make a decision for treatment.
My church family and the church families of many friends were really the means by which I was so very calm on the days of my surgeries. Many, many prayers resulted in great peace for me.
My prayer for you right now is that your surgery will be scheduled soon and that you will have peace and calm.
Thoughts and prayers.
Clarice
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Thanks Karen and Clarice. My church family is already reaching out and offering meals and help with transportation for my kids. A little about my family- I have four of my own children and we have a foster son in our care currently. My oldest daughter is 20 and is getting ready to graduate from UVA with her BS in biochemistry. Her graduation is May 20th. We are so proud of her. We have homeschooled our kids and she started college at age 15. She wants to go on to medical school after she serves a couple of years in the Airforce. My son is 17 and finishing his Junior yr in HS. My next daughter is 15 and in HS. My youngest daughter is 13 and still homeschooled. Our foster son is 13 and in middle school. His counselors do not feel he needs to be moved from our home with me going into surgery. They think he is fine to stay with us. He is a good kid and is well adjusted here with us. I am so glad he will be able to stay. My husband is very caring and will do anything for me. I also feel bad that he will have sit and wait for me to come out surgery. He has some good friends that I know will offer to be there for him. I bet he'll spend most of that day in prayer. Anyway, my family is such a blessing. The kids keep me going and really are a great deterrent from dwelling on my head. They also are very understanding and cut me a lot of slack cause they know I don't feel that great sometimes. They have been very helpful with chores. We live on a small farm with a couple of horses, chickens and a bunch of other critters. Tonight we have just come home from seeing the movie The Avengers. Wow was is it loud and full of action. My head is really buzzing and wonky. Johnny, my son, drove which was a big help. Well I guess I've bragged enough. I love being a Mom and a wife. The most favorite jobs I've ever had. I must say that some good things have come from this trial. We all seem to be appreciating each other more. We have grown closer and are better able to let the little stuff slide. We're far from perfect, but I think we can see the "big" picture more clearly.
Even so, there still is nothing like being able to share with others who know exactly how you're feeling. My friends and family can empathize, but they can't completely understand what this feels like.
With regards to the difficulty swallowing, that sx has been only occasional but is a very scary feeling. It's like all of the sudden the food or drink is not going anywhere. My kids will say, "Oh no, we know that look on your face, you can't swallow can you Mom."
Thanks for "listening" y'all.
Jan
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With a fast growing tumor, did you have more rapidly progressing symptoms? Did u you have another MRI before surgery or did they tell you how big had gotten after removing it?
I noticed no change in my syptoms (diminished hearing and fullness in my ear) prior to surgery.
I didn't have another MRI pre-surgery because such a small amount of time had passed and because no one thought it would be an issue as ANs usually grow very slowly.
The increase in size was something my surgeons noticed when they were removing it. My neurosurgeon said it doubled; my neurotologist said it "almost" doubled.
My neurotologist also told me I made an excellent choice (surgery) because he only radiates ANs (through GK) that are 3 cms or less. He told me I wouldn't have been a candidate for radiation like we originally thought.
Jan
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Jan, Welcome. I had my surgery two years ago at MCV/VCU. Best of luck with yours. I still have difficulty with swallowing because of trauma to the nerve, but it is not severe at all. I'll be glad to share more if you need, but it looks like you have a handle on things so far.
-Tod
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Hi all,
Thanks for the responses back to my posts. I talked with scheduling at UVA today and I am scheduled for 6-22-12. Dr. Helm and Dr. Hakisaki will be doing my surgery. I will consult with Dr. Hakisaki in early June. He is the ENT.
So now reality sets in. Still I'm trying to think past the surgery to recovery, but it feels like a ticking clock inside of me now. I like to work out and do things around my home. My husband put down new flooring and panted the walls of our bedroom to make it clean and fresh. It's kinda like wear gonna have a baby or something--preparing the home for me to recoop in. However, I think having the babies will prove to have been easier than this. I guess we'll try to get some other projects done. We got our garden ready for planting this weekend. We're a little late, but we'll put in already started vegetables.
I have also read that people recommend preparing for this surgery like an athletic event. I am riding my stationary bike and elliptical and doing exercises 3-5 x/week. I feel really drunk when I get off of the bike and the elliptical. Does anybody else get more wonky with ex? I also am getting more sharp pains in my ear and face just in front of my ear. It makes me wince like a sharp jab. My kids ask if I can feel the tumor. I usually tell them,"No but I can hear it, like a bee hive in my head." I guess the bees are starting to sting me now, so maybe I can feel it. I actually know that these are all a result of the tumor pressing on the nerves not the actual tumor itself, but it makes it a little lighter subject to animate it. Laughter is good medicine. I hope I can keep it up. The butterflies I felt in my stomach today when they told me the surgery date, make me wonder how I'm gonna be able to keep smiling as the day approaches.
Jan
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Laughter IS good medicine - and so is a positive attitude.
Both will help you get through your AN Journey.
Keep the faith,
Jan
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Hi Jan,
The time from when I found out I had my tumor until my surgery was just over 2 weeks, so I did not do any ex. My prep was getting the house ready and buying stuff I thought I would need, as well as a lot of Dr. Appointments. For me getting ready meant trying it gain some weight because I knew I would drop a bunch of weight. Given my height and usual weight, I am at a good weight. Sure enough, I dropped about 17 pounds. My journey was different, I spent 4 nights in ICU, then went to the hospital rehab floor for 9 nights. The rehab floor is new and was an outstanding experience. One of my biggest worries before surgery was the pain I would have later. I was lucky, I never had headaches, or vomiting post surgery.
I was happy when I was in rehab, so much so that they sent a Psychiatrist in to talk to me! They didn't think I was dealing with reality. I was just happy to be doing as great as I was! I had not gone on line to read all of the things there are to worry about with AN surgery, so I was happy my cognitive abilities were good, and that I was alive in spite if having a tennis ball size tumor!
After about a week there I found the thing I most wanted was a soft blankie! So someone went to Target and got me a queen size blanket that feels like a baby blanket, complete with satin trim! That little thing made a huge difference to my comfort level.
Prayer is what sustained me, and continues to sustain me.
your faith will sustain you too.
Blessings, Karen
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Thanks Karen.
I think a soft "blankie" is a great idea. I am also thinking of some new PJs and slippers to have for after my surgery. Maybe even a robe. I like home decor and gardening magazines. I am not sure how much I'll feel like doing in the hospital. I just got a new laptop for mother's day but don't know if I'll take it. Looking at the screen can give me a headache and also makes my head buzz more. I do like to listen to scripture and music with a headphone in my good ear. Did anyone do that or try? I am not sure if I will be able to tolerate it after surgery. Right now, it helps me to fall asleep some nights.
As far as working out, I'm just trying to go into the surgery and recovery as strong as I can be. I don't have an extra 15 to 20 pounds to lose either. Maybe I can think about a higher protein diet to help me build more muscle, as that would be what I would lose if I lost that much weight.
It makes me chuckle that they ordered a psych eval while you were in rehab. As a physical therapist, I know that patient attitude makes all the difference in their rehab potential. Glad they didn't label you "crazy". If we weren't all a little bit crazy, we might go insane. I stole that line from Jimmy Buffett.
On another note, prayer is definitely what sustains me. I am trying to pray for others less fortunate than me and give thanks in my circumstances. There are always blessings to be counted. I do pray for strength and wisdom, which I know God will grant me. Thanks so much for your prayers. I am praying for all of you too.
Jan
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Hi Jan!! I just wanted to add my welcome! I wish you good luck as you get through this little "hiccup" in your life. It is a life changer, but as "the other Jan" said, there is life after surgery and it sounds like you have a great support system and a good attitude so you should have no problems! As far as life in the hospital, unless your recovery is just spectacular you probably won't be wanting to do much reading. A common after effect is balance and having the eyes staying on track with things for the first few weeks. Again, everyone is different and you should take everything you can think of just in case, but don't be too surprised if all you want to do is lay on the bed! :) Take care and let us know how it goes as you continue on! :)
Jay
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:D Howdy!
They might cautious you about having a laptop in the hospital, because it could "walk off".
As far as music while in the hospital, I found I liked silence in my recovery. I didn't even turn the TV on for the first 2 weeks. I guess my brain had enough to deal with from just the surgery.
To this day when I have had enough stimulation in the day, I will retreat to the bedroom and have total silence.
Karen
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Thanks you all for sharing your experiences and thoughts. I thought I may not feel up to doing much in the hospital. It makes since that any additional brain stimuli immediately post op may be aggravating. Sounds like I can plan on resting and hopefully walking the hall. I thought about the laptop being a valuable too--So I will plan on leaving it at home.
Thanks for the welcome Jay. I will keep you all posted regarding my progress and I am sure that I will have more questions as surgery date approaches.
Oh, by the way, I just found out my 10 yr old hound dog has lymphoma and the vet gave him 3 wks to 3 months to live. Poor guy. :( This has really saddened us and we are hoping he can go peacefully and be comfortable has he endures his last days. My husband is a little concerned about caring for a sick dog and his wife. Please pray for us as we figure this piece of the puzzle out.
Jan
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If we weren't all a little bit crazy, we might go insane. I stole that line from Jimmy Buffett.
Some of my favorite JB lyrics - If we weren't all crazy, we would go insane ;D
Are you a Parrothead, Jan?
I am - and so is my partner in crime Lori (lori67) and Captain Deb. Probably others on the Forum, too.
The other Jan
Sorry for the hijack, Phyl ::)
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Sorry for the hijack, Phyl ::)
ahem! This Parrothead would like this topic back on track please! Thanks! :) Phyl
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Damn! You always find me, don't you ;D
>:D
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Hi Jan
Yeah I do like Jimmy Buffet's music. He was the first concert I ever saw. That was back in 1975 and there were no Parrot Heads or crazy hats back then. I have seen him many times in concert. His music always reminds be of my childhood and youth, growing up on the water and beaches of Charleston, SC. One of my favorite places to be is on the beach. Especially now, because it makes the buzzing in my head less noticeable. I have suggested that maybe I need to go live on a tropical island where the sound of waves, birds, crickets and frogs can drown out the noise in my head. Wonder if a I can get a prescription for that and get my insurance to cover relocation. :D " I wanna go back, to the islands, where the shrimp boats tie up to the pilings. Give me oysters and beer for dinner everyday of the year and I'll feel fine." :)
Jan
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Damn! You always find me, don't you ;D
>:D
Yup... and kindly asking that this discussion get back on topic regarding those that are newly diagnosed/considering surgical treatment.... Thanks! :)
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HUH??? Could someone please fill me in? :D
New Jan
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Hi Jan,
I'm a little late in replying to your original post back in early May. First let me welcome you to this little community. The people here are for real !! They care!!
I had surgery 19 months ago, and I am recovering back to a normal life again. From what I read you're in good shape, you have your faith and your family, what else could we ask for. It's human nature to have anxiety over any type of surgery, but the thought of brain surgery can be a little scary. I remember walking my dog the night before my operation and saying to myself - " What are you crazy, you're having brain surgery tomorrow".
Surgery has come a very long way in the past 30-40 years and that is the good news. So try and not dwell on it, and enjoy the spring, I'm sure by end of summer you will be doing fine. Please post before your surgical day, so I can pray for you. There will be many others here at ANA who would like to do the same.
Keep the faith and God Bless.
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Hi Jan,
you have had alot of encouraging words from your AN family and I will just say you will be in my prayers as well. The Lord will get you through. I was recently diagnosed as well and contemplating surgery. Seeking God on it. I know all will be well though. God bless you. God will get you and your family through as you already know.
Nicole
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Thanks so much Chances3
I am trying to enjoy each day and not dwell on the surgery. But of course people always ask how I am doing and many of them want to know if I am scared. I answer honestly, and say that it makes me scared to think about the actual surgery. I tell them that I am trying to think on things that are lovely and that just doesn't fit into the category -- maybe for a neurosurgeon -- but not me. I am so thankful to have such great medical care in the US. I am glad that we have very smart and skilled surgeons that have dedicated so much time and effort to be able to help people like us. What a Blessing! I thank God for them.
I look forward to recovering and getting back to a "normal" life. I realize that our bodies are never the same after major surgery. I am confident that the blessings will continue post op. Thanks so much for your prayers. I hope that I can stay dedicated to this forum, to help and encourage others as they face the challenge of an AN.
Jan
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Thanks Nicole
You are right. So much encouragement from this group. I have never chatted or talked with people on a computer. I don't even Facebook. This has been such a great wealth of information and help. I am so glad to have found ANA. I will pray for you also as you seek God's direction in your decision. He will give the peace to know you are doing the right thing.
Jan
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HUH??? Could someone please fill me in? :D
New Jan
Once in a while we get off topic in a thread - what we call hijacking - and that doesn't sit too well with Phyl. We just do it to have fun - and (truth be told) sometimes to see if she'll catch us >:D My partner in crime, Lori (lori67) and I are pretty big hijackers, although Lori doesn't get to the Forum too often these days; she spends more time on FB :'(
I should note that Phyl does allow us to have fun - and to post about non-AN things - but those posts are supposed to be in the AN Community area.
Now, back to the topic at hand. See, Phyl, I'm policing myself ;)
I hate rules!!
The other Jan
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Jan (UVA),
For me surgery was nothing. It was the 24 hrs of spinning and vomiting that I didn't want and got! My pain got no higher than a 6 and that was just neck strain (your neck is stretched for 6 to 9 hours) and intermttent sharp pains on th AN side. But other than the 24 hr vomiting I found it it to be a breeze. Though I am having to walk with a walker because of major balance issues, I'm fine. No headaches (knocks on wood) or anything, oh yeah FATIGUE!! wowzers am I tired a lot.
The UVA folks were awesome and I would reccommend them to everyone (you know I'm a Hokie by heart). Very kind and caring people 8)
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Thanks for the update kixit. I am sorry you had to spin and vomit. That doesn't sound so good. I guess that one day of that sure beats 2 or 3 days. I figure that the way time flies in general, I can muster through for a day or two or three, whatever it takes. It seems that 20 yrs of raising kids has flown by, so what is a week?
I am so glad to hear that UVA was a good experience for you. I have all of my preop work this week. Going to see Dr. Helm, then to echocardiogram, then Dr. Hashisaki, and finally, another hearing test. Surgery date will be here before I know it.
I'll keep you posted.
Hope you continue to progress well, and can get off of the walker soon.
Jan(UVA )
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I went back to UVA today for suture removal and a recheck. I am ahead as far as progress. I go back to light duty work next week (we are shooting for 4 hr days to start). My balance has improved but I still stagger a little bit but Dr Kesser said it will get a lot better. He actually couldn't believe it was just 10 days post op. So we are going to try the work thing.
I asked him about my ear (I had translab) and why it sticks out more (I told him my ears were big enough without
the extra sticking out part,lol) He said it would flatten out in a few weeks. I also asked him about the cardboard feeling in my AN ear. He said skin nerves were cut during the initial incision and WILL grow back and I will be able to feel my ear again.
The care and concern they give is amazing. You will love them!
Good luck and well wishes are sent your way along with prayers ;D
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Hey Jan - good luck with your up-coming surgery! I had a golf ball size AN on the right side and had the Retrosig approach surgery on 3/21/12 and all went well for me!! I too was nervous about the actual surgery. But I told myself that I was in the good hands of my surgeon and had lots of people praying for me and tried not to overthink things! I didn't have much time to think about that though - I had to have surgery just a few days after I found out I had the AN. But in a way that was good - I didn't have to make any decisions and stress about that. The first day post-op was a bit scary with the balance being off & I had some slight double vision for the first day but it is easily forgotten once it improves! I went home 4 days after surgery. I brought jammies, books, etc but for the most part I didn't even take anything out of my bag! Now I am about 12 weeks post and things are going well. I have my balance back, no headaches, no facial paralysis, still some numbness & metallic taste on my tongue & some hearing loss. I'm am contemplating starting running again soon. I tried it at about 6 weeks and I think that was too soon for me as I didn't like the impact. But I'm ready to try it again now. I go next month for my first follow up MRI and am hoping all is well!! They didn't get quite 100% of the tumor so I will continue to have it monitored and hopefully nothing will re-grow in the future.
Best of luck to you!
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Hi ROB85616
Thanks so much for your post and well wishes for me. I am very encouraged by the reports of those who have gone before me. I agree whole heartidly about "overthinking" it. I am really trying to stay positive and not worry about the surgery. I have met my surgeons and have completed all of my preop work up. I feel confident that I am in good hands. There is nothing more I can do, but just show up for surgery. It is so encouraging to hear that you have had no serious complications and are progressing well. I think I am most concerned about how I will feel when I am waking up after the surgery. I try not to think about it much, because I know it will probably be the hardest part of the journey. I am just praying for peace and the strength to endure whatever discomfort I experience. I feel so fortunate to have so many people praying for me. I have to trust that God will help me through it. I do look forward to getting back to an active life and to my exercise routine. I know it'll take some time, though.
For now, I'm just trying to stay busy by getting things done around the house for a comfortable transition back home. Also, I am getting busy with kids summer activities. I'll probably be so exhausted I'll need a couple of days of sleep. Really, I am just trying to keep my mind and body busy-- as much as I can, as I do fatigue easily, due to wonkiness. Surgery (and recovery) will be here before I know it.
Thanks again and good luck with your MRI and continued recovery.