ANA Discussion Forum
Archive => Archives => Topic started by: wind6 on June 15, 2005, 09:53:08 am
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Thought I would say hello. I just joined this site today. I have no idea how things work here but, I learn quickly. :)
I recieved my diagnosis last week and am supposed to meet with a team of surgeons on Monday, June 20th. Needless to say, my stress level is through the roof. I float from a strange peaceful acceptance to unbearable fear as if I am on a fast moving roller-coaster. My AN is left side and the measurements are 2.5cm x 3.1cm. This means very little to me. I don't know if I am in immediate danger or how long I have to decide what I will do.
My local doctor says it has to come out as soon as possible. I have facial numbness, balance problems, swallowing difficulty, occasional vision problems, but no hearing loss that I am aware of.
I am grateful to have found this site. It feels better reading what other have experienced. I wonder if anyone can tell me if I will be able to care for myself after surgery? I live alone and upstairs. Can anyone tell me what its like in the beginning of recovery? :-X
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I had a very good, fast recovery. Yet I was told I was not to be left alone for the first 7 days I was home. I was unsteady (used a walker for 2 days, cane for 2 more) and extremely fatigued. My husband managed my meds, as they were scheduled throughout the night with gradual tapering. He also helped me bathe the first couple of times. The occupational therapist who worked with me regarding discharge had reservations about my bedroom being on the 2nd floor, but since my husband and 4 teens were going to be with me she was OK with it. There are also some things to watch for (though I experienced none of them) such as spinal fluid leak, bad headaches. I really cannot imagine being left alone at that stage, nor would my medical team have allowed it. I have heard that some patients have gone from hospital to rehab facility in some cases.
Good luck!
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Thank you Kim. I am thinking about moving to a downstairs apartment. During a balance loss last summer I fell down the stairs. Can't imagine if my balance gets worse and with trying to carry up groceries and such.
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My balance problems cleared up very quickly. The more active you are, the faster your brain adapts and reorganizes itself; it's really quite amazing. I was in ballet class only 2 weeks after surgery, so that gives you an idea. It really was a tremendous help, too. Though I avoided spinning for the first few weeks!!
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Recovery for me wasn't too terrible. As Kim said, you probably won't want to be alone for the first week. My wife helped me shower and get up and down the stairs etc. I was very surprised how fast I improved, everyday I noticed improvements. By the second week I could do almost everything by myself, but taking things slow. I think my age may have also helped, I am only 27. I had my 4 week follow-up one week ago and I am feeling great. Last weekend I was up and a friends lake house and went boating, it felt great to be out and about. I am back and work this week and starting to get back into the swing of things.
Best of luck to you, you will make it through this!
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Hi, I hope your appt. with the surgeons went well. I was fortunate to have my parents to help take care of me and my children for two weeks after the surgery. That way, my husband could work so we could still pay the billls. I don't think I could have managed to take care of myself that first week. It took a couple of weeks to get my balance back on track. I'd encourage you to have some kind of help for a week or two, or until you're feeling better. Even if it's to help with meals, and to help you keep track of meds. I was pretty out of it and don't think I would have been able to give myself the right doses at the right times. Good luck, you will get through this!
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Hi Wind6
I don't know how your appt. on the 20th turned out but with what you said here: "My local doctor says it has to come out as soon as possible. I have facial numbness, balance problems, swallowing difficulty, occasional vision problems, but no hearing loss that I am aware of.", I have a tendency to agree with Dr. given your symptoms. This sounds like it's near to, or, impacting the brainstem. Many ANs not in the IAC, inner auditory canal, but in the CPA, cerropbellopontine ange, do not produce a hearing loss.
Russ ( I hope you let us know how the visit was! )
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Hi everyone. Sorry it took so long for me to get back with you. I met with the doctors in Springfield on the 20th. I really liked them and for the most part feel confident that they are going to be a great team. They sent me to a neurologist here in my hometown for an MRA and an EEG before my surgery. My hearing test indeed showed only slight hearing loss. Everyone seems quite amazed at that. I do not have an exact date for surgery, only that it will be in August.
I am still on a roller-coaster emotionally. Everything from denial to doomed. I seem to be plagued with seemingly insignificant questions. Like...how long till I can wash my hair? What kind of medications will I be on after surgery? How long till you all felt like using the computer to come here and check in?
I also want to let you all know that I am moving on the 15th of this month. I found a very nice groundfloor apartment with a washer/dryer hookup so, that should make things a little easier. My mother is wanting me to come stay with her for a while after surgery so, thats probably what I will do. I have a promise from my sister that she will bring me home if I can't take being there. I love my mother but it doesnt take me long to need my own space and privacy. I guess I am too independant at times. :)
Thank you all for your encouragement.
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hi,
I can totally understand where you are coming from. I have surgery sceduled for the 2nd of August. I have all those questions. I do not like to take meds and I know this time I will not have a choice. I do not like not being in control. I pray for the best but wish I knew how things will be after surgery. Everybodys experience is different.I also wondered about my hair, driving and getting back into my normal routine.
Enough about me, I hope things go really well for you, You will be in my prayers. Try to stay positive,they say it works wonders.
Take Care,
Lynn
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Hi Winds6
Here's a few bits I can share from my surgery. I encourage you to ask your doctor what they think you can expect.
HAIR: You won't be able to wash your hair for about the first 5 days. Then you need to be very gentle because the stitches will still be in. I had my stitches out after 10 days. Getting the "medical glue" out of your hair takes a few trys.
DRIVING: I think this depends on how you do with your balance. While it is a sitting activitity, you will need to be able to turn your head to each side quickly. This might make you dizzy at first. I tried driving after three weeks and didn't feel comfortable enough to get out of the neighborhood. By week 4 I was OK. Take it easy.
MEDS: I was on a tapering dose of steriods for 7 days for the swelling. I was also on drugs for acid relux and upset stomache. For pain I took Tylenol. My doctors had other meds in mind but they were codeine based and I am allergic to them. Tylenol worked fine.
HELP FROM FAMILY AND FRIENDS: Let them help. One of the lessons I had to learn through all of this was to let people help me. It was different, but good, to be on the other side. The first week I slept alot and was greatful someone kept track of my meds for me. Especially the tapering dose of steroids.
I was out of work for 6 weeks but felt well enough after 4. I was 47 at time of surgery which occured about 18 months ago.Stay positive, ask questions, say your prayers.
I hope this info has helped you and cookiesecond.
All the best -
Monica
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Yes that does help. Its also helpful to know that others are worried about the same things. I dont want to seem like a baby or like I am just being trivial. I can not say enough how much it helps coming here and talking to others that feel and think the same things.
Good luck to you to Cookie and you are most welcome to talk as much about you as you like...always remember that your questions and comments do help others.
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Thanks Monica,
It sure helps to talk to people who can relate. I am so glad to know tylenol worked for you. It is very hard for me to let others do for me but I am very thankful I have family and friends that are willing. I feel a lot of pressure on the back of my head and I am dizzy a lot. The surgical nurse said the dizziness is good because my balance nerve on the other side is already trying to compensate.
Wind6 ---you are in my thoughts and prayers.
cookiesecond
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Hi:
The tumor you describe is on the large side. I also had almost no symptoms and a large tumor. There is no logic to that.
It's not clear from your posts why your your doctor told you to have it out ASAP. There may be good reasons, but long term it makes sense to get at least a second opinion before you finally commit to surgery Often, you can find better care and more experienced doctors in another city nearby. Even if you must travel a bit, it's well worth it. Have you done that?
Your mood swings are normal too. The big question is not WHETHER you'll survive this surgery, but HOW you'll survive it, and live the rest of your life. The outcome is the most important thing. What do the neurosurgeons say about:
Chances of preserving your facial nerve? (If they are not sure, or if the chances aren't high, get another opinion). The answers I got ranged from an almost 100% chance of cutting the facial nerve to almost 100% chance of saving it.
Length of time the surgery will take? (The shorter the better) Dr. A told me 14 hours, then another four hours in a SECOND surgery; Dr. B about 12 hours, and Dr. C 6-7 hours.
Their experience removing Acoustic Neuromas specifically? Dr. A: 15 or so per year; Dr. B: 25 to 30 per year; Dr. C: Over 200 per year. All had at least ten years of experience.
What % of their AN surgeries leave the facial nerve intact? Dr. A: 65%, and in my case he would definitely have to sever it; Dr. B: 55%; Dr C: Over 97%
There are more, but that's a start. Don't be reluctant to ask them these questions; it might make a big difference to you.
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Hi; first of all, let me point out that there are now 2 Kims! If anyone gets confused, I can alter my name.
All of your concerns about the details are valid. For me, a nurse washed my hair as best she could on day 2 after surgery. I had staples, maybe that makes a difference. It was a beautiful zipper going up my head! Anyway, the glue is messy but not as bad as when your kid gets gum in their hair! My surgeon said it was OK to get the site a little wet, but to pat dry right away. Once I got home, my husband spot-washed my hair until the staples out. Man, that first real shampoo felt good! I kept thinking of when we used to take long camping trips, and had to skip the luxury of washing our hair.
As far as meds, I was on a tapered regimen of steroids, and was glad to have my husband dole them out for the first couple of days. I was given something for naseua, but never needed it. I had percocet, but took only a couple before switching to Tylenol.
I drove very carefully at 3 weeks. I was sent home with a walker but after 2 days used it only to hang towels on! I did buy some nice looking flat shoes for when I started back to work, as all my "good" shoes were heels. Once I was walking completely normally, I realized how silly heels are. Cute, but ouch after all day at work. AN surgery lesson #247. I also removed lots of little scatter rugs beforehand, not knowing how the walking would go. Little preparations like that made things easier.
Letting people help is so important, both for you and for them. Neighbors for miles around fed my family for 3 weeks. I was perfectly capable of doing it myself before then, but they wanted to do it so badly. It gave them a reason to visit, and made them feel like they could do at least something in the situation. My kids constantly drove around returning dishes, which was also good. They learned a lot from this whole thing, and community love and support was part of that. I, too, love my mother but question how long I could live with her!!
Gee, I have to really think to remember all this stuff, and it was only last fall! Goes to show how far I've come and how back-to-normal my life has become!
Hope this info helps.
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Thank you all for even the tiniest bits of info. I feel as if my life has been invaded by an alien in my head...consumes so much of my thoughts. I fear that those around me all the time will tire of listening to this stuff, so I come here when I need to talk it out.
Cookie....and all, I got the call today. My surgery is also going to be done on August 2nd. My doctors are great. They gave me a phone number to call anytime I have a question. I have to be in Sprinfield at St.Johns hospital at 5:30 am, have an MRI at 6:30, surgery to begin at 7. Between now and then I have to undergo an intense medical exam. EKG, echocardiogram, MRA, EEG,blood work, x-rays.... I am grateful that my doctors are being so careful but darn..all this stuff is scaring the heck outta me. I guess it just drives home that fact that this is real.
I was told that my facial nerves will have monitoring devises and that I will have one person who will do nothing but watch my face throughout. They plan to do translab but may have to move on to Mid-fossa due to the size and location of my tumor.
I was told to expect temporary facial paralysis but that the odds of it being temporary are great...just expect a slow recovery. One of my surgeons is called a neurotologist(new term for me to research) and that AN are her specialized field.
Okay, no more for now. I will be with you all on this board closely from here on out so I hope you all are patient. :-\
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i'm sorry...didn't you say you haven't had any hearing loss? why oh why would they do a translab surgery? that will be a 100% "chance" of losing your hearing. i'm not sure if you want my personal opinion on this, but i would ask another surgeon which method he/she would use. why would they start translab and then move middle fossa? for as long as i've been here (dx'd in dec 04, surgery in april 05) i have never heard of this technique.
my advice (ok..so i'm a little biased) would be to contact House Ear Clinic in LA, if you send your audiogram (very little hearing loss, right?) and your mri, they will call you for a free phone consultation (it wouldn't hurt, really) it doesn't necessarily mean you have to go there, but these guys are very skilled in acoustic neuroma removals (something like 3-4 a week) and at least you would get their opinion before you go and lose all your hearing.
i know your AN is bigger than mine was and you have more symptoms that i did, but that would make going to the best physicians all the more worth it. the two docs that personally recommended dr brackmann to me called him the "creme de la creme of acoustic neuroma removals" and one doc said "you only have one chance to go to the best doctor the first time"..well, he convinced me! and i have no hearing loss and no facial paralysis and i got to go to disneyland out of the deal!
please do yourself a favor and get another opinion on which method is the best for you...there could be a chance to save that hearing, but you'll never know unless you try.
kristin
www.houseearclinic.com
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you can read more about HEI in the microsurgical options folder...
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Approach depends on many factors, including size and location. Hearing loss before is not in itself a dictator of approach. If it comes down to sacrificing hearing or facial nerve, you would choose to lose the ear and keep the face.
(my tumor was nearly 4 cm; surgery fall of '04; lost the ear, no facial nerve damage whatsoever)
Your doctors sound like they are being extremely thorough, and you have a good team working for you. Good luck.
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First of all I want to say thank you to all of you for caring so much. It really does mean the world to me.
Secondly,as far as House Clinic is concerned...the idea is wonderful but, the facts are still the facts. Number one fact is--I live in Illinois and can not afford the trip to Cali. That is my bottom line. I can only do what I am able to do.
I have faith in my surgical team and I believe my GP who has been my personal doctor and friend for many years would not send me to anyone that isnt qualified. I have three different opinions and all conclude the same thing. One did say I could do Gamma Knife but I am not comfortable with that approach.
Finally, Kim. Thank you so much for the words of encouragement. I am trying so hard to stay positive but I am terrified of this surgery. My tumor is considered large and its position is in an upward location. Saving my facial nerve is more important to me in the long run. I am so grateful you said what you did because I am trying as hard as I can to have faith. Adding doubts right now only causes the fear to grow. I believe my team is being very thorough. I know that I have a team that is very experienced and they seem more caring than any doctor I have ever had. I have a 50/50 chance of hearing loss but a 90+% chance of a saved facial nerve.I have to believe that my surgeons know what they are doing.
Please do not feel that I do not appreciate the concern. I just have made my decision, I have researched my options, and am ready to move forward with confidence. I realize opinions are given out of caring and concern. For that I am very grateful. Thank you all.
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wind6,
You are in my thoughts and prayers. I have also read all the great reports from California. However, I cannot go there. I am having surgery in Raleigh NC at Duke.Dr.Fukushima has done many AN surgeries with much success. We just have to pray for those we have chosen. God will work mightily through them.
Take Care,
Lynn
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Where in Illinois are you? I am in Southern Illinois. I had my surgery 18 months agon in St.Louis Misssouri. Dr. Neely at Barnes Hospital did it. Unfortunatly mine had totally involved my facial nerve and they couldn't save it. I also had no symptoms other than a ring in my hear at first. Mine was 3.5 cm/ aren
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Lynn,
You are in my thoughts and prayers too. We will be in surgery at the same time so I will be curious about how we recover together. Its great having a partner.
Karen, I am in Champaign/Urbana. My surgery is going to be at St.Johns in Springfield. My heart goes out to you on the facial nerve thing. That is my biggest fear. So how are you coping with the lose? If you don't want to talk about it openly we can e-mail back and forth.