ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: lizzie1hoops on January 04, 2012, 01:33:24 pm
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Hi all,
I've been reading the discussion boards for several years and have gained so much valuable insight and felt less alone in this crazy process. I'm finally having surgery (mid fossa approach) next Thursday so I thought I'd reach out for some much-needed advice.
I'd love to hear from some post-op folks what you wish you'd known ahead of time. For example, is there anything special I should plan to bring to the hospital? Anything that would be good to have at home?
Best wishes for a happy and healthy New Year to you all,
Liz
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Hello Liz :) Where are you having your surgery? I cannot give you any advice. Others will chime in here. Good luck for your upcoming surgery and quick recovery. Keep us posted :)
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Hi Liz and welcome to the forum .....
Glad you have "taken the plunge" and begun posting. I lurked for months before I got up enough nerve to post. I had never been in a chat room or on a forum in my life until my AN hit and I found this wonderful site!
If you have been reading some threads/posts, you probably have picked up on the fact that many of us found lip balm essential for the post-op period in the hospital. Good to have at home are quick meals frozen and ready to reheat/cook at a moment's notice.
Many thoughts and prayers for an uneventful surgery next week.
Clarice
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Hey Liz!! Good luck from one middle fossa alum to soon to be another! :) The best advice is to remember that the first three days don't count after your surgery. That's so true, because almost hour by hour you'll feel differently. Also remember to just take it easy after you get home. Also remember that if they give you steroids (that's for the swelling in the head), that will also affect how you sleep greatly...as in you won't get much. As with all meds, different ones do to different things to each person. Take care and good luck, let us know how it goes!
Jay
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Thank you all for your messages and your helpful tips (lip balm, easy meals, three days, meds - check)! It is so comforting knowing other people have been here before and made it through.
I'm having my surgery at Swedish Neuroscience Institute with Dr. Backous & Dr. Foltz. All the staff has been wonderful and, although it's not a strictly scientific approach, I just knew it was the right place for me (I've had 4 physicians review my case so far).
Thanks again and best wishes to you all!
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I remember Dr. Backous when he was at Virgina Mason. I only met him once shortly after I found out about my AN. Nice man. I had my CK done at the Swedish Medical Cyberknife Center. Sandra Vermulen. I now live in North Dakota so I had sent my scans to Dr. Friedman in LA. Just waiting to here his opinons.
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I hope you hear from Dr. Friedman soon, I know how tough it is waiting on opinions that affect your life so profoundly! I know there are a lot of people on this forum who think very highly of him.
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Here's a few tips that helped me out. I felt dizzy when I would shower. I got a hand held shower head and a small shower seat, I used it for about 6 weeks. My dizziness was never overwhelming it just felt more off in the shower. Lip balm,candy bars. For some reason the steroids made me not taste food..but I could always taste chocolate. Sneakers..walk as much as you can..it definitely helps. Big comfy shirts. Don't let a headache get out of control after surgery. Take the pain med routinely atleast the first 3 days. The pain meds can be constipating...drink alot of water. Lubricating eye drops, just in case. After surgery my eye was dry for about 3 months. Good luck to you:) Best wishes being sent you way
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Thank you so much. This is great advice and the wishes don't hurt either! I'm making quite the list.
I bet this is the place to ask a question that's been on my mind... My bedroom is up a tight spiral staircase. Do you all think I should plan to sleep on the main level for a while? (sending my Mom who's in town to care for me after surgery up there instead). I tried searching for "stairs" and "staircase" and didn't come up with any results.
Thanks a million,
Liz
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Hi Liz .....
Although each of us is unique on specific things that trigger the disorientation feeling, I have found that firmly fixing my gaze on stable (not moving) objects when I am walking usually solves the problem. That being said, if your spiral staircase does not have a railing from top to bottom, I would not try to negotiate it until you are very stable. If it has a railing, just be sure to hang on and fix your gaze on something solid as you are going up or down ..... and take it very slowly at first.
Weird as it may be, my two most recent falls were both after washing my hair and trying to wrap a towel around my head and got caught in watching the swinging towel. You just need to be aware of certain situations.
After my first surgery, I was very careful to make sure something was within arm's reach when walking in my house.
However, you may not have a great deal of difficulty if your brain has already begun compensating by using your good vestibular nerve. As Jan said, walking as much as you can in the initial post-op days is excellent therapy to train your brain.
Thoughts and prayers.
Clarice
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Thank you, Clarice. This is really helpful.
I'm wondering, is the falling kind of like a "down I go" feeling? Like you lose your bearings and fall down? Does it come with nausea? I'll confess I'm most worried about the nausea.
I'm sure we all have an AN-related wish list, but I wish there were a better way to predict how severe the balance problems will be post-op. I bet that a list of wishes would be a good thread, that should inform research on the subject!
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Hi Liz,
I had a middle fossa approach 14 months ago. There isn't much you can prepare for, but here is what you might expect post recovery. The first few days can be very challenging as your brain tries to calibrate itself. Don't worry, the really hard stuff lasts a few days, after that it takes a lot of time for healing. Unfortunately, there is no bench mark to go by, like if a person breaks a leg, the medical community can give pretty good estimates of recovery. Surgeries concerning the nerves are very delicate and each person has there own specific recovery. I was very discouraged in the beginning, I expected to be up and about in a few months, my recovery took a real long time. The second symptom you might have, which seems to affect many middle fossa surgeries is fatigue. You will tire quickly, I always say to other AN patients, listen to your body, and take a nap if you need one.
I hope my comments help, and I wish you the very best recovery, please keep your AN friends up to date on how things are going.
God Bless !
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Thank you for sharing your insight. I have initially planned to have up to 6 weeks off work, but I have heard several estimates that go up to 3 or 4 months or possibly more, depending on circumstances. Sorry to hear your recovery was on the longer side.
I don't know if your situation was similar, but I guess many of the middle fossa candidates are in a situation where they have to decide when to have surgery (small tumors, symptoms not necessarily severe). I am dreading regretting this decision if, like you, the recovery is very difficult and extended. I guess there's only one way to find out! I'll definitely keep updating as things go on, or have my husband do so.
Regards,
Liz
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Hi Liz,
I'm curious how big your AN is. The mid-fossa approach was the surgery recommended for me. I haven't made my decision yet. Good luck to you. I will be watching for your posts as I like to read from people who are having the same type of surgery that I may have some day.
Lisa
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Liz .....
I had virtually no nausea with either AN surgeries ..... first one retrosigmoid, second one translab. The falling was more like, "Oh, oh, I'm falling, which way is up?"
I don't think the surgical approach makes any difference on the fatigue ..... that seems to be a universal post-op symptom. You just need to have the ability to rest for a few minutes when the fatigue hits ..... it is the brain's response to the trauma and the adjustment to the lack of one vestibular nerve.
Depending upon the type of work you do, six weeks may be plenty of time if you have an uncomplicated surgery. I was retired from teaching before my first surgery, but if I had still been working, I honestly feel I could have gone back in six weeks with no difficulty other than knowing my limitations with hearing and movement. I'm sure I would have been very tired by the end of the day. You just need to have Plans A, B, and C arranged in case needed, that's all.
For me, I was determined not to let this AN thing direct my life and I was very motivated to do everything possible to keep ahead of it and not the other way around.
Best wishes!
Clarice
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Your positive attitude is inspirational, Clarice. Thank you for the additional details. I'm sorry you had to go through that whole process twice!
Lisa - the largest measurement is 11mm (I regret to say I can't remember the others). There has been approximately 60% growth in the 6 years I've been watching and waiting so it was very small when it was discovered. I've been having worsening symptoms and wanted to get the surgery over with, but I can definitely relate to what an unbelievably difficult and personal decision this is. I'll be glad to keep you posted and reflect on the whole thing from the other side in case that's helpful.
Thanks again all, great to know you're out there (even though I wish none of us were here really!).
Liz
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I didn't have any nausea. A little dizzy after I would walk for a while. I would hold onto the rail on the hospital wall because I didn't want to fall. The only time the dizziness would freak me out was when I turned my head or body to fast. Stairs did bother me for a few weeks. Not going up them but coming back down. The more aware you are of your surroundings and you will learn quickly what makes the dizziness increase and avoid doing it...you will be fine. It goes away over time. I don't think the middle fossa approach is what causes the fatigue....all brain surgery under sedation for that many hours can cause fatigue. I did have a problem with fatigue for many months.
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Thanks for your post JAndrews (I'm never quite sure how to refer to people based on their profile names :)). I know that feeling of getting dizzy when you're really tired, did you have that pre-surgery too?
I'm just back from getting pre-op blood work and a CT scan done in the run up to my surgery. How I wish we could all ditch the MRI in favor of CT scans! What a walk in the park!
I'm trying to think of the best way for my husband or mom to update this forum. Should they start a new thread or continue this one?
I hope you're all well,
Liz
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Hi Liz ......
Many thoughts and prayers!
Your husband or mom could just post onto this thread, using your Username and password ..... or start a new thread for your post-op time, whichever is easier for them.
Best wishes!
Clarice
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Hi Liz,
I was suffering from severe vertigo attacks - complete visual spins that lasted 2-3 minutes but felt like an eternity. The attacks increased in frequency every 5 to 8 days. An MRI showed the growth - mine was small, but I didn't have the ability to wait. I chose the procedure and didn't even have second thoughts.
You will be fine, so just relax these next few days. I will keep you in my prayers for this week.
God Bless.
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Liz, sending you support and the biggest prayer for your surgical team as you ;Dgo courageously forward now! :D
Steph
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Thank you, Steph!! I think I'm mostly all set for the big day, I've got a whole bunch of things suggested by all the wonderful members of this forum. I'll admit to thinking "hmm, what if I just continued to wait?" December me would not have had any of that kind of thinking! Not sure I'll get much rest, but here's hoping. I'll make sure my husband or my mom updates you all on how it's going.
Here goes nothing!
Liz
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Liz
You will be in our thoughts and prayers. Will be looking forward from hearing from your husband on your recovery.
Mindy
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I didn't have any dizziness prior to surgery or my diagnosis. But when I consulted at the Mayo Clinic they had me do a walking/balance test....I almost fell over! The doc said my body had adjusted to the balance issue being caused by the tumor and that I had not even noticed it. Good luck to you and best wishes and prayers being sent your way for a successful surgery and smooth recovery! BTW, my name is Julie Andrews---the nurse..not the actress:)
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So if your balance is horrible before surgery does that mean you already compensated? Or does it get worst after surgery?
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Hi y'all
This is Liz's husband posting on her behalf—I hope i did this correctly!
Liz was just wheeled into the O.R.
The surgeon (Dr. Backous [sp])estimated that they'd be done in around 3.5 hours, so I'll probably repost then.
She's healthy and is in great spirits. Everyone is very positive. Thanks for everyone's warm thoughts, support, and positive energy.
—zach—
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Thanks for posting. We are all looking forward to hearing your future posts. She is in our thoughts and prayers.... :D
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all sewn up!
I just spoke with the surgeon. Lots of good results:
• They removed the tumor completely
• the nerve monitor on facial function was excellent
• the monitor on hearing function tested at the lowest possible setting—There's a chance that hearing loss could still occur in the next few hours as the healing begins but initial results are great.
She'll be moved to the ICU shortly where I'll be able to see her in the next hour or so.
recovery begins today!
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Zach such GREAT news. Please tell Lizzy that we are all here waiting for her return. ;D Very happy for the great news.
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Zach,
Very glad to read about Liz thus far. Thinking and praying and so proud of her fr couragiously going forward. Thanks for posting.
Stephsf
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Zach,
Thank you for keeping us updated on Liz's progress thus far. I may be in the same boat in the not so distant future.
Lisa
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Liz is out of the ICU and into a nice corner suite to recover without nearly as much wires and tubes hooked up. She's resting without the annoyance of hourly cognitive and motor-function tests from the ICU staff overnight (really great staff here at Swedish by the way).
Liz improves by the hour and is sharp as a tack, but she's a bit groggy and she's not a happy bunny at the moment while everything heals. She has full facial motor control and apparently no hearing loss (the next 5 days will tell if the nerve heals). Almost all the pain is managed with an I.V. "cosmopolitan", but she's is very nauseous and gets dizzy when she moves even just her head—all part of the balance nerve recalibrating. She's got a long road of physical therapy ahead and exercises start today. With luck she'll check out of the hospital early next week and be able to recover at home. If things go well hopefully the next update will come from Liz herself!
—zach—
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That is wonderful news. I'm very happy to hear that her facial function is good, hearing is good (so far) and that she is doing well. Cannot wait to hear from her herself.
Mindy
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Zach ~
Bravo! to Liz! I've followed your posts and appreciate you taking the time and making the effort to keep us informed. The first three days post-op are always rough (I slept through most of those) but you'll be surprised at how quickly Liz gets back to 'herself' after a few more days. Being home will help, a lot. Looking forward to seeing a post from Liz, but thanks for posting in her stead.
Jim
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Zach .....
Thanks for letting us know about Liz. So glad the worst is over and she is apparently doing very well. As Jim said, the first three days do not count and she should see rapid improvement soon.
Thoughts and prayers continue .....
Clarice
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Zach,
So happy to hear that Liz is out of surgery and that things seemingly went so very well!! I expected nothing less actually. I have so enjoyed "getting to know her this last week" and look forward to meeting in person. Her positive energy is contagious! That Dr. Backous continues to make a name for himself in just the last few weeks in our small support group here in Seattle.
Tell her hello and that she continues to have healing thoughts being sent her way by many!
Barbara
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Hi everyone! I wanted to make sure to post something, however small, to let you know I'm home and resting comfortably. My pain and nausea are under control, but I guess balance is the final fronteir. I was so pleased to make it up our spiral staircase to shower and sleep in my own bed.
I'll have sutures and staples out Friday and try to arrange some outpatient physio to keep me motivated. Meanwhile, along with the rest of Seattle we'll continue to prepare to be snowed in!
I can't thank you enough for all your thoughts and prayers, they've surely helped me get this far.
More soon,
Liz
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Hi, Liz!
Thanks for posting! It's great to learn that you're home and resting comfortably. I'm confident your recovery will continue at a rapid pace but regaining your sense of balance may take a bit longer. Don't push yourself but don't give up, either. It gets better, as many here can attest. :)
Jim
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Hi Liz - Congrats on a successful surgery!
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Liz, so glad you posted. I am rooting for you for sure. Thank you far having Zachary keep in touch here..for our sake.
Steph
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Lizzy
So glad you are back at home relaxing. I have been looking forward to seeing your post. Take it easy and keep us posted on how your doing. Make Zach pamper you
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Hi everyone!
I know it's been a long time since I posted, I'm sorry. The weeks since my surgery have been a real roller-coaster ride. There were some days when I was really discouraged and regretted my decision to go ahead with the surgery, but things are looking up. Now I'm through the worst.
I think I'm a bit behind on progress related balance. I really didn't get around the hospital floor like I should have, and spent a lot of the next two weeks laying down with my eyes closed. Now I'm feeling less nauseated and tired, I'm working to make up for lost time. We went to a few antiques shops yesterday - there's a balance exercise!
The swelling around my incision kept me from wearing my glasses until a couple of days ago, so not only was I dizzy, I couldn't see either. I'm not a contact lens-wearer, but if I had to do it over I would get used to them before the surgery. I had to wait an extra week to have the sutures out because of the swelling too. I'm happy to report that it's almost gone now. Glasses=on, vision=check!
Subjectively, I'd say my hearing is the same as before surgery, which is a miracle given the position of tumor. The only facial nerve issue I seem to have is have a bad taste and funny feeling on the AN side of my tongue. At this point I'm off almost all of the medications except ibuprofen for headaches and pills to help with the acid stomach left by the other meds.
Once again I want to thank you all for your messages of support and your prayers. I'm so glad that now I'll be able to serve as a resource and cheerleader for others who are in the same boat.
Best wishes to all of you,
Liz
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Hi Liz,
I was hoping you were doing okay. I have to admit that it sounds a little scary when you say that you were laying down with your eyes closed for the past couple of weeks. I'm trying to imagine what it feels like and wonder if closing your eyes helps. I've had dizziness problems while laying down for years now. If I were to look to one side, the room would start spinning. I would quickly move my head and it would stop. Is that what it's like?
I wear contacts, but I was thinking that if I would be sleeping quite a bit, the contacts wouldn't be a good idea either because they would become dry.
I can't recall if you had balance issues prior to surgery, but I've experienced the "OMG I better hang on to something" while in a store that had a lot of breakables. I had my husband get me a cart!
Are you feeling the same way now...discouraged and regretting your decision? My follow-up appointment is next Tuesday, February 7th. I'm hoping to get more questions answered and make my decision.
Take care,
Lisa
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Hi Lisa,
Most importantly, I want to say I'm not feeling discouraged now and I don't regret my decision. I just had to keep reminding myself "I will feel better and it had to happen sooner or later." The surgery and all the unpleasantness that followed just seems like a bad dream. I was very out of sorts from the anesthesia and several of the medications I was taking had nasty side-effects, so the laying down with eyes closed wasn't purely balance related.
It's funny, I spent a lot of time over the past few weeks thinking about how to describe balance problems and dizziness, and what a struggle it seems to be.
I had a few balance-related problems before surgery: particularly motion sickness and room spinning. The motion sickness was so bad I couldn't even swim without feeling terrible and needing to lay down. So far all I know post-op is I seem to be able to ride in the car without problems. NOTE: despite having started since my AN was diagnosed and never having had this problem before, more than one ENT told me this is unrelated. I'm very skeptical about that. I'd love to hear if anyone else has struggled with motion sickness seemingly due to the AN.
The spinning thing felt like I was still but the whole room was spinning around me, is that what it's like for you? In both cases I'd take dramamine or meclazine and lay down until it stopped. Based on what I've read and heard from doctors it's hard to predict who'll have a hard time balance-wise after surgery, which stinks.
I hear you about the contacts and sleeping. Nice to just be able to put on glasses if/when you want to, but the pressure on the incision is uncomfortable - at least for the middle fossa approach.
I wish you the best of luck with your follow-up appointment. Don't be discouraged if a single logical answer doesn't present itself. As many, many people here can attest, it can be a difficult decision. I got 4 opinions in total and none were the same! This forum is an excellent sounding board!
All the best,
Liz
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Glad to hear your doing well now Lizzy. You were very couragous through your journey. Keep up the postive progress and keep us posted.
Mindy
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I think if you have fewer balance problems before you have compensated less so you have more work to do after the surgery, it will get better. Keep moving, walking and PT helped me quite a bit. Wishing you a quick recovery and good health.
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Liz,
I do have to realize that if it is surgery that I choose, it's not going to be a good time in my life. I will have to keep positive and work hard toward recovery.
My dizziness while I'm laying down is different than when I'm just sitting at my desk. The world does spin but it subsides fairly quickly. I'm thinking I'm going to ask for that balance test that's done to see if I'm experience a loss already. I'm pretty sure that I am.
Continue on your road to recovery and try not to let things get you down.
Lisa
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Liz,
If I decide to have surgery, I thought of something that may help with the glasses situation. I'm going to bring some eyeglass tools that my husband can use to take the left side off of my glasses.
The room spinning is what I experience at that moment, but can make it go away by keeping my head in a different position. The other day when I was driving home, I had to really focus on keeping my head still. My head just had this weird feeling.
I hope you're doing well.
Lisa
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Lisa
I have been talking with Steph back and forth and she was telling me about surgery etc. She said there was another person there who had mid fossa and she was doing well. Since I cant wear my contacts I was thinking of how to wear my glasses...LOL. Hearing Stephs story and the other stories have helped me alot. Whatever decision you make we are all here for you. ;D
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Sorry Liz. I didnt mean to hyjack your thread. I'm very happy to hear your doing well. :)
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Not at all, Mindy (durr, sorry I mistakenly said Lisa at first)!! I read your post about the decision-making process and have been thinking about you. I hope you're doing well.
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We took one arm off reading glasses and sun glasses.....still using them both and it works like a charm :o ;D
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I love it! Glad it's working out. I tried that but had some trouble keeping them on my face. I've since read if that happens you can use a little tape to hold them on. I wish I'd read that sooner!