ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: connie3245 on January 01, 2009, 12:20:48 pm
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I have been "lurking" since Oct. 08 when I was first diagnosed. I have found this website to be a tremendous help in understanding many of the issues I will be facing.
After many tests and "impact" studies at MD Anderson Cancer Center in Houston, TX, it was agreed that surgery was my best option. Actually it turned out that radiation was too risky because of my connective tissue disorder and some other auto immune problems. I have minor hearing loss in my left ear, tinnitis and some balance problems. I guess I thought I was just getting clumsier in my old age :) I was wondering for those of you who had the Middle Fossa surgery, just how bad the vertigo was when you were released? Did you need a walker? wheelchair? I know it varies from person to person, but I understand they cut the balance nerve in the AN side and eventually your other side compensates? Is this the same procedure you experienced?
Thanks for any tips. Also thanks for all the info provided by the members here.
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Hi Connie,
Welcome to the forum, we like it when the lurkers come out of hiding. I moved your post to a new topic so it doesn't go unnoticed.
Most of the time with surgery the balance nerve on the AN side gets cut. As you said, the effect varies by person. I have seen some people report using a cane; I think using a walker is less common. My impression is that you will be up and about in a few weeks, but it may take longer to get fully adjusted to your new balance.
I have also put your date on the AN Calendar, see the link below. Best wishes for a great outcome.
Steve
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Thanks for your note. I'm not sure how this all works yet, posting and calendar and stuff, plus I got a laptop for Christmas and I'm learning how to use it as well! It is all good fun learning how to share here.
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Hi Connie and welcome.
I didn't have mid fossa (I had retrosigmoid), but I used a cane on occasion once I was released from the hospital post op. I didn't use it for walking around the house - I tended to lean on people, furniture, and walls - but I found it very helpful when I was outside; especially on uneven ground, like walking around the yard.
I also used a walker in the hospital the first time or two I walked the halls; then I switched to walking next to a nurse, therapist, or family member. I use the term "walked" loosely, it was more like a stagger in the early days :P :D
Your body will eventually adjust to balance issues, but it does take time. Everyone is different, but I think canes and possibly walkers are the "norm".
Jan
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Connie~
Hello and welcome to a fellow TEXAN!! I was just in Houston for Christmas - I would have loved to have met you! I had surgery there a LONG time ago but I had a translab. so I am not much help with your questions. Back then, you had to stay in the hospital a bit longer so I left without (& never used) anything besides family & friends for walking assistance. I had a walker in the hospital though b/c I remember being upset that my hubby & mom left it there since I knew that we paid for it!! If you would like to talk, please PM (left side of screem) me with your phone number and I'd be glad to call you!
K ;D
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Hello Connie - and welcome. I'm pleased you decided to post and that the intrepid Steve ('sgerrard') moved your thread/post to a more visible forum. :)
I didn't have the Middle Fossa procedure. I underwent retrosigmoid approach surgery, like Jan ('leapyrtwins') but I can tell you that when the balance nerve is cut, as it will be, it can take a bit of time for your brain to 're-program', and your equilibrium and ability to walk normally to return. Some AN post-op patients are trotting around in no time (Jim sheepishly raises his hand) while some need a few weeks and the use of a walker or cane for awhile. Some have it even harder and need to use a cane for months. There simply is no 'normal' when dealing with your brain and body's response to this operation and the loss of the balance nerve. If it has been severely compromised by the encroachment of the AN beforehand, your brain has effectively compensated already and you'll have little trouble with your balance, which was my experience. However, I had borrowed a tripod cane before my surgery...just in case. I never needed it. Post-op, I doubt you'll need a wheelchair and you may not even require a walker or cane, or, if you do, not for long. I hope this is the case. However, it's a prudent move to have one handy. You know, the old adage - expect the best - but plan for the worst. :)
Jim
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Hi Connie
Good luck on the 13th.
Welcome - I am watch and waiter so am so curious about those who go before me. I imagine, I would be a middle fossa type (if surgery is the choice) due to my AN size and very good hearing at this point but that is just my own research - still have a long way to go.
Why is the vestibular nerve always cut?
Would be interested why radiosurgery was decided not to be appropriate (what type of conditions/risk factors)
Good luck on the 13th - may we see you a fair bit this week, and back very very quickly as a postie.
Ann
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Why is the vestibular nerve always cut?
Most acoustic neuromas are vestibular schwannomas, meaning they originate on the vestibular branch of the eighth nerve, so that nerve gets cut when the neuroma is surgically removed.
Steve
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Thanks again for all the support and tips. Addressing Ann's question about why they cut the vestibular nerve...(as I understand it) If they remove the tumor and simply leave the damaged nerve, that nerve would operate improperly and you would have random balance issues... "now you have it...now you don't" kind of thing. That kind of misfiring could be very dangerous I imagine. Cutting it requires that your healthy side learn to compensate for the lack of balance on the deficient side, which I have learned from the members here, takes time and practice. I was not a candidate for Radiotherapy because I have a nonspecific autoimmune disorder, which includes an inflammatory arthritis, similar to Rheumatoid Arthritis. I also have Raynoud's syndrome, and a few other annoying secondary issues to the arthritis. I was taking Humira injections for awhile but I have to be off of that because it compromises your immune system and leaves you more susceptible to infection. And you can believe they don't want you infection prone when you are having brain surgery :) . Apparently, the radiation treatment could do more damage and scarring in and around the tumor and the brain than would happen with a healthier individual. I'm ready to get this surgery over with and on the road to recovery...I'll check back in after my surgery.
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Good luck next week, Connie. Please do let us know how things go!
Cindy
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Good luck, Connie. I'll be thinking about you on the 13th.
BTW, nice profile picture :)
Jan
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Good luck for your surgery Connie!
In answer to Ann's question about suitability for radiosurgery: I have recently been told I am unsuitable for radiosurgery because I have a large cyst within my AN and that cysts often don't respond very well to radiosurgery, in that they can react to it by growing very quickly. Also the edge of the AN which is behind the cyst would not be affected by the radiation thus it would keep growing.
My AN is now 2.6cm (was 2.3cm when diagnosed late last year) and I'm scheduled for a translab in March. I'd be interested if anyone else here had a cyst within their AN, and if so what the doctors told them about it, and if treated, how the treatment went.
Cheers!
JB
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Hi Connie and welcome.
You've gotten lots of good advice and I really don't have much to add. How much imbalance do you have now? Usually the more you have before surgery, the less you will have after because the balance nerve on the other side has already started to take over. Cutting the damaged balance nerve on the AN side is necessary for this to happen, otherwise the brain gets mixed signals and can't readjust. I didn't have the middle fossa approach, but this is true for all approaches, as far as I know. The one exception I've heard to this is that Wayne's (wcrimi) doctor was able to save his vestibular nerve by doing some kind of graft. Perhaps he will answer this post. I'm sending you good thoughts and wish you luck in making your decision on treatment.
Best wishes
Wendy
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Hi Connie,
I had middle fossa in August 2008. I didn't have any balance issues before my surgery, so I was told to be prepared for the balance issues because my non-AN side balance nerve had not had to take over anything at that point. My surgeon also told me that always to keep in mind that it is temporary.
I did have balance issues after the surgery, but the more walking I did, the better it got. I never used a cane or a walker - my surgeon believes that you recover faster without them - and by 2 weeks post-op I was walking inside and outside on my own with no help. I was walking slow, but by golly it was with no help. Until then, I would walk with members of my family and hang onto their arm as we walked. I also did a lot of reading on the different kinds of exercises that folks here on the forum mentioned in the balance issues section and did those, too.
I only fainted once, and that was at 5 days post-op when I was watching my mom take the "turbon" off of my head. As she unwound it, I watched it go round and round and I got VERY dizzy, sat down and I was out for the count. LOL. That was the first and only time I ever felt "dizzy". OTherwise, it was more of a sideways/back and forth kind of balance issue with me. NEVER had the spinning room dizzy sensation.
I went to a Vestibular Physical Therapist at 4 1/2 weeks post-op. My PT said that because I had been walking and exercising regularly I was doing so well that she gave me additional exercises to do and I didn't need to go back unless I was having problems. After a week of doing the exercises that she gave me (very simple and short ones) I had a BIG improvement and went back to driving.
Everyone is different, but that was my experience. What Donnalynn mentioned about your head being heavy like a fishbowl inside of it is a pretty good description of how my head would feel at first a lot, and then over time if I over did it or when I started doing a new exercise. Not at almost 5 months post-op when I overdo it or I don't get enough sleep and am fatigued the feeling is just very slight and doesn't really bother me that much. The heavy fishbowl has turned into a little goldfish. ;D I just keep working through it and still see improvement. Also, the recover wasn't a steady incline for me - there were dips in the process - like 3 steps forward/1 step backwards at times, but overall it just kep improving.
I mowed the grass in Oct (self propelled, thank goodness), I shovel and snow blow now this winter and feel that I am pretty much back to normal. Now I pay more attention to not overdoing the lifting stuff so that my tennis elbow(s) doesn't bother me! ;) So, I guess that's a good thing!
Hang in there, you will be fine and remember it's temporary. I personally believe that the mind plays an important role in how the body recovers. Also remember that the more you walk the faster it gets better.
We will all be thinking of you this week. You will be fine.
Cathy
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Best wishes, Connie!
You also made it into the weekly update: http://anausa.org/forum/index.php?topic=8468.0
Hope all goes well, and we see you back here soon.
Steve
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Welcome and Good luck. I had surgery 10/30/08 and I had to use a walker for awhile but a couple of weeks out I was walking around the house without it and about a month later short trip to the store with my wife was ok but I got tire very fast. It just depend on you and if you feel ok to walk without help. Take it easy and don't push it.
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Good Luck Connie - you will be in our prayers!
K ;D
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Connie -
I wanted to wish posted good luck wishes to you under AN Community but wanted to drop in again and wish you good luck with your middle fossa surgery on the 13rh. You will be in my thoughts and prayers.
Best wishes,
Wendy
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Did I miss any updates????
Connie - hopefully you are well on your way to getting out of the hospital and home. I can only imagine that would be one of the first postie victories.
Good luck.
Ann
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I had my Middle Fossa surgery Jan.,13th am, and came home the afternoon of Jan. 16th. Dr. Paul Gidley and Dr. Franco DeMonte of MD Anderson Cancer Center in Houston performed the surgery. I was walking without help, and doing the stairs at the hospital with a therapist up and down the 15th. I start therapy soon to learn how to deal with the balance issues. I could hear from my AC ear when I was in ICU, but I cannot hear now. They said that sometimes happens from swelling and some fluid pressure from the surgery. They are confident that my hearing will return. The pain factor was a small hassle as I reacted badly to hydrocodone (some cool hallucinations while my eyes were closed 8)) and I didn't want morphine after the 2nd day, milder stuff worked quite well and I don't think I'll need much after today. They removed all of the tumor except for a "razor" thin slice of cells on the facial muscle nerve. That was the plan if it was found to be impossible to avoid facial muscle damage in an effort to remove all of the tumor. It may or may not grow back, if it does, it will probably be slow, and I'll be watching for it. I can smile, raise my brows, close my eyes and I am so grateful to both of these surgeons. Now, the haircut they gave me is another story.... :-\ My husband, who stayed with me 24/4, thinks it's cool. I think he just wants bragging rights for taking such good care of my stitches : ).
I am also so thankful for witnessing the wonderful attitudes of the members here. I have much admiration for so many who have gone through this (much worse than mine) and still have such a positive outlook and put so much effort into helping others here. Thanks again. I will try to do the same.
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Great news, Connie!
I hope your hearing comes back, but even without it, it sounds like a very good outcome - a smiling patient is always good news. Are you taking anything for the swelling?
Be sure to get lots of rest, and take it gently as you get going again. Let your husband do everything for a while. ;)
Steve
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Hey Connie,
Congrats on becoming a postie...and what a postie you are! Home so quickly and doing well it sounds like! Do be sure to take naps, many naps; you still need them and you may never have a better excuse to take them ;)
Let us know how things continue with you,
Cindy
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Way to go Connie! Glad you're on the other side of this and with minimal complications. I also couldn't hear a thing immediately after surgery (well, lots of crickets) but once the swelling came down my hearing improved. It's now the same as it was before surgery. I wish the same for you.
Best,
=Marci
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Connie -
glad to hear things turned out well for you - it sounds like you are having a great recovery ;D
Welcome back postie!
Jan
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Hi, Connie:
Welcome to 'postie-land' and congratulations on your successful, complication-free surgery! I love reading about these kinds of surgical outcomes and I know your experience will be an encouragement for many. May your recovery be continuing, total and uneventful. :)
Jim
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Hi Connie,
Congratulations on having such a successful surgery. It sounds like your recovery is off to a good start and I'm sure things will just get better. Please keep us posted -- we love hearing good news!
Wendy
P.S. Kudos to your husband too for taking such good care of you!