ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: amye on April 05, 2009, 10:52:30 pm
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Hi everyone. I'm new to the forum, although I've been visiting for the past couple of weeks -- just diagnosed three weeks ago with 4mm AN. Although it is small, I am really struggling with vertigo for one month now. Does anyone have experience with this symptom? I am hoping to be able to manage it while I explore treatment options. I have been advised to "watch and wait" because the tumor is small. However, my symptoms are pretty bad. I am 42 years old, the mother of two small children (one 2 1/2, one 8 weeks), very active life, so I have to be able to function!
Cheers,
Amy
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Hi Amy,
Welcome to the forum. I know there are some people on here who have dealt with vertigo, I hope they will respond to you soon.
4mm is pretty small, but if it is causing vertigo problems, that can be no fun. Odd as it may sound, the best thing to have happen may be if the AN takes out the balance nerve on that side completely. The trouble arises mainly when the nerve is partially functional, and sends misleading information to your brain. Surgery also typically takes out the nerve completely, and though it takes a little while to make the adjustment to using only one balance nerve, it works out pretty well in the end.
How bad is pretty bad? Do you find you have to lay down with the room spinning, or is it more like dizziness for a minute? Have you been to a vestibular lab for testing? That might provide some useful guidance.
Steve
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Hi Amy! I will say welcome, also! (But sorry you have to join this club...)
You will find WONDERFUL people here, this forum is simply FANTASTIC!
I have not had too much experience with vertigo - just once, with the whole room spinning for a minute or two and it was not 'kul.'
Luckily, i was going to bed at that point, and just let it pass. I'm sure you will hear from others on the forum regarding this issue.
In the meantime, research, research, research! As many others say, knowledge is power.
All my thoughts and prayers are with you.
Sue
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I am mainly welcoming you here as well as my bout with vertigo was short lived. For about 3 days, I had on and off vertigo along with vision problems. Funny thing is, if it had lasted a few days more, I would have gone to the doctor sooner than I did. In my case, I had no hearing issues when the vertigo struck. It was much later...maybe 6 months to a year later before I started to have hearing loss and tinnitus.
One thing I will caution you on. If you don't have any hearing loss or tinnitus yet, you may want to consider treatment early. Many people do prefer to watch and wait, but there is a pretty high probability that it will begin to affect your hearing nerve as it grows, assuming it hasn't already. The only symptom I saw mentioned in your post was the vertigo.
Ernie
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Hello, Amy - welcome!
I was a severe vertigo sufferer for quite a few years! I had a number of episodes that were completely debilitating - could NOT get out of bed, etc. A couple of times I did end up in the emergency room due to dehydration from being so sick...you get the picture. These severe episodes usually only lasted a couple of days, though. Then, I also had what I called "mild" vertigo days that never really went away...I did not continue to seek medical help as I thought there was nothing that could be done and I just learned to live with it. Once I was finally diagnosed, years later, because of a new development (tinnitus), I realized that the AN was the cause.
Anyway, after six months of research and consults with a number of doctors, I eventually decided to have the AN surgically removed so that, among other reasons, the balance nerve would be completely severed - giving the other side of my brain the opportunity to really compensate. I still have a bit of wooziness when I do certain activities, but that doesn't stop me! However, I have had no further true vertigo (room spinning).
As you'll see and hear many times here on the forum, everyone is different and the treatment decision is, of course, ultimately your decision. It's a tough one, but we'll help in any way we can by sharing our experiences and answering questions you have.
Best of luck to you,
Cindy
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Thanks everyone for your responses! I feel lucky to have such a forum...(although not so fortunate for the reason I need one). I had a severe episode of vertigo about a month ago which precipitated my diagnosis. I had been doing really well until this past weekend, when I had a relapse and my dizziness/blurred vision returned. I already do have mild hearing loss (high frequency) in the affected ear, and mild tinnitus as well (neither of which I noticed before the vertigo episode and subsequent diagnosis). I am definitely researching my options. In addition to being a new Mom, I am also ride/train/show horses competitively, so I'm really freaked out about the balance issues. I am leaning toward radiation, but I have heard that it doesn't help with dizziness issues. Does anyone know if this is true? I am afraid that if the balance nerve is removed, I will never be the same again and this will impact my ability to ride my horses.
This vertigo stuff is really debilitating...can't drive, ride, etc. I have heard that this is an unusual symptom, at least persistently. My doctor (a neurotologist here in Atlanta) says he isn't even sure that th AN is causing the symptoms...I feel like he is sorta blowing me off.
I'm confused and scared...
Amy
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Thanks Cindy (we were posting at the same time!) Your situation does sound similar to mine. I have sent my info to House Clinic and should hear back from them this week. I am really scared of the surgery! I am VERY physically active and I'm so afraid of losing any functioning. But I can't live like this indefinitely either! Were your symptoms intermittent/episodic? I seem to have a long period of residual dizziness/blurry vision after each episode. And the doctors seem so dismissive of all this for some reason!
Thanks soooo much,
Amy
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Amy~
Hi & Welcome!
You need to talk to Vonda (arkansasfarmgirl) - she was a VERY new mom when she had surgery and is very active with all the horse stuff. I believe that she said she sold her horses before surgery b/c she thought she wouldn't be able to ride them but is already looking for new ones!! Search for her!
K
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Amy,
I agree with K. See if you can contact Vonda and speak with her. It may help to settle your fears some.
First, Did your doctor have a reason for believing that the vertigo may not be related to your AN? The AN directly affects, in fact, grows around your vestibular nerve. I'm not a doctor, so won't dispute his belief, but it does make me go "Hmmm...."
Second, it is true that radiation can leave the balance nerve partially functioning (in the shape it was in prior to treatment). But radiation also has a greater chance at saving hearing and does not require hospitalization. There are pros/cons to each, which is why so many people here struggle with making that very decision :).
With surgery, the balance nerve is completely removed. It will take some time for the brain to adjust, but coming up on 5 weeks post op, I can tell you that my balance has improved a lot! I still get light headed when turning my head quickly, but I am still improving slowly. I am returning to my job next week, but I don't ride horses :).
You will get lots of good advice here on the forum, but none of us are in your shoes. You will find that after making a list of what's important to you, and the pros/cons of each treatment, you will come to a decision and finally feel at peace with this whole AN journey. You may not think so now, but you will :).
Ernie
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I guess with AN`s beside size alot has to do with location. With such a small AN you would think there would be nothing noticeable. In any case with symptoms that are that disturbing probably a good idea to act. Also with a AN that small a much easier task for treatment. My AN is 12mmx06mm with only symptoms tinitus slight hearing loss for many years. Its not that disturbing for me to act W+W but who knows what the future brings? In any case judgeing by this great board and modern technology AN`s are very treatable and all will be good. Best wishes! Mickey
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Thanks everyone! I will definitely try to find Vonda.
This is such a scary and confusing process, and I truly appreciate having you guys to bounce things off of. For example, the medical literature really downplays the vertigo/balance stuff (focuses much more on hearing and facial nerve issues) but I see lots of people mentioning this as a symptom on the forum. To answer your question, Ernie, I think my doc here is equivocal about the vertigo because it happened so suddenly, and the tumors grow very slowly. Not sure what would have gotten it started. He has lots of experience with ANs, so I don't know what to think. I just want these symptoms to go away so I can get back to living my life!
By the way, House seems to have lots of negative things to say about radiation options. Has anyone else struggled with the lack of long-term data on radiation outcomes? Although rare, the oncogenesis (turning the AN into cancer eventually) threat is very scary, esp. because I have these two small children and such. Any thoughts?
Amy
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Hi Amy,
Sorry you are having problems with vertigo. I had just one very bad bout which led to my diagnosis but I get days where I have an 'on a ship' feeling and have a travel sickness type of nausea... when I sought advice I was told to keep active and do more walking!
I just wish I knew what is was that made this occur on some days and on not others as I can't see a pattern to it. So I walk a lot even when I don't feel like it and stay as active as possible! So sounds like you are doing all you can...
... and yes having an AN is scary and confusing and the process of working out how best to deal with one is not easy but you will know when the right way comes along.
As for your Doc.? Maybe he doesn't know as much about AN's as he thinks... ;)
x
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Hi Amy,
How challenging it must be to care for two little ones with vertigo! I understand your concerns - and I don't know how long you have been dealing with this, but if it's any help, my AN symptoms come and go. I have been a watch & wait gal for two years now, and sometimes I have increased hearing loss, then it returns; sometimes really dizzy - then that goes away....and so on. Sometimes I even feel completely symptom-free! So maybe in time your vertigo will subside. I don't know if there is any medical info to back this up, but I have a sense that my body re-adjusts each time there is a change in my hearing/balance and the brain compensates.
I hope this is helpful, and hang in there!
Suz
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Hey again, Amy! Are you in the Atlanta area? I'm up in Cumming. I'm going to send you a
PM w/ my phone number...
There is no rush to make any decision - you have time on your side. As for being active after surgery, there are many, many of us who have returned to most activities that we did pre-surgery. Might take some time, might have to make some adjustments, but it is possible in most cases.
Talk to you again soon,
Cindy
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Hi, Amy ~
Although an acoustic neuroma diagnosis is no fun, I'm glad you found this website and the forums.
Vertigo can be very debilitating and, even with small tumors, can be a symptom that drives the AN patient from observation ('watch-and-wait') to treatment, be that radiation or surgery (or both, in some cases). In your situation - mother of an infant and a woman who is very active and rides horses - you're probably even more negatively affected than most by these symptoms. In all honesty, Amy, they usually don't go away or significantly diminish without some kind of treatment - but the tumor is eminently treatable. I should mention that, today, there is also the possible option of endoscopic surgery to remove acoustic neuromas. This surgical approach is much less traumatic than conventional microsurgery, with an average discharge time of 48 hours, as opposed to the typical 4-6 day hospital stay with conventional microsurgery. Unfortunately, this procedure is not yet widely available but the Skull Base Institute http://www.skullbaseinstitute.com/ (http://www.skullbaseinstitute.com/) is a pioneer in the approach and has many success stories. Some of our members are 'veterans' of this procedure and will testify to it's success. I believe that it's worth considering.
As for the risks of oncogenesis with irradiation, I believe the statistics are somewhere in the range of 1 in 1000, an almost infinitesimal number. You have to understand and take into account that most doctors are biased one way or the other, be it toward surgery or radiation. That's why you have to do your own, independent research (thank goodness for the internet!) and, when it comes to treatment, 'follow your 'gut'.
As others have stated, this is a surmountable situation. Back in 2006, I was 63 years old and diagnosed with a large (4.5 cm) AN. I underwent microsurgery to reduce the size of the tumor and cut off it's blood supply, then, after a planned 90 day 'rest period', I underwent FSR; 26 'low-dose' radiation treatments over 5 weeks, focused on the remaining tumor. I'm happy to report that I came through both procedures relatively 'unscathed', with only a few very minor deficits that are invisible to others and do not affect my quality of life. Whatever approach you ultimately chose to address your AN, I wish you a similar outcome. :)
Jim
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By the way, House seems to have lots of negative things to say about radiation options. Has anyone else struggled with the lack of long-term data on radiation outcomes? Although rare, the oncogenesis (turning the AN into cancer eventually) threat is very scary, esp. because I have these two small children and such. Any thoughts?
I generally prefer to talk to the plumber about my kitchen sink, and to the electrician about circuit breakers. In the same sense, I think it is better to talk to surgeons about surgery, and to radiation oncologists about radiation. In short, though, you should be more concerned with practical questions, like how well radiation would work out with your balance nerve issues, than with the low probability risks associated with radiation and surgery. They are there, but they are too small to spend any time on.
Steve
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Welcome Amy
You have a lot on your plate with such a little one. We have several moms with youngins - I have four (as does Anissa), many with two, one due any day and one post-treatment due with twins in July. Vonda had surgery with a really little one so she can offer great insight into that one (and the horse angle too!)
I also have a small tumor (see my siggie) - mine is entirely intracanicular, and am in watch & wait. I was diagnosed in December so still a newbie.
I had very mild issues with the light-headedness/dizziness over the past few weeks - nothing that slowed me down too much, but did get me into a bit of a state (I was just getting comfortable with the watch & wait approach and the 2 months to go until my next MRI). I ended back up at the ENT - who did a few tests involving pens, following objects, shaking my head for nystagmus (unusual eye movements - my definition, not at all technical).
He suggested that the dizziness/light-headedness is par for the course. Interestingly, despite normally me being pretty laid back, he also brought up the role of anxiety and dizziness. While I don't think I am that anxiety ridden, I think I got myself going a bit with the dizziness - if I looked from paper to computer screen, I would get light-headed, walking up stairs got me dizzy and walking on the subway platform while the train whizzed by was (and still is) extremely difficult (I now stop and look away). The ENT put me back on track - and while still light-headed, much improved from a week ago. He explained blood acidity, capacity to carry oxygen, faster breathing when anxious ... all lead to dizziness. I also read on the cyberknife forum yesterday that some doctors recommend very very small doses of valium to help with the vertigo common with ANs (that was new to me).
I am not at all suggesting your aren't suffering from some pretty extreme bouts of vertigo but given your plate - new babe, new diagnosis, dizzy/vertigo etc. - I am not surprised you are faced with some symptoms.
Give it some time, enjoy that little babe and see where you get to in a few weeks -hopefully time, a bit more sleep (which I have read from many escalates symptoms) and a lot more knowledge, and you feel a bit better.
Ann
PS - probably a bit personal, but do you get dizzy/suffer vertigo spells while breastfeeding (if that is your choice)? Just curious, on my anxiety angle - breastfeeding naturally calms mothers - so given I am constantly curious on the impact these ANs have on our lives, I am just wondering if you have similar symptoms while nursing. [When you are a mom of many, nursing doesn't involve much time on chairs with your feet up - it is amazing what you can accomplish while feeding - it isn't leisure time anymore!]
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Thanks everyone! What a wonderful supportive group of folks out there! I really appreciate you guys sharing your stories, knowledge, and wisdom with me.
I'll continue to research treatment options. In the mean time, I started a "scop patch" which has my symptoms under control and allowed me to go to work today. Hurray!
Amy
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Hi Ann;
Wow, you do have your hands full! Yes, I am breastfeeding - this is one of the primary reasons I want to wait awhile before treatment. I really want/need to feed my son for at least six months. And yes I'm very sleep deprived and still in that postpartum place hormonally. I've even wondered if the hormones haven't "set off" my vertigo problems in some way. Although I was only recently diagnosed, I had an MRI 13 months ago (for another symptom that turned out to be sinus-related) and when we went back and looked the AN was there -- the radiologist had missed it! But at least I have a baseline, and I've been told that the tumor has not changed since that time. So why the sudden symptoms? I guess these ANs can be tricky that way...
It makes perfect sense that anxiety exacerbates vertigo, and I have certainly struggled with anxiety since being diagnosed. However, the vertigo has beens severe (including nystagmus and the works). I basically need to figure out how to manage it until I decide what to do...and get my baby out of his infancy at least.
I've sent my MRI's to both House and Pittsburgh for opinions. Hope to get some input from them this week.
Hope your dizziness gets better! There are several medications that help if it doesn't resolve on its own.
Amy
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Hi Amy,
Welcome to the group. I've found it to be very helpful.
I was just reading through your posts... I have dizziness/lightheadedness as well. Sometimes it comes on me in waves and I need to take a minute to get my bearings back. It seems to be much worse when I'm tired (which it sounds like you are!). During these times, it's especially difficult to get out of bed in the morning. Sometimes I'm late for work because I just need a little extra time to pull myself together.
Because of your new baby, you are most likely very tired. Nursing takes a bit out of you as well (I nursed my daughter for 11 months!) and I remember feeling wiped out. Especially during growth spurts. :D
I also know how you don't want to 'deprive' a baby because of your own medical issues. I had post partum issues with my daughter as well and was terrified that I would be hospitalized and would't be able to be with my little one. I sincerely understand that feeling of not being a 'complete' mother while I was ill. You definitely have my sympathy's with that one. This is a great place to vent concerns and share experiences.
Hope you are well and getting as much rest as you are able. Take care,
MissMolly
Nowadays, I don't have a baby, but I do have kids at home. I do try to get as much sleep as I possibly can. I hope you can sneak in some days where you can 'veg' for the whole day. Don't feel like you can't ask for help in caring for the baby.
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Thanks MissMolly for your kind words...really nice to know that someone understands. My babies are definitely keeping me going these days! Amazing how strong the maternal instincts are, huh?
Sounds like you were diagnosed right around the same time I was. How are you doing?
Cheers,
Amy
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Hey there, Amy. Sorry I didn't get back to you sooner.
Yes, it sounds like we were diagnosed at about the same time. At first I felt like someone had taken the wind out of me. Couldn't think straight for quite a few days. Now I'm becoming more used to the idea. I still think about it a lot. I wake up in the morning to 'the dizzies' and my left eye is red (not closing while I'm sleeping?). And then there's the ringing ringing ringing!
I've decided that I have lots to be grateful for in my life: great husband, good health insurance (no small thing!), a job that can accomodate my frequent fatigue and dizziness and, of course, that this tumor is benign. A friend had a malignant tumor removed in January from her occipital lobe and now has another one on her spine. Lots of surgeries, lots of radiation therapies. And she has four children - three still at home. So, I just wake up in the morning and quote Dory from "Finding Nemo"
"....just keep swimming, swimming. All ya gotta do is swim, swim...."
Have a great day. I hope you are doing well and enjoying that little bundle.
Molly
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Molly, are you putting gel in your eye when you go to bed? If not, you can try some type of gel and just see if that is enough to help you. If it is still red than maybe something like some saran wrap over it might help. I just used a bit of gel to help hold it on but may need tape. There are many different brands and what works for one may not work for another. I am big on the Refresh ones. All the AN annoyances get very frustrating.
Cheryl R
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I generally prefer to talk to the plumber about my kitchen sink, and to the electrician about circuit breakers. In the same sense, I think it is better to talk to surgeons about surgery, and to radiation oncologists about radiation.
Hi, Amy and welcome. Somehow I missed your first post.
I'm with Steve on the radiation vs surgery question. I was lucky enough to be referred to a neurotologist who treats ANs with goes both radiation (GK) and surgery. And while he gave me the name of the radiation oncologist he does GK with and the neurosurgeon he does surgeries with so I could talk to them prior to making my decision, I decided not to call either one of them. It was my theory that each doc would recommend the procedure he personally does.
Lots of docs only treat ANs in one way, and IMO, if both radiation and surgery are options for you then you should investigate the pros and cons of each procedure. I'm not sure if you've contacted the ANA yet about their literature, but if you haven't, I strongly suggest it. It has a lot of very valuable information and it's written in easy to understand terms. Being diagnosed with an AN can be overwhelming, the literature will help clarify things for you.
Good luck,
Jan
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Hi Amy, I'm new to this forum also but not new to the neuroma. I was diagnosed in Jan of 2002 with a 7mmx4mm on the left. My only symtoms were dizziness and unsteadiness...and ringing in the ear. I thought it was an ear infection actually. I've been in w/w mode until last year when my dr says its time to think about treatment. t's now 1.6 x .8 x .7cm. I could have done treatment earlier but i decided to wait. The only regret I have in doing that was in August of 2004 i woke up one morning with most of my hearing gone. Steroid treatment did not reverse it at that point. This might be something you want to factor in your thinking and talk to your dr about if hearing preservation is a goal at this point. I have no hearing to save at this point. I was told i wasn't a canidate for baha either. So i just wanted to share that it is possible to lose the hearing rapidly without warning.
I hope to interact much more with you and the rest of the family in the future
Deb
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Deb -
mind if I ask who told you you aren't a candidate for the BAHA? and for what reason?
Just about anyone who is SSD is a BAHA candidate.
Jan
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Hi Jan, My dr did. It wasn't discussed in depth at all though....something about damage and the kind of hearing loss accured. but i truely don't remember exactly what. short term memory at times. can be a real problem when trying to remember all the info we research. I guess you disagree with this? For as long as i 've had this you would think that i would have it all figured out but I truely just had to forget about it for a while in order to help my husband get through difficult times. Now its my turn. Any imput would be helpful.
thanks
Deb
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Deb -
does your doctor actually do BAHA implants?
I'm obviously not a doctor, but it is my understanding that anyone who is SSD (single-sided deaf) aka unilaterally deaf is a candidate for the BAHA regardless of how they became SSD - congenital, through AN surgery, accident, etc. One of the few requirements is that you have serviceable hearing in your other ear. There are two BAHA processors (tiny hearing aids) - the Divino for those with good hearing in the "normal" ear and the Intenso for those with not so good hearing in the "normal" ear.
If you are bilaterally deaf (deaf on both sides) you would be a candidate for a Cochlear implant.
You may want to check out Cochlear America's website (www.cochlearamericas.com) and go to "Find a Clinic" to see if there is someone in your area who does BAHA implants. My neurotologist has done numerous BAHA surgeries and he's incredible, but I don't know where you live in relation to me (I'm just outside of Chicago).
A doc who does the BAHA implant can let you try the demo - which is basically the processor attached to an elastic headband to give you an idea of what it will sound like. In my experience, the demo is amazing, but the real thing is even better.
I've been in love with my BAHA since the day I tried the demo and couldn't live without it. While it's not like having my "normal" hearing back, IMO it's the next best thing.
Good luck,
Jan
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Hi, Amy:
Sorry you are having vertigo. I know what that's like (more on that in a bit).
It is not at all unusual that you are having vertigo attacks with having only a small tumor. In fact, it is thought that vertigo occurs more often in patients whose tumors are small. Vertigo is most definitely a symptom of having an AN. Put bluntly: your doctor who said it wasn't related doesn't know what he's talking about. Find another doctor.
House isn't always down on radiation. Dr. Brackmann (House neurosurgeon) actually recommended that I get radiation treatment instead of surgical resection for my tumor. His reasoning was that I was more likely to have my hearing preserved with radiosurgery than with resection. (He concluded this after studying my MRI, audiogram and ABR -- auditory brainstem response -- test results.) I have nothing but deep respect for House Ear Clinic and for Dr. Brackmann for offering his unbiased opinion.
Studies show there is no more risk of getting cancer from radiation treatments than the risk to the general population of getting cancer. Opinions to the contrary are derived from decades-old research data obtained back when massive doses of radiation were used to control ANs -- and with much less accurate machinery, I might add.
Now my story, in brief: I had vertigo so bad that it sent me to the hospital for rehydration. I had to hold onto walls to stand up and walk, for two weeks. My vertigo lasted -- non-stop but with decreasing severity -- for months and was accompanied my oscillopsia (bouncing vision when I walked, kinda like what you'd see through a camera's viewfinder while walking). But eventually the vertigo and oscillopsia went completely away as my brain began to adapt to and ignore the abberrant balance signals coming from my damaged vestibular nerve on my AN side. Now I have a constant, usually mild sense of disequilibrium that doesn't stop me from having an active lifestyle (indeed, my active lifestyle helps my balance).
My point is that your balance will improve over time. Life gets better. And radiation is a viable option, despite the opinions of some neurosurgeons who don't practice this form of therapy and haven't kept up on the latest findings supporting its use and success rate.
May you find peace and healing along your journey, Amy. We'll be here with you every step of the way.
Best wishes,
TW
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Tumbleweed and Amy,
I don't think I was aware that Tumbleweed had that much vertigo going on prior to treatment - or I forgot. It is actually quite encouraging to hear that it did settle down in time, either the other side compensating, or the AN finishing what it started, or some of both. I am curious, Tumbleweed, whether the vertigo subsided before treatment? Does it make sense to wait for it to settle down again before you get radiation? Anyway, it is an encouraging result that you can do radiation even when there is a significant balance nerve issue.
Steve
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Thanks to everyone for your posts! I certainly feel much less alone with this than I did a week ago when I joined the forum. Since my earlier posts, I have consulted wit Dr. Freidman at House and he is recommending the Middle Fossa surgery because my hearing is still very good. This scares me because it seems to be a riskier surgery in terms of other complications. Any advice/input on this is welcome!
Has anyone had Middle Fossa and retained hearing?
I have also been in contact with Dr. Kondzoilka at U Pitt -- he sent me a letter stating that I am a "great candidate" for radiation, yet I still haven't talked to him. I have lots of questions about my balance issues and GK.
In the mean time, I continue to be plagued with bouts of vertigo, dizziness, and vision problems. The medications that were helping a couple of weeks ago are not as effective now, and so I am seriously considering treatment in the next few weeks (as opposed to my initial plan to wait six months). I'm pretty miserable with these symptoms, and am having trouble taking care of my babies, working, etc. I wish I knew if they would eventually stop!
Thanks again for all the unput!
Amy
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Hi Amy, Actually any of the surgeries can have complications and tumor location is factor in it. Cathy who is doglover had her hearing saved with mid fossa last summer. I am NF2 and was deaf prior to one mid fossa and not sure why he did it. A year ago this Fri the 17th, I had mid fossa done on the other side and was almost all the way deaf and it brought my hearing back to fairly good. We both go to Univ. of Iowa and Dr Bruce Gantz. I know a lady from Erie PA who had hers saved. She is not on the forum. There was mention of others recently when someone asked the same. Some time what problems you may have are also due to how the tumor has damaged that nerve, which with your size should be less than some have had. I had temporary facial paralysis with the first mid fossa but none on the other side. Cathy had none also. Good luck on trying to decide what to do as it is a challenge.
Cheryl R
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Cheryl is right. All the surgical approaches have the potential for side effects.
Mid fossa does give you the best chance of retaining your hearing though and there are many forum members who had mid fossa and kept their hearing.
Retrosigmoid gives you a chance of hearing retention also, but it's results aren't as good as mid fossa. I'm a perfect example of that. I had retrosigmoid and ended up SSD.
Jan
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I don't think I was aware that Tumbleweed had that much vertigo going on prior to treatment - or I forgot. It is actually quite encouraging to hear that it did settle down in time, either the other side compensating, or the AN finishing what it started, or some of both. I am curious, Tumbleweed, whether the vertigo subsided before treatment? Does it make sense to wait for it to settle down again before you get radiation?
Steve, my vertigo went completely away several years before I got treated. (I was misdiagnosed for over 7 years.) At the time I was diagnosed, I still had 29% of my balance function remaining on the AN side, but no vertigo (just disequilibrium). So the AN didn't quite "finish what it started." Dunno if it's best to wait for vertigo to settle down before getting treated. Some people have disabling vertigo for many months or years, during which time an AN may grow significantly. They tend to grow slowly, of course, but can have growth spurts (like mine did just before treatment). Of course, and as Steve is well aware, radiosurgery can make whatever symptoms you currently have worse, so this is definitely something to consider. Amy, I'd ask your doctor about the risks of having your vertigo get worse with treatment.
Best wishes,
TW
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Good advice, TW. This is why I am leaning toward surgery rather than radiation. I really wish my symptoms would abate for awhile so I could get my baby through his infancy, but things seem to be getting more chronic, which may mean surgery SOON. I'm having a VNG on Friday which will hopefully shed some light and help with decision-making.
TW, how is your balance now?
Thanks to all for your support. This is REALLY HARD!!!
Amy
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My balance is not that great, but I don't have vertigo or oscillopsia anymore. If I stand on one leg and close my eyes, I fall over after about 5-10 seconds. Crossing a log over a rushing stream is impossible, too. But in my everyday life at work, I usually don't notice my disequilibrium; I typically only notice it when I'm walking.
Amy, I'm not sure there is any less risk in having your vertigo get worse with surgery vs with radiation. If the tumor is adhered to your vestibular nerve and must be "scraped" off, the nerve may be damaged as much as it would be by getting a hit of radiation. And the risk of damage to the facial nerve is, from what I understand, considerably greater with middle fossa surgery than with radiation.
Your doctor will be able to give you the "odds" of damage to various nerves and function with each type of treatment. I would recommend you get at least a second opinion. I got 6 opinions. When they all recommended radiosurgery (some recommended CK, others GK), I knew I was making the right decision by choosing radiation. Having a bunch of professional opinions will give you a clearer picture of your options and the general consensus about the best treatment for you and will get you past the roughest part of this process -- choosing when, where and how to get treated.
Best wishes,
TW
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Thanks for your input, TW.
What is oscillopsia?
Amy
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TW, never mind...I googled it. That is exactly what I have following my vertigo bouts!
Amy
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Hi Amy,
I've been reading the posts, and hope you are feeling better. So much stress surrounding a newborn, your other "baby"- they require A LOT of attention when a new baby enters the home, breastfeeding, AN, etc!
Enough to make my head spin >:(
I understand wanting to breast feed through this all but have you considered stopping after 12 weeks? I've heard 3 months is the minimum recommended time for gum/teeth/immunity benefits.
Has your doc discussed short term steroid treatment to calm things down?
I was lightheaded for years, and just not feeling good. I was trying to figure out what the heck was wrong with me. I even diagnosed myself with Meinier's (?) disease before I had my MRI, but I wasn't having
the vertigo.
Youand your body are under so much stress. I feel for you. All of the symptoms get worse, whatever they are.
Hang in there. Enjoy your newborn lying down, and hopefully you have help with your other "baby".
Maureen
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Hi, Donnalynn:
I don't doubt that in your case middle fossa did offer the best chance of avoiding facial paralysis, if that's what your doctors said. And from what I've read, there is only a slight increase in risk of facial paralysis with the middle fossa approach compared to that with other surgical approaches. But my understanding is that the prevailing opinion is that middle fossa increases risk of damage to the facial nerve because it involves coming into the IAC from above the ear; and since the facial nerve is the topmost of the four nerves (those being the facial, superior vestibular, inferior vestibular and hearing nerves, from top to bottom) running inside the IAC, it is "in the way" when approaching the vestibular nerve, the common site for an AN (AKA vestibular schwannoma). A skilled surgeon can usually avoid nicking the facial nerve, but still, the facial nerve is more in the way of getting the job done with middle fossa approach than with any other approach.
Of course, I'm no doctor. But it's good to know this stuff so that anyone who is considering surgical resection can ask their neurosurgeon about the attendant risks of each approach and why a specific one is being recommended.
Sincerely,
TW
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Hi TW!
Thank you for the lesson in anatomy! Gee, i always learn something new on the Forum about ANs, where they grow, etc., etc.
When i went for a surgical consult at Hopkins, the doctor there told me he no longer does Middle Fossa, i THINK because of the tendency for additional complications, but i would have to ask again to be sure. None-the-less, i found this interesting. I suppose surgeons have their preference on the approach, and that's fine. This was my first and only surgical consult to date, so i have nothing else to compare to at this point.
Amy - i hope you are finding some answers to your questions on the Forum.
Aren't these folks fantastic??!!
Keep us posted.
Thoughts and prayers to you and your family.
Sue
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Amy...how you feeling today? Hope you get some answers from the docs today!
Talk w/ you later,
Cindy
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Hi Everyone;
Just got back from VNG test - found out I'm down to 50% vestibular function on AN side. Guess that's good news in a way...hope it finishes the job so I can get some peace!
Thanks again for all the support,
Amy
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Hi Amy,
Welcome to the group. I must've missed your posting because I am NOT Watch & Wait. I totally feel what you're going thru. I have an active 20 month old. I've been totally anguished over how to take care of him while I recuperate (if I have surgery). It has been obcessing my brain & for me is the hardest part of this whole ordeal. At least your baby is still young enough that hopefully your friends and family are still eager to come see, visit & hold him/her. Hopefully your 2 1/2 is kind of growing out of the needy, tantrum stage mine is just starting...altho I'm told it lasts until 18:) I kind of live in the outskirts of town & people don't usually just drop in. I'm even thinking of paying for a nice family portrait because I'm afraid my outside will never be the same.
Hey, what is a VNG test? I never had one. Maybe because I'm in the "do something" stage.
You can check out my postings. I think I had one for Surgery w/a Toddler & Balance questions.
I'm going to post an update as soon as the tyke is fed & put to bed.
Best of luck in your journey,
Carolyn