ANA Discussion Forum
General Category => AN Issues => Topic started by: Tamara on February 19, 2008, 12:50:52 pm
-
Hi all,
I'm another newbie. I've had ongoing hearing problems for the past 15 years, but thought it was due to working in a noisy environment, and having 3 babies screaming in my ear, though sequentially, not all at once! I've had significant SSD for the past 10 years, so am no stranger to the elevator issue mentioned in previous posts. My favorite is when I'm trying to find my husband in a store and I call his name, and ask "Where are you?", and he says "Here". LIKE THAT HELPS! ;)
My question is, since the only symptom I have is the deafness, and since my AN is small (7mm), do you think I'm likely to have the post-op issues I'm reading about, like headaches (I've had 2 in my life), or balance issues? I am looking at having the surgery in summer. My 10-year-old daughter is severely disabled, so I will have my 16 and 14 year old sons to help me with her then. I don't know how I will deal with the fatigue issue that I've seen posted too. Do ya think I can pop No-Doz regularly???
Thanks in advance,
Tamara
-
I understand your concerns
and of course every case is different - so hard to be sure
My guess is that the prudent course might be to
organise a little "junior is helper" programme
with rewards and teaching/training to get the little ones
fired up and motivated
it may be the making of them
Best Regards
Tony
-
Hi Tamara and welcome. Glad you found us and hope you find answers (and support) you seek by all that participate here! :)
Your AN is definately small! Have you also researched "watch/wait" to see if it even grows or checked into any radio-treatment options? 7mm is definately small and with your hands full with little ones....
As we all know, surgery is surgery and risks definately are involved, regardless of type of procedure. As you can see by your reading here, individual results may vary, so really can't say. We've seen good outcomes and not so good.
I have faith in you to research to the best of your abilities and know, that regardless of what you decide to do, we are here to support you.
Be well.... and again, welcome.
Phyl
-
I don't know how I will deal with the fatigue issue that I've seen posted too. Do ya think I can pop No-Doz regularly???
Thanks in advance,
Tamara
Its not a sleepy issue (I did sleep a lot the first month) ... its more like running around the house 20 times to get the mail .. come back in and wonder why I need to rest ???
-
Tamara~
Welcome!
It drives me CRAZY when my sweet hubby or girlies say, "Here!" I can feel your pain!!
I can't offer you what many others can b/c there were not a lot of choices out there when I had my surgery, but I would recommend checking out all of the options (which you may have already done). However, I am certainly here for you and would be glad to answer any questions you have about life AFTER surgery -- I had mine 12 years ago when I was 25!
Good luck!
K
PS- I had horrible headaches before surgery and basically NONE now...
-
Hi Tamara
Welcome.
I'm a recent surgery patient. My tumor was relatively small. But during the surgery my facial muscle nerve was stretched. It's made recovery a bit longer and more trying -- especially with the eye issue. They also say that folks with smaller ANs tend to have a little more problem with balance. The people with the larger tumors have already been dealing with it prior to surgery and it isn't that big of as issue post-op. It's a new deal for people with smaller tumors. My balance hasn't been severely off -- sort of like walking on a deck of a rolling ship -- but for the first two months I walked with a cane to be on the safe side. I don't want to be gloomy -- but it's always wise to prepare for the downside. I wasn't prepared and it's made things a bit more difficult. As far as the fatigue issue -- mine only lasted for the first two or three weeks -- sudden nap attacks. It did take awhile to develop a normal sleep schedule. I hope that sheds some light from one perspective. But as you will hear from everyone -- each case is different.
You found a good home here. There's a lot of support, knowledge, encouragement and most importantly, good-natured humor. Best wishes.
David
-
Hi and welcome, Tamara:
We can all sympathize with your SSD as most of us have the same condition. My hearing in the 'AN ear' (my left) slowly diminished over five years so, like you, I've throughly adjusted - but it remains a handicap. Not being able to differentiate where sound is coming from is sometimes maddening. My wife would call to me in a store and I would do a 360 degree turn trying to tell where she was. I felt foolish doing that but had no choice, unless she was close by. Now, when we're shopping in a big store or a mall and going our separate ways, we use walkie-talkies to communicate and find each other, usually by simply designating a place to meet, such as the snack bar or entrance, then setting a time to meet, say in ten minutes. This way, we don't 'lose' each other or waste time waiting unnecessarily.
With a 7mm AN, you have options. One option may be radiation ('radiosurgery') which is non-invasive (no cutting) and requires no more than an overnight hospital stay. In many cases, it can be done on an outpatient basis (no overnight stay). This is something you'll want to discuss with your doctor as location is almost as important as size when choosing a treatment. In some cases, radiation isn't feasible due to the location of the tumor, so surgery is strongly advised by the medical experts. However, be aware that some doctors are biased against radiation and some are just as biased against surgery. You have to discern who is being totally honest with you and not simply take the first doctor's advice without asking specific questions and doing some research which is fairly easy, using the internet.
On these forums, you'll often see the comment 'every AN case/patient is different' for good reason...its true. That truth should be a constant when you read the various posts. Posters can and do willingly offer their personal experience with surgery and/or radiation (I had both) but because one patient with a similar-size AN had a good or not-so-good post-op experience, whether undergoing surgery or radiation, doesn't mean you'll have the same experience, for better or worse. One size does not fit all.
Should you choose surgery, there will be a recovery period when you will simply be unable to function normally due to fatigue. That could last days, weeks or even longer. This is the unknown part. Much depends on the surgeon's skill and the location of the tumor. The after-effect of the anesthesia will linger for a few days and whatever steroids you're given (to reduce swelling) will also have a deleterious effect on your body. In addition, performing this kind of very invasive surgery definitely takes it's toll on you and thus, fatigue is usually a very real after-effect. Radiation has it's own risks and is easier to bear but not a panacea or a treatment that can be guaranteed. The imbalance issue varies with the individual but it is often something the AN post-op/post-radiation patient has to deal with to some degree. With time and effort, imbalance can be overcome. I had some imbalance issues, post-op (see my signature, below, for details) but I was able to surmount them and have negligible balance problems, today. Headaches are become less common with surgery and while not entirely eradicated, they are manageable and probably not a major concern, but you have to be aware that post-op headaches can occur and they can be debilitating. Fortunately, I had no postoperative headaches.
The reality is that with any surgery or treatment, especially when dealing with an acoustic neuroma, there are no guarantees. An acoustic neuroma, even a tiny one, like yours, can present you with a minefield of possibilities. Odds are, you'll be a candidate for non-invasive radiation treatment if you want it, and experience a fairly smooth and swift recovery, but no one, including a doctor or anyone here, can promise that rosy scenario with any degree of honesty. I wish I could.
I would suggest that if you haven't already done so, you try to do as much AN research as you can to educate yourself, have more than one surgical consultation and prepare yourself and your family for a six-week recuperation period following surgery. If you come through with no complications, you'll simply get back to your normal routine that much faster. If not, you'll be somewhat prepared, as will your family. Of course, we stand ready to offer you whatever advice and information we can, as non-physicians.
Tamara, we wish you all the best. We're definitely sorry you have one of these AN buggers but pleased you found this website (it's loaded with excellent information) and that you've engaged the members of these message boards. Please stay connected. :)
Jim
-
Wow, you guys are fast...thanks for the replies. Yes, I've done some research on treatments. I've googled my dr, and found that he seems to be more than competent. He said that since I'm 45 (seems old enough to me, but apparently is still "young"), if I had radiation, the chances are significant enough that the tumor would regrow, as the chance of that happening increases with time. If that happens, it's much harder to remove. Also, since my tumor is small, and my hearing loss is large, he suspects that it is actually on the hearing nerve, instead of on the balance nerve, like most of these are. I'm not really a "watch-and-waiter" either, as the dr said that ANs are easier to remove when they are small.
Does this sound like what you know?
I read on another thread that someone is in Milwaukee. I'm in Greenfield - HI!!
-
I may be totally off here, but I thought that the 8th nerve was hearing AND balance...
K
-
Tamara maybe you could look into respite care while you are recovering for your daughter. I do not know the specifics in your state but you could talk to a social worker in your area that could help you with this. You can also PM me and I might be able to help you a little more. I would prepare for the worst and hope for the best.
Start cooking meals in duplicate and freezing to reheat when you are recovering. You can also do all of your bills ahead of time and just mail them each week. This would save your energy that you will not have allot of for your family. Start now by teaching the older kids how to do laundry, cleaning and reheating of the pre-prepared foods that you have stocked up in the freezer. Maybe you can hire a high school girl to help out with your daughter also. Contact the high school counselors and they can give you info on who would be a good fit with your family. Sometimes they can even get so many credit hours for volunteering.
I do not think I would take no-doz as you will need to listen to your body and take the time needed to heal properly and it can interact with medication you may need to take.
Let us know how you are doing and what you decide. Kisses to your forehead. :-* 16
-
hi tamara,
sorry about your diagnosis, which i know can be from experience can be pretty unsettling, especially those first few weeks. i am 35 years old and treated my 2.6 cm Acoustic Neuroma with Cyberknife last August. i think the information you are receiving about radiotherapy is not accurate. the neurosurgeons with whom i spoke (i really did speak to some of the best and most experienced AN doctors on the west coast) told me that the success rate with radiotherapy is just as good as with surgery, my relative youth at the time of treatment should not matter in your treatment decision, and that the risks in surgery in general are greater than those from radiotherapy. Of seven neurosurgeons I consulted with, six said radiotherapy was a good option for me, and all except two recommended radiotherapy. Of the two exceptions, one said either surgery or radiotherapy would make sense (he did not recommend either approach above the other). The other was a neurosurgeon with no experience with radiation, who told me (mistakenly) that radiotherapy was not an option for me because of the location of the tumor. He was completely off base and did not know what he was talking about.
When it comes to a decision as serious as brain surgery, i think it is worth it to hear from multiple specialists and certainly worth talking to at least one doctor who specializes in treating ANs with Gamma Knife or Cyberknife. There have been great advances in these treatments, and sometimes older doctors are just not fully up to speed. Sometimes surgeons are unduly biased against radiotherapy.
You can speak to some excellent specialists without setting up formal consults:
http://anausa.org/forum/index.php?topic=5794.msg53843#msg53843
If you are interested, I am more than happy to talk with you to discuss my own experience consulting with doctors and deciding on a treatment. Please email me any time.
Best of luck,
Francesco
-
He said that since I'm 45 (seems old enough to me, but apparently is still "young"), if I had radiation, the chances are significant enough that the tumor would regrow,
Okay, it may be off topic, but I just had to chime in and say that 45 is still most definitely "young" ;D
-
Hi Tamara,
Sorry you have had to join this forum but welcome - you will find the information on here and the support invaluable!
Just wanted to say my AN is 10mm and I lost all my hearing on the AN side suddenly - only diagnosed a few weeks ago. My speclist suggested watch and wait as you have to weigh up the risks of surgery and any risks of radiation against the risks of the AN growing suddenly (which does happen I know but is unusual?) and the fact there is no heairng to preserve. I have my next MRI in July so my situation will be reviewed then. However, I have been frequently thinking I would just like it out just to be done with it and I do get other niggly symptoms which I think are linked but then I worry that they may not go away after surgery anyway.... and the longer I go before 'needing' to have it removed the better the techniques/skills get etc...
It's personal choice but I would say make sure YOU are happy with the treatment decision as you are the one who will have to live with it whatever happens.
Take care
x
-
He said that since I'm 45 (seems old enough to me, but apparently is still "young"), if I had radiation, the chances are significant enough that the tumor would regrow....
Tamara,
UGH!!!!!!!!!!!!!!!!!!! >:( I wish dr's were better informed about AN radio-treatments....... GRRRRRRRRRR!!!!!!!!!
Ok, well, I had my Cyberknife at *gulp* at 45, now I'm *oy* 47, met with my team last week, including having my MRI and hearing test.... and we have shown for the last 3 consective MRI's that my growth has stablized in size (actually minimal shrinkage... keep in mind that the goal of radio treatment is not to reduce the size of the growth but to stop it from growing by attempting to kill the core DNA) and my hearing is the same as it was at the time of treatment (as we know, individual results may vary)..... so, for me, my stats totally disclaim what your dr noted.... and I'm sure others here may come close to these results (give or take, depending on which form of radio-treatment was done on their AN).
If radiation is a sincere consideration for you, I (personally) would ask dr's directly that treat AN's via radio-treatments. You can check with the dr's (they volunteer their time to answer patient questions) at http://www.cyberknifesupport.org/forum/. They are extremely well-versed in AN's and all forms of treatments (yes, even microsurgery) and if you pose the question to them (try the "Brain" section), they are quick for responding back (unless they are on the golf course). :)
Please hang in there...
Phyl
-
Tamara-
It sounds like you've got things under control! As for the possible side effects of the surgery, one of the key questions to ask your surgeon is HIS percentage of facial paralysis and deafness. My surgeon was very upfront about that - of his patients this year approximately 10% had paralysis. He also told me, based on the location and size and amount of hearing left, I had only a 25% chance of keeping what was left of my hearing.
As for life after surgery, mine's great. Four months post op, I have barely any paralysis. It took me two weeks to notice I actually had paralysis at all - slight drooping of the eye, crooked smile, that sort of stuff. Fatigue is almost noexistent. I work at Barnes and Noble, and went back to work (after six weeks) November 4, the beginning of the Xmas shopping season. Balance issues are not bad. Sometimes getting up fast or turning fast makes me take a step to catch my balance.
I too went with the surgery for the same reasons...long term recurrence rate is less. But let's face it. In twenty years you'll be <ahem> 65 (and I'll be 70 something) so if it comes back, you are a great candidate for CK or surgery.
If you go for the surgery, I have one piece of advice for you. Get the softest pillow you can find. When i came home, I couldn't use my pillow - too hard. My head didn't hurt; it was my neck from being twisted for 4.5 hours that was the "killer". I had to go out pillow shopping two days after coming home from the hospital and that was no fun. Oh and a bag of frozen peas to use as an ice pack. I loathe peas so I had to send my significaant other out to get a bag.
Donna
-
Tamara,
My name is Mike Smith and I have been where you are. My AN was considerably larger than yours... (5cm x 5cm) and my prognosis was considerably grim because of its size. The outlook in my case was shall we say not good....! The outcome however was considerably different. NOTHING that they predicted took place! No eye problems, no speech problems, no walking problems nothing other than being deaf on my right side because it was a Trans Lab approach.
Now I am not telling you this to make light of the predictions or possible outcomes. I was very fortunate. I will not say I was lucky because I do not personally believe in Luck. I was prayed up is what I was! Now.... I want to be completely honest and open because this site is MONITORED and other people scan and police what is said on here... (read my other posts)
My situation is not typical especially for the size that I had. There were many people in the hospital with me that had all sorts of things going on. From the minor to the major. However, almost all had tumors that were larger than yours. As you will read on here you will find that WE ALL HEAL AND REACT DIFFERENTLY !! This is very true.
In my opinion the first thing that you should do is ASK QUESTIONS!! I dont care if you think the question is silly or stupid!! ASK!! Especially ask your doctor... "How many of these things have you PERSONALLY done Doc"? "How many of these tumors have YOU and YOUR NEUROSURGEON actually performed and what was the outcome"!?
Most doctors that I have run across will answer the question however reluctantly because usually the number is not that high. So ASK! ok? Also ask about the BAHA.
I do not know if you know anything about the BAHA (Bone Anchored Hearing Aid) or not but I am going to assume you do not and say.... Although it will in no way replace the hearing on your deaf side that it will help a great deal. I have a BAHA and I have learned that even though I know that all sound is being heard through my left ear, I can tell the difference in the sounds and my brain has learned to tell where things are coming from now. I would say that I have developed directional hearing to about a 50% mark. In loud and noisy situations??? NO WAY!! IT WONT WORK AT ALL!! It will just amplify all of the noise! However, in quiet situations ... one on one or in a car while driving or in the house and your husband says "HERE"!! :) It may help you quite a bit.
ASK QUESTIONS TAMARA!! Do not be afraid to question those who are wanting to perform the surgery. All to often we just sit back and let people just dictate to us "How its going to be". This is YOUR tumor and the procedure is going to be performed on YOU... not anyone else.
I am not very popular on here because I am not afraid to ASK QUESTIONS!! I am here to HELP people that need help. I am here to talk to people that actually need to talk to someone that has BEEN THERE... and I am not talking about via email. I got "policed" by this site because I posted my personal phone number on here so people could call me and hear it from someone that has been through it.... I was told that is violated their safety concerns and was asked not to do it again. I will comply for now.. however if you click on the little WORLD icon next to my name it will take you to my web site. On there go to my contact us page and my cell phone number is POSTED !!! Call me if you need to actaully talk to someone!!
Hope I can be of assistance.
G. Michael Smith
-
I may be totally off here, but I thought that the 8th nerve was hearing AND balance...
K
Not sure if anyone answered this yet or not, but the 8th cranial nerve is hearing and balance. Kind of 2 nerves bundled as one - like an extension cord with the orange insulating stuff around the outside. I think sometimes the tumor can be more on one side than the other. In my case, it was on the balance portion of the nerve, which is why I hadn't lost any of my hearing prior to the surgery. I guess it depends where it actually grows that may affect one sense more than the other.
Lori
-
hmmm...maybe that's why my hearing went but I don't have that much balance issue? Just before surgery though, I had to plan my moves in advance to offset lurching and staggering. Reminded me of college days when I'd somehow end up so drunk I'd have to have walk with a finger on hte wall so I didn't run into the wall...I'm still not sure how I ended up so drunk though. I swear I only drank one or two beers <wink wink>.
I agree with Mike about asking your doctor his percentages. Surgical recurrence in the general population of AN is about 0-2%. However if a doctor has little or no experience in this surgery and leaves a part behind to recur, those stats don't mean much. Does that make sense?
Anyway, by now your head must be swimming!
Donna
-
Hi again, Tamara:
I just wanted to chime in on the radiation vs surgery discussion, as I had both.
My AN was far too large (and pressing on my brainstem) to go with radiation as the primary approach so my very AN-experienced neurosurgeon opted for microsurgery to reduce the size of the tumor, cut off it's blood supply and avoid cutting or otherwise disturbing any vital nerves. I agreed. The surgery was successful and there were no real complications following. After a three month 'rest period' I began low-dose, very carefully-aimed radiation treatments ('FSR') administered over 26 days. These were 'plotted' by a radiation oncologist and my neurosurgeon, working in tandem. The goal was to destroy the tumor's DNA, stop it's growth and eventually, shrink and ultimately 'kill'' the AN tumor. It worked. My last MRI scan showed tumor necrosis and shrinkage. My neurosurgeon is delighted and so am I. I feel great. My equilibrium is near-normal now and I have almost no discernible effects from the AN, surgery or radiation. I feel blessed.
As I was 63 years old when I was initially diagnosed and treated (in 2006), I believe that age should not be such a big factor for radiation or surgery, assuming general good health going in, of course. Yes, radiation is not always effective but neither is surgery. Following surgery, too many AN patients are confidently told: "we got it all", only to face the specter of 'regrowth' and possibly more surgery and/or radiation a few years later. Granted, this can also occur with radiation but my point is that surgery is not a guarantee of total removal of the AN. My surgeon now highly recommends the surgery + radiation approach for large AN tumors. For a 7mm AN, like yours, Tamara, I suspect he would unequivocally recommend radiation.
This is simply my non-physicians opinion and certainly not anything I can debate with any degree of credibility, other than my reflexive distrust of any surgeon who flatly rules out radiation for a tiny AN tumor, based on the patients age. That seems to be somewhat specious reasoning and smacks of a bias toward radiation on the part of a physician, but of course, I can't prove that.
This being the case, I can only offer my opinion and label it as such, giving the reasons I come to the conclusion I have. It almost goes without saying that the final decision on treatment is yours - and yours alone - to make. We simply try to offer more than one perspective, based on our personal experiences and whatever broader knowledge of AN tumors we may possess. I certainly don't mean to confuse you, Tamara, and I trust that I haven't. I just wanted to offer you my views and hope they may be of some use to you as you prepare to address the specific treatment you'll choose to eliminate your acoustic neuroma tumor. The reality remains that whether you choose surgery or radiation, a period of recuperation will be necessary and yes, some complications could occur. We all hope and pray that doesn't happen to any AN patient but we have to be honest and not pretend here or this site and these forums would be near-useless. As it is, they are far from that - on many levels - but honesty remains a core tenet of our little group and I very much hope that you'll take comfort in that and know that we may not have all the answers but we don't fake it and we don't pretend but we do care.
Again, I wish you all the best, Tamara.
Jim
-
Again, thanks for the information and opinions. I'm used to being on the "knowing and welcoming" end of discussion groups for my daughter's disorder - this is a change for me. Anyhow, does anyone know where I can find data on the probability of tumor regrowth after cyberknife over time - say, after 10 years, there's a 10% chance of regrowth, after 20 years, there's a 40% chance, that sort of thing? I seem to be medically prone to unusual things, so it wouldn't surprise me to be in the minority if I went that route.
I'm sure we'd get through any recuperation issues I might have...I'm just not used to being the one who needs help...after all, I'm the MOM! But actually, my boys are both wonderfully helpful, and though they can be evil to each other, they both adore their sister. The boys already cook, clean and do laundry (I want my future daughter-in-laws to not hate me), but I don't want to dump on them too much - they deserve some fun in summer, too. I've asked my daughter's teacher if maybe one of the school aides could come and work with her 2 hours a day so that she does not regress, and I think that one of them will probably be able to do it. And the only way I will have surgery is if I have a cleaning service for about 3 weeks. So, if I go the surgery route, I think that will all be OK. I had pretty much figured the radiation wasn't an option, but do want to revisit that idea after the replies I've received. I feel better having my ducks in a row for either possibility.
Again, thanks to all you "groupies"
Tamara
-
Again, thanks for the information and opinions. I'm used to being on the "knowing and welcoming" end of discussion groups for my daughter's disorder - this is a change for me. Anyhow, does anyone know where I can find data on the probability of tumor regrowth after cyberknife over time - say, after 10 years, there's a 10% chance of regrowth, after 20 years, there's a 40% chance, that sort of thing? I seem to be medically prone to unusual things, so it wouldn't surprise me to be in the minority if I went that route.
Hi Tamara,
I found this thread (amongst many here and on the CK Patient Support board).... Mark is 7 yrs post-CK, VERY well versed and respected in his knowledge of AN protocols and such.....there is further info if you do a "search" option here for "AN regrowth" as well as search the Brain Section of the CK board. Look for Mark's comment in this thread.
http://anausa.org/forum/index.php?topic=4083.msg44131#msg44131
Out of everyone I know, Mark has been the longest time from his initial CK treatment.
As for anyone enduring an AN treatment (regardless of microsurgical or radio-treatment), regrowth can happen regardless.....for me, it's all part of this journey that we come to understand.
Phyl
-
Hi Tamara,Im' also new here and have a relatively small AN. I decided on Cyberknife which is what my neurosurgeon reccomended,he does many brain surgeries,but feels for small Ans this is the way to go.I decided not to watch and wait as my symptoms progressed rapidly,with hearing going from a slight loss to being almost totally deaf in about 7mos.balance is also bad,and tingling in my face.I originally was going to watch and wait,but felt some form of treatment would be necessary eventually anyway.I am very confident in my doctor,he took the time to explain pros and cons to me,and for myself I feel this is the right decision.I am in Wi. also,and would be happy to give you my neursurgeons name if you'd like a second opinion.This is truly a great site,with people who care,it makes dealing with these things much easier.Best of luck!Bruce
-
Bruce -
congratulations on making your treatment choice - never an easy task. I had surgery myself, but I know there are many on this forum who have had CK and are very happy with their results. I'm sure your treatment will go well.
Keep us posted,
Jan
-
Talking about the 8th nerve being both balance and hearing. It seems most of you had said you have had issued with one or the other. I have both balance problems and ssd, so I guess my AN was smack in the middle. I toiled over the options of surgery or radiation. My AN was small too. I wish I had waited and watched for awhile, but I think I got so anxious to take care of the little bugger. I researched thoroughly and traveled 1100 miles, having consultations at 3 teaching hospitals(and Dr's) on the east coast. You might want to read the posts on the wait and watch thread. You have time yet.
mema