ANA Discussion Forum
General Category => AN Issues => Topic started by: tatianne on February 08, 2008, 11:09:46 am
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all at various appointments and tests today, sending them good energy, strength, courage and prayers...
Please let us know how everything went girls..
T
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T,
that is SOOOOOO sweet of you! :-* Thank you.
Ok, for me.... met with ns who is following me on AN and Chiari 1, as well as my hearing test... so, here goes.
As of today, 22 months post cyberknife for my 1cm AN..... my hearing remains as is.... I am low end of "normal" and word recognition was at 92%. Slight decrease in my low tones, now in my right ear (my AN is left) and bugger... it's due to age, not the AN! >:( So, age is catching up to me, but as for the hearing and my AN, it remains at the same as it was at time of my CK treatment. So, good news there. Then, Cheeky bloke and I did a little lunch and went to see my neurosurgeon. We all took a look at the films, the official MRI report and my hearing test. Well, needless to say, she is noting my AN at 8mm x 5mm, just under in size at the time of treatment, but still in margin of error (+/-2mm) for head mri's, but... it has not grown in the past 3 MRI's and remains stable. Report also shows it as "non-cystic", thus, more good news. Chairi still there and needs monitoring.... then discussed you all with her and she provided me with some answers to individual questions many of you have shared with me..... Cheeky bloke and I then subway'd home and we are now ready to collapse.
So, all in all.... I'm in track, everything looks great and for me, CK has paid off. Brigham/Woman's is noting to see me next (including my next hearing test) in one year.
Now, Monday, I meet with the CK team... let's see if everyone is on the same page.
Now, sending wishes to my 2 other co-horts in today dr appt crime... and major huggles that their day was as good as mine... and if not.... I'm SO here for you! Never forget that.
T, thank you again... and to all of you that were thinking of me/us today.
Phyl
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I will second that! Very, very sweet of you. Thank you. I had my MRI with contrast. The radiologist read the thing imediately. I have an AN on the left side. It is small and I have a variety of options at this point. My lesions are more dense, so that ups my monthly MS shot. I was on a fairly low dosage, so now I'm on a higher one. I have a lot of gliosis in the left temporal lobe. That is going to need further investigation. I was filled up with so much information and notes I can't remember the name of the test I will have in two weeks. I will be out for it as I was for this MRI, but the new test I think it is called a PET scan shows the vessels, matter, everything in full color. Don't quote me on what it is called. I went to a different ENT and audiologist for my hearing test and have lost a little of my perect left ear hearing. She said I was still doing very ok for my age. I hate it when they put it that way. I saw my PCP this afternoon late and she went over in plain English everything we had already discussed prior and she is going to be with me every step of the way in the decision making process for all of the "problems".
Phyl, congrats, it sounds like your day was pretty great. Hugs to you.
I got to my home to find out that my grand daughter had passed out again. She is on all kinds of meds to keep her from doing that. She was out for 24.5 minutes. A record for her. She is in the ER tonight having more tests run on her and waiting to be transported to Texas Children's Hospital. It has been quite a day.
Now, where is Denise's report for today? I'm praying she had a good one.
Hugs to all,
Brenda
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*runs in and gives Brenda a MAJOR MASSIVE HUGGLE* :-* :-* :-*
Ok, I've had a PET done (pancreas issue)... ok, not sure for this, but may inject you 1 hr prior to scan with radio-OMG-make-me-glow-to-kingdom-come and then, 1 hr post injection, take the scan.... PET scan are VERY precise and they hone in on everything. Sounds, to me, like a good move. Again, unsure what their exact plan for you but no worries... PETs are nothing compared to things you and I have already endured.
I'm so so sorry this all is going on.... plu-eeeese keep us updated on your grandaughter... and you..... I wish I could do something to help.
xoxo
Phyl
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???
Thanks Tatianne for the well wishes.
I had my "AHA" moment ...... Dr. Lownie met with both myself and Dan and was EXCELLENT! He spent well over an hour with us and explained everything wonderfully. He probably would have spent the 'day' talking with us had I wanted.
I have decided to go ahead with surgery ----- OMG! I am panicked yet feel a strange sense of relief ..... I do not yet know the date but he will be scheduling me for all the pre-admit stuff within the next couple of weeks. He reviewed the initial MRI that was without contrast from June '07 (the one that diagnosed the 1.5 cm buggar) - he then reviewed my most recent MRI that was done with contrast on Jan. 16 '08 - - he said that there was not 'significant' growth but that there was growth. He also was quite adamant the he cannot conclusively say + or - a few mm's as no two scans are never done exactly the same way and positioning may be a bit off - but that indeed there was some growth -
He explained that, of course, the decision was up to me - as it is with all of us unless it is an initial HUGE tumor that needs to be addressed immediately. He concluded by the audiogists report that the hearing loss is profound in the left ear (I cannot remember the exact numbers he gave me).
He asked if I had any new conditions from the AN and I said no but that the numbness and tingling on the left seems to come and go more often ..... (like that feeling when novacan starts wearing off at the dentist) he then explained that to him this was significant and that he did see on the MRI that the 5th cranial nerve now has a slight 'bend' to it - and that is what is causing this sensation. He did some balance and coordination tests and I passed all with 'flying colors'! He also poked at me with a pin (he was gentle) and I could not really feel a difference from one side to the other (today anyway) - so that was good!
What a decison to have to make - - but I have had 5 months to mull this all over - and he did say that it would need to come out eventually it was just when? Both Dr. Parnes and Lownie said that the smaller a tumor the less complicated it can be to get out .... another thing he mentioned that I hadn't read (see I am a newbie at this) is the facial nerve ..... I expressed my utmost concern about the facial nerve and he so eloquently explained that ..... "let's just say you have had this tumor for 5-6 years, the facial nerve has adapted to this and 'stretched' right along with the tumor - so by the facial nerve adapting to the neuroma and stretching and then having surgery - the facial nerve is basically out of synch as it has been so used to this entity being there .... and he is fixing in a matter of hours something that has been happening for years ....... and that smaller the tumor the better 'chance' the facial nerve has to re-adjust". "Of course, there are never any guarantees" he also said.
LHSC is a huge University Hospital and he said he does about 20-30 AN surgeries a year - it may not sound like a lot - but the populas in this area is not all that great.
I just figured the time to do it is now ---- it is almost on the verge of becoming a 2cm tumor and I would rather deal with it on the smaller side of 1.93 (give or take) - I know it is not a quick fix and the conditions associated with this may or may not improve - but when he said the coming and going of the numbness is because of the 'indent' starting at the 5th cranial - why wait? .... only to go for another MRI in 6 months and keep going through this same process - especially knowing in the back of my mind that it will need to be dealt with at some point ....... ???????
So it was a good/not so good appointment - but I do feel confident with my (our) decision.
SOOOOO please, what was you 'AHA' moment and do you all think this is the time for me ?????????
Thanks for all your thoughts and well wishes!
P.S. I also hinted about my mortality (which I am sure all crossed out minds) - and he said no one has died from this surgery at LHSC .....that made me feel good too :)
P.P.S. I also mentioned my 8 and 4 year old boys and suggested that I would prefer surgery while they are still in school so their lives are not disrupted too much - - so well see!
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Hi girls!
Wow what a day you all have had!
Phyl Congrats on the Great news you received today!! I know you felt a big relief hearing that news............. :)
Brenda, After already having an AN, I am so sorry that you have another but am glad that it is small! I know you were concerned after finding the older MRI's that it might have progressed more so I think it's very good news that it is still small. I am so very sorry to hear about your granddaughter. :'( You are both in my prayers and please keep us updated! Many hugs to you and God Bless!!
Denise, It sounds like you have made the right decision for you! You seem very comfortable with your decision and have thought things through carefully. Your doctor sounds Great and very caring! I believe that it is very important to feel comfortable with your doctor. I am so new at this myself, haven't even seen my surgeon yet as having just been diagnosed but I have read to much on this forum and am so grateful to you all. I hope I have a doctor as compassionate as yours. I wish you the very best and I pray your surgery will be very successful!! Please keep us informed and let us know the date of your surgery so I can add you to my prayer calendar.
Big Hugs to You ALL as well as many thanks for sharing this part of your life!!
P.S. I really hate that I had to get an AN to get to join this "club" ::) but I really feel so blessed to have met so many special people here!! You are all a blessing - Be Blessed!!!
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I can't pass up this opportunity for a triple response - you gotta be efficient with these posts, you know.
Phyl, our dear mother hen, it is great to hear that your results are so positive. On my original hearing tests, the audiologist kindly said the slight hearing loss in my right ear (non AN side) was just that of a man 10 years older than me, no big deal. Isn't it lovely to hear things like that.
Denise, you ask if we think this is the time for you, but it is obvious to me that you do, which is the thing that really matters. You have been at it long enough, you know the score, and if you got that "strange sense of relief", it means your mind has reached a clear and sensible decision. You might as well as accept it, since your mind already has. I think your doctor's explanation of what is going on with the facial nerve is excellent, it is not so common to have such a frank discussion. The nerve will undergo some trauma at the sudden change, but he is making you aware of that, and is clearly aware of it as well, which bodes well for the outcome.
Brenda, all I can offer you is support for your situation. I have no idea what "a lot of gliosis in the left temporal lobe" means, but I am guessing it is better not to have it. It sounds like the left side AN is a small one, anyway, so you don't have to do anything right away. Give it a little zap with CK if it gets to be a problem, and keep your "age appropriate" hearing as long as possible. Good luck with the PET scan, maybe you will get some interesting full color pictures from it.
Best wishes to all of you,
Steve
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Thanks Glenda and Steve.... very sweet of you to think of me/us and truly appreciated! :-* BTW, Glenda.... my "yellow brick road" is, as you can see, going well and staying out of the forest..... ;)
Denise, I am SO proud of you! It certainly does sound like you have come to terms and are covering all bases. I know you've put a lot of heart and soul into your research and it sounds like you went into your appt as the best, well-informed patient you can be... and for that, sounds like you are on the straight and narrow to obtaining your wellness. I'm cheering you on BIG time and sending the infamous "huggles".... now that the decision has been made, take comfort in it and we're here to help you get through it! :)
Brenda..... I have to ask, as well as Steve... is any form of radiation/radiosurgery in your thoughts about handling this new growth? Maybe too soon to answer that but could be a thought.....regardless, you KNOW I send MASSIVE huggles..... and the inbox is open if need be. Please hang tough.....
Thanks again all... and Denise/Brenda.... I'm sending wishes to you both!
Phyl
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As we said in NY for some many years "You guys" are all so wonderful! No since I've been in Texas for well over half my life, I wouldn't know what to do without y'all.
I am investigating radiation. It will be and is my top priority to investigate. Phyl, I'm glad someone had heard of or has had a PET scan. Sounds like it is sooooooooo much fun. I always wanted to glow!
The grand daughter is as fiesty as ever and is hollering to get out, she said something about things to do and places to go. She has a bunch of tests scheduled for today and if she doesn't have another episode lasting more than five minutes today she will be allowed to come home. She is positive it is her heart instead of her brain. I think when someone has such strong feelings about something the doctors need to listen, even though she is only fourteen.
Densie, it sounds like you have made the right decision for you and that is huge. Y'all are in my thoughts and prayers.
Thanks all. Hugs,
Brenda
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naw, Brenda... "youse guys" rawk and thrilled to hear about your granddaughter. "yaw'll" hang tough... and sending huggles, as always! :)
Phyl
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NEW kind of panic now ....... I am still relieved that I have opted to have this AN removed - now I am just awaiting the 'call' - which I guess could come at any time ..... is it normal to suddenly see your 'mortality' - did you 'second guess' after making the 'decision'????
Watch and wait is not an option for me - I did and there has already been growth in the 6 months since initial diagnosis :( - and is it not true ..... "the smaller the tumor" the less complications - -and better chance of facial function - (this in particular scares the crap out of me) - I would like to think that I am not that VAIN that I would not learn to cope - but I also do not want all my energy thinking about all the negatives that could happen - I need to go into this feeling really optimistic and positive ..... so I could really use some reassurance here and need to hear of some successful outcomes! I have pretty much decided on translab. - would you all agree that this is the better route to go for facial preservation? (I know there are never any guarantee's) - my hearing is really not considered useful on the AN side - but I can't imagine losing that either .......
YIKS! I just wish there was something concrete scheduled and I was on the other side of this now - post-op ............
Sorry to be such a worry-wart - I really need to be handheld thru this .....
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Denise,
If I were going to do surgery, I would pick trans-lab. It seems to me it has the lowest side effects in the facial nerve and headache categories. It does mean giving up the hearing on that side, but if it is going anyway, there is not much you can do about it. I have met a number of people with SSD who get along just fine and do everything. There are quite a few people on this forum who have had good results with trans-lab. I think everyone second guesses a little bit after making their decision, it seems like a natural thing to do. I suspect you will find you become more settled with the decision after a little time goes by.
Steve
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Denise -
I didn't have any thoughts of mortality prior to my surgery because I pretty much knew my AN was noncancerous. Statistically the odds were in my favor in that area, so I had no thoughts of not making it through the procedure or not living a long life once the AN was removed.
I did second guess myself for a short time after I made my decision; but part of my decision involved wanting the AN out of my head - so surgery was my only logical choice. Post op I wondered if I would regret my choice, but my AN had grown so much between my MRI and my surgery that my docs told me that GK would have turned out to be a poor choice for me. So in the end my choice was validated for me; that, coupled with my good outcome, has caused me to never regret my decision.
IMO if you are comfortable that you've taken the time to research your decision and you have confidence in your doctor(s), you have no reason to doubt yourself. You are the only one who can decide what is personally best for you. If you are confident that you have done that, relax.
Jan
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Jan, thank you. What we have always noted here is what you wrote... and to never look back in heinsight of any decision that is made, as the decision was made for personal reasons solely onto ones self with the best info that was available at the time.
Denise, have faith in your gut... in your situation... know you are doing what is best for you and your situation. I send my infamous huggles... not knowing if they help at all, but I'm cheering you on..... please hang in there.
xo
Phyl
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Denise,
It sounds like your decision matches your circumstances. That is the best any of can do!
Things to remember that are in your favor:
Regarding tumor size and facial nerve "?": Statistically, those under 2 cm fare extremely well
Regarding mortality: If it were 1960, I'd be really worried. The probability these days is less than 1%.That being said, I remember thinking about it too. All the "what ifs" run through your head..especially as a mom. The day of my surgery was bright and sunny in LA. I remember being rolled down the hallway to the operating room area and the sun was streaming through the glass. I felt a sense of calm about the surgery. In a way, that was a defining moment. My guess is that there will be a moment where you get a sense of calm. Be on the lookout for it:-)
You mention loss of hearing in your AN ear? Do you know if it is less than 50% and less than 50 decibals?
The better your hearing going into surgery, the better the chances of having hearing afterword.
Also, If you have time, read the thread on expectations after surgery.
Kindest regards,
Kate
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Thanks guys! You really 'rock' when a person needs it.......
Hearing is at 34 dec. - really useless as far as I am concerned - I have directional hearing and that is about it .......
I guess the nervousness has set in - in the fact that I keep myself SOOOOOOOOOOOOOOOOOO' busy with my kid's school (Parent Council, Year-Book Committee, Year-End Party and my Condo. Board) - that I really need to talk to all these groups and let them know that I may not be able to fulfill my duties from now until June (depending on when the surgery is) - how do I even go about approaching the kids school and explaining all this to them - I don't just want to come out and tell them I have a brain tumor ..... what do you say? - "It's benign ..... but I have a tumor".......
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Denise,
Like Phyl and Jan have said, don't second guess yourself. It will dry you crazy! You have made the decison that is right for you. We are all here, pulling for you with good thoughts, prayers and does everyone have their pirate socks ready??? I think your two boys will amaze you with their compassion, helpful attitudes and they will get you through this. I am sending up the prayers and good thoughts for you and your boys.
Hugs,
Brenda
Denise,
You go to your boy's school and tell them you have a an Acoustic Neuroma. If they want an explanation as to what that is give them the basic info. Tell them you will be very tired and need to scale back your activities. You will hopefully be surprised by their compassion, understanding and their eagerness to help any way they can. Good luck!
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Denise~
Good Morning!
I did not have time to think about all the "what ifs" b/c my surgery was so quick - plus I think I was just young, blond, and naive! - but I think all of my family & friends were freaking out!! I think that is how God helped protect me & give me peace. It is scary...I would look at it completely different now since I have kids. That being said, I think that that would be my driving force. When I had surgery, I had no children of my own but taught 1st grade -- I thought that I had to get better to be there for them. I can't even imagine how I would think I have to get better for MY OWN kids! Even now I have tossed about the idea of TTT that Nancyann did, but I don't even know if I would do that b/c it would take away the time & energy from being there and doing things for my girlies. You have 2 beautiful boys and it sounds like you are VERY invovled in thier little lives -- take care of yourself so you can continue to be there for them, but remember that they are a priority that AN cannot rob from you. As far as the activities that you are involved in, do you do those alone or w/ others? I know that I am very involved also, but everything I am in, I have a co-chair and we function together -- even as RoomMom, I have an assistant. That is one of the things I learned - life will function without you (not as well, of course!) but others will take care of everything for you. You have to handle it in a way that feels comfortable to you -- in my experience, if I did NOT tell someone I was having brain surgery (b/c I didn't want to worry them or know how to say it), they were upset that I didn't tell what was going on. I agree w/ Brenda that you will surprised at the outpouring of love & compassion. However, if you would feel better, just say, "I am dealing with some health issues and I don't know how long it will take, but I think it would be better if you didn't count on me right now..." or somthing like that.
You will get thru this...it is just a LOT to take in right now! Let me know if I can be of help or just a listening ear!
<3 K (it is a little heart just for you!)
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It's ok to be nervous and we can all relate. I waited from my mid August surgeon appt till Nov 1 for surgery to get past harvest time and be easier for my husband. I was an absolute basket case. No one was talking of good outcomes on the internet. I did well with my surgery and was very lucky. But I ended up with the best organized house I had had in a long time pre op, just in case!!!
My biggest mistake was over doing after to prove to myself that I would be normal again. It does come back with time and rest.
I would tell some to the school and call it what is. Consider it educating others about acoustic neuroma. I knew of a dr where I work who had a MRI to check out his hearing loss. Another said it made her more aware of AN's and keep watch in her patients.
Hang in there! We are all thinking of you and everyone who is agonizing over this.
Cheryl R
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Hi,
Brenda wrote
“Like Phyl and Jan have said, don't second guess yourself. It will dry you crazy!�
I don’t know I agree. I would like others to learn from my mistakes –not repeat them.
As I am at almost at the 6 month mark and dealing with synkinesis (which I would like to say is not walk in the park) I am beginning to think I did not make the best choice. Because there was an element of doubt that my tumor was not an AN tumor but a meningioma- I chose the retrosigmoid. The rationale I used was that if we pulled out a meningioma through the translab and sacrificed my hearing (directional included) for nothing -I would be kicking myself later. If I had known for sure it was a AN tumor- than I would have chosen the translab.
HEI had once advised me of this and that I go for the Baha implant simultaneously with the translab surgery (i.e. do it all at once). Other private institutions also suggested I go with the translab. The universities tried to get me to question this and were apparently successful at having me do so. (We do need to ask questions- this is how we learn)
In Daisy-Head Mayzie story by Dr Suess…
… there is a happy ending as Daisy gets to go back to her classroom … I don’t see going back to my classroom any time soon…
Currently I feel like I was university experiment…
Now I am consumed with more research on facial therapy and also trying to decide what sort of hearing aid I should use (transear, cochlea implant, baha etc) to which none will replace the directional sound I have lost… At this point I would just like to move forward in my life outside of the acoustic neuroma- but I can’t just yet.
My ‘gut instinct’ was to have the translab with the old guru and have the translab and the baha screw implanted at the same time. Somehow I turned in my tracks and decision making process. I am beginning to think that my surgeons would have had better visibility of my facial nerve with the translab approach … and I probably would have had a shorter length surgery than the 11+ hours – as I am thinking the retrosigmoid made it more tricky an access point to both the tumor and the facial nerve it incased. (They did need my autologous blood, ie self donation, for transfusion -after all) I was told there was a marginal 2 % higher risk of facial nerve damage. Now it appears I came in at that 2%. I do have my smile back and “my life�- to my surgeons I am most grateful for this. (I still have the utmost respect for them and they did an excellent job of dissecting a very adhesive tumor from a tricky angel point.) The synkinesis is the result of a stretched facial nerve (maybe this would have happened with the translab too. ??? I do not know.) The new growth nerve branches are attaching to the wrong muscle. (i.e. there is nerve cross-wiring). I made a choice – and that I will have to live with for the rest of my life.
"If" the synkinesis goes away and I can eventually raise my eyebrow, move my bottom lip and flare my nostrils… then I will change my tune here. Currently what I am reading, and the lack of answerers I am getting from physicians in my region, – I am guessing that the nerves will continue to grow down the wrong channels and what is happening now is irreversible. Once the damage has happened I am questioning now how much normalcy will return to the facial movement.
We do need to reflect on our choice. I can’t say “would-a, could-a, should-a� etc as this will be counterproductive to my recovery (especially mentally and spiritually) but I think it is important to share not just our successes but also our mistakes (and falls). I don NOT want others to repeat my mistakes… I want them to learn from them (perhaps this is why I was a teacher) and to keep moving forward.
Denise,
If I had had the size of tumor that qualified for radiation I would have made an appointment to discuss this option with a surgeon, who is highly reputable, in that treatment option specifically … but that door was closed to me due to my large tumor and the brainstem involvement.
I think if that door is open to you then look inside and see what you think and how it compares. Some of us wish we did have that option. Many of us will admit that the loss of directional sound IS a big deal.
Look at ALL options and make an informed decision.
I want Denise’s outcome to be better than mine. I also want all outcomes to improve with time as all patients, surgeon and physiotherapists honestly share their experiences for the common good. I truly hope in the next decade (and the next generation) of people- will truly understand much more about Acoustic Neuroma and the options to treating these.
I also hope that in future cases (and generations) there will be enough sharing of information so that we will eventually know the real ‘cause’ of AN… Currently, as the ANA, we are focusing on ‘treatment education’. Once “a cause� is know than hopefully there will be more focus on ‘prevention education’… but we are not there yet. The definitive cause has not yet been discovered.
I think it is important to share our successes and mistakes of our decision making process- so future patients, surgeons and therapists can learn from both aspects.
I will continue to keep you in my thoughts and prayers
Peace,
4
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Hi 4,
First, let me say a BIG thank you for sharing what you have shared... it's insightful beyond anything I imagined and I thank you for sharing something that is so passionate to you... with all of us here.
Please don't misunderstand what I am saying. We absolutely learn from other's experiences... what I was noting is... that once a person takes into account all that has been shared of experiences and insight, they are making the best well-informed decision that they can make for themselves... and not to question that final decision.
We know the good, the not-so-good and the fugly are shared around here.... total realities that many go through. For me, once someone inquires and takes into account all they have learned from others, then, go with the gut and not question final decision
Recently, I had a few folks on the phone from this forum that actually noted "if I knew then what I know now....", but I reminded them that they did what was best for them at the time.
Ok, back to work for me now... but, I hope that clarifies my comment.
And as for you.... :).... be well, 4 :) Sending huggles.....
Phyl
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Glad to hear all of your updates !!!
Great news Phyl, seems like things are moving along well for you.
Brenda, can you mail me some of your fabulous outlook and attitude ?? Your amazing.
Denise, I know how you feel...even though you know what you have to do it doesnt take away fear of the unknown, what if this, what if that.....You have great courage to have made such a educated decision about your health, thats the most important part..
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4~
I read what you wrote and was very moved by the way you expressed yourself. It is hard for me because there were no options really for me and even if there was, there really was no time. What a concept to have choices to maybe even preserve your hearing...they did not even tell me ahead of time that my hearing would be sacrificed!! I say this not to evolk feelings of sorrow or pity for me, but I agree w/ all the others that once it is done, it is done and no looking back. You make the most of what you have and go with it. Are there things in other areas of my life that I wish would have had a different outcome - sure! - but we have to just go with it. Am I glad that my face is paralyzed or that I have SSD? NO, but it certainly does not take away from my life -- I WILL NOT let it! As a not very old "Old Hat" w/ this, it is easier for me to say this 12 years out...hopefully it will get easier for you with time...but only if you let go of the "what ifs" and greet the life you have with gusto!! :o) I respect and agree that it is good to share both the "good" and "bad" so that others can learn from what we have been through. Thank you again for sharing that! :o)
I would love to share how my life has gone on - even with side effects! I have a blog with pictures if you are interested, I can PM you that address.
Blessings & Strength with your continued trek on this road to a new life!
K
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I guess the nervousness has set in - in the fact that I keep myself SOOOOOOOOOOOOOOOOOO' busy with my kid's school (Parent Council, Year-Book Committee, Year-End Party and my Condo. Board) - that I really need to talk to all these groups and let them know that I may not be able to fulfill my duties from now until June (depending on when the surgery is) - how do I even go about approaching the kids school and explaining all this to them - I don't just want to come out and tell them I have a brain tumor ..... what do you say? - "It's benign ..... but I have a tumor".......
Hi again Denise,
There are lots of opinions out there. I took a totally different approach with my AN. I found that when a person uses the term "brain tumor" it evokes a lot of reaction. I decided to tell people at work and with my community (involved with the local school district too) that I had a problem with my inner ear and was having surgery. I mentioned going to California where the doctor specialized in the surgery. To me it wasn't really anyone's business, yet I knew working in a school district at the central office that I couldn't disappear for five weeks without saying anything. I chose to say very little about it at the time. But that was me. Everyone is different.
Kindest regards,
Kate
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We do need to reflect on our choice. I can’t say “would-a, could-a, should-a� etc as this will be counterproductive to my recovery (especially mentally and spiritually) but I think it is important to share not just our successes but also our mistakes (and falls). I don NOT want others to repeat my mistakes… I want them to learn from them (perhaps this is why I was a teacher) and to keep moving forward.
I also hope that in future cases (and generations) there will be enough sharing of information so that we will eventually know the real ‘cause’ of AN… Currently, as the ANA, we are focusing on ‘treatment education’. Once “a cause� is know than hopefully there will be more focus on ‘prevention education’… but we are not there yet.
The definitive cause has not yet been discovered.
I think it is important to share our successes and mistakes of our decision making process- so future patients, surgeons and therapists can learn from both aspects.
4,
Your teacher is shining through:-) Your best hope for identifying the cause is awesome. Until then it is patient education. And it is because of the experiences that others grow and learn.
You are still on the mending part of the journey relative to your facial nerve. It is always that unknown that makes us restless.
The fact that there are so many choices makes us question our decision at times. Honestly, these darn things are sooo tricky that until the doctors are inside, they can't anticipate the stickiness of the tumor. Okay, I agree that a crystal ball would have been awesome. Barring that, these are difficult decisions because of the unanticipated consequences. No second guessing is allowed:-) Right now your facial features may have changed, the same good hearted person hasn't changed. Your caring spirit shines through and people can sense that.
What grade did you teach?
All the best,
Kate
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4~
I meant to ask why you couldn't teach anymore? Are there other problems preventing this?
K
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Hello all,
Denise, you are very, very brave with your decision for surgery. KNOWLEDGE IS POWER!! If your decision is an informed, prayerful and honest decision then I would say your decision is the right one.
I have to ditto Kate's reason for explanation. My wife was just diagnosed last week (Feb 6) and it has been a challenge deciding how to describe her illness. We told our closest friends and relatives straight up facts. To her co-workers and her managers she described her condition as an Acoustic Neuroma and will most likely have it surgically removed. When asked how long she might be away from work she told the truth - I don't know. From what I have read everyone seems to have different results. She did say the "growth" is benign and once removed, other than loss of hearing, there is nearly a 100% chance of full recovery. That explanation seemed to satisfy.
In your screen name I see 2boys. I would think your concerns of mortality are justified. Your feelings are not selfish or self centered as you have a great deal riding on your decision. Thankfully, as you can see, your not alone. Isn't it comforting to know you have a place to go where, "Everybody knows your name?" :D
If you have any boogie-bears trying to invade your thoughts, air them and let others lend support. We're all here to help each other. Hope is a good thing !!
Safety & blue skies,
DJ
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DJ is absolutely right - knowledge is power. And, you are very brave Denise.
Hang in there,
Jan
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Hi Denise,
I just met with the neurosurgeon today and also have decided on surgery. I know how you are feeling, a big sense of relief... but waiting the phone call with the big date! I too questioned my mortality ( I have two boys ages 6 & 9), but as the doc said today, I have about 45 years left of my life to live. It is easier, with better outcomes while it is still a smaller size. I rationalized with my self that it will not get smaller on it's own, I am not getting any younger, and my health is not going to improve over the next several years. I too have a work committment, and many volunteer positons. I agree with the others, that I will tell people I have a problem with a benign growth on the nerve involving hearing and I am having surgery to remove "the growth" and there is a good possibility that I may lose hearing in that ear. I am taking myself out of work, carpool,volunteering etc, for 6-8 weeks, and if I can go back sooner, all the better. If people have more questions, I'm sure they will ask.
I hope llike others I will feel the sense of peace going into the OR, cause now I am terrified! Good luck, and keeps us informed.
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Glad to hear all of your updates !!!
Great news Phyl, seems like things are moving along well for you.
Brenda, can you mail me some of your fabulous outlook and attitude ?? Your amazing.
Denise, I know how you feel...even though you know what you have to do it doesnt take away fear of the unknown, what if this, what if that.....You have great courage to have made such a educated decision about your health, thats the most important part..
Tatiane, I guess I finally "get it" after all of these years and can always, always, find someone worse off than I am and I feel very fortunate to be alive in the shape I'm in (to lose a few pounds would be nice!) I guess I have just been doing some very deep soul searching and figure I will do better with a good attitude than a bad one. You've got it, just look for it. It really is there for each of us. Thank you for all of your support. Hugs, Brenda
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elderbirds -
it's good to see you've made your treatment decision - usually an extremely difficult thing to do.
And as a single mom who also works full-time and volunteers, I like your logic - it makes perfect sense to me. I like your attitude also.
Try not to be terrified. Let us know if there's anything we can do to help put your mind at ease.
Jan
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Thanks everyone ....... and Elderbirds - - Good for you on your decision - - you and I can go thru this together - It is nice to know that I am not alone this week in making that 'decision'.
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I just met with the neurosurgeon today and also have decided on surgery. I know how you are feeling, a big sense of relief... but waiting the phone call with the big date! .... It is easier, with better outcomes while it is still a smaller size. I rationalized with my self that it will not get smaller on it's own, I am not getting any younger, and my health is not going to improve over the next several years.
Hi Elderbirds,
I agree that the statistics are in your favor having surgery when the tumor is smaller. Actually, during the time that I vascillated between treatments (even wait and watch), one of my determining factors was that because it was smaller, it allowed me many choices all with positive outcomes.
All the best,
Kate