ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: macdonalddobies on December 16, 2013, 03:55:54 pm
-
I was just wondering if anyone on here had a smaller AN, say between 3-7mm, but their symptoms were bad ( balance, dizziness,etc.) that they had it removed? Just wondering how long you waited and what prompted you to do the surgery? and what was the outcome?
Thanks,
-
I have a smaller size AN, around 6mm. It has about doubled in size over the last 5 years. It was contained inside the cochlea but has now grown out of that area and I am worried it will start causing more problems if not addressed. I have had no or very little hearing in the AN ear for about 5 years. I had several bouts of vertigo probably 8 or so years ago, none since. I have noticed facial twinges, a tighter feeling on the AN face side, etc. I am having it removed Jan. 16, 2014 at HEI, with Drs. Slattery and Schwartz.
-
Thoughts and prayers are with you Clere, for a speedy recovery.
Take good care,
MG
-
I had a 1cm removed dec 11th. I had lost most recognizable hearing rapidly and had balance issues. I decided to have surgery because I am 55yrs, live alone, am healthy, traveled to House for surgery. I work fulltime and have a busy horsey recreational life and small farm. I have 2 daughters getting married next year. I did not want to be 2 weeks before a wedding or horse trip and suddenly have facial symptoms or problems to throw me! Sometimes tumor size isn't the best predictor of future changes. After 1 rocky post op day my recover has overwhelmingly positive! I wanted to have some control over when I would face challenges, which for me was the right decision. I think there are so many things to consider that are individual preferences. Karen
-
Very best wishes for a successful outcome January 16th Clere and hopefully the Christmas Hols period will be a peaceful time for you.
Regards
Derek
-
Derek and MG...thank you for the well wishes.
And thanks to everyone else on this forum also.
-
I appreciate all the responses. It has just been hard. Besides the balance and feelings of nausea, I think I could deal with things. I am just not living my life to the fullest anymore and I am only 31. I am terrified of surgery and really don't know what to expect as an outcome. I have heard people say that you still have dizziness.
-
Best of luck Clere. What approach are they doing for you?
-
I appreciate all the responses. It has just been hard. Besides the balance and feelings of nausea, I think I could deal with things. I am just not living my life to the fullest anymore and I am only 31. I am terrified of surgery and really don't know what to expect as an outcome. I have heard people say that you still have dizziness.
Hi there 'Mac'...
Really sorry that you have been diagnosed with an acoustic neuroma at such a relatively young age. Your present symptoms with such a small tumour are not uncommon but on the plus side you do have time on your side to carry out your fullest research into all of the available treatment options. An experienced consultant who has a long and proven successful record in the management and treatment of ANs and whose guidance and advice you can trust implicitly, is essential. AN symptoms are not necessarily abated after undergoing either microsurgery or stereotactic radiosurgery so do ensure that you bear that in mind during your deliberations. It may be that in due course and without resorting to invasive treatment, your present symptoms may well diminish and the dimensions of your AN may also remain stable. Have you fully considered conservative management ('watch & wait') whereby with the aforementioned professional advice and guidance and regular MRI scanning such an option may be advantageous to you?
Best wishes with whatever decision you ultimately choose. I do hope that you have a peaceful Christmas and that the New Year is a successful one for you.
Best Regards
Derek
-
Best of luck Clere. What approach are they doing for you?
[/quote]
They are doing translab, I have already lost hearing in that ear so we don't have to worry about trying to preserve anything there. It is my understanding that translab gives a better "view" of things in my particular situation. Part of my decision making process involved my age, I just turned 61 and am in pretty good health. I was concerned that if I wait and watch and it grows to a size where it causes other problems and NEEDS to be removed I may not be in the same situation. There are so many things to be considered, even though mine has been growing for about 5 years I did not know it was there because it was missed by the radiologist who read my first scan (it was found by a doctor who reviewed the scan last summer). So after a second scan in July they determined that it was growing and should be treated. I personally would like it totally out of there if possible. Knowing that it is there and growing has made me imagine every twinge and tick is the result of the AN. And as someone stated earlier (in another thread) 'what am I waiting for?" I am hoping that by doing it now when it is fairly small will give me the best chance for total removal and a good recovery. Have I made the "right" decision? Don't know and believe me I have been second guessing myself, but I am glad that i am finally moving forward. The people and information on this site have been extremely helpful so continue to ask questions here, find a medical team you are confident in....I hope it helps lead you to a decision that is right for you.
-
Your postop nurses will get you moving. If they say you need to get into the chair, do it. When they tell you to walk you do it. I felt like saying you have to be crazy(or something worse). When I went outside to walk the first time I realized not using 2 arms, just one arm to help was monumental! You will realize our worst fears rarely come true:) Even though I'm doing great, I am staying 2 weeks as planned, just in case there's a bump in the road, but don't think there will be. Focus on positive!
-
I have never been dizzy with having had 3 tumors and 4 surgeries. There is the off balance feel which is different than being dizzy. You would likely have that for a time post op but the other side of the brain compensates for most but not all people in time. The hearing loss is frequent in tumor removal but not always. The facial issues if there are any and not all do have any, are temporary in most cases. There will be fatigue for a varying period of time. Some may have long term headaches but not all do. The immediate recovery varies in that you will feel not well for a few days and improves over just a couple weeks to several weeks as we all do vary. The not knowing ahead of surgery makes it hard as one would like to know how you are going to feel.
Just resting a lot along with being active and walking when can is what ones has to do. Over doing on the being too active will not help as the brain and nerves need their own time to adjust. Hope this helps. Cheryl R
-
Hang in there buddy. I'm also 31 and the initial period after my diagnosis was so rough. The worst is trying to figure out what you're going to do. You got the right attitude in getting as much info as you can and using the site as a resource. For me once I decided on a treatment, and went through the treatment, the stress level went way down, and my AN symptoms became less bothersome. I'm hopeful that you're on your way to a similar experience.
Adam
-
I am just not living my life to the fullest anymore and I am only 31. I am terrified of surgery and really don't know what to expect as an outcome. I have heard people say that you still have dizziness.
In my opinion, your first sentence (quoted above) speaks loud and clear. It tells me that you need to do something about your AN sooner rather than later. No matter how small it is, if it's interfering with your life to the point where you aren't living it to the "fullest anymore" you need to address it. And that applies whether you are 31 or 81.
Don't be afraid of surgery. Yes, it IS brain surgery; but there are worse things in life. Lots of us have lived through it, don't regret it, and have moved on to live a happy, productive life. And if surgery will enable you to live life to the fullest again, they I say go for it.
I'm over 6 years post op for a much larger AN than you have and I don't have dizziness; never had dizziness.
Jan
-
"Mac"
I agree with what Derek said. Good advice.I hope you come to the best decision for you. My thoughts and prayers are with you. Let us know please when you make your decision.
Best of luck, MG
-
Agree with everything said here. It is just waiting at this point till my visit with Hopkins. I know what is suppose to happen will, and I will be okay.
I also must ask, how much does anxiety play into this and symptoms. I am fearful that I am making myself worse and cant tell the difference. I know balance and dizziness are a factor here because I am having trouble with balance therapy and the things I am having to do, but at the same time, i know I have bad anxiety and the mind is a powerful thing.
maybe that is for the doctors to figure out. I am honest and that is my truth. They are experts and I hope can tell the difference by test, and just examining me.
thank you all for the support!
-jessica
-
Jessica, i am the same.. Only 31 and with a 1.8 cm AN.. But every one including my radiation oncologist recommends surgery.. Others are my GP and specialist.. I think anxiety is normal, don't worry.. I think you'll need to be a bit crazy to not care especially at our age.. You don't expect something to hit you this early in life.. But remember.. There will always be problems.. You fix one then another one comes.. We'll just have to fix problems as we go and try to not put too much emotion into it..
After I was diagnosed in October I felt all the symptoms, facial numbness, head pressure, headaches, problems swallowing you name it! Now, 2 months later, I have only hearing loss and tinnitus.. Feels like this thing is going away but i know that's almost impossible.. Most of symptoms were probably in my head! Dunno..
And I too get sometimes depressed when going out... I don't party like I used to.. Fun activities are not the same and I have this bloody tinnitus and hearing loss to constantly remind me of the AN.. It's crap but we'll get through this.. Hang in there!
Joanna.
-
Hi Joanna,
Do you have surgery scheduled yet? I am ready to just get this over with. Mine is only 3mm and causing such a problem. I keep saying I am going to push through this and get back to my life, but I keep getting caught up. One moment I feel strong and determined and the next, I feel like I'm lost.
Any age having to deal with this really, really sucks. This just so happened to fall on me right when my husband and I were trying to start a family. I feel like my life is on pause till I figure all of this out. I know it is going to be a long road. I keep dreaming about surgery, it is really weird.
Also, I know what you mean about going out to parties and it not being the same. I look at everyone laughing, having a good time, when I feel miserable on the inside. My husband is very supportive, but gets frustrated because he sees me constantly giving up. It is all I talk about and he just wants me back to myself, not giving updates every 5 minutes :) It has only been since Sept. of this year finding out, so it is still fresh in my mind and hard to move past.
I guess come January 2nd, I feel I should know more of what is going on. I feel very lost right now and not really sure. Since this is so small I question how are they sure this is an AN and not something else. My symptoms have always been of what a medium to larger AN should be, but mine is so tiny. Also, I have been pushed around to so many doctors, that I question if they really know what is going on. I hope Hopkins has the answers.
I am lucky for this group, there is nothing in the Northern VA area as far as support goes. It would be really nice to know people who have been through something similar that I could grab coffee with, etc. But I will settle for the ANA forum. :D
-
Hey Mac :)
No I haven't scheduled anything yet.. My case is really weird.. The radiation oncologist sent me to surgery. I saw the surgeon on Wednesday and he said it can be treated with radiation if I want and somehow he didn't seem too sure about the surgery.. I feel none of them are confident to treat me.. Maybe cause I am young and actually writing my PhD thesis now.. If I get cognitive issues and after 24 years of school I'll need to work at some low paid job.. Plus I have no kids and no husband... This thing has the potential to destroy my future really bad.. Which scares me.. I will see another radiation guy and hopefully he'll be more confident..
In terms of long term issues from radiation, which it's not sure I'll have any.. I really wanted to post a link:
http://www.cancer.org/cancer/cancerbasics/lifetime-probability-of-developing-or-dying-from-cancer
So we'll most likely die from other cancers than the AN radiation induced one..
My AN doesn't bother me now.. Just hearing loss and tinnitus.. Maybe it shrank by itself.. I heard this happening before.. It's really rare but then again ANs are really rare.. I would W&W if I were you.. My symptoms disappeared.. Maybe yours will too..
I get what you're going through and I think everyone in here can relate.. I am too driving everyone crazy with the latest statistics and other things that I have read.. I just can't help myself.. I'll probably end up losing all my friends.. Together with a few nerves on my left side of the head :( And yeah.. I do watch other people laughing like they have no problems in their life and I so envy them.. I ended up envying an old couple in the train wondering if I'll ever get that old and not being disabled or God knows what!
I JUST WANT TO TAKE A PILL and kill this thing!
Joanna.
-
Please Mac.. Keep in mind that if you go ahead with the surgery.. You will get at least two disabilities, one hearing and one balance.. I am sorry to say this but it's the truth.. If you go for retrosig although it might save hearing, chances are higher that the tumor will regrow.. About the same as radiation if not more.. Translab will cut your hearing nerve.. Balance nerve is cut either way.. I have asked my surgeon if they reconnect the nerves.. He got a bit irritated and said they are really thin, like a piece of paper.. They may as well be, but they still transmit information.. Otherwise surgery peeps wouldn't have to learn to walk again after surgery.. At least with radiation I am not cutting my nerves and who knows? With the help of medicine and steroids we might be able to wake them up somewhere in the future. But if they're cut all hope is lost.. Good luck to all of us!
P.S. I have asked two of the smartest men (range of geniuses) I got to know which are also good friends of mine and both said "if I were you I would go with radiation" and showed genuine concern about surgery..
-
Forgot your name is Jessica.. Sorry..
-
No Worries, Joanna. Mac isn't such a bad name :) I talked to my Dr. about radiation, he didn't seem thrilled about it. Although, they seem pretty confident in keeping hearing and balance in pretty good tact. I think a lot of people come out fine. As long as I am living, breathing, and enjoying life, I will take some bad with the good. If I lose hearing on one side, I think I am okay with that. I however would not like any balance issues or facial paralysis. That would not be good, but if it happens, I will push through it and be strong.
Have a Happy Holiday, Merry Christmas in my case, but you never know what people celebrate ;D
-
Joanna,
not all get balance issues after surgery. my an was so large and so long ago that we didn't talk options, Dr. wiet just did the operation, so i have no idea what approach he used. my hearing was gone before surgery, but i also had some balance issues and weird feelings of continued movement after i stopped moving, my tongue also had one sided numbness. no nerves, other than my acoustic were cut. my balance now is only very, very slightly off, but not so bad that i have looked into exercises or therapy for it. tongue was ok as well. each case is different, depends on how the tumor grows
-
I am an active person and love my sports.. I don't think balance issues fit into my schedule.. If there will be any, but not gonna risk it.. Together with other surgery risks.. And my AN doesn't bother me as Jessica's does.. Decision is yours :)
Joanna.
-
I was just wondering if anyone on here had a smaller AN, say between 3-7mm, but their symptoms were bad ( balance, dizziness,etc.) that they had it removed? Just wondering how long you waited and what prompted you to do the surgery? and what was the outcome?
Thanks,
Hello Jessica,
I am 25, and had an AN that was 6mm. On December 10th, 2013, I had a Middle Fossa surgery performed by Dr. Friedman at Keck Medical Center USC, Los Angeles. He preserved 100% of my hearing, I have no facial problems and the tumor was removed completely. After the surgery, I haven't had any headaches, I'm not very dizzy, my balance isn't all that bad, I was able to go out Christmas shopping several days after surgery. I do have some ringing in my ear, it seems to be slowly diminishing, and I have been advised it should cease completely or become very mild, but I'll take the ringing any day knowing the tumor is completely gone and not going to cause grief in the future. Being around the same age, I completely understand how scary this can be. I was petrified, I had to put all of my hobbies and schooling aside, my life came to a screeching halt, and I realized I had to deal with this immediately. As Leapyrtwins mentioned, I too personally suggest to confront this situation as soon as possible. I was diagnosed in June of 2013 and had it removed in December, I would've had surgery sooner but my insurance held me up for some time. In my opinion, with watching and waiting, you're only waiting to watch it destroy your hearing, and decrease your chances of a better outcome. I had to travel out of state in order to have the surgery and it was the best decision I've ever made. I would strongly suggest contacting Dr. Friedman to discuss your condition. He accepts MRI's and will give you his opinion over the phone.
Here is the link for Dr. Friedman/Keck Medical if you are interested in reading up on information...
http://acousticneuroma.keckmedicine.org/
I hope you find peace of mind with whatever decision you come to.
-Frankie
-
Frankie,
Thanks for sharing. Makes me feel better that someone with a smaller AN has had such success. I agree that waiting around for something worse to happen is kind of silly.
-Jess
-
Hi Jessica - I am 43 and was diagnosed in July with a 6mm left sided AN. I have tinnitus, "swimmy head" and some feelings of fullness in my face. I have some visual perception issues when driving on a highway with a lot of other cars too. It's very strange and unnerving!
I'm still figuring out what to do but saw that you were going to Hopkins. I went there in Oct and just went for my follow-up MRI and appointment with Dr Della Santina. Just wondering who you were going to see. I feel comfortable with him, even though I'm not entirely sure I will go there for treatment. I have also visited University of Penn and Jefferson Hopsital in Philly (I live just outside of Philly).
My tumor is stable right now so I guess I have time to decide. I will say this - I purposefully took the entire month of December off from thinking about, reading about and talking about this stupid thing! I felt like it took over too much of my life - especially for the first few months after diagnosis. I think it was good to have a vacation from it.
Best of luck. I totally understand what you're going through and how hard it is to wrap your head around everything. Feel free to email me privately if you want to talk about Hopkins.
-Ellen
-
Hi Jessica,
My AN is about 7.4 x 8.4 mm and has been causing me imbalance issues for several years, along with some mild tinnitus. I also have some hearing loss in my AN ear, but not very severe at this time (word recognition is 92%). I was also told that it isn't the size of the tumor, it is more about the location and it varies from person to person.
The tumor was discovered in October, 2013 and the first thought that went through my head was to "get it out of there". The neurosurgeon thought he could remove it and still preserve 65 - 80% of my hearing. I scheduled surgery for early January.
Later, after doing some more research, and talking with a guy who had CyberKnife radiation therapy, I met with the radiation specialist at Swedish Medical Center in Seattle, Wa and discussed that option. I was very encouraged, and scheduled my CK therapy for early January, in place of the surgery.
Then I started thinking about my "quality of life" issues. Even though my tumor was small, it was right next to my cochlea, and the radiation specialist thought I would totally lose my hearing in my AN ear after two - six months of the CK therapy. I had another MRI in late December which showed no growth in the 3 months since my last MRI (the second MRI was conducted in preparation for the planned CK in early January, normally they recommend waiting for at least 6 months between MRI's).
So the question then became, "do I want to take radiation therapy and lose all hearing in my AN ear in 2 - 6 months, or do I want to Watch and Wait for awhile to see if my symptoms worsen". My wife and I square dance 3 - 4 times per week, and being able to hear the "calls" and move around without stumbling or falling is essential.
So, I made the decision to Watch and Wait for at least 6 months. If my symptoms get worse, I can always do the radiation therapy or surgery. In the meantime, I will still be able to hear in my AN ear and the imbalance and tinnitus issues are not so great that I can't deal with them.
I feel a little embarrassed by the fact I changed decisions three times. But in the end, it all comes down to doing what is best for yourself. It took awhile to work through the decision process, and this forum, along with my local AN support group, the ANA information, and the information from the MRI's, the surgeon and the radiation specialist all factored into my decision.
There is one more symptom that I have not experienced, and that is facial nerve impairment. This is a risk for W and W as well as surgery (I am not sure about the CK treatment). I was at a family Christmas party and was talking to an attractive young lady about my AN. I was telling her about my imbalance and tinnitus symptoms and she seemed to be thinking about the symptoms as if she had to deal with them and was ok with those two. But when I mentioned that my facial nerve may become involved or damaged during surgery, she was absolutely aghast at that thought. At the risk of being considered chauvinistic, I think women would probably be more sensitive and concerned about this issue than men (that said, I don't think either sex would like to experience this effect).
So maybe you may want to ask your neurosurgeon; "how close is my tumor to the facial nerve and will there be a problem if you operate?" and "What if I decide to W and W or undergo radiation therapy?"
Bottom line is, it is a very difficult decision. There are three viable options, and, in my case anyway, I found that the physicians won't tell you that you have to do this option or that option. So it is mainly up to you (with input from your family and friends) to make your way through the decision-making process.
I am 70 years old and cannot fathom what it would be like to be faced with your dilemma at 31. I wish you well.
When I was making my decision(s), I prayed to God to help me make the right decision. Even though I struggled through the process, I believe that, for me, I have finally made the right one.
Good luck,
Rod
-
Hi rodneyd! I usually don`t say too much but in your case think you`ve made the best choice. At 70 years old W+W is definately the way to go... While doing so, please stay active in what members of our W+W brigade posts have to offer. There is plenty you can do to offer yourself a chance of never having to intervine. I`m now 65 and W+W going into 7th year "stabile" and actually feeling better than I did... Welcome aboard! Best wishes, Mickey
-
Thanks Mickey,
Appreciate the support and the suggestion about using the info on the W & W board. I am comfortable with my decision and looking forward to doing more square dancing therapy!
Rod
-
Hi Rod,
Thanks for your suggestions and kind words. No one seems to want to remove this thing. I go for my next MRI in May. If there is no change, I will just have to deal with the dizziness, etc and move on with my life. This has been hard on me emotionally and I'm sure it would be hard on anyone. This is not the news you want to hear, but I just keep telling myself that it could always be worse. I have been having a lot of visual issues too. Like small circular white beams of light in my vision, eye pain, and blurriness along with everything else. They think it is migraines, but no one can seem to really pinpoint anything, since they all say " well, you also have a tumor." I keep being told different things by different doctors. As you can imagine, this is very, very frustrating.
This forum is very helpful and I am glad it is here to share experiences and suggestions.
-
Hello, mac.,
When I first started having dizziness and visual problems I hadn't been diagnosed yet with an AN. My doctor gave me steroids and after about 2 weeks the dizziness stopped. I still have fullness in my ear and daily earaches . I am on W&W also and I don't want surgery if I can help it. Has your doctor tried steroids yet? Just wondering if it would help? Best of luck to you and I hope you can find some answers.
Take care,
MG
-
Hi there! W+W going into my 7th year and things have improved! I`ve tried the steroids at the beggining and they did help. Haven`t takin them since but have definately followed a regimen of what posted in the W+W brigade religously. My ear clog hasn`t happened in six years, migranes are basically reduced to warning signs occasionly (auras) , tinnitus always there but very mangeable ( did neuromonics), dizzyness rare and just go thru it like having a cup of coffee. Tumor "stable" I knock on wood... but have to believe that the pro active lifestyle has all to do with my success. I post this to W+W ers with the hope it will encourge you all... Best wishes, Mickey
-
Thanks Mickey! You give me some hope. :) Keep us updated on your progress.
MG
-
Hello,
I was actually just put on a 6 day prednisone course. They are thinking that I am suffering from migraines on top of this. They don't want to contribute the symptoms to this small AN. Well, I am off the steroid's, they helped mildly, but now we are believing my wisdom teeth could be causing a lot of the issues I am having.
I swear, I cannot get a straight answer. I still have my bottom two WT in. I have severe sinus pressure everyday, dizziness, visual disturbance, teeth pain, etc. So, maybe getting those removed will do the trick. I sure hope so. I feel like it is one thing after the other and no one can really give you a straight answer. I just want to get back to life again. I feel like all of this is consuming me. I just keep saying one day at a time...............It helps a little.
-
Before I was diagnosed, I also thought it was something to do with my tooth or my jaw. I went to the dentist and he didn't know what was causing all my symptoms. I was given steroids that time too and I did get some relief. But then came the dizziness, and yes, I drove my car and was freaking out :o when the dizziness came on me . This lasted for weeks and I went to the doctors again and was put on my second dose of steroids. When the period ended, my dizziness just went away and never came back but I still noticed a slight hearing loss by then and the same fullness and pain in my ear. Ugh, it was so frustrating >:( so I made the appt. with my ENT, and the MRI came next and that was that and here I am 63 years old, with no insurance to help pay for surgery or radiation and my doctor said to W&W and hope it doesn't grow! I just have to pray every day and hope for the best. I guess everyone has a story to tell about their AN! Sometimes it helps to vent! :)
Good luck to all !
MG
-
Hello Jessica,
Please email me at galejesse@hotmail.com if you wish. I would be happy to call you and converse with you.
My sister had a 3MM that disabled her at around age 28 or so…she had the surgery, you may want to search my old posts for information about that. My sister is now 41, she is single sided deaf and has some balance issues - but she lives a normal life. She has adjusted. My sister would be willing to speak with you too.
I have a 2MM AN which … has actually stabilized. It actually slightly reduced from over 2MM to 2MM. I don't know how or why - I suspect having weekly massages and using some essential oils may have help - but I can't prove that. I haven't posted on this board in a long time since things have been going well for me. Anxiety was my worst enemy since my diagnosis. I did have visual problems and some balance problems. It was hard to sort out what was causing what.
Anyway, I could go on and on but maybe it's better for you to contact me, if you wish, and perhaps my sister and I can listen to you and share our experiences. We have talked about forming our own small AN group, although I admit, since I'm doing well, I have somewhat shoved my AN to the the back of my mind. Although I still have tinnitus (sp) and I have another MRI…I am now on a 2 year MRI followup..I just have tried to stop worrying and some days I just don't even think about it. But my symptoms were nowhere near as bad as my sister's which disabled her.
You can overcome - whether it grows or it stabilizes. Trust me, you can. The best thing is to build a plan.
Anyway I could go on but please, if you wish send me an email and if you want one of us to call you, we will. Also, I can tell you that very few doctors have removed very small ANs….my sister was lucky, Dr. Michael Novak in Champaign IL removed hers in 2001. 3MM. It is rare to have a small AN and to have these balance problems. I didn't read all of the posts closely so I don't know where you are…but I will tell you what, if mine gives a problem in the years to come, and Novak hasn't retired, I am getting him to take mine out! He normally works on children and he didn't blink about taking out my sister's in 2001, he did one AN surgery about every 6 weeks back then, which was a lot of experience…
Gale