ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Janey on April 07, 2015, 04:33:32 pm
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I was diagnosed in November of 2104, deciding to watch and wait. I am scheduled for an MRI
on May 4. My tumor was considered small in November, and I am sure hoping it is still small
in a few weeks. Symptoms, however, have grown worse with marked hearing decline, very
bad tinnitus, wonky head (I'm very fond of that term - seems like everyone uses it and it's
great that everyone understands exactly what it means), some dizziness, and definite balance
issues. Some days symptoms are barely noticeable, other days they are bordering on debilitating.
During these past six months I have read so many posts on this forum, and have gleaned a
wealth of information, and still I have not made up my mind as to what action to take if action
is indicated. I am a 59 year old female, and other than the AN, fairly healthy. What I want to do
is nothing!!!! It seems that in so many cases the symptoms pre-treatment are still present after treatment. As many of you, I have experienced much anxiety over trying to plan the "what-if"
strategy. This is what I'm thinking: I want to let the AN alone and hope that even if it shows
growth, it will stabilize at some point, before becoming life-threatening or causing more trouble.
I realize that SSD is probably a given, and so are the dizziness/balance issues. I do not have facial
nerve problems, and that might be the signal for me to stop "watch and wait", but if the other
problems do not get any worse, I would rather not take action. I have prayed a lot about this, and
I would appreciate any thoughts.
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Any dizzy and balance issues should ultimately go away since surgery involves cutting the balance nerve. As your tumor effects the balance nerve, the signal from that nerve gets weaker. For example, my balance nerve was at 50% a few months ago when I had it checked. If I get surgery, it will be 0% when I wake up. It will eventually go down to 0% or close to it if I don't get surgery. Either way, it will be at 0% some time in the future. As the signal from the bad side gets weaker and weaker, your brain learns to compensate with info from the good side. If the bad signal gets weaker a little at a time, you won't have much in the way of noticeable symptoms. It's the sudden drops that make you sick and dizzy.
Mine has been getting weaker gradually and not caused me much problems. Maybe a half dozen times over the last ten years it has had sudden drops in performance that made me sick for a day or two. I call these "attacks" and I just take valium and/or antivert along with zophran to get through them. I've been told if I get surgery, my balance symptoms should be minor because my brain has done so much compensating already and my balance nerve is so weak already.
As for hearing, I agree with you. Keeping your hearing is not something to look forward to. If it still works, great! If it doesn't, you won't be all broke up about it because it's not like it was going to work no matter what you do.
The way I look at it, age and tumor size are the big factors. This is just my personal opinion mind you, but that is what I am using to guide my decision making. How big is your tumor, and what does your treatment Dr think is the point where it's size becomes a risk factor? How old will you be when your Dr thinks age will be an issue with surgery?
Mine is 1cm, so I have a lot of leeway in terms of growth before it gets "too big". I am 48. My Dr says that 58 is plenty young for surgery. So, in my case, using my criteria, I have plenty of time to observe MRI's. I told my Dr I wanted to go 10 years and he thought that was pretty much not going to happen. He also told me he would not get surgery now if he were me. So, somewhere between "not now" and less than 10 years is my mid term planning.
You are 59. Does your Dr think that being 65 significantly changes your odds for a good recovery? Do YOU want to be 65 and be recovering from surgery? At 65, you might be more interested in radiation. Radiation might be more sophisticated in 6 years than it is now. When you are 65, if your tumor hasn't grown at all, you might want to just keep WW'ing. At some point, with advanced age, if the tumor hasn't grown, the odds of it never growing go up, so you may NEVER need treatment.
Sorry, I don't have an easy answer, no one does. All I can do is describe my thought process which, if you ask me, is brilliant! For me, for now, I am just going one MRI to the next and hoping I can reach the point in my life where my kids are off to college and I don't have to work anymore.
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You can read my history by clicking on the link below.
At this point you really don't need to make any decisions, at least not until you compare your next MRI to your previous MRI.
In my case the AN grew 20% in the 6 month interval and I opted for radiation. I was already SSD by then but my balance issues have pretty much been resolved. The tinnitus is minimal and easily ignored. I didn't have the dizziness and "wonky" head that others report.
The trouble with ANs is that, even if they don't grow, they still do ongoing damage. Watch and wait only delays the inevitable.
The best time to kill it is when it's small, you're healthy, and you have good insurance. Those factors can change for the worse without notice.
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Thank you ANGuy and Arizona Jack for your responses. My tumor was 4mm x 7mm in November.
I've only seen my treating physician once, and this was all new to me then. The questions you asked me, ANGuy, are the exact ones I will be asking my Dr. when I see him in May. Arizona Jack - although I want to watch and wait forever, I will keep in mind your comments about seeking
treatment while conditions are most optimal. Again, I greatly appreciate the responses from you both.
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Mine was 3mm x 4mm x 9mm when I was diagnosed in April 2012. My hearing on that side was gone by then. My next MRI was in October 2012 and the AN had grown 20% in just 6 months. I had Gamma Knife in January 2013.
Any decision you make and when you make it is going to be based on a variety of factors yet to be determined. I hope you turn out to be one of the fortunate few who can Watch and Wait indefinitely with no ill effects.
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And I don't know that the balance nerve is always severed? I don't have an acoustic neuoma, but my tumor occupies the same space, and that is about the only symptom that improved after surgery.
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Hearing can be saved, both Gamma Knife and Cyberknife have good hearing preservation rates, especially if you are younger, your tumour is smaller and your initial hearing is good. Hearing can also be saved when tumours are small via microsurgery. You do have to weigh up the risks of both procedures versus W&W.
I chose to have Cyberknife proactively to save my hearing..
Nearly 5 years, and I still have what is considered normal hearing in my AN ear...I have lost some high frequencies, low frequencies are fine
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And I don't know that the balance nerve is always severed? I don't have an acoustic neuoma, but my tumor occupies the same space, and that is about the only symptom that improved after surgery.
An acoustic neuroma starts it's growth from the balance nerve. If they are looking at total removal or even partial removal they want to remove that connection so as to kill the tumor and have a better chance of no regrowth. I believe removing that portion of the balance nerve would be a must. Effects vary depending on how damaged the nerve is to start with. Even if damaged there is still some signal going through the nerve and balance recovery would depend on how much. The more signal, the more balance issues until your body adjusts. The more damaged the nerve and less signal the faster the body adjusts.
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Thank you all for your comments. It sounds as if balance problems are likely to work themselves
out over time. PaulW - I am almost SSD now, but I plan to address this with my Dr. at my follow-up
in May. Thankful radiation treatment worked so well for you!
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Hi Jenny. I have been in W&W since Dec 2013. No change in size at 6 mnth MRI in May 2014. Coming up on my next MRI and keeping my fingers crossed. I am 57 and soon to be 58. I'd like to never have to do anything. I have been told by my MD that because I have had balance/vertigo issues pre that radio surgery is not a good idea. I guess because the tumor swells before dying? That may be a question for you to ask. I have developed some intermittent and minor eyelid twitching on the tumor side. I too still don't know what is best so I am choosing to do nothing. Good luck to you. You have the support of all on the forum.
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Beth, it sounds like our circumstances are very similar. I wish you the best of luck in May
at your follow-up MRI. It's so comforting to communicate with people on this forum that
understand this decision making process, as well as everything else that goes along with
AN's!
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I have SSD and am waiting for a surgery date. If you let it go far enough you will probably end up with SSD too. I wouldn't want that thing in my head any longer than I had to. I finally know what all my symptoms were being caused by and I want it gone now. Kind to creeps me out knowing it's there trying to take over.
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Hi Janey,
I have been on W&W since 2012. My balance is off some of the time but is not as bad as when I first discovered I had an AN. I have 85 % of hearing loss in my left ear and of course the dreaded ringing. My tumor as of yesterday is now 1.3 cm. It has increased in size by 4 mm. I was not happy with the results but it is still considered small. I am with you though, I don't want to do anything because I am 65 and my doc doesn't think surgery is for someone my age. I am still wondering about waiting too long and will my facial nerve be damaged if I wait too long. So many hard decisions to make. I wish you the best answers for your situation. Good luck!
Take care, MG
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MG, there have been several older than 65 who have had surgery and did fine. The biggest issue would be if you had other serious health issues that might be a factor. Do you have a dr who does ANs on a very frequent basis? Also the location of the tumor and if is pressing on the brain stem. I would question the dr anyway.
Cheryl R
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Cheryl R. Thank you for responding. Yes, I have a Dr. who does the AN surgery in Gainesville. I do have other health issues so therefore I hope to avoid brain surgery. I will be seeing him in the next few months so at that time I will see what he has to say .
Thanks again, MG
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So the tumor went from 5 mm to 7 mm and is growing out of the IAC. Decision time. I am talking with Dr. Coelho and Dr. Broaddus at MCV in Richmond VA. Looking at conventional surgery because of pre-existing dizziness and balance issues. Any advice? Any experience with MCV?
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Hi Oak 1971, MG, and Cheryl R,
Thank you for your responses to my earlier post. I had my 6 month MRI on May 4, and much
to my dismay, it had grown a few mm's (like yours MG). It is now around 9mm to 1.1 cm's.
I am scheduled for another MRI in September. I so want to remain W & W, but I think I'm leaning
toward GK if it comes to having to take action. Prayers for your surgery, Oak1971, and prayers for
your situation, MG. By the way, I have lost most of the hearing in my left ear, have some mild
balance issues, and tinnitus that I can sometimes ignore.
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Hi Beth,
So sorry your tumor had shown growth. I pray you will be comfortable with your treatment decision.
Let us know what your dr.s recommend and what you decide. Best of luck to you.
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Hi Janey,
Sounds like you're in the same boat. I have an appointment with Dr. Antonelli from Gainesville on June 25th. Hope to get some answers and see if I should also go with GK. I just want to take my time to decide because I don't do well under stress at all. Sending prayers.
MG
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Hi MG,
Best of luck to you at your appointment. Keep us informed of what you decide.
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Janey,
Thanks. Will let you all know. :)
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Hey all-have decided on surgery with retrosigmoid approach to be done at MCV in Richmond Va. I think I actually feel better now that I have made a decision. Let me know how you all are doing and what you decide.
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Very best of luck to you,Beth. Keep us informed!
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Hi Everyone,
My doctor says I will need to have radiation within the year so I will start to look for the best solution for me. I think I might lean towards Cyber Knife. Has anyone looked into this type of radiation treatment?Would appreciate your input on the subject.
Good luck to you Beth!
MG
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Hi Everyone,
My doctor says I will need to have radiation within the year so I will start to look for the best solution for me. I think I might lean towards Cyber Knife. Has anyone looked into this type of radiation treatment?Would appreciate your input on the subject.
Good luck to you Beth!
MG
I attended an A.N. open day at a local (UK) hospital last year with a visit to its new CK unit and a meeting with the team who uses it. I was impressed by what I heard but I might have been equally impressed if I'd visited a GK facility. From what I've read in the past the potential outcomes look very similar.
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Hi MG,
What is your reasoning for choosing CK over GK? Anxious to know, as I possibly will have to make
a similar decision within a few months.
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Hi Janey,
To tell you the truth, I was trying to avoid having pins in my head. I am a big chicken! :o I am just so confused on what to do. I just want to do what will be the best outcome but who knows that?? Have you done a lot of research on Gamma? If you have let me know and I will do the same.
P.S. Thank you Keithmac.
Good luck!
MG
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Hi Janey,
To tell you the truth, I was trying to avoid having pins in my head. I am a big chicken! :o I am just so confused on what to do. I just want to do what will be the best outcome but who knows that?? Have you done a lot of research on Gamma? If you have let me know and I will do the same.
P.S. Thank you Keithmac.
Good luck!
MG
I don't know how much 'a lot' of research is but I feel that I've read enough from the medics and, perhaps more importantly, from those who've had GK or CK. I hope I've managed to get a reasonable view of the overall situation but there's a lot to take on board so I do understand how you might feel. There is simply no way to know which course of action would turn out best. What happens here in the UK (my summer home) is usually different than in the USA from the accounts I've read and from our American snowbird friends.
In the US folk seem much more able and willing to seek out the best doctors even if it means treatment in a different county or a distant state. Here we have less choice as there are fewer treatment centers anyway. As so often the American healthcare system looks better than ours - provided you have insurance or the wherewithall to pay yourself. But maybe it's just a case of the grass looking greener on the other side?
Good luck and I'll be tracking your postings with interest.
best, Keith
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Hi MG,
Just thought I would add my 2 cents....
I chose Gamma Knife because it was a one time treatment. Honestly, I had no problem with the attachment of the head frame (see my account of experience in Radiation Therapy). If that is the only issue for you, please revisit looking into Gamma Knife. For me, hearing was poor prior to treatment and I have lost just about all of it in that ear now. I believe chances to avoid hearing loss are a bit better with CK, but also dependent on where the tumor is located. Nothing comes with guarantees my friend. I just wanted it to be done and it would have been difficult for me to make multiple trips for treatment. I am not at all sorry I chose this route for my treatment, and once you decide, you will feel much better. Ultimately MG, listen to your gut and act on your own feelings and you will have made the right choice. Best to you....
NYL
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Hi MG,
I have not done a ton of research on GK vs CK. Like NYLady, I like the idea of a one-time treatment.
I am in WV, and if I have to have treatment, it will most likely be somewhere else. The somewhere
elses that I have looked into (Wake Forest, Duke, UPMC) seem to advertise GK the most.
I know it is such a confusing issue. Just when I'm sure I'll go with GK, I start thinking about the
possibility of surgical removal!! I just wish we all knew what treatment would be the best for each of
us!
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Janey-I was told (maybe just my case) that because I have had vertigo and been dizzy on occasion that radio surgery would not be a good option. I did not ask why but would think it might be because of swelling of the tumor which might make those symptoms worse. That is why I went with conventional surgery. Plus-it takes the thing out. Surgery is scheduled for November but I don't think I will change my mind.
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I had a similar experience where I had to decide between surgery or GK, not an easy decision. Cyber knife was not available for me so at least that decision was made. I did a substantial amount of research into my options and created a Pro/Con list of the risks I faced with each treatment and the effect that both treatments would have on my quality of life. In the end, I decided on GK and for me it was the perfect choice.
Please don't let the fear of the pins on the head frame sway your decision process. I've heard of some people being temporarily sedated while the frame is attached and in my case I was just given local freezing first and then the frame was attached while I was awake and sitting in a chair. My biggest complaint was that I couldn't wear my glasses when the frame was on, and eating was a bit awkward. The advantage of a one day treatment outweighed the discomfort of wearing the frame for a few hours. I can tell you that some people experience a massive headache after the frame is removed and others walk away without any issue. I was one of those who experienced the headache, but again, you are in the hospital and they take immediate care of you. My headache hit before the last pin was removed and the frame taken off. I was immediately given an anti nausea drug and a pain med, both through an IV line, a cool cloth for my forehead and I fell asleep for about an hour. After that hour, I was woken up and taken home headache free!!! No further pain meds required and no steroids.
Do your research and follow your gut feeling, you'll make the choice that's right for you!
Cathie
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Thank you Keithmac, NYLady, & Janey.
I have an appointment to see a radiation specialist who does Linac Scapel in Gainesville. I think it is more like Gamma Knife. I will see what he has to say and then of course do more research on other methods. Did you have any side effects from Gamma NYLady? I just want to get everyones take on their experience. I appreciate all of your help! :)
Thanks again,
MG
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Hi MG...
I had my GK procedure approximately one year ago...Prior to undergoing treatment my surgeon, Dr. John Golfinos, advised me that my existing balance difficulty could worsen somewhat after treatment. Also, because of the location in the cochlea, hearing could deteriorate. I have posted my radiation experience if you wish to review it, but to make a long story short, I had absolutely NO side affects directly after treatment. The head frame was a non-issue, because it was painless. (They give you good stuff both intravenously and with a lollypop) and frankly when the doctor applied the head frame, I was barely able to tell he was doing anything. Just felt him back there and the sensation he was touching my head....no pressure, no pain, no headache. When it was over, he took it off, and no problem. For the next three to four months, I felt fantastic. No wonky head, no balance issues, just some tinnitus which I also had prior to treatment. Hearing was about the same, but it was very poor prior to treatment. At that three month point in time, symptoms began to manifest themselves in that my balance became compromised, and my hearing began to deteriorate. At the nine month period, I was given a prescription for vestibular therapy, which I am currently undergoing, with what appears to be a positive effect. It is slow and you have to stick with it and do the exercises correctly, but it does work. I have great therapists who are encouraging of realistic goals. I do not expect to be perfect MG, but better than I was and it looks like I will get there. My useful hearing in my AN ear is about gone. I hear sound, but cannot make out words. Thanks to the information on this forum, I enquired about and was fitted with Phonak BiCros hearing aids. Absolutely the BEST thing I have done so far. My "hearing" now is better than it has been in the past few years. Albeit I am actually only hearing out the better ear because of the way the Bicros works, and that ear is compromised as well, but it truly has changed my life. I am more a part of things again and life is good MG. Tinnitus is so slight, maybe because I am hearing more sound, not sure, but this too has become a non-issue. GK was a great choice for me MG because of my age (74) and the fact that I wanted it done and over with. Surgery scared the stuffing out of me, and as it turned out, it was not was recommended for me anyway. I am a proactive lady and felt I just had to do something rather than wait any longer for my small tumor (7mm) to grow larger and cause more problems, so I went ahead, and I am glad I did. I believe if we do all we reasonably can with hearing assistance, vestibular treatment and whatever other means are available to us, apply ourselves in the most positive way and just keep on keeping on, we will realize the best outcome for us. For some it is surgery, for others radiation, and for the lucky few observation. Follow your gut MG......still the best barometer for our choices in life. Wishing you the best.
NYL
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I am a new member, my name is Pam. (I am a Nurse but I am clueless!) I was diagnosed with an Acoustic Neuroma in April 2014. I had Stereostatic Radiation in August 2014 with no change in the size of 10mm. I have been W n W since. I have many balance issues, have had several falls, I have moderate hearing loss in my right ear, with pressure and constant Tinnitus. I also have vertigo and do not do well in a dark room or well on an uneven surface.
I was recently told that my most recent MRI in May 2015 the Tumor has grown outside of the ear canal into the brain more, it is now 12mm x 7mm x 6mm. I am told that since I had Radiation it is too dangerous to operate since the radiation causes scarred tissue to surround the nerves. I would most likely have facial nerve paralysis, lose all of my hearing in that ear, etc.
Just this past July 4th I had facial paralysis on the right side briefly and suddenly for the first time. I went to the ER to rule out a stroke, but thinking it was most likely the tumor-it was. The surgeons said this was to be expected due to tumor location and Radiation and wants to continue to W n W. I am so frustrated and feel like I made the wrong decision. I guess I should have had the surgery first.
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You may want to get a second opinion
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Pam,
Welcome and so sorry you are frustrated and having increased symptoms. I did not have radiation, but had surgery in 2011, so can't give any advice on the radiation side. Although I do believe you can still have surgery after radiation,,,under some circumstances. A second or even third opinion ,,, I think is a prudent suggestion.
I hope some others will reply to you. However, I suggest you start your own post with a question in subject line such as "Has anyone had surgery after radiation?",, you will get more answers to your situation I believe if you start your own post. This one is older and not really specific enough to your concerns. Many folks may not return to it and see your new concerns. Just a suggestion.
Will be watching to see others suggestions,, try not to fret too much. I have read on here that swelling after radiation is common ( hence change in size of tumor) and new symptoms can occur from that so perhaps that is one reason your Dr wants to wait a little longer,, I don't know, just guessing,,
Prayers and best wishes for some recovery soon,,
Jane
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Pam - How long and severe was the facial paralysis? Since my GK surgery I have periodic numbness in my cheek and tongue on the AN side. Lately the numbness goes all the way up to under my eye. I don't necessarily use the muscles in that area, so I don't know whether I'd categorize it as paralysis. It feels like I am recovering from a dental Novocain shot. Sometimes this happens once a week; sometimes it is every day for a week. I notice it is worse when my ear is very full, often with a weather change or lack of adequate sleep.
I guess one question to ask is how close the tumor is to the brain. Since radiation takes years to stabilize the AN, it may be working.
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Hi Janey, I understand what you must be going through, these decisions can drive you mad. My tumor is a true vestibular schawanoma. It was 4 mm last year and I just found out that it was Closer to 5 mm. MRI center faxed last years report over to my Neurosurgeon. Opps! I always been told that it's more about the location and symptoms? I am 48 with balance issues and was told from 3 yrs ago that my tumor was in a bad location and surgery would be a better option. I also have a condition call dystonia which is a movement disorder, so I would have to be extra careful thinking about moving from W and W. I am consulting with my Neurosurgeon on Wed about Gamma Knife. I am with you on the stress issue, but I think the data is showing great results on the radiation side of treatment of the smaller size A.N, but do your Homework. Whatever I decided for now I will feel comfortable that I made the right choice. I will say a prayer for you that you feel comfortable in the choice that you make and there is no confusion.
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NYLady,
Thanks for your post. I appreciate you reaching out to me as I and others are so confused on what is the right thing to do. I will review your radiation expereince and others.
Good luck with your therapy and I hope your balance improves. Take good care.
MG :)
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Hi Gearbox 123
Thank you for you resonse. I wish you success in your course of treatment as well!
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Seull, Hi Sorry for the delay on my reply! I have since had several episodes of this facial numbness or paralysis. It starts with my eye twitching and the corner of my mouth drawing up each time it is the same always on the side of the AN, similar to a stroke. It is very quick goes away almost as quickly as it comes. Although, the other day it happened over and over over a period of ten minutes or so. The surgeon feels it is just the AN pressing on the facial nerve. It is very scary. There is no pattern, I was laughing once, driving another time...
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Jane,
Sorry to you as well for the delay in my reply! Yes I have heard that there is swelling after Radiation that can be up to a year. I agree, and I thought I should get another opinion regarding the surgery. The Radiation Oncologist and the Neurosurgeon both agreed I should remain in the wait and watch status despite the tumor growth and the new symptom of facial numbness! It is frustrating. I am scheduled for another MRI on Friday of this week. I will post the results of that. My balance is still off, my hearing loss and tinnitus have remained the same.
Oh and I agree I need to post a separate comment for people that have had surgery after Radiation, that would be very helpful for me.
Thank you,
Pam
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I just received the results of my MRI from August. There was no change in Tumor size which is great. I am however having more and more episodes of facial paralysis. I am unable to laugh out loud without triggering an episode. I had six in one day, three just yesterday. I am able to capture them on my cell phone now. My entire right side of my face is distorted... it looks horrible! I hate it. I see the Neurosurgeon on Friday. I am sure this will not change his thoughts that removing the Tumor post Radiation is too dangerous, but I need to know at what point if ever, there be a decision to remove the Tumor. I can't live like this! The research I have found is clear the sooner the facial nerve paralysis is addressed the less likely of long term effects and atrophy.
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Pam,
If I was you, I would get a copy of the MRI and send out to House Clinic in Los Angeles. They may be a good resource for a second opinion about removal vs w & w,,, I agree that I could not sit around and watch my face contort hoping it gets better without more explanation. I feel so badly for you!
I'm not a Dr. But Drs don't always know how hard this journey is for us and they are not the ones experiencing the symptoms and side effects! Their lack of concern and empathy can be MOST frustrating.
I do hope you find some relief and answers Friday. Please let us know.
Prayers and thoughts,
Jane