ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: bethtretrault on February 13, 2014, 01:11:48 pm
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I am newly diagnosed with a 5 mm AN (December 2013). Doing watch and wait. Sometimes I feel normal and sometimes just not right. I always have tinnitus (REALLY loud) in the affected side. I wonder if symptoms I feel (being off balance when I first get up, occasional mild nausea, mild headache, occasional brief feeling of dizziness) are anxiety or the AN. I confess to being really freaked out by this. How do you get through a day without thinking about this, without worrying if it is growing, without worrying if it will show up on the currently unaffected side, without worrying if I will be able to function when I wake up? The more I learn the more frightened I become. The last thing I want is permanent vertigo (or even vertigo ever again). Any advice? I am going to a hypnotherapist Monday in hopes they can help me through the stress. Thanks!
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Hi, Beth ~
I'm sorry to learn of both your AN diagnosis and the accompanying anxiety, which is not uncommon with AN patients in observation status.
I would suggest that if you are stressing out from knowing about the tumor but not acting on the knowledge, you might consider radiation or surgery to address it. I know neither option is pleasant to consider but neither are your symptoms that apparently are impacting your quality of life.
Of course, should you prefer to remain in watch-and-wait mode, then the hypnotherapist may be able to help. You'll know by Monday.
Please try to keep us updated. Thanks.
Jim
P.S. I moved your post into it's own thread to give it better exposure - and hopefully generate more responses.
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I had a different situation but also suffered alot of anxiety from my AN. Mine was big and had to come out. After alot of worry, I was able to pick a surgeon I was comfortable with. I suggest finding other watch and wait people. Try a local support group, or the willing to talk list.
You need a choice you can live with. If you can't find a way to live with it, then the other options should be considered. Also ask your doctor if he thinks the symptoms are caused by the AN or not. That may help you discern the true cause. You can also get some more opinions, and ask them about your specific concerns. Best of luck and keep us posted.
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See also the thread "Top tips for the watch and wait brigade." You will see how other watch and waiters handle it. I suggest you reach out to some of them to talk. Nothing like talking to other people in your situation.
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Hi Beth! I`ve been a member of the W+W Brigade going into my 7th year. There is alot of good info which may help you with making your choice on how you want to handle things. W+W has worked for me taking a pro active choice to my health and well being. So much there to assist you in your AN journey whatever you decide. Please take your time with AN matters and everything will come to you.... Wishing you the best, Mickey
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Hi Beth,
I am also on W&W since last September. My doctor told me to avoid surgery if I could and try to lead a healthy life style with exercise and eating right. Cut back on caffiene, sodium and eat healthy. My AN is not quite a centimeter and it makes me feel like my ear is full and achy. I use to have dizziness but that has gone away, thank God. Maybe your balance problem will ease off in time. I have been taking Advil to ease the pain and fullness and it helps quite a bit. I hope you will keep trying your best and please write to us and let us know how you are doing!
Take care and good luck,
MG :)
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Jessic,
I can REALLY relate to the stress - It ruined my entire summer (2013). After 6 months of weight loss, beating myself up, asking questions, reseaching and researching the internet, I had 27 treatments of a low dose radiation. I finished approxiximately 6 weeks ago and have experienced NO additional problems.
I really think I was having anxiety attacks all summer and did have distorted hearing, balance problems, etc. Now that I'm over the decision hurdle, my symptoms went away, and hearing got better.
Mine was 1 cm, and I'm 44 years old. I assume you are a lot younger. If not, go for the radiation. Seek out the best doctors you can fine.
Send me a personal message at sandyinwisconsin.
Thanks.
Sandy
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In my opinion, you have to have the "right" personality to watch & wait.
It's a wonderful solution for lots of people with ANs, but personally I could have never done it. I would have constantly been thinking about my AN and whether or not it was growing; wondering if every little "issue" I experienced was AN-related or not.
I give a lot of credit to those who choose watch & wait, but for me I couldn't even imagine it. I know I would have spent many, many sleepless nights.
Maybe it's not for you; just a suggestion. Maybe it's time to seek treatment.
As far as being more frightened as you learn more, take the stories on the Forum with a grain of salt. Lots of them are from people looking for solutions for "issues"; a majority of people who had good outcomes don't stick around here for long.
There's power in education - find out all you can about your treatment options and the pros and cons of each; find a doctor or doctors that you trust and have 100% confidence in; decide what works best for YOU; make your decision and go for it.
Best of luck,
Jan
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I am newly diagnosed (Friday) too with a 4x4x5mm AN and while I am still pre-treatment (meeting with the surgeon on Thursday to discuss which treatment option is best), I can totally identify with the anxiety and wondering whether symptoms I'm feeling are associated with this diagnosis or attributable to my anxiety. As a mother of two young boys (I'm 36), I can't help thinking about the impact on them.
Learning more seems to be helping me, although I know sometimes that can add stress ;-) I hope the hypnotherapy help. Have you looked into a local support group too?
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Dear Beth,
One morning last April, I woke up with no hearing on my left side. Within a month, I had a hearing test, 2 steroid injections into the ear drum and an MRI that confirmed a 1.4cm Acoustic Neuroma. This has rendered me 87% deaf on that side, moderate tinnitus and balance issues with eyes closed. I have had ringing in my ear for more than 10 years but thought it was related to aging...I was 53. Since finding out about my tumor, it has consumed me, overwhelmed me, angered me, scared me and paralyzed me emotionally. I did not have any Christmas spirit during the Holidays and that is not like me.
It is what I think about when I go to sleep and is the first thing I think about when I wake up. Then all day long, I have constantly make adjustments in my way of life for work (I do Home Health Physical Therapy), talking with my patients, meetings, when with family and friends. I constantly have to ask people to repeat themselves, or ask my husband to repeat what was said on the TV and use the speaker on the phone most of the time. I cannot be in loud places unless I put tissue or ear plug in my left ear. In recent months, I have had facial twitching on my left side, some headaches and daily fatigue. I nap almost everyday after work.
Because this has consumed me and my family for the last 10 months, I decided to have surgery and am scheduled one month from today with Cueva and Mastradomas at Kaiser San Diego. FOR ME, my tumor is small and yes, I could Watch and Wait but knowing this will never get smaller, has already made me deaf and my balance is already affected, I need to have this out. My husband just turned 64 last Sunday, I am turning 55 in June so we are not getting any younger. Our 2 boys are 21 and 19 but out on their own. So I feel it is in OUR best interest to do it now while we can still manage because if I wait 5 or 10 years, my husband may not be able to take care of me like he can now. Plus, my husband will probably need me to care for him in the years to come so I need to be at my best.
You will cry, laugh, scream, withdraw and go through a roller coaster of emotions. Let yourself do all of them because it's all part of the journey to help you make a decision. Some here have been Watch and Wait for many years and some do Radiation. It's up to you to decide and there lies the problem...deciding. It was the hardest decision I have EVER made but once I decided to schedule it, I told my husband that I felt a sense of calm for the first time in 10 months.
As the date gets closer, I still feel a tremendous amount of fear and yet I don't. Before I scheduled surgery, I joined the gym, hired a trainer 2 times a week and think of myself as an Athlete in Training...for the Event of Life. I can only hope the physical and financial investments will pay off for me post op.
I came to this site everyday for the first few months. In my 36 years in Healthcare, I had never heard of an Acoustic Neuroma so I view that as a positive. I was totally blown away when I learned it was a brain tumor. That being said, I have treated many people with malignant tumors, ALS, MS, and many different medical issues and I am blessed to have an Acoustic Neuroma. REALLY. If we are going to have a brain tumor, this is the one to have. There will be a NEW NORMAL but it could be worse.
So, stay strong, ride the emotional roller coaster willingly and get yourself prepared to make a decision. There is no right or wrong decision but you have to have the wisdom to know what will be the best for you and your family.
Best of luck to you.
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:)Thank-you all for your replies. In some wonderfully we-are-all-connected way it was comforting to read your posts. I went to the hypnotherapist and think that it will help move me to a new perspective. My follow up MRI is in May so not too much longer to see if there is a change. First therapy session is Thursday this week-I'll keep you posted!
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Best of luck Beth, and keep in touch.
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Dear Beth,
One morning last April, I woke up with no hearing on my left side. Within a month, I had a hearing test, 2 steroid injections into the ear drum and an MRI that confirmed a 1.4cm Acoustic Neuroma. This has rendered me 87% deaf on that side, moderate tinnitus and balance issues with eyes closed. I have had ringing in my ear for more than 10 years but thought it was related to aging...I was 53. Since finding out about my tumor, it has consumed me, overwhelmed me, angered me, scared me and paralyzed me emotionally. I did not have any Christmas spirit during the Holidays and that is not like me.
It is what I think about when I go to sleep and is the first thing I think about when I wake up. Then all day long, I have constantly make adjustments in my way of life for work (I do Home Health Physical Therapy), talking with my patients, meetings, when with family and friends. I constantly have to ask people to repeat themselves, or ask my husband to repeat what was said on the TV and use the speaker on the phone most of the time. I cannot be in loud places unless I put tissue or ear plug in my left ear. In recent months, I have had facial twitching on my left side, some headaches and daily fatigue. I nap almost everyday after work.
Because this has consumed me and my family for the last 10 months, I decided to have surgery and am scheduled one month from today with Cueva and Mastradomas at Kaiser San Diego. FOR ME, my tumor is small and yes, I could Watch and Wait but knowing this will never get smaller, has already made me deaf and my balance is already affected, I need to have this out. My husband just turned 64 last Sunday, I am turning 55 in June so we are not getting any younger. Our 2 boys are 21 and 19 but out on their own. So I feel it is in OUR best interest to do it now while we can still manage because if I wait 5 or 10 years, my husband may not be able to take care of me like he can now. Plus, my husband will probably need me to care for him in the years to come so I need to be at my best.
You will cry, laugh, scream, withdraw and go through a roller coaster of emotions. Let yourself do all of them because it's all part of the journey to help you make a decision. Some here have been Watch and Wait for many years and some do Radiation. It's up to you to decide and there lies the problem...deciding. It was the hardest decision I have EVER made but once I decided to schedule it, I told my husband that I felt a sense of calm for the first time in 10 months.
As the date gets closer, I still feel a tremendous amount of fear and yet I don't. Before I scheduled surgery, I joined the gym, hired a trainer 2 times a week and think of myself as an Athlete in Training...for the Event of Life. I can only hope the physical and financial investments will pay off for me post op.
I came to this site everyday for the first few months. In my 36 years in Healthcare, I had never heard of an Acoustic Neuroma so I view that as a positive. I was totally blown away when I learned it was a brain tumor. That being said, I have treated many people with malignant tumors, ALS, MS, and many different medical issues and I am blessed to have an Acoustic Neuroma. REALLY. If we are going to have a brain tumor, this is the one to have. There will be a NEW NORMAL but it could be worse.
So, stay strong, ride the emotional roller coaster willingly and get yourself prepared to make a decision. There is no right or wrong decision but you have to have the wisdom to know what will be the best for you and your family.
Best of luck to you.
Pamm - Congratulations on your decision. I suffered lots of anxiety also, and am so glad its all done. Best of luck and keep us posted.
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It seems risky to watch and wait, given our situation. In 2009 my husband had tinnitus and some hearing loss in his left ear. The ear nose throat specialist did not order an MRI at that time and he did not mention any possibility of an acoustic neuroma. The tinitus continued. In 2012 my husband became deaf in his left ear. In 27 months his acoustic neuroma had caused enough damage to cause him to become deaf. AFTER he became deaf THEN there finally was an MRI. The MRI revealed a 1.5 cm Vestibular Schwannoma. It was too late to save any hearing in his left ear. We do not believe watching and waiting is wise, given our circumstances. To us, if you are watching and waiting, it seems risky. Perhaps we were just very unlucky.
Here is one study that seems relevant:
Skull Base. 2011 Jan;21(1):59-64. doi: 10.1055/s-0030-1265824.
Should initial surveillance of vestibular schwannoma be abandoned?
Eljamel S, Hussain M, Eljamel MS.
Abstract
Early diagnosis of vestibular schwannoma (VS) has increased in recent years because of increased longevity and availability of magnetic resonance imaging (MRI). Initial conservative radiological surveillance is often requested by patients and physicians to establish whether these tumors are growing before embarking on intervention. Initial observation of at least 1 year in all small VS was therefore recommended by some authors. We evaluated our prospective skull base database of VSs that were managed with initial radiological surveillance to establish when this policy should be abandoned and what predicts future growth. Fifty-four consecutive patients with VS in our institution who were managed by initial yearly MRI scanning were studied. The MRI data were collected prospectively and analyzed by Kodak CareStream viewing software where VS maximum diameters in three perpendicular planes and volume were calculated. One patient was excluded from the analysis as he had only one MRI follow-up. The median age of the 53 patients was 59 years (range, 26 to 86 years), 25 were males and 28 were females, and 33 were under 65 years of age; 18 VSs were extracanalicular, 18 were intracanalicular, and 17 extended both inside and outside the canal; 21 VSs were 1.2 cm(3) or less, 22 were 1.2 to 4 cm(3), and the rest were >4 cm(3). Using volumetric analysis, 29.72% of conservatively managed VS grew by at least 2 mm per year, and 70.82% did not grow in 5 years. Age, gender, symptoms, and side did not predict future growth. However, growth in the first year was a strong predictor of future growth (p < 0.001) and initial volume was also a strong predictor of future growth (p < 0.05). Twenty-nine percent of observed VSs grew by at least 2 mm per year in the first 5 years of surveillance. As the growth rate is slow, initial radiological surveillance is justified in elderly patients and patients with small VSs and nonserviceable hearing. Growth in the first year was a strong predictor of future growth. The reported treatment effect should be interpreted in the light of 70.24% of VSs that either shrink or do not change in the first 5 years.
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Each person must decide what's best for them. I don't think anyone advocates wait and watch without periodic MRI.
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Watch and wait may be best for some. For example my son is 17 with NF2 and no symptoms yet. He has many AN's and meningiomas in his brain and spine. Once surgery or radiation is performed (so I'm told) quality of life may never again be the same. Also if you have no symptoms why would you want to risk premature hearing loss or facial paralysis. I think those common side effects would be more scary than watching and waiting. Either way, this disease is extremely difficult to deal with. Basically its a "what if" scenario when it is so new with so few symptoms. And you cannot reverse whatever actions are taken. All around its nerve wrecking and stressful. Therapy is a great treatment!
FYI I was notified about this FREE RELAXATION TECHNIQUE STUDY for anyone interested. It can be done online as well as in person:
Are you feeling stressed?
The Family Center for Neurofibromatosis at Massachusetts General Hospital is conducting a research study to see if relaxation practice may be useful for adults with NF1, NF2, or schwannomatosis.
What does it involve?
8 group stress-reduction sessions led by Ana-Maria Vranceanu, PhD, a licensed Massachusetts General Hospital (MGH) psychologist You will be asked to fill out a questionnaire on the computer at the beginning, end, and 6 months after the sessions. All sessions will take place from your home, using Skype, a software program you can use with a computer and a webcam to have live video-conferences
Sessions are 1.5 hours long and held once a week
This study DOES NOT involve taking medication
Who can participate?
We are looking for people ages 18 and older who have a diagnosis of neurofibromatosis 1 (NF1), neurofibromatosis 2 (NF2), or schwannomatosis.
What are the possible benefits?
If you participate in this research study, you will be taught relaxation exercises that you can continue to use after the study. There is no cost to participate in this study and your decision to participate will not affect your care at MGH.
How do I join?
If you would like to learn more about this research study, please contact the study coordinator, Emily Drewel, at 617-643-6036 or at edrewel@partners.org.
Thank you for considering our research study!
You will be helping us gather important information about a training that may help other patients in the future.
For questions or concerns, contact the study investigator: Dr. Ana-Maria Vranceanu, PhD, at (617) 643-7996 or avranceanu@partners.org
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Hi Keep Smiling:
I agree with v357159 - W & W should be accompanied by periodic MRI's to keep track of tumor growth (or no growth).
You seem angry that your husbands condition was not diagnosed properly. Since an AN is relatively rare (1 in 100,000 people) it seems likely that a lot of people with an AN will not be properly diagnosed.
From what I have read on this forum as well as in other literature, the onset of deafness in an ear may occur overnight. Many people have reported waking up with a fullness in their ear, followed almost immediately by some or total deafness. The fact that your husband lasted 27 months without being deaf may have been fortunate.
One statement I see from some surgeons is "watch and wait for what?"
In my case (.9 cm AN in left ear, diagnosed in October, 2013), I have had no deafness, just balance problems, which I can live with for now. If I had surgery or radiation, there would be a good chance that I would lose all hearing in the AN ear. So I asked myself a key question: "Why would I go through a procedure that made me deaf in that ear?" My answer is "I don't want to do that". I would be happy to go 27 months without losing my hearing, because I would have been able to hear for that time frame and my quality of life would be better than being deaf in that ear. So for me personally, I am happy to be on the W & W side. If and when the AN affects my hearing (or the periodic MRI shows accelerated growth), then I will deal with it.
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Watch and wait is certainly an option for some. If the tumor is not causing problems and not growing, then it can make a lot of sense.
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There is also a good chance with the small AN that mid fossa with a very experienced surgeon who does them that you might never lose hearing at all. Not all surgeons do them. My dr at Univ of Iowa does and does more than Mayos in Rochester. One just does not know what the future does hold for you, if there could be sudden loss, if tumor will not grow, if one does the surgery and one does lose it with the surgery due to what the tumor might be doing to the nerve, The surgery is only done for AN's under a certain size. 1.5cm I think. Or the tumor is removed with hearing saved. Not an easy decision. Cheryl R