ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: peacefull on October 05, 2016, 07:28:20 pm
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in the fall of 2014 I had a scan done, to explore my sinus & what area was plugging up. At that time it was discovered, a small 3.5-3.0 mm AN on my right side. I consulted a top physician at the U of M in Minnesota, where he suggested I have another scan done in 6 months. However, our Health ins changed to copay's of 20% AFTER we pay the first $5,000.00 made me hold off. I had no symptoms, other than tinnitus in rt ear. I decided to go the some of the very top experts in the world on AN, at the Mayo Clinic, I have a nephew who he & his wife are surgeons there anyway. I'm 64 this year & retired on July 1st 2016, but work part time.
March 2016 I went to the Mayo Clinic in Rochester MN, & had a scan. Dr said to come back in 6 months and lets see what is going on, because there was no evidence of growth from the one in 2014.
Two weeks ago I went back and had the 6 month scan done. Doctor was more excited than I was, (lol) said it stopped growing based on 3 scans over three years. He said some of the AN's will do that. It almost looked smaller to me, than the one last march. He said to come back in two years and don't worry about it...even saying 'forget about it"....I still have no symptoms other than some tinnitus..Praise God!
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Great news! Wish I could have just been on watch and wait forever, but mine grew so I opted
for gamma knife. Hoping it works! Congratulations to you both, Peaceful and Citiview!
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I hope to be as peaceful as that soon. I had an MRI yesterday (quite a stressful experience due ti missing lab reports and delays at the imaging center) and hope for some good news. I want to forget about all this and be free!!!!!!!
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Thank you Cityview! Still waiting for results but being patient!!! Good luck with college touring. I enjoyed doing that with my kids! Patti
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Hello,
I was diagnosed last week with an Acoustic Neuroma, 1.7 cm, right side.
I never had any symptoms; it was found on an MRI that was being done to rule out Multiple Sclerosis. ( I had some finger pain, which was not arthritis, and some neck pain, which is probably due to my time on the computer as a high school counselor. I had some unusual things going on, so I am thankful that I had a doctor that wanted to get to the bottom of the quirky symtpoms I was having.)
So, after an EMG...which whew, not fun having electricity shocking for nerve reflexes, the doctor said it was nothing that he had ever anticipated, but told me I had AN. I am asymptomatic.
I have been referred to an Acoustic Neuroma Specialty Program at Froedtert Memorial/Medical College of Wisconsin in Milwaukee with Dr. David Friedland. I go there next week.
I am looking for some thoughtful advice to be prepared for my initial appointment with Dr. Friedland. I live 4 hours from Milwaukee and want to make the most of this appointment, which is only 30 minutes. (My MRI's have already been sent.)
I am concerned with my options. From what I have googled, there is a "Wait and Watch", a Gamma Knife, or surgery to remove. However, the last two have the potential of making me go from no symptoms to the risk of being blind, facial paralysis, and hearing loss.
I am 52 years old, married for 27 years, and have 3 wonderful children in college. I am scared. With faith, I am turning to the kindness of strangers that have AN or will share their thoughts with me regarding their past treatment advice.
Thank you so much.
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Hi Kare and welcome to this discussion forum of caring, supportive new friends .....
You might want to start a new topic, addressing the fact that you have no symptoms and facing a decision-making process. More people could possibly see your situation and react to it.
That being said, also look at https://www.anausa.org/pretreatment/questions-for-your-physician (https://www.anausa.org/pretreatment/questions-for-your-physician) for questions to ask the doctor you are seeing next week. You might want to look at https://www.anausa.org/pretreatment/questions-to-ask-yourself (https://www.anausa.org/pretreatment/questions-to-ask-yourself) for additional questions to ask yourself.
As for risking being blind with treatment for an acoustic neuroma, that would be extremely rare because the optic nerve is not next to the vestibulocochlear nerve (the one where ANs begin growing).
Because ANs are relatively rare among tumors, it is vitally important that if (or when) you seek treatment, it be done by a highly experienced doctor, who has treated many, many acoustic neuroma.
Keep us posted. Many thoughts and prayers.
Clarice
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Finding out one has an AN is very scary. Yours is the size which one could have treatment but with few symptoms waiting for a time is a good possibility. You may get different opinions from people on what is the best thing to do but the choice has to be yours. Your greatest possibility is the loss of the one sided hearing SSD. There may be balance and fatigue for a time esp depending if the other side has compensated any yet. The facial paralysis does not always happen and can be temporary depending on what damage the tumor has already has done. Right off I have never heard of blindness and would be an unusual case. You can read on here of people with issues but many who do well are gone off of here soon. I go to Univ of Iowa which has a very good skull base tumor -otolaryngology dept and do many many ANs. I wish you well with how this goes for you. Cheryl R
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Your responses are amazing.
I just got back from a long road trip to Milwaukee at Froedtert, Medical College of Wisconsin, Dr. David Friedland.
My audiology results reviled no hearing loss. I have no symptoms. Yet, I have a 3/4" neuroma. Dr. said it is eventual that I will have hearing loss.
I am not going to have the surgery, which will mean no hearing on my right side and a long recovery.
I have opted for Gamma Knife.
I really trust Dr. Friedland, but I concerned as to what to do as I feel fine.
I would appreciate any success stories as well as any horror stories re Gamma Knife.
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Kare,
Please get in touch with me. I'm from Central Wisconsin and I know a radiation doctor in Madison who could probably save your hearing.
Sandy
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I am going o go with Gamma Knife, but am wondering if there is anyone else that had no symptoms, had Gamma Knife, and now have side effects.
Also, I needed to a mild sedative to have an MRI...with Gamma Knife, can I get a mild sedative. I am already anxious.
Is here anyone in that has had Dr. Bovi and Dr. Friedland from the Medical College of Wisconsin, Froedtert, treat their AN? Is there anyone else in Wisconsin. I don't' want to wait until January, as that is the next available appt. to have my treatment.
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Kare, given your tumor is only 1.9 cm and you have no symptoms, have you considered waiting the 6 months until the follow up MRI to see the rate of growth?
My tumor is larger, at about 2.6 cm and I have mild symptoms. Although I'm researching like mad and putting together a default action plan, if there is no growth I will keep extending out a few more MRIs. There's even a small chance (~10%) chance of shrinkage!
I'm (currently) and advocate for radiosurgery, but surgery (retrosigmoid) can be done for hearing preservation.
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Lots of people from WI! I lived there practically my entire life. Just moved out of state a couple years ago.
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Wondering if anybody experience the twitching of the upper eyelid on the side of the AN
Regina
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Hi Regina,
About a year before my diagnosis I had what I would call eyelid fluttering. That is a rapid (few times a second) vibration - but nothing visible. I assumed it was like the fluttering you may get on an arm, which I assume is due to a partially blocked blood vessel. So I would rub my eye and it would pass. Whether it was due to affecting blood flow or waiting I was not sure. Now that I have an AN diagnosed, it may have been due to facial nerve disturbance.
Regardless of the cause, the "problem," has gone away and I can't remember an incidence for well over a year.
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Hi Kare,
I have a 2.7cm AN on my left side and since I have no symptoms other than hearing loss in the left ear, I've decided to W&W. The doc at Duke told me that if I had surgery, I would be worse off than I am now! Duh!
So I'll take as many years of W&W and hope that at my age (69) it will stop growing. I do have an MRI appt tomorrow to see if it has grown any. In the meantime, I have been applying Frankensense oil on my tumor and base of nape, ingesting a drop or 2 daily and started on an Ayurvedic treatment with no eggs,or meat. Additionally, I exercise regularly with a trainer and do balance exercises at least once a week. So far so good. We have a tremendous God and He has a plan for all of us - so I trust Him to take care of me. Good luck.
Regina
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Hi Kare,
I have a relatively small AN in my left ear. Had balance issues and had an MRI in 2013 where they found the AN. After serious consideration of all three options, I finally chose to W & W and the tumor grew slowly until this July, when it shrank around 31%!
So what could cause it to shrink? There are only two explanations that make any sense to me.
The first is that in the June, 2014 issue of the Acoustic Neuroma Association Notes newsletter, there was a study done by a noted researcher Konstantina Stankovic from Harvard. Here is a link to the study, which is quite technical but shows the care and detail of the study. The ANA Medical Review Board reviewed the study and recommended that AN patients consider it (with their physicians approval).
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4458444/figure/F1/
The bottom line of the study was that taking a daily baby aspirin (81 mg) tends to retard the growth of an AN. So I started with the baby aspirin regimen and annual MRI's to check the growth. The AN grew slowly (typical) until my July results which showed the reduction from 9,6 x 10.7 x 8.0 mm (in 2016) to 8.2 x 8.6 x 8 mm in July, 2017.
The other possible explanation is the power of prayer. I know there are many people praying for me to overcome this condition. In addition, one of my HS classmates prayed over me at my last HS reunion in Sept, 2016. I firmly believe in the power of prayer, and am convinced that it helped.
It appears that you have chosen to have gammaknife radiosurgery. Please let us know the outcome of the radiosurgery. We are all in the same boat here, and we all care about the condition and status of other AN sufferers.
For information purposes for others reading this post, Dr. Stankovic will soon be conducting a clinical trial comparing the results of a 325 mg aspirin taken in the morning and one in the evening against a placebo. She will be looking for AN volunteers to participate. I will be considering it, and hopefully others will as well. My only concern is that I don't want to take a placebo if an aspirin may cause further reduction in my AN..
Rod