ANA Discussion Forum
General Category => AN Issues => Topic started by: Willbur on October 15, 2016, 07:58:29 am
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Hello All,
I wasn't sure where to put my initial post so I will post here in hopes of a response. I was diagnosed a few days ago with AN in my right ear. The doctor said that it's currently 2.3 cm or about an inch long which I believes puts me at the medium end of the scale. I've been terrified that this will impact my life greatly. I'm seeking some guidance from other AN suffers to help me through this difficult time. The weird thing is about 4 years ago to the day I had a seizure. Do you think this could be related to my AN? What are some insights. Should I opt to do radiation or go straight for removal? I suffer from slight tinnitus although it can fluctuate as well as I still have some hearing left.
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Wilbur, I have no idea about any possible link between your tumor and seizure. It seems doubtful to me, but sometimes unusual things happen. I am certainly one of those cases. I had a relatively large tumor, a very long surgery, and was left with a few odd challenges. As for treatment, you should consult with multiple docs. Radiation might be an appropriate way to go, and may eliminate the need for surgery. It may not. Surgery may still need to be followed by radiation, as in my case.
While my experience had a pretty big impact on my life, it wasn't even mostly bad. Just kind of challenging. Life is pretty good. Nor normal, but better.
Welcome to the forum, it is a pretty good place.
Tod
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Wilbur, I have no idea about any possible link between your tumor and seizure. It seems doubtful to me, but sometimes unusual things happen. I am certainly one of those cases. I had a relatively large tumor, a very long surgery, and was left with a few odd challenges. As for treatment, you should consult with multiple docs. Radiation might be an appropriate way to go, and may eliminate the need for surgery. It may not. Surgery may still need to be followed by radiation, as in my case.
While my experience had a pretty big impact on my life, it wasn't even mostly bad. Just kind of challenging. Life is pretty good. Nor normal, but better.
Welcome to the forum, it is a pretty good place.
Tod
Thanks for the welcome Bob. How long have you lived with AN? As you mentioned it hasn't impacted your life a lot, but I'm sure insurance costs must be through the roof. I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up. Also, I don't see any support groups for Austin. Lastly, I was doing research on clinical trials. Is this something you have done or plan on doing? I want to do what is best not only for myself, but others around the world.
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Wilbur, mine was about the same size as yours at diagnosis. My first ever seizure, later in life, is what led to an MRI and diagnosis. I had about 8 before surgery and the neurologist continues to tell me they are unrelated because seizures "happen in a different part of the brain",,, ( I haven't had any since the surgery 5 years ago this month!),,,, :-\,, so,,, I guess I would say that yours was probably unrelated also,, just coincidental,,,,,
I would recommend taking your time to research second opinions and listen to your doctor. Some people go straight to radiation and some to surgery and some wait and watch for awhile. It depends a lot on your preferences as only you can make a decision that you can live with. You don't seem to have many symptoms yet and that's good.
Good luck to you. I'm sure you will get more advice,,, I just wanted to chime in on the seizure issue as I have experienced it.
Jane
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Wilbur, mine was about the same size as yours at diagnosis. My first ever seizure, later in life, is what led to an MRI and diagnosis. I had about 8 before surgery and the neurologist continues to tell me they are unrelated because seizures "happen in a different part of the brain",,, ( I haven't had any since the surgery 5 years ago this month!),,,, :-\,, so,,, I guess I would say that yours was probably unrelated also,, just coincidental,,,,,
I would recommend taking your time to research second opinions and listen to your doctor. Some people go straight to radiation and some to surgery and some wait and watch for awhile. It depends a lot on your preferences as only you can make a decision that you can live with. You don't seem to have many symptoms yet and that's good.
Good luck to you. I'm sure you will get more advice,,, I just wanted to chime in on the seizure issue as I have experienced it.
Jane
Hi Jane,
Thanks for letting me know. The first thing when I heard tumor was "OMG I'm going to die". I did research based on the diagnosis. All this started a couple weeks ago with tinitus, followed by loss of hearing. General doctor said middle ear infection most likely, but told me to go see an ENT. The ENT Doctor pegged me at 90% virus, 10% tumor, but wanted an MRI regardless. The crazy thing was the day of my MRI my insurance only wanted to cover half of it and I almost walked out because of my ignorance, but my wife told me to do it anyways regardless of cost. I'm so thankful that I did it, but the day he told me I bursted out crying thinking that it was the end of the world. Once you had your surgery did it regrow or are you good now?Also, from the time you were diagnosed to the time you had surgery what was the period of length? I'm switching to my wife's insurance in January which has a lower deductible.
Also, in regards to the seizure, I was asking because I'm having my MRI sent over to the neurologist from 2012 to see if they can locate anything on it. I wasn't sure if it was related in anyway, but at that time the doc told me that I should be fine in 2012, therefore I ignored it. I've had tinnitus a few times a year, but usually goes away after a few days, thus my reasoning for never it having it checked out. I'm so glad this ENT was very quick about getting me an MRI.
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[quote author=Willbur link=topic=23166.msg979772333#msg979772333 date=1476582711
Thanks for the welcome Bob. How long have you lived with AN? As you mentioned it hasn't impacted your life a lot, but I'm sure insurance costs must be through the roof. I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up. Also, I don't see any support groups for Austin. Lastly, I was doing research on clinical trials. Is this something you have done or plan on doing? I want to do what is best not only for myself, but others around the world.
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Wilbur, My surgery was in 2010. How long I had the tumor prior to that is anyone's guess. With a standard growth rate of 1-2 millimeters/year, it could have been with me either half my life or nearly all of it. At this point in my life, I have no interest in clinical trials. I am currently on a two-cycle for MRIs as long there is no growth, I am happy. My remaining issues are single-side deafness, swallowing difficulties (the small muscle involuntary peristaltic functions don't work very well), some occasional speech difficulties (from both the swallowing problems and perhaps some remaining vocal fold weakness following 18 months of paralysis, and hemi-facial spasms that most normies don't notice, and a no-longer strictly symmetrical face. These issues are essentially minor, and very people have the speech or swallowing difficulties. None of these things have gotten in the way of remaining in the top tier of my profession, three trips to the White House, and having a pretty good life.
My insurance costs have not changed. But I am glad there are no longer lifetime limits. I did not join a support group because the local one really wasn't happening at the time it might have been useful.
-Tod
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[quote author=Willbur link=topic=23166.msg979772333#msg979772333 date=1476582711
Thanks for the welcome Bob. How long have you lived with AN? As you mentioned it hasn't impacted your life a lot, but I'm sure insurance costs must be through the roof. I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up. Also, I don't see any support groups for Austin. Lastly, I was doing research on clinical trials. Is this something you have done or plan on doing? I want to do what is best not only for myself, but others around the world.
Wilbur, My surgery was in 2010. How long I had the tumor prior to that is anyone's guess. With a standard growth rate of 1-2 millimeters/year, it could have been with me either half my life or nearly all of it. At this point in my life, I have no interest in clinical trials. I am currently on a two-cycle for MRIs as long there is no growth, I am happy. My remaining issues are single-side deafness, swallowing difficulties (the small muscle involuntary peristaltic functions don't work very well), some occasional speech difficulties (from both the swallowing problems and perhaps some remaining vocal fold weakness following 18 months of paralysis, and hemi-facial spasms that most normies don't notice, and a no-longer strictly symmetrical face. These issues are essentially minor, and very people have the speech or swallowing difficulties. None of these things have gotten in the way of remaining in the top tier of my profession, three trips to the White House, and having a pretty good life.
My insurance costs have not changed. But I am glad there are no longer lifetime limits. I did not join a support group because the local one really wasn't happening at the time it might have been useful.
-Tod
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Well that is comforting to know Tod. During your diagnosis from your doctor did you instantly change diet or anything? I'm a semi-former smoker (cigarettes) and pretty much stopped drinking after I heard the news. I'm attempting to do some holistic approaches (Kombucha tea, limiting red meats, etc.). For the most part regardless of the smoking and drinking, I've been active by going to the gym everyday and lifting weights. Luckily I don't have any other issues like diabetes, which is heavy in my family or heart issues.
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I don't think there is an association, generally, between seizures and AN's. I suppose if you had problems with CS fluid or brain stem intrusion, they could cause seizures, but I think if that was going on the radiologist would have pointed that out.
As for seizures, there are many kinds and some aren't so clear as to whether they are seizures or not. My son was having seizures that consisted of him being confused, vomiting, looking to his left, and then just going back to normal. This only happened once or twice a year after he went to bed and who would think a 5yo throwing up and being sleepy at night would be a seizure? Sure enough, he had an age-related condition that he grew out of.
I could see where having the room spin, vomiting over and over, and other severe vertigo symptoms might seem like a seizure, and then with hindsight may not have been. Also, approximately 25% of the population will have a seizure and almost all of them will only have one throughout their life.
If what happened to you was a severe, sudden, vertigo attack that left you crawling on the spinning floor as you made your way to the bathroom over and over then I can personally tell you that is a classic AN symptom and probably not a seizure in the true sense.
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I don't think there is an association, generally, between seizures and AN's. I suppose if you had problems with CS fluid or brain stem intrusion, they could cause seizures, but I think if that was going on the radiologist would have pointed that out.
As for seizures, there are many kinds and some aren't so clear as to whether they are seizures or not. My son was having seizures that consisted of him being confused, vomiting, looking to his left, and then just going back to normal. This only happened once or twice a year after he went to bed and who would think a 5yo throwing up and being sleepy at night would be a seizure? Sure enough, he had an age-related condition that he grew out of.
I could see where having the room spin, vomiting over and over, and other severe vertigo symptoms might seem like a seizure, and then with hindsight may not have been. Also, approximately 25% of the population will have a seizure and almost all of them will only have one throughout their life.
If what happened to you was a severe, sudden, vertigo attack that left you crawling on the spinning floor as you made your way to the bathroom over and over then I can personally tell you that is a classic AN symptom and probably not a seizure in the true sense.
Surprisingly not many symptoms with mine at the time other than I fell over and started biting my lips and tongue apparently. It happened in front of a pizza guy. As far as current symptoms I feel great. It's more or less tinnitus and loss of hearing. Balance seems to be on par and appetite is normal.
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Hi Wilbur,
RE: my AN, like I say, I had a seizure, not vertigo ,, and neurologist sent me for the MRI Which ended up showing the AN. that was July 2008. I had another seizure within the month and was put on anti seizure meds. I decided to wait to treat as my symptoms were not that bad and I was able to work.
My symptoms progressed to the point of being debilitating in 2011. That is when I decided on surgery. Not only is size of the tumor important,, ( mine grew to 2.8 cm at surgery) but the location of it is most important. Mine grew toward the brain stem and was impacting it. That is why I was beginning to feel so much worse by 2011. I had surgery, trans lab, in Oct 2011,, 5 year anniversary on the 27th,, ,mine has not regrown ,, knock on wood,, so far. I have an MRI coming up.
So watch your symptoms, get several opinions on how to treat it and you will make the decision that is right for you. There are several doctors who will provide free consultations by phone which I did and it was most helpful. One group is the House clinic in Los Angeles. HEI.com I think. There are others you can find on the forum. You may also prefer to check into radiation for treatment,, I didn't want that route so can't speak to it.
Good luck and let us know how your journey goes. Hope you never experience another seizure!! They are quite scary and disconcerting!! Especially for those around you,,,, ::)
Jane
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So I saw a doctor here who does translab surgery and said that at this point there is no way to preserve my hearing. Should I seek a second opinion or should I just move forward with it? Ive already opted out of radiation because he said it can make it worse. Lastly, he pointed out there are dark spots on it which indicates that the tumor is cut off from blood flow and it should be easier to remove. Any input would be helpful.
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It never hurts to get a second opinion! There are so many options for phone consultations with amazing doctors. House usually gets back to you within a week or two. I called in advance and said I needed an urgent consultation and they called me the day they got my MRI. Based on the size of yours, you don't read much about people keeping hearing or having radiation. Hearing with one really isn't that bad. Actually none this is bad, just a few life changes. I had a tumor much larger than yours, removed and back to work in under four weeks. I did a lot of holistics, healthy eating and exercise leading up to it so I was going into it with my best foot forward. Who knows if any of it helps. I've really enjoyed acupuncture for some head aches post surgery. Best of luck to you!
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It never hurts to get a second opinion! There are so many options for phone consultations with amazing doctors. House usually gets back to you within a week or two. I called in advance and said I needed an urgent consultation and they called me the day they got my MRI. Based on the size of yours, you don't read much about people keeping hearing or having radiation. Hearing with one really isn't that bad. Actually none this is bad, just a few life changes. I had a tumor much larger than yours, removed and back to work in under four weeks. I did a lot of holistics, healthy eating and exercise leading up to it so I was going into it with my best foot forward. Who knows if any of it helps. I've really enjoyed acupuncture for some head aches post surgery. Best of luck to you!
Thanks for the insight. Since my diagnosis I've been actively working out and not drinking soda. I've noticed that I had a quick short tinnitus in my left ear and it stopped. The Dr. said that I shouldn't have NF2 as there isn't a tumor on the other side and that one of my parents would have had to have NF2. None of my parents have any acoustic neuromas and neither do their parents. Perhaps I'm just over reacting. I also took my last steroid pill last night so maybe that might be related.
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Willbur,
Have you had a consult with a gamma knife unit. Exploring all three options fully (surgery, radiosurgery and observation) is a good idea.
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Willbur,
Have you had a consult with a gamma knife unit. Exploring all three options fully (surgery, radiosurgery and observation) is a good idea.
Yes I consulted a gama knife surgeon and he said it's too big. Currently doing immunotherapy to see if I can shrink it.
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This is odd. The general recommendation is that tumors up to 3 cm in diameter (not including the internal auditory canal) are best treated by radiosurgery.
To quote the conclusion from bmjopen.bmj.com/content/3/2/e001345.full.pdf , "The available evidence indicates radiosurgery to be the best practice for solitary vestibular schwannomas up to 30 mm in cisternal diameter"
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Very worried - I would highly recommend MD Anderson in Houston Texas. Dr. DeMonte is the head of the Brain and Spine clinic and specializes in skull base tumors. I thought you had to have cancer to go there until I was diagnosed and started doing my research. I was told my tumor was too big for radiation, but when I went there, was told differently. Given all the information and made the decision for Gamma Knife over the surgery. I am 1 year out from the radiation and just had my one year check up. My tumor not only stopped growing, but has also shrunk. I still have the same amount of hearing I did a year ago. I have balance issues, but my life is wonderful. My husband and I travel full time since retiring and now I am taking care of my new 4 month old grandbaby while my daughter and husband work. Have been doing this for 2 months and will continue until he is 7 months old. I was worried about this because of getting up and down, doing all the things you do with an infant, but it has been fine. I would highly, highly recommend getting a second opinion and getting an appointment with MD Anderson, Dr. DeMonte if possible.
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Willbur, you mentioned that you you had a seizure about 4 years ago. During that seizure, did you have impact to the right side of your head?
I fainted and had a point hard impact to the right side of my head near my ear just over 5 years ago. This may have been the event that triggered the AN. I've had hearing loss symptoms for about 3 years, but never followed through until about 4 months ago at which time I was diagnosed.
When are you planning to have your follow up MRI?
I've been doing research on AN natural growth rates and the latest paper I'm researching ( http://link.springer.com/article/10.1007/s00405-008-0791-9 ) states that for extrameatal tumors like us, with long duration of hearing loss, no unsteadiness/vertigo and sudden hearing loss, the chances of growth more than 1 mm in 2 years is only 12.7%. I'm going to do a detailed article review soon.
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Hi
My AN was 2.3 cm (same as yours) and I had gamma knife at Columbia University five years ago. Every AN is different, so all I can do is tell you about my experience and decision making. Yours may be completely different. Shape of tumor and age and other factors also come into play when deciding treatment options. After exploring all the options and visiting 4 top experts in this tumor in New York I chose gamma knife. Despite the fact that I still have many symptoms, I don't regret going the gamma knife route so far. I have no growth. Am I the same as I was before the AN, NO. I am on medications, with lots of symptoms, but have made peace with myself and the new normal that is me. I am happy to be around to watch my son grow and prosper into a fine young man, now in college. My AN is still the same size 5 years post gamma knife. I had swelling of the tumor post gamma knife, but it went down to same size eventually. My tumor never shrank. I also developed 5 nodules on my thyroid about one year post gamma knife which are being monitored lest they turn cancerous (so far so good, no cancer). They don't know if it is related to the radiation. But I still do not regret going the gamma knife route.
When I was exploring my options, NYU recommended surgery because my tumor was too large for gamma knife and I was too young (middle aged). Columbia U recommended gamma knife. The doctor at Columbia said surgery was barbaric in this day and age (5 years ago). The 4 surgeons I consulted also could not agree on how to approach the surgery -- go through the ear and destroy everything in the ear (which I didn't like in case stem cell research someday can regenerate the nerve), or to go from the back past the brain stem (which my husband, a doctor, was vetoing as too dangerous). Then they had different opinions as to whether to put a titanium plate or to leave the skull unprotected without it, with only skin covering the hole after the surgery (I hope I am not scaring you). NYU leaves it open because they felt the plate causes more problems and headaches than it's worth; Columbia and Mt. Sinai doctors put in the plate to protect the brain and not leave the hole with just skin covering it. Weil Cornell was recommending watch and wait for a while longer. My medical family (brother, father, husband doctors thought this was crazy). So with all these differing opinions among the surgeons, I chose gamma knife. This was five years ago. So I don't know if any progress has been made on any of these issues, but I am mentioning them so you can ask. A lot depends also not just on the size of your tumor but it's shape. Mine was (and still is) like a small ice cream cone with most of the tumor, the ice cream part, pressing on the brain stem and the cone part is inside the ear canal. In your case it may be different, so I would go see a few experts and make sure they are experts in AN with at least 500 AN patients under their belt during their career.
I too was very worried and freaked out when I got the diagnosis. But it will be OK. I promise. Hang in there.
D
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Dee-dee, thanks for taking time out to let us know about your symptoms and journey. I found it informative, particularly the bit about different institutions providing different best advice. Gamma knife from Columbia University , craniotomy from NYU, Mt Sinai and two others (who couldn't agree on which type of surgery) and watch and wait, at least initially, from Cornell. Your tumor was the same in all cases, but you received every conceivable best advice. It demonstrates the lack of consistent knowledge for this rare problem.
The variations on the titanium plate (presumably with methyl methacrylate) was also interesting. Leaving the drilled out bone aas just a hole I hadn't heard of. I've heard of others replacing the bone that has been drilled out.
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Forgot to mention that there is also variability in the hole they drill in the skull for a craniotomy. The size appears to vary from just under 20 mm up to 35 mm!
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Willbur, you mentioned that you you had a seizure about 4 years ago. During that seizure, did you have impact to the right side of your head?
I fainted and had a point hard impact to the right side of my head near my ear just over 5 years ago. This may have been the event that triggered the AN. I've had hearing loss symptoms for about 3 years, but never followed through until about 4 months ago at which time I was diagnosed.
When are you planning to have your follow up MRI?
I've been doing research on AN natural growth rates and the latest paper I'm researching ( http://link.springer.com/article/10.1007/s00405-008-0791-9 ) states that for extrameatal tumors like us, with long duration of hearing loss, no unsteadiness/vertigo and sudden hearing loss, the chances of growth more than 1 mm in 2 years is only 12.7%. I'm going to do a detailed article review soon.
I will be doing my MRI next month. I will report back based on whether or not it is shrinking.
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Willbur, you mentioned that you you had a seizure about 4 years ago. During that seizure, do you remember having an have impact to the right side of your head?
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Willbur, you mentioned that you you had a seizure about 4 years ago. During that seizure, do you remember having an have impact to the right side of your head?
No I don't unfortunately.
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I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up.
Hi there!
Where in Wisconsin, may I ask?
I myself in Madison, WI.
Thanks.
PS: This is my first post on this forum as I suspect I might have AN (most all the standard symptoms listed here).
I will start my own topic..
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I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up.
Hi there!
Where in Wisconsin, may I ask?
I myself in Madison, WI.
Thanks.
PS: This is my first post on this forum as I suspect I might have AN (most all the standard symptoms listed here).
I will start my own topic..
He is in Madison up at UW Hospital. They specialize primarily in retrosigmoid there. I never went because docs here mentioned that translab would be better approach.
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So I saw a doctor here who does translab surgery and said that at this point there is no way to preserve my hearing. Should I seek a second opinion or should I just move forward with it? Ive already opted out of radiation because he said it can make it worse. Lastly, he pointed out there are dark spots on it which indicates that the tumor is cut off from blood flow and it should be easier to remove. Any input would be helpful.
Hi, Willbur -
here's my take on your situation. You need to see a doctor who does both radiation and surgery to get an opinion of what's best in your situation. Most docs will radiate an AN up to 3 cms - so unless there is an issue with the location or some other reason I'm not thinking of here - radiation should be a possibility for you. You may decide that you aren't interested in radiation, but you should at least know if it's a possibility and explore the pros & cons.
It's common knowledge in the AN world that docs who only do surgery recommend surgery (like the surgeons @ House Ear Institute) and docs who only do radiation typically recommend radiation. You need a doc who does both so you aren't getting a biased opinion.
I have an excellent neurotologist in Hinsdale, Illinois if you can't find a doc in your area who does both radiation and surgery. If you're interested, just PM or email me.
Best,
Jan
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So I saw a doctor here who does translab surgery and said that at this point there is no way to preserve my hearing. Should I seek a second opinion or should I just move forward with it? Ive already opted out of radiation because he said it can make it worse. Lastly, he pointed out there are dark spots on it which indicates that the tumor is cut off from blood flow and it should be easier to remove. Any input would be helpful.
Hi, Willbur -
here's my take on your situation. You need to see a doctor who does both radiation and surgery to get an opinion of what's best in your situation. Most docs will radiate an AN up to 3 cms - so unless there is an issue with the location or some other reason I'm not thinking of here - radiation should be a possibility for you. You may decide that you aren't interested in radiation, but you should at least know if it's a possibility and explore the pros & cons.
It's common knowledge in the AN world that docs who only do surgery recommend surgery (like the surgeons @ House Ear Institute) and docs who only do radiation typically recommend radiation. You need a doc who does both so you aren't getting a biased opinion.
I have an excellent neurotologist in Hinsdale, Illinois if you can't find a doc in your area who does both radiation and surgery. If you're interested, just PM or email me.
Best,
Jan
I've got my MRI coming up on the 16th to see if it is growing, shrinking, or staying the same size. I'm hoping that with a combination of the immunotherapy and diet will help kill it.
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I have a buddy back in Wisconsin that works at the neurology department and he mentioned that I should come up.
Hi there!
Where in Wisconsin, may I ask?
I myself in Madison, WI.
Thanks.
PS: This is my first post on this forum as I suspect I might have AN (most all the standard symptoms listed here).
I will start my own topic..
He is in Madison up at UW Hospital. They specialize primarily in retrosigmoid there. I never went because docs here mentioned that translab would be better approach.
Thanks for the reply.
Just today I had my MRI and was confirmed to have 3mmx4mm AN on my left side.
So joining the club here.
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Thanks for the reply.
Just today I had my MRI and was confirmed to have 3mmx4mm AN on my left side.
So joining the club here.
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Welcome to the club. At least your AN is very small at this point. You've got many options including watch and wait. How old are you?
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Willbur, good luck with your MRI tomorrow.
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Willbur, good luck with your MRI tomorrow.
Thanks Sydney! I have it later this afternoon! I will be sure to post results when I receive them. ;D ;D ;D
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It is not shrinking at all. It actually grew just a tiny, tiny bit, but I didn't get exact measurement from doc.
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Look at the images and check exactly how much it grew.
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If growth is tiny, are you going another 6 months and MRI again? (Very few shrink, but it does happen - the literature has from 3% to 22% that shrink, with 13% about the median. Part of that variability is how many mm is the threshold to consider it shrinking. As far as growth goes, I think at 2 mm threshold, more than two-thirds don't grow.)
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If growth is tiny, are you going another 6 months and MRI again? (Very few shrink, but it does happen - the literature has from 3% to 22% that shrink, with 13% about the median. Part of that variability is how many mm is the threshold to consider it shrinking. As far as growth goes, I think at 2 mm threshold, more than two-thirds don't grow.)
Good point. I'm scheduled to have surgery on Tuesday, but I'd like to avoid if I could. :'(
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Good luck with surgery! Let us know how you feel.
Lilith
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Willbur, are your symptoms severe? Could you go another 6 months, get an MRI and then decide?
Also, how long have your symptoms been.
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Sending positive thoughts and wishes for a successful surgery and steady recovery,,
Once we make our decision for treatment (or watch and wait) it is important to remain confident in that decision and find peace. It will help you immensely. After all,, we each are the ones personally impacted by the decision. It's ours alone to make.
We look forward to your post surgery post!
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Willbur, are your symptoms severe? Could you go another 6 months, get an MRI and then decide?
Also, how long have your symptoms been.
Not severe no.... They just said the larger it grows, it means less of a chance to save the facial nerve or would take longer to wake up. Current measurement for me is 22x23x19 compared to 21x23x19 in October. The doc thinks they are off on the measurement and it is technically the same either way.
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A 1 mm difference is withing the error of measurement.
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Welcome to the club. At least your AN is very small at this point. You've got many options including watch and wait. How old are you?
I am 48; just started my own topic next to yours.
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Willbur, did you have treatment? If so, how did it go?
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Willbur, did you have treatment? If so, how did it go?
Its been about a week. I am right side paralyzed with the hopes the nerve wakes up within a month or so. Doc said I will get readjusted but never again will i go through with surgery. It sucked hardcore and I can barley type. I am bit disappointed with outcome but yet we we will see where that leads me too..
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Sad to hear Willbur. I've been following you since you were diagnosed shortly after I was with about the same sized tumor. When you say right side paralyzed, are we talking about the body or the face? Your tumor was medium and I would have thought that the chance of severe complications would be small.
Do the doctors give a good chance of recovery?
I hope everything turns out good "within a month or so".
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Wilbur - I'm so sorry to hear it. Our surgeries were close(mine being the 20th of Jan, on east coast, for a large AN). I had an extremely rare side effect with swelling and had to be put on a breathing tube for first 2 days. Things get better most days and I hope they get better for you too.
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Wilbur, undoubtedly you are diverted as you handle a bunch of problems following surgery, so only respond when you are ready. I, like others here, are hoping that things improve for you.
I'd be interested to hear if the facial nerve wakes up and how things are going. Also, where did you get surgery and who was your surgeon/s?
All the best.
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Willbur,
I hope things are improving little by little.
All the best,
Lilith
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My spouse was treated in July-Aug 2013 with 28 sessions of fractionated Proton Therapy at the The Massachusetts General Hospital Francis H. Burr Proton Beam Therapy Center in Boston- for a 1.5 cm vestibular schwannoma , also known as a acoustic neuroma. His outcome - very very good. He did not miss ONE day of work- he worked every day during each treatment (he used the cancer library computer to set up virtual office/participated in teleconferences) The treatment took as long as a lunch hour at work. He had no side effects. NONE. No swelling of the tumor after proton treatment..NONE. He is still well- even now in 2017. Read more about this by looking at my posts under the alias of Keep Smiling.
If you consider proton therapy -
-Usually you send your MRI to a Proton Center and ask for consideration (for us it was free of charge) At a proton therapy center, a team of doctors evaluates and decides (usualy within 2 weeks) whether the patient is ideal for proton treatment and then a consultation is scheduled, if your insurance is able to cover it.
-The team of docs obviously considers many variables. Not all Acoustic neuroma patients are considered to be ideal candidates for proton therapy. Your tumor might be too big for it, but then again only a team of doctors could evaluate this. If you are considering Proton Therapy , given the size of your tumor it would be prudent to quickly send in your MRI's for a case study review. I would suggest that you send the MRI via overnight mail with signature receipt requested and follow up with a phone call.
-Insurance hassles were very tricky. We dealt with lots of struggles but in the end Aetna covered everything. It was no picnic.
Are you trying to research this from all the angles? Give this a try- the pubmed search tool (: http://www.ncbi.nlm.nih.gov/pubmed/) Learn how to read the studies. Learn the medical lingo. Get help from google about things you don't understand. Try hard to find patients who had bad outcomes from various treatments- send them a private message asking to speak to them.
Be aware that there is a bias towards treatments other than Proton Therapy at this discussion forum. More often than not some of the ANA members will give you advice and warnings about Proton therapy and how it is not exact enough, about how there are margin errors. Ask deep questions...and you will discover how often Proton Therapy is used in children with cancer, whose lives depend on whether the toxic radiation does not contaminate good brain tissue....
Things to ponder-
- The tumor remains stable and doesn’t growth after Proton Therapy. Most people want to get rid of the tumor, however, is there anything wrong with having the tumor there, inside your head, if it never grows and it doesn't bother you in any way? It is food for thought.
-Theory-More AN patients would probably get proton therapy if there were more Proton Centers. Once Proton Therapy is more convenient and less expensive it might be the gold standard to treat vestibular schwanommas.
-There are many proton therapy centers being built around the world. (see http://www.proton-cancer-treatment.com/proton-therapy/proton-therapy-around-the-world/clinical-proton-centres-being-built-and-planned-centres/) The construction of these centers requires significant $ investment. If you research, you will find some negative comments about how Proton Therapy has doubtful outcomes for patients with certain problems, such as prostrate issues. Consider how proton therapy could be efficacious for one medical condition and not for another, and also possible biases of the commenters. Research this and try to uncover unbiased statistics and facts. Get on the Internet and research current info with through a critical lens. Obviously I am in favor of Proton Therapy because of my husband's good results. Maybe it makes sense to try to find people who have suffered and had a poor outcome from Proton Therapy. See f you can find any "warts".
-It is likely that the proliferation of new proton centers would threaten the revenue stream of medical providers of cyber knife, gamma knife and neurosurgery. The number of patients who have vestibular schwannomas and who then get Proton Treatment seems to be small. Other treatments seem favored, but it could be wise to ask if this anti-proton therapy bias is because of people suffer with poor outcomes after Proton Therapy or if it is due to other reasons.
- Time slots are highly coveted for proton beam treatment. It seems the teams of doctors who review case studies and decide whether a patient is a good candidate for Proton therapy MAY favor accepting other "needier" patients- for proton therapy, rather than AN patients. For example, Proton Centers are filled with children with cancers. It may well be that the AN patients are shuffled off to other treatments since there are other ways of treating acoustic neuromas are available (Gamma Knife, Cyber knife, etc).
It is conceivable that very soon there could be a newer innovation that is even better than Proton Therapy. Proton Beam Pencil is the latest type of Proton Therapy- and it may soon be developed for use on head/neck issues. Stay on top of the research. Keep reading and investigating.
Immerse yourself in comedy. I suggest that you get Netflix and binge watch the TV Show called "Chuck" . Norm Cousins built a strong case for the healing power of laughter : https://www.youtube.com/watch?v=mqLAcpXzNks
Best of luck!
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I've heard of these proton centers. They're actually building one in Dallas. I didn't know this could be used to treat vestibular tumors.
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Proton Therapy may or may not be for you. Whatever you decide- best of luck.
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I have been on this site for a number f years. I had a 11 hr surgery on a large AC that was pushing on my brain stem. I lost most my hearing before surgery. It took me 1 year to get what facial paralysis i had and regain my balance issues. I have always dealt with residual headaches and dizziness. I had the tumor grow back and had to have gamma knife done 1 year ago this month 02/2016. I am becoming very depressed as I have been very dizzy balance issues are worse and headaches all the time. I explained to the Dr that I feel as if i just got off the scrambler. I don't sleep well but when i wake up i wait to see if things are better I get up and it all starts over I am exhausted feel like i just got off the ride and frustrated. I have what they think is a cyst on my facial nerve after gamma knife it was found. The cyst lyes right on the facial nerve where it goes into the brain stem and I am going back for another MRI to evaluate as to weather it is a cyst or part of the original tumor that was not seen before gamma knife. I don't know if anyone feels as I do but this does not allow me to do much and I am frustrated.I went for another opinion and was told I was in good hands with my Dr but i wanted to know is this normal are there others that have these side effects.I want to know is the exhaustion normal my left eye sight is not as good as the side without the tumor my eyelid drupes a little and again is anyone feeling such exhaustion or not. Dizziness or not headache or not? Anyone with issue please tell me if I am not alone.If this continues what do I due and why did a psychiatrist tell me not to have gamma knife? Any answers would help. Thank You
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I have been on this site for a number f years. I had a 11 hr surgery on a large AC that was pushing on my brain stem. I lost most my hearing before surgery. It took me 1 year to get what facial paralysis i had and regain my balance issues. I have always dealt with residual headaches and dizziness. I had the tumor grow back and had to have gamma knife done 1 year ago this month 02/2016. I am becoming very depressed as I have been very dizzy balance issues are worse and headaches all the time. I explained to the Dr that I feel as if i just got off the scrambler. I don't sleep well but when i wake up i wait to see if things are better I get up and it all starts over I am exhausted feel like i just got off the ride and frustrated. I have what they think is a cyst on my facial nerve after gamma knife it was found. The cyst lyes right on the facial nerve where it goes into the brain stem and I am going back for another MRI to evaluate as to weather it is a cyst or part of the original tumor that was not seen before gamma knife. I don't know if anyone feels as I do but this does not allow me to do much and I am frustrated.I went for another opinion and was told I was in good hands with my Dr but i wanted to know is this normal are there others that have these side effects.I want to know is the exhaustion normal my left eye sight is not as good as the side without the tumor my eyelid drupes a little and again is anyone feeling such exhaustion or not. Dizziness or not headache or not? Anyone with issue please tell me if I am not alone.If this continues what do I due and why did a psychiatrist tell me not to have gamma knife? Any answers would help. Thank You
Jeez sorry to hear that as I thought my situation was bad. I hope mine doesn't regrow, but the doc said it shouldn't because there wasn't any blood flow to it so I hope he's right. I also hope I don't have NF2 either.
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Good morning Wilbur.
I was just wondering how you were now that I think you are about a month out since your surgery. I truly hope all is well and your recovery is improving daily.
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Good morning Wilbur.
I was just wondering how you were now that I think you are about a month out since your surgery. I truly hope all is well and your recovery is improving daily.
Doing great now. No speech issues. I get tired easily which I never had after surgery (because I was in pain). I'm back at work, moved into new house, back to grilling and smoking meat. I didn't go back to PT because it didn't help me. I'm going to get my staples out and a CT scan to make sure I don't have fluid in my brain. Thanks for asking.
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Great to hear Wilbur. Sounds lie your getting back into it.
Just after surgery, you had facial paralysis - how's it going? Do you have blink?
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Great to hear Wilbur. Sounds lie your getting back into it.
Just after surgery, you had facial paralysis - how's it going? Do you have blink?
It's coming back really fast. Had issues with eye but those are pretty much gone now.
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That's great Wilbur. We were diagnosed with similar sized tumors at the same time so I was watching you with great interest.
I've really happy to hear that facial function is coming back "really fast". Keep us informed about progress and enjoy life.
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That's great Wilbur. We were diagnosed with similar sized tumors at the same time so I was watching you with great interest.
I've really happy to hear that facial function is coming back "really fast". Keep us informed about progress and enjoy life.
Wait on the surgery if you can. I regret doing it right away, but the docs were like "You're going to lose you're facial movement if you don't get it out"
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That's great Wilbur. We were diagnosed with similar sized tumors at the same time so I was watching you with great interest.
I've really happy to hear that facial function is coming back "really fast". Keep us informed about progress and enjoy life.
Wait on the surgery if you can. I regret doing it right away, but the docs were like "You're going to lose you're facial movement if you don't get it out"
Thanks for the suggestion Wilbur. One of my favorite quotes is from Dr Michael McKenna, in the video at https://www.anausa.org/resources/videos/support-group-video-library. The quote is, “The best treatment is no treatment, if you can do it”. Interestingly, the word "can" appears in both his and your statement.
It is interesting that the doctor thought without treatment you would loose facial movement. I can't recall any facial nerve issues that you had before surgery. The article at https://www.ncbi.nlm.nih.gov/pubmed/18559028 concludes "An initial period of conservative management is a safe and reasonable management policy in all acoustic neuromas up to 2 cm in size at the cerebello-pontine angle. Given that there are no failsafe ways of deciding potential for growth in acoustic neuromas, initial conservative management of these tumours offers superior hearing and facial nerve preservation when compared with primary surgical treatment."
In the end, you took a valid option and it looks like you're recovering well. I hope that in the months ahead you fully recover. Keep us posted.