ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: beancounter on November 13, 2009, 10:48:07 am
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I had my first MRI, with diagnosis, in November 2007. With every plan to follow up, I had some things happen that made it impossible. Without going into details, I had a very bad injury the following month (I was just released from physical therapy two weeks ago), my mother's health went south, my mother died and it seems I've blinked my eyes and it's two years later with no follow-up MRI. I still have no symptoms, and fear I've become a "fairy" about it all, hoping that I can just keep it on the back burner. Any opinions?
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Hello and it is nice to virtually meet you. I don't think anyone on this forum will ever pass judgement on anyone else's decisions. Only you know what's right for your individual situation. That said, your AN was really tiny 2 years ago, so waiting and watching was definitely a viable option. You also had a lot of things going on in your life, but now it sounds like you are ready to figure out the AN dilemma. If I were in your shoes, I would get an MRI scan and see where things are. If small change/no change and no symptoms, you can safely watch and wait. As my doctor said, it's not ignoring the situation, watchful waitng is a form of AN treatment. I love this forum. This is a great place to share experiences and find support. Best wishes and please keep us posted. Also, please feel free to PM.
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Hi beancounter .....
To answer the title of your thread ..... no, you are not stupid. You have had a lot going on in your life the past two years that could not be ignored.
As novagirl said it would be wise to check in with your diagnosing doctor and have another MRI (with contrast, of course) just to keep track of your AN now. Since you have had no progression of your symptoms and your AN was very small two years ago, it doesn't sound like any harm was done by waiting. There are a number of people in a wait and watch mode ..... many for years with no growth noted. ANs are weird that way. However, they can suddenly have a growth spurt as well so it is good to stay on top of what they are doing.
Best wishes and let us know what you find out.
Clarice
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Hello Beancounter,
First of all my condolences to you and your family for the passing of your Mother. Our stories seem to be quite similar, as my Mother (who was my best girlfriend) took a fall in Nov. 2006, I was diagnosed Feb. 2007, my dear Mother passed away in April 2007 so my time was spent taking care of her and not devoted to my needs. I also lost my cousin who was only a year older than me 3 days after my Mom. I believe things happen for a reason and the the time is now for you to concentrate on your needs. Just as I did when the time was cleared for me to do so. Yes, true your AN is small and you are fortunate to not have many symptoms, but it would be wise for you to have that MRI with contrast and continue to monitor what is going on with you! You also need to do your research as to what your options are as far as treatments available. Time is on your side as these AN's are notoriously slow growing however you need to be prepared to know what You want to do in case you do need treatment! Knowledge is power, and we all have different journeys we take regarding our AN's. Just remember, the rarity of our condition and that if you seek treatment, go to the best that you feel comfortable with. Blessings to you,
Jackie
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Of course you are not stupid! As others pointed out, you have had a lot on your plate. These tumors grow slowly and aren't immediately life threatening, so you were able to put it on the back burner as other far more important concerns came up. I'm very sorry to hear that you have had a rough two years.
I would also urge you to go ahead and schedule an MRI. You might be lucky and find that your tumor is very slow growing and you can take more time. In this case, however, I don't think ignorance is necessarily the best policy. You are better off knowing if you can continue to wait or if you need to make a decision sooner rather than later. It probably isn't as bad as you are fearing. Sometimes I've found that dreading something is worse than actually doing it. Call and get that MRI! :)
Lyn
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Hi, Beancounter ~
I think you can detect a theme of sorts in the previous posts, i.e. that you're certainly not 'stupid'. We can easily understand that due to serious, life-changing situations - condolences on the loss of your mother and I'm glad you've recovered from your accident - you've essentially ignored your AN diagnosis and are concerned that by doing so you may have done something detrimental to your health. Probably not.
While I can't guarantee that nothing changed in two years, if your symptoms haven't increased than your AN is probably in a form of stasis, which is a good thing. Like the previous posters, I urge you to seriously consider scheduling an MRI to ascertain the actual status of your AN. If it is stable (not growing), you can observe it via annual MRI scans while resuming your normal activities, understanding that if and when it does grow, treatment will be eventually become necessary. Unfortunately, ignoring your AN or simply wishing it away doesn't work. I know, I tried. :)
Jim
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Nancy -
I am SO thrilled to see you posting again! ;D
No, you are NOT stupid - but I would strongly suggest having another MRI to see what's going on inside your head.
I'm so sorry about the loss of your mother :'(
How's your injury doing?
Jan
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Thanks to Novagirl, Clarice, Jackie, Lyn, Jim and my buddy Jan. I still have to pick a doctor, as my family physician won't order an MRI (it would make it so much more convenient, but I understand the medical/legal issue) and has no one to recommend to me. I guess I'll check Nashville, since Lori recommended that a year and a half ago. My brother is a heart surgeon who says, "Nanny Poo, I wouldn't worry about it, and don't you dare let someone get you on the operating table right now". He is probably like most doctors who don't get the screenings and follow-up they should. I don't think of it nearly as often as I used to, but when I do I find myself wondering if it's still there and how much (or how little) it has grown. This will sound weird, but I have stopped drinking milk (my very favorite drink) and have convinced myself that may help, as I believe estrogen can promote tumor growth. It would be really nice if someone found a doctor, made the appointment, called me with the details and made me promise to report what I have learned! I consider myself so lucky I have no symptoms, yet that is probably exactly the reason I am ignoring what I know should not be ignored.
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Did I miss something here? Just curious, I guess, but why is it a potential medical/legal issue for a family physician to order an MRI (with contrast, of course)?
Other than the MRI when the AN was actually diagnosed (which was ordered by the ENT), my primary care physician has ordered all of mine. Then I have had CD ROM copies made myself from the Imaging Center (usually for a $10 charge) to send to various specialists requesting them (or taken my own copy with me).
Obviously when you do decide on a treatment, or even continuing with watch and wait, it is important for your MRIs to be interpreted by the same person(s) treating you for continuity. However, I would think your family doctor could order it, as long as he/she receives a copy of the report and refers you to a specialist. It is also helpful (but not mandatory) to have your MRIs done at the same imaging center so that any discrepancies in size can be minimized.
Interesting concept about milk ..... It would really be nice to know what promotes tumor growth so we could avoid it ..... Personally I have never liked to drink milk as a beverage ..... so I take lots of calcium in other ways ..... wonder if that could be an issue??? :-\
Clarice
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Did I miss something here? Just curious, I guess, but why is it a potential medical/legal issue for a family physician to order an MRI (with contrast, of course)?
I could be entirely wrong here, but I think this just has something to do with Nancy's insurance (?) Perhaps a plan where you have to be referred to a specialist or something.
Nanny-poo :D
I don't blame your brother and his advice at all - and I'm glad you don't have any symptoms prompting you to seek treatment immediately, but you really should keep an eye on your AN. That's part of the whole "watch and wait" idea (you seem to be skipping the watching part, however) ;D
Also, it's just my opinion, but don't deprive yourself of milk - especially if it's your favorite drink. I really don't think that diet has anything to do with having an AN - and chances are if it did, mine would have been attributed to chocolate rather than milk LOL
Jan
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Clarice, my diagnosing doctor (an ENT) was very forthright in telling me he had no idea about how to advise one with an acoustic neuroma and suggested I see some off-the-wall ENT in Indianapolis. My family physician has no idea who specializes in these and I believe she doesn't want to send me for an MRI because she will then have to take ownership in a way. Jan, I didn't just "drink" skim milk, I guzzled about a gallon every three days. I learned in June I am diabetic, quickly began testing often to see what causes blood sugar spikes, and realized skim milk is a huge offender. When I began to do a little research on that, I discovered how little any of us need milk (mainly because of the estrogen connection).
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Beancounter .....
I am distressed that you seemingly do not have a necessary medical support system in regards to your AN. I know you have had way too much "on your plate" recently, but you should not have to be bounced around about your AN. Hopefully someone will chime in here who has been treated in Indiana, but you are not that far from Chicago where there are excellent physicians who are experienced in the treatment of ANs. I know Jan (leapyrtwins) could give you specific contact information for those docs. Check the ANA's list of physicians, as well.
Two years ago I had barely heard of an acoustic neuroma (I am not medically trained). After I was diagnosed, within hours I knew a great deal about the pesky things, just searching the Internet. Physicians have many more resources than we lay people do ..... and in my mind, they should be more knowledgeable about them than we are.
Although a little ways away from where you are, Dr. Takanori Fukushima (at Duke University in Durham, NC) was my neurosurgeon and is extremely experienced in AN removal. Also, one of the major centers for radiation treatment of ANs is in Pittsburgh, PA.
I hope you will pursue finding someone to reassure you, even if you opt to watch and wait ..... but do get that MRI, one way or the other ..... that is part of the reassurance.
Thoughts and prayers. Clarice
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Clarice, I am actually in Kentucky ("where the fun never begins" ....ha). I am an hour from the southernmost point of Indiana, an hour and a half from Nashville and a stone's throw from a few creeks. Lori67 (I believe that was her name) was pleased with the treatment she received in Nashville and recommended that group to me. No, I don't have a support system, except for the wonderful friends I've made here at the ANA forum, but I really can't blame anyone but myself. I could choose at any point to begin to address this "somewhere" with "somebody". I am a very proactive person by nature, but am vacillating on this. Probably the reason I started this thread was to hear everyone say exactly what they're saying.
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Hi beancounter,
Just saw your post. I'm sorry to hear about your mother. Your AN is very small. The majority of people don't get diagnosied until much later in any case. You would have probably been on Watch and Wait as these tumors grow very slowly. You probably do not have much growth if you calculate the norm of 1 to 2 mm a year. However now that you became aware of it again, I definitely think that you should follow up just to be on the safe side, that way you can start geting prepared with regard to your options when the time comes.
Vivian
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Nancy -
Lori (lori67) is in Virginia Beach now, but I know she's very happy with her docs in Nashville. So that's a great start. If she doesn't chime in here soon, PM her or email me and I'll get you in touch with her.
Also, as I've mentioned before I have a wonderful doctor in Illinois - if you want to travel. We could do lunch ;D
Jan
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I see Jan called you Nancy, so hope that is OK to use ..... If you are in Kentucky, we are neighbors since I live in West Virginia. One of my kids lived in Lexington for many years so we made many trips to your beautiful state.
Best wishes on your mission to find a doctor!
Clarice
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Hi Beancounter:
Sorry about the loss of your Mother.
I agree with the many other comments - you should have another MRI to find out the status of your AN. Fortunately, yours was very small and ANs are slow growing so I am sure the lapse in time won't be serious.
My AN was discovered by a local ENT. (My PCP referred me to him.) The local ENT has little or no experience in treating ANs so he referred me to the "professor" - Dr Woods in Syracuse, NY (about 50 miles away). Dr Woods is an Otolaryngolist and a surgeon who has done many, many AN treatments. He is also on the teaching staff at Upstate Medical Center. He is also a member of the team at the Upstate Gamma Knife center where I had my AN treated last week.
So that has been my experience in getting to a Doctor who can properly treat your AN. I am sure that your local ENT can refer you to someone nearby who is experienced in AN treatments. Incidentally, I used Dr Woods as a consultant for over 2 years when I was in the W&W category because he was the "experienced one" rather than my local ENT.
Frank
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Hi Beancounter,
Glad to see your post - you sure have had alot going on recently. - My condolences as well, on the loss of your mother.
Others can relate, as they have - me too. My father had a stroke in May, and is now in a nursing home.
Both my sister and i are here on the forum - such craziness, and i was misdiagnosed a LONG time by local ENTs.
[Wouldn't be here without my sister's rapid diagnosis!] So now i go to a major medical center - at least they know the definition of an AN!
Anyway - i have put off some other health issues, just couldn't take it any more.
Now i believe i am ready to deal with them. So have the follow-up MRI in early Dec., and some other doctor appointments scheduled that are overdue.
I am confident you will get a plan going - however, if you need a little 'push', give me the docs name and number - i will make the call for you.
All my best, and keep us posted.
Sincerely,
Sue