ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: Julie in TX on November 05, 2008, 09:31:15 pm
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I never thought I would be searching for a support group. I am in the health field and have recommended such groups as this to many families over the years. My "Sha ne ne" as I like to call it was discovered last month due to random symptoms of vertigo and ringing in the ears. What sent me into the PCP was arm pain that is still undiagnosed...... That's for another day/time.
After multiple tests and several specialists, a neurologist did an MRI just make sure nothing was there. We were both suprised! He referred me to a private neurosurgeon which seemed to push radiation. I am fortunate to work in the Texas Medical Center in Houston, TX and have many contacts at world reknown institutions. I had the pleasure of seeing the team at MD Anderson who really took the time to explain to me what the pros and cons of are of the three options: watch and wait, radiation, and surgery. They addressed these pros and cons not just based on research but based on my circumstances such as age, symptoms, being the mother of three young children, and in a full-time high stressed career. My husband and I are choosing to wait for now. I will have my first follow-up in February which includes a repeat MRI, repeat hearing screen, and balance tests.
As many on this site have described, waiting is somewhat unnerving. Part of me just wants it out but I also do not want to make any rushed decisions. So we wait and are hypersensitive to any new sensations!
Well, I didn't pose any questions but it sure feels good to write this out. Thank you for the support and the information!
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Hi Julie~
I am from Texas also - way in the Panhandle, but come to Houston quite often as almost all of my hubby's family live there. If you would like to talk on the phone anytime or meet up for coffee when I'm there (Dec. 19-27), let me know!! I actually met my hubby in Houston and then later had surgery there!
K
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Hi, Julie. Welcome to the forum :)
Waiting is somewhat unnerving and it's not for everyone, but I think your plan of another MRI in February and being hypersensitive to any new sensations is a good one.
It also sounds like you have a great groups of doctors.
It probably goes without saying, but we're here for anything you need. If you have questions, want to vent, or just share your experience, you'll find we're here for you.
Good luck.
Jan
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Hi Julie,
You can pass the time by thinking of it as watch and wait and research, so you can feel more ready to pick a treatment when the time comes.
Glad you found the site and are finding it useful, even if you don't have any questions yet. Welcome.
Steve
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Welcome--I think!? Sorry for your dx, but we understand and will support any decision you make. Do keep "eye" on any increasing symptoms and like Jan said having MR in Feb is good decision!
Cheers and hoping Feb's MR shows no growth!
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Julie,
Sorry you have an AN and joined our elite club. Watching and waiting is not as easy as it seems. I think the Drs. want us to figure out what we want to do, and then go forward. It is nice to have time to go over options, think, get other opinions and figure out what is best treatment for you. I am not having such an easy time with watch and wait due to my symptoms but each day I march forward and will wait another 6 months for the next MRI. I did like the opinion from the House Ear Clinic, they are really precise to the point and very helpful. Best of luck with your decisions and research.
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Hi Julie,
Like others have said, sorry about your AN, but you'll be happy you found this group. I live in the Houston area and had successful surgery to remove my AN at the Medical Center in August. I personally have learned a lot from the people on the forum. My email contact is in my profile, so feel free to contact me anytime.
Patrick
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Hi Julie,
I just found out about mine 2 weeks ago. Watch and wait is unnerving, but it is wonderful to be able to have the ability to have some time to do plenty of research. If the decision ever comes to be made to not w&w, at least you will have an idea of the statistics, the doctor you want, all questions answered as much as you can. That's what I'm doing. I'm also having monthly audiology tests to make sure my hearing hasn't decreased in AN ear (still a feeling of fullness). Hope everything works out well.
Tisha
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I`ve been waiting and watching for around a year and a half now with no change nad 3 mri`s. I`m a lot older than you (60) but have same size AN .12x.06. They say the older you are the better chance AN has come to its growth limit. I think you have made a good choice to monitor and act if necessary especially when your symptoms are minimal. In any case you seem to be in good hands. Wishing you the best! Mickey
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Hi Julie,
I was in W&W mode for quite a while (note my signature). My AN was found by accident, and it wasn't causing any problems at the time. I decided to W&W with routine MRIs to monitor growth. My criteria for treatment was if the AN started growing or if at any time I started having bothersome symptoms. My criteria was met in May when the AN started growing, and I started having some symptoms that were bothering me. My AN doc said my AN was a candidate for W&W or treatment.....my decision. However, my AN doctor and the majority of the doctors I saw for second opinions said these ANs are easier to treat when they are small. Of course location can be a factor, also. I did a lot of soul searching, did a ton of research, consulted this board, and I finally decided to go with GK (GK was just a personal decision on my part). I had GK on Oct. 21st so I am a "newbie postie". I don't know what lies ahead, but I think I made the right decision for me. I have maintained my hearing, and I have only encountered a few bumps in the road so far. Nothing major. On steroids for a couple of days now to deal with some swelling. People here said you will get to a "gut" feeling about what to do, and I believe this is true because it finally happened to be. The AN journey is a difficult one. Sounds like you have access to an excellent medical facility which is great. It is important to find a doctor you feel comfortable with and doing the research is worth it. Best wishes, and it looks like there are a lot of TX folks to guide you. I found some fellow ANers here in Colorado, and they have been a great support. One person lead me to my current doctor, and the others took different routes due to their individual situations. I have also found many other folks here on the board who I Personal Message, and they have really helped me a lot also. Best wishes to you. It is "normal" to feel scared and confused.........just to let you know.
Nancy
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Hi Julie
Welcome - like you I couldn't believe I would need a support group for this condition known as a Acoustic Neuroma. Initially I thought, have surgery and lets get on with it until the research showed the implications of invasive therapy and the possible effects on quality of life after treatment. I decided to choose W&W when diagnosed in Aug 08 because my AN is small and my symptoms are quite tolerable. I cannot see the point at this stage of going through major surgery until it is absolutely neccessary. I do struggle a bit on a daily basis becasuse the AN has comsumed my thought processes over the past few months but emotionally I am much better, mainly because of the forum and the knowledge I have gained. I have come to realise that when treatment is inevitable I know (because of forum) that I will come through this and adjust and I will have the support from the forum and my family. I have noticed some changes since diagnosis like feeling woozy, I have become hypersensitive to certain noises and and my tinnitus seems to change frequency, my hearing is pretty poor but overall I still feel pretty good. I don't know whether the symptoms have been there for awhile and the only reason I have noticed them is because now I am more aware of what can happen.
Take care 8)
Kimbo
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Welcome Julie in Texas!
Although a diagnosis of acoustic neuroma is not exactly a cause for celebration, I'm glad you've found this site and took the time to register as a member and post your message.
As a health care professional, you clearly have your situation in hand with good doctors and an understanding of your options. That is a plus for you because many newly diagnosed AN patients are frightened and confused by the seemingly complicated aspects of the diagnosis and the often conflicting opinions of doctors regarding the most efficacious treatment.
Observation ('Watch-and-Wait') is a very sensible option for many and with your now-heightened sensitivity to any manifestations of symptoms from the tumor as well as frequent MRI scans to monitor it's possible growth, you appear to be choosing the best option for your specific situation, considering your relative youth, status as a parent, career obligations, etc.
Although, initially, you have no questions, that may change in the future. If so, we're here to inform and advise from a practical standpoint based on our collective experience with this comparatively rare tumor.
Please stay connected here and use the site and forums as another resource, remembering that even though we're not physicians, the folks here have first-hand knowledge about ANs and the kind of empathy few can realistically offer. We're happy to share whatever we can, as you may need it. I wish you a fun holiday season and no growth showing on the February MRI. :)
Jim
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Thank you, everyone for your support and encouragement! I appreciate the personal stories and the fact that no one pushes their decisions upon us "newbies."
I look forward to trying to catch up with some of the folks from Texas.
THANK YOU ALL FOR SUCH QUICK RESPONSES!!
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Welcome, Julie!
I live south of Houston and had surgery in Clear Lake three years ago. We have a great support group for the Houston area. We met in d***inson this month and will be in North Houston I think in February. We try to move it around a bit because this is such a huge area and we don't want it to always be too far for anyone.
Sorry you had to find our group this way, but welcome!
I had my breast cancer treatmentat MD Anderson twenty two years ago......great place.
Kaybo,
IM, PM or email me, I would love to get to meet you when you are here in December and Julie too!
Brenda
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Hi Julie - I may be the longest "wait and watcher" - just celebrating (if you can call it that) my 7th year. My tumor is on the 9th cranial nerve and is somewhat like an acoustic neuroma only it would have other symptoms - swallowing problems, gag reflex, and hoarseness - all of which have not caused any problem. It was found incidentally after a bad headache (which ended up due to a blood pressure problem) in November of 2001, and I was devastated. I was working in a hospital and showed my boss (a pathologist) the film. He introduced me to a wonderful neuroradiologist and he has been extremely helpful ever since. In the seven years, I've only experienced 2 to 3 mm of growth which is very minimal. In fact during the ensuing years my husband also developed a benign brain tumor called a "meningioma" - he had surgery, then had regrowth, and was treated with CyberKnife a year ago. Trying to balance a full plate, I developed breast cancer on top of everything else and am now a 4-1/2 year survivor.
I think taking a wait and watch approach is not for everyone but in your case, it makes sense to wait until your first MRI followup.
As with everyone else on this board, my thoughts and prayers are with you and do keep us informed.
Sheryl
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Sheryl,
Congrats on surviving breast cancer. I admire you for W&W for so long. I was on the list for about 2 1/2 years. I was fine with it until the AN started growing and symptoms appeared. I am 2 1/2 weeks post GK now, and I am hitting a few bumps in the road. All in all, life is good! Cindyj on our board here is also a breast cancer survivor, and she is having AN surgery at House in LA today. You breast cancer survivors are tough ones!!! Best wishes as you continue to W&W.
Nancy
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Hi, Sheryl,
Sorry, got ya beat . . . wait and watch since September '01. But just got word that my 11 mm by 19 mm tumor is now 19 mm by 19 mm with cystic spaces. So, you'll be back at number one soon. I have an appointment at Mass Eye and Ear on Monday with Michael McKenna who has been following my neuroma for over seven years.
I had always planned to go to Johns Hopkins for FSR, but my very recent research suggests that cystic tumors respond to radiation with potentially dangerous swelling. So, pretty nervous about the whole thing, but at least my children are grown and just graduated from or attending college.
I'm curious about recovery times, getting back to normal life post-op, what I can expect, assuming all goes as well as I hope. Will I need much assistance on a daily basis after returning home from the hospital?
Thank you.
Nancy Mc
New Hampshire
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Sheryl & Nancy Mc -
you guys both impress the hell out of me. It's all I could do to wait for the 6 weeks between my diagnosis and my surgery ::)
Patience is not one of my virtues ;D
Jan
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Hi Nancy Mc - I'm just south of you right now on Cape Cod. Hubby and I are able to live the life of "snowbirds" and will be off to Florida on Wednesday. My doctors are in Florida as we lived there previously for eight years (originally from Massachusetts and missed it). His doctors are at the Brigham and B.I. (we follow in Phyl's footsteps - you'll get to meet her some time on this board).
Everyone is different when it comes to treatment and recovery. I feel if you have done your research, are happy with your doctor (s), and keep a positive attitude - you'll get through this and be able to deal with problems (if any).
I'm hoping that the story I heard about being older and these types of tumors growing more slowly is true as I am just about ready to collect my first Social Security check!!!
You are in good hands at Mass Eye and Ear - good luck and keep us informed.
Sheryl
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Hi Sheryl! My Dr. is currently holding very many patients on wait and watch. I personally know 3 patients 2 who are in their 10th year a 1 who`s going on 18 years. I also just read an Italian report where 8 patients were followed 62 or better waiting and watching with 6 having no more growth and 2 very minimal with no one requiring any intervention. Basicly what I`m saying its definately a very logical course of action. I`m W+W so far for 3 mri`s (stable) and my Dr. now says to go yearly. I`m 60. Keep the faith and best wishes!
Mickey
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Hi, Sheryl,
Sorry, got ya beat . . . wait and watch since September '01. But just got word that my 11 mm by 19 mm tumor is now 19 mm by 19 mm with cystic spaces. So, you'll be back at number one soon. I have an appointment at Mass Eye and Ear on Monday with Michael McKenna who has been following my neuroma for over seven years.
I had always planned to go to Johns Hopkins for FSR, but my very recent research suggests that cystic tumors respond to radiation with potentially dangerous swelling. So, pretty nervous about the whole thing, but at least my children are grown and just graduated from or attending college.
I'm curious about recovery times, getting back to normal life post-op, what I can expect, assuming all goes as well as I hope. Will I need much assistance on a daily basis after returning home from the hospital?
Thank you.
Nancy Mc
New Hampshire
Hi there Nancy...
Sorry to learn that you are about to relinquish your 'watch & wait' status...I am only 5 months behind you re having been diagnosed in February 2002.
Just curious to know at what stage(s) following your diagnosis did your growth rate become apparent...and also, as my AN has a cystic component which has apparentlly partly dispersed over the last couple of years, your comment relevant to your recent research concerning alleged dangers of swelling applicable to the radiation of cystic ANs is of particular significance and it would be appreciated if you could provide us with the origin of your research.
Regards
Derek
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Hi Derek (and Nancy),
I posted a question on the CK forum about cysts, and Dr. Medbery gave a quick reply. While he mainly does CK, he also has experience with GK, and probably FSR - he has been around a while. Here is what I asked, and his reply:
Me: "What effect does the presence of a cyst or cysts have on radiation treatment of an AN? The particular case I am asking about is a 2 cm AN, with "small cystic spaces in the tumor." Is swelling a much bigger problem when there are cysts? Is it riskier? Thanks."
Dr. Medbery: "I don't think that matters. Occasionally, there are large cysts and some centers will surgically drain the cyst before treating."
I am also interested to read that you had a cystic component which has partly dispersed. Watch and wait can work for cysts too, I guess.
Steve
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Hi, Derek.
(My son's at U of Edinburgh for four years studying Scottish History. I love it over there!!! Where are you?)
Anyway, Steve asked the same. I cannot remember where I read about cysts swelling post radiation. I was googling around. Sorry. I didn't know I had small cystic spaces at the time, just tripped over the information after I learned my tumor had grown from 11 by 19 to 19 by 19 in a year. It had only grown 2 mm in the six years previous. Then I got the radiology report and read the cyst bit.
I'll ask Dr McKenna at MEEI tomorrow and get back to you.
Nancy
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Steve / Nancy Mc...
Thanks Steve for raising the aspect of radiosurgery involving the presence of cystic components within the AN with the Docs over on the CK board. The relevant response endorses the opinion of my neuro consultant who had previously indicated that such a factor did not present any particular additional problems when the AN was treated via radiosurgery.
Nancy...I certainly would be interested to read the article that you referred to if you are able to locate the reference. It is most unfortunate that after some 6 years without any growth your AN decides to 'flex it's muscles' and has a 4 year spurt within a 12 months period!
With a name like McDonald and your son studying Scottish history at Edinburgh Uni you appear to have Scottish ancestory? I live at Tynemouth on the north east coast of England which is about 100 miles from Edinburgh and only a 2 hours drive away. Great place to visit isn't it!
Regards
Derek
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I too am newly diagnosed...like exactly 1 week. In that one weeks time I have had 3 opinions as I work with Neurosurgeons and then was referred to hospital in NYC where I was given hearing test and will be going for the ENG test next week. I was told I am lucky that it was found early b/c it is small in size right now and that gives me time to think about my options.
What I liked about your statement is that i feel the same as you. I just want it out! But I too have young children and the same symptoms. Some vertigo and occasionally a high pitched ringing in my ear.
This forum has helped a lot and I'm on here everynight reading up on this. The thing I find very confusing is that it seems that every single person has different feeling, responses or post surgical problems.
I'm hoping after my test next week if it comes back ok then I'm schedule for a follow up MRI in March, so I'm a "Wait and See" as well which I'm not sure how I feel about but I will wait till March and decide what to do after that, in the mean time I continue to do research and started with vestibular training exercises.
I wish everyone the strength to make the right decision and pray it all works out for the best.
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The thing I find very confusing is that it seems that every single person has different feeling, responses or post surgical problems.
If it is any consolation, you have got it just right. Everyone's experience does vary in it's own special way, making comparisons that much harder to do. From initial symptoms, to patient preferences, to treatment results and recovery, no two AN's seem to be exactly alike.
I am waiting for March as well. With radiation, you also get to play a little watch and wait after treatment, so to speak, to see how it all turns out.
Steve
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Dawn,
Hi there. I certainly understand your confusion, as i am newly dx as well. The really weird thing is that my sister was dx just 6 months prior to me (which is what prompted me to see another ENT!) - Even as sisters, we cannot really compare our situations, just discuss the various options as these wonderful people do here on the support site! I am in w & w until next MRI in April 09, while learning treatment options, too. - Steve's words are reassuring. (Thanks, Steve!)
I pray for strength and courage every day as well - so thank YOU for those special thoughts and prayers.
One way or another, we are all in this together!
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Julie - i am so glad you found this site, too!
The people here are wonderful, and they help me maintain my sanity, especially when i feel i have no one else to talk to.
Dawn & Julie ---I look forward to continue reading your posts.
My best to all.
Sue