ANA Discussion Forum
Watch and Wait => For those in the 'watch and wait' status => Topic started by: amye on March 26, 2010, 03:36:20 am
-
Hi Everyone;
I haven't posted in a long time, but have been on the forum periodically since I was diagnosed in March 09 with a 4mm AN deep in the IAC (laterally impacted, against my cochlea). I had a severe vertigo episode that led to my diagnosis, and subsequently learned that I had some high frequency hearing loss (which I hadn't realized). A few months after diagnosis, I developed tinnitus as well.
I am 44 years old, very physically active, and otherwise healthy. I've never had any health issues in my life prior to this, and it has been a huge blow.
I have been in W&W for the past year for several reasons, not the least of which is that I had a 5 week-old baby when I was diagnosed, and wasn't ready to take on the risks of undergoing treatment. My baby is now over a year old, and I also have a 3 1/2 year-old daughter. I also work and run a small horse farm. I have tried my best to get on with my life and put my AN "aside" but it has been a struggle.
This year of W&W has been really challenging. I have had only one more severe bout of vertigo (about a month ago), but have had chronic dizziness, wonky-head stuff and vision problems due to chronic nystagmus. My hearing has remained stable but the tinnitus has become worse over time and really interferes with my life. I feel like my AN symptoms sorta run my life. I have been seeing a vestibular therapist and there are periods when I function very well, yet just when I think my life is back in some form of order I will have another period of dizziness or a big surge in my tinnitus and it's just impossible to ignore.
Strangest of all, I have had two MRIs since my diagnosis and the tumor has not grown. in fact, I have an MRI from Feb of 08 (when the tumor had been missed by the radiologist) showing the same size...so what I have is two years of no apparent growth. Yet I am symptomatic almost every day, and have really scaled my life down to be able to manage.
I have been consulting with Dr. Brackmann at House as well as Dr. Chang at Stanford. Both are wonderful and have recommended treatment in spite of my small tumor size and apparent lack of growth. I am really scared of surgery, and my gut has been to do radiation. However, because of my dizziness I am worried about becoming worse and not being able to care for my children and continue working (which I now do part-time). I am just so tired of struggling! I am stuck because I don't have confidence that treatment will make me better, and fear it may make things worse (possibly in ways I don't now have to deal with). Yet the daily status quo of my life is not good either. Do I take a chance on treatment?
I am so grateful for this forum...would have been an even harder year without all of you!
Thanks,
Amy
-
Amy -
while watch & waiting is great for some, once your symptoms are hindering your daily life, in my opinion, it's time for treatment.
It sounds to me like radiation is the way you think you should go and I personally think that would be a great choice for you. You should go with your gut.
Dr. Chang is an excellent doctor and you'd be in good hands with him.
Jan
-
HI Amy,
Wow this all sounds so similar to my feelings. I don't know what to say to you to make you feel better except your tumor is very small and your relatively young and healthy, you will more that likely fly through treatment and recovery.
I was diagnosed last December with a rather large tumor at age 56. I too am very active and healthy but this thing has really taken a toll on me. You have been dealing with this for allot longer that I have, it wears you down. This forum has helped me soo much because I am a need to know everything type of person. I was told my only choice was surgery and in a way I guess that is a blessing (one less decision). I have had 3 opinions so far and another one coming up this Tuesday. I will make my decision on which Dr. after this appt. and then I hope to have some relief from this nightmare, because I have done my homework and I can finally give it up.
My heart goes out to you Amy. The indecision is murder. I have very few symptoms with a large tumor, so kinda the opposite of you, I feel I may have more to deal with after the surgery and that really scares me. Thank God my children are grown. I did have major surgery (out of state a week away from home) when they were 5 & 8 and it was very difficult to leave them.
No growth for two years is hard to ignore but with all your symptoms your quality of life is already compromised. I am no expert (and I didn't stay at a Holiday Inn last night ;D) but I would get this thing taken care of and get on with my life.
Good Luck to you. Please keep us updated.
Sue in Michigan
-
Amy,
I'm with Jan.
Grace
-
Hi amye! There is alot to consider in your situation.Your still quite young with symptoms that are making your life not what you want it to be. In comparison I`m 61 with symptoms which are very bareable (used to them) and also W+W and hoping to stay that way. My choice of treatment would probably differ if I was in my 40`s. We all know this is a personal decision which does take time to make. What I can honestly say though is that with the technology we have today the most hard part of your journey is going to be the choice of your treatment. While your W+W please stay on a very healthful routine with alot of supplements out there which actually may help our condition (has helped mine). Research, Research, whatever your choice you have a great future ahead of you. Best wishes, Mickey
-
Amy...hugs...talk to you soon!
Cindy
-
Amye, Hate to say this but my own personal opinion is with having surgery. Would your symptoms now just keep hanging on as the tumor would stay there past radiation due to it's location. Hard choice for you and no guarantees with any treatment. I do know that not all surgery gives you bad long term effects. Some adjustments maybe but life can be back to ok past a surgery. Been there with 4 surgeries for having NF2. Good luck with this and we are thinking of you!
Cheryl R
-
Thanks for all your responses. Cheryl, the concern you expressed is the one and only thing that has kept me from scheduling radiation. Here's the basic problem: What is causing my symptoms? It's certainly not a growing tumor. One doctor says its probably related to blood flow/circulation due to the mere presence of the tumor (which would indicate a surgical solution), while the other suggests that inflammation is the culprit (specifically, from proteins secreted by the tumor -- radiation would eventually "kill" the tumor and thus stop the inflammatory process). Without knowing the cause, or mechanism driving the symptoms, it's hard for me to know what to do. In both cases, I'm assuming risk, but the risks with surgery seem greater to me. However, surgery *may* give me the greatest relief by cutting that nerve. It's maddening going round in these circles, and I think it's wearing me down. Last MRI (last month), I found myself actually hoping for some change that would push me in some direction! I know that's nuts, but that's the truth of how I was thinking and feeling!
-
Mickey, what supplements are you referring to? I'm on a few, but just curious...
-
Amy
I had surgery and it isnt all that bad..I'm pretty much bad to normal as the new me. I have SSD and no balance left on AN side, but the right has compensated for that long before I was even dx. I so at times walk a crooked line and am forever saying 'huh?' or 'say agan'...both treatments bare risks and both dont guarantee a perfect outcome...
JO
-
Hi, Amy ~
I realize that I'm on the caboose end of this thread but I wanted to add my opinion (that coincides with Jan's) that if this small-but-problematically-located AN is negatively impacting your life, which seems to be the case, you should try to surmount your very natural fears and reservations and address it. I suspect that surgery will give you the best outcome but that's the opinion of a non-physician and worth what you've paid for it. Yes, AN surgery can be complex and carries definite risks but so does irradiation and frankly, you if you have to do something why not do what probably has the best chance of giving you permanent relief from your symptoms? Well, this is just me spouting off but I hope you'll consider my suggestion.
Just like all of the previous posters, I want you to get better and while AN surgery may well interrupt your life for awhile and some things will change, almost everything that may occur will eventually resolve or can be medically addressed and at your relatively young age, this experience will fade to a distant memory and you'll be free of the tumor and the symptoms it's causing as well as released from the tension of worrying if it's grown. I hope you'll be able to reach a decision soon and I wish you better days ahead.
Jim
-
Amy, here is what both myself and wife have been doing going on two years now.To start a nice exercise routine with nice walks. Green tea has replaced coffee with moderation on alcohol. Good multivitimin, acidophilus, xtra ester C, xtra folic acid, lutien, glucosimine condroiten msm combo, omega 369, shark cartilidge, capiscum, ginko biloba, phasphidyl serine, Bee honey pollen + propilos, cq10, revesterol. Sounds like alot but really isn`t. Thats why I usually ask people to give me a call so I can explain more better. In any case my wife who has a tumor also has shrunk considerably while mine is stable and both feeling better. Just my story so far so good (alot of prayers included). I will be on the panel at New Jersey AN meeting Apr. 18 with my neuromonics machine. Wishing you the best, Mickey
-
Amy -
I wanted to clarify my "position". In my earlier post I basically said you should have radiation because you said yourself that your "gut" was radiation.
I'm a strong believer in the "gut" - I followed it with both my choice of doctors and choice of treatment - and I think you should follow yours.
However, having had surgery, I'm not opposed to it at all. Is it your best bet? Hard to say. It was my best bet and I had a good outcome, but only you can decide what is right for you.
Jan
-
Hi Amy,
On the bright side, you have a pretty small tumor, which tends to reduce the risks of either treatment. I would think your chance of a facial nerve issue after surgery, for instance, was pretty small. The location right next to your cochlea makes it sound like hearing preservation may be difficult, though. I am curious if Dr. Brackmann is thinking trans-lab for surgery?
The balance nerve is a tough one to figure out. Tumbleweed had a good result recovering from balance issues after CK, but that doesn't always happen. Surgery is more certain about taking out the nerve on that side, letting you readjust and restore order.
You have two of the best doctors, so you will be getting the best with either treatment. If your symptoms are an ongoing problem, you probably need to pick one of them. The tinnitus is notorious for sticking around afterward, so don't get your hopes up too high on that score. It should at least level out, though, making it easier to get used to.
No one said life would be easy, they just said it would be worth it. Best wishes as you go forward.
Steve
-
Thanks for all the responses...this is the BEST and most supportive community!
Steve, Dr. Brackmann is recommending mid fossa. He says that the location reduces my chances by a few percentage points, but he still thinks that's the best approach. However, it places my facial nerve at greater risk from what I understand (he minimizes this) and it also seems to me that those who come out of surgery SSD seem to have a pretty significant increase in their tinnitus. It's true that I also risk losing my hearing with radiation, especially because of the location issue. (I"m guessing that the location is also why my tinnitus is so loud ???).
I realize that there are lots of good surgical outcomes, and I appreciate those words of encouragement. I have such tremendous respect for those of you who have undergone treatment of either type...it takes such courage! I think if I could get a good handle on what is actually causing the symptoms that would help me choose. If it's the mere presence of the tumor, then radiation is less likely to help. But if Steve Chang's theory is right...
Donnalynn, what type of symptoms were you having prior to surgery? Did they improve?
I'm having another audiogram as well as a VNG this week (had my last one almost a year ago), and maybe this will shed some light.
Thanks again to all. You give me hope.
-
Hey Amye,
I think we spoke on the phone last fall when I was newly diagnosed and rushed into my surgery. I also had a small tumor, but I was so freaked out by having a tumor in my head that I scheduled surgery as soon as I could get it. There were a number of success stories that made me feel confident about going under the knife and all of the percentages quoted to me were greatly in my favor. That said, I did have a few unfavorable outcomes post surgery that I was not prepared for. You probably followed my story since we had spoken on the phone so you know about my hearing loss and severe tinnitus. I'm not going to lie to you, 5 months post op, it is still very hard for me to get used to this. The SSD thing can be very disorienting and the tinnitus just plain sucks. It sounds like you already have tinnitus so perhaps it wouldn't be so shocking to you after surgery. Pre-surgery I had a barely audible ring on occasion that I could here and that was it. I also had 100% hearing. I know balance is a big concern of yours and I do feel like my balance is almost back to normal. It was scary for about a month feeling the wonky head and for me, it was almost like the world around me seemed liquid and not solid. It was like a bad trip. But now, I am balancing baby stroller and crazy dog on my walks again with no problems.
I know you're scared and torn about what to do. I don't blame you one bit. I often wish I could go back and do something different hoping for a better outcome, but it could have also been much worse. For the small tumors, especially at House, facial problems should be temporary. Mine lasted about 4-6 weeks. I still don't produce emotional tears in my AN eye, but otherwise, everyone thinks I look the same.
Please don't hesitate to PM me or call me again if you want. I know how hard this is and I'll be thinking about you and following your progress.
Good luck and know that whatever happens, you're going to get through it! As a fellow mommy with a little one, it's so scary, but they also keep you strong as they give you so much to fight for.
Big hugs,
Amy in Pasadena
-
Amye,
I am so happy to have found this post.
I am 31 years old. I was diagnosed with AN in September 2009. My tumor is also 4mm and has not grown in size after 2 MRIs within the past 6 months. Like you, I have a 4-year-old son to take care of. I worked as a nurse until October 2009 when I had to go on temporary disability because of my chronic dizziness and head pressure/fullness. I have not been back to work since. Honestly, I do not know what to do right now job-wise. I feel unsafe to take care of my patients given my balance problems; although, I only have the "rocking boat" sensation and not the "spinning room" vertigo. I can no longer tolerate long periods of driving. Do you have that problem, too? My head feels so heavy all the time. I also get these tingling sensations on my upper- and lower extremities, occasional twitchings on my face, easy fatigability, etc. Sometimes I get one-sided, throbbing headaches. Yes, very symptomatic for someone with such a small tumor. These symptoms have greatly interfered with my life. I totally understand what you are going through.
My neurotologist (Dr. Choe) suggested surgery. The neurosurgeons I consulted (Drs. Murali and Chen) said my tumor is too small and too risky to remove via surgery/radiation. Doctor Murali even said that my symptoms may not be related to my schwannoma.
Well, I need to go see Dr. Choe again soon to figure out what to do next. Meanwhile, I try to make the best of what I have. There are so many things I want to get done but my wonky head gets in the way most of the time.
I look forward to hearing from you again. Take care.
Sharon
-
Hi Amye,
I am sorry your tumour is acting up. My symptoms actually got worse too. My tumour however, is bigger than yours. Both oncologists and surgeon could not guanrantee whether or not symptoms would improve or get worse after treatment. So they suggested, if it does not grow why touch it? I was also diagnosed in March 09, over one year now. I can't believe it. My Neurosurgeon actually said with these tumours it is the luck of the draw. I think that you have to go with your gut feeling. Initially I was considering surgery just to get this thing out, but after I heard the oncologists discuss the radiation procedure, I am opting for it. It's a very difficult decision but once you have thoroughly assessed both procedures in your mind, I think that you will make the right one. If you are wondering whether or not you should have any treatment at all I would suggest you get second opinions from both surgeons and radiation specialists. Removing or frying it does not necessarily mean the symtoms will go away. It's a lifestyle change to live with these things once you begin to have symptoms. A simple thing like running up the stairs has become an issue for me. I have to walk slowly and hold on to the rail. In a split second I can feel everything spinning. Does that mean that after radiation, I won't feel like that? Who know? It's a chance I am going to have to take. In my case, becasue the tumour is approx. 2.0 cm, treatment is inevitable and sooner than later. My next MRI is in May 2010? I question the same thing as you. If it did not grow, do I leave it? If it grows even 1/2 a cm, I am going for it. Too psychologically painful to keep on watching. Good Luck!
-
Amye,
I forgot to mention that my symptoms have worsened since diagnosis. I have a slight hearing loss on my AN side (left), tinnitus, and occasional nausea besides the ones I mentioned in my previous post.
By the way, there is a YouTube video of this man who underwent surgery for his 1cm AN. You might want to check it out.
Have a good day.
-
Hi ladies! Having a daughter your ages and a young mom, I`m rooting for you all to have a favorable outcome in time. With my AN(12x06) and having some similar symptoms over time I steped into action. While changing my diet to the most healthy foods I could find (alot of blueberrys, stawberrys, spinach, fuits and veggies, good protien) along with all the supplements + exercise listed in my previous post in this section. I + my wife have seemed to find over a period of time a big improvement as I stated. Just wanted to put this out there again to whatever your condition is and whatever your coices will be with hope of helping your condition. Please consider this alternative in the meantime. In Can`t hurt! Prayers are with you, Mickey
-
I too am confused, but I suppose that is expected after first being diagnosed. I am a young mother also, to an amazing 4 year old, on top of that I am a single mother. Her Dad left us a year and a half ago. I have sole custody of her but every now and then he will call or text message me threatening to take me back to court. He has visitation in our divorce decree but he hasn't seen her at all. I think he likes to threaten me to either get money or make me squirm. My biggest fear is this tumor becoming so disabling of me and him remotely having a chance at getting her. I doubt that it ever would happen but I am scared of even the chance. My tumor is small, 3.2mm x 3.8mm, but I am having perceptions issure and vertigo symptoms. Ideally I would like to get this thing out and never have to worry about it again. I have read some stories where people have done radiation, then 5 years left opt for surgery. It is a lot to take in, and not an easy choice especially when it effects so many people. I do have an amazing support system, my family and an amazing man in my life.
-
Jenn -
I, too, am a divorced parent with sole physical/legal custody of my kids.
Don't worry about becoming too "disabled" from your AN to keep your custody arrangement as it currently is.
Your ex may try to make an issue of it, but he doesn't have a leg to stand on.
I just sent you a PM. Hope it helps.
Jan
-
Thanks to all for the replies. Wow I'm amazed at how many of us have similar issues...makes me feel much less alone. This idea that our small tumors aren't causing our symptoms is ridiculous! I was told that at first, too, but now I believe that's nonsense. The true "experts" I've consulted have said nothing of the sort...they understand that even a small tumor can have a huge impact on this delicate area of the body. I recently met someone with a 2mm tumor who is having the same issues!
For those of you newly diagnosed and struggling with dizziness, I can't say enough about how much vestibular therapy has helped keep me going. It doesn't fix things, but it sure helps in the mean time. Sharon and Jenn, if you want to PM me I will be happy to share more information and details. We are on the same road (babies to care for, fighting the dizziness and perceptual problems) so maybe we can share information and support one another through this. The impact of this on my ability to be the mother I long to be has been the MOST painful part for me.
Amy, I have certainly followed your long and arduous journey and greatly value your input. Hugs back to you...
Mickey, your point is well received. I have been a vegetarian for years, eat low on the food chain, live a very clean life, get lots of exercise (more challenging now to do!). I have added some supplements and vitamins but otherwise I'm not sure what to do.
So here's the latest in my crazy journey. I went today for a VNG (balance test) and augiogram (hearing test). Hearing is the same (very good still), but my balance loss has gone from 50% l(10 months ago) to only 15% now. I am SO confused. I thought the nerve was dying, and was actually hoping to see a steady decline -- which would indicate that either surgery or radiation might not be so hard for me to recover from. Obviously, I don't understand as much about all this as I thought. So back into limbo for me...anyone who can offer an explanation please help!
-
I just spoke to Dr Fayad at HEI, apparently 99% of the time the tumor is located on the balance nerve, where as mine is located on my hearing nerve, if I elected surgery I would lose my hearing completely. I go see the local doctor here next week and Dr. Fayad advised I should get a hearing test, VNG, and ABR. He also asked that I send the results back to him. He believes the tumor is also effecting the balance nerve which would explain my "episodes" I feel really good about talking to Dr. Fayad, he explained things over the phone clearly and was very nice.
Amye,
Have you done the ABR test, I am curious to know what your results were? Also with all the tests you did, did you get the results back immediately and how long did the tests take?
-
It's difficult for an AN not to affect the hearing nerve as well as the facial nerve as well as the balance nerve. They are all in the IAC - and it's hard to avoid them during surgery.
Balance nerves aren't too big a deal - in the scope of things; your body will learn to adapt. The hearing nerve is very delicate and once it's destroyed, it's destroyed - ask your doc about options like the BAHA or the TransEar. The facial nerve is actually pretty resilient and can regenerate itself. It takes time, but it is possible.
Jan
-
Jenn;
I had an ABR a few months ago and it was normal. I did receive immediate feedback about my other tests (both times). The audiogram is pretty quick but the others take a little time (about an hour?).
Hope this helps,
Amy
-
Hi ayme! Nice to see the improvement. Nice to see your healthy lifestyle. Please incorporate those other supplements into the mix which you may not have in there like bee honey propolis + pollen, along with 800 mcg b6, shark cartilige, phasphatidyl serine, ginko, capsicum, omega, plenty of blueberrys strawberrys spinach. To me these are the most valuable + whatever else your taking (multiple vitimin and minerals for woman etc.). Hey, it looks like you may have time to go with this while doing your research on whatever your decision, especially with your condition improving. Wishing you the best, Mickey