ANA Discussion Forum
General Category => AN Issues => Topic started by: MaryBKAriz on March 25, 2008, 04:09:56 pm
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Hello from a Newbie in Arizona. I just got the news yesterday from my ENT that my MRI showed the AN in my right ear. I am lost right now and I see a specialist tomorrow and don't want to be an idiot. I have read a lot in the last 12 hours but I don't have the insight of someone who has "been there". I am having a fair amount of hearing distortion, ear pressure, imbalance, dizziness and occasion . No facial symptoms, though, I am thankful to say. I appreciate finding this sight. I live in Chandler and will be seeing a physician in Phoenix who is connected with the Barrow Neurological Institute. I have never heard of this condition before. Since I knew I had a problem I am basically relieved it isn't malignant, but not happy with some of the decisiions, outcomes, procedures ahead. Thank you for listening. Mary :)
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I am sorry to hear about your AN. Can you tell us how large it is? That will help. Also, I heard Barrow is a really great facility from someone on this forum. Good luck
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Thank you for answering. I was told it is small...about 11mm. I think from what I read this may give me options. I also Have Systemic Lupus so I don't know if that will come into the mix or not. I am to see a Dr Daspit. I know I will know more tomorrow, just thought I'd see if people had and suggestions of questions or feedback. I know each case is different. I am doing well with this I think, it is more those around me that seem upset. I take care of my 87 yr old Mom and a sweet family, great neighbors. Mary
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Mary -
you'll find lots of friends here. A truly great group of people ;D
Making a treatment decision is probably one of the hardest things you'll have to do. Make sure you do your research, ask a lot of questions, and do what you think is best for you. The size of your AN should give you the possibility of radiation or surgery, so ask the specialist about each treatment.
Feel free to ask us anything - either here on the forum or through PMs.
Also, this forum has a very nice "search" feature, so if there is something specific you are wondering about search for it and you'll most likely find lots of relevant posts.
Jan
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Thank you, Jan. I guess I don't know what to ask or what to look up. I have read a lot in the past 24 hours. I like this website for its full spectrum approach to addressing this. I definitely know more but am in overload, perhaps. Great to have people to share with. :)
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Hi Mary-
And welcome to our little "club." I'm only a few weeks ahead of you - got my diagnosis exactly 3 weeks ago. You're doing the right thing - seek out professional (medical) opinions, read as much as you can, talk to others on this forum who are further along in their journey.
I've been very fortunate that I was able to schedule 3 consults in about two weeks. My "Ethel" is too big for radiation, so I'm awaiting a date for translab surgery.
Just keep looking forward and be kind to yourself - you will be fine.
Debbi - in NJ
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Thank you Debbi - you are an inspiration! I will be thinking about you. I feel optimistic but also want to be realistic. I am so glad it isn't malignant! Mary
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Welcome to our AN family of friends.
You are doing a good thing to check out drs. to hear what they have in mind. But remember, it's YOUR head. My experience was- 4 different drs. in four different hospitals had four, you guessed it, different opinions for treatment. And, yes, they all looked at the same MRI films. (I visited two in Philadelphia and sent my MRI CD to House Clinic in LA as well as Stanford U. Med. Center. Both Drs. Brachmann/Chang reviewed my films free of charge, then called me the same week/day with their suggestions-surgery/cyberknife- and both spent time answering my many questions. Kudos to them both!)
I know you've heard from other folks here to do your research, check it all out with drs. you trust, then decide for yourself. You will know with whom you feel the most comfortable. Ask all your questions- I wrote them down in advance- and take someone with you- it helps to compare notes. It's amazing how you don't "hear" the same thing when it's YOUR body they're talking about. Someone you love/trust should be there, too. At least, I found it helpful.
I think the best advice I heard on this site, and it turned out to be good for me, was to take your time to decide. These things typically are S-L-O-W growing. No one should talk you into doing anything quickly.
BTW, it took me from June to October to decide. I spent lots of time reading, researching, and talking to others who've "been there, done that." When I was ready, I went with Dr. Chang in CA. and cyberknifed the d@mn thing in November.
Best wishes and keep in touch.
Terry
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Hi Mary
Welcome. It's a shame that you had to find us the way you did -- but I assure you that finding us was a great thing. I unfortunately didn't know about this group until two months into post-recovery, but it has been a Godsend since I came aboard. There is a lot of advice and wisdom to be had here. Being a bit cynical, more than you will find elsewhere. You do have a relatively small AN -- it does leave you more options. I know little about the others but I can give you whatever personal input you need on translab surgery. And I've learned a bunch of stuff on post-op things -- thanks to this group. There's even terminology from this group that you'll grow to appreciate. For instance, you don't have an acoustic neuroma you have a brainbooger -- and more than a few people name them. And don't worry about asking what may seem to be a silly question -- I know I did -- and always got a very rational answer.
Best wishes to you.
David
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Thank you gang! I feel better already about the brainbooger....hmmmm name??????? I will call it "Goldie" (for Goldie Hawn back in the Laugh-In days) That seems to fit what I have been calling myself - a dizzy dame. I have had such balance problems. Thank you for my laugh of the day and Goldie and I will trudge on. Mary
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Welcome from Texas, Mary!!
Hope that we can be supportive for you!! Like, David said, no question is stupid -- ask away! Things are bit crazy for me right now as I am having some reconstructive work done Friday, but please feel free to contact me if you ever just need an ear!!
K
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Where in TX K? I used to live in Round Rock and hubby of almost 40 yrs and I met at UT Austin.
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NO WAY! We used to live in Round Rock -- I taught school there (at Brushy Creek). That is actually where we lived when I had surgery (but I had the surgery in Houston). We had a Christian bookstore there! We live in the Panhandle now -- I am from here.
K
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Hi Mary,
You asked for friends, you definetly have them here :) Welcome, even though I am sorry you have to join us as a fellow AN'er.
I agree with alot that Terry has written, don't rush, get those free consults (those dr's are wonderful) and feel good about your decision. I am currently a wait and watcher. My AN is slightly smaller than yours but I am experiencing the same symptoms as you although I have tinnitus that won't hush ;) At times I really wish for a quiet moment but as you say I am soooooo thankful it is not malignant, I can live with the ringing....
I found this site that was given to me on this forum. the questions are really good and I use them at consults. Hope it helps.
http://anworld.com/questions/
Hang in there and we are here for you when you need us. This site has been such a blessing to me!
Hope you have a good visit with the Dr tomorrow (which is fast, I had to wait a month to see a surgeon)
Sending hugs from SC...
Glenda
PS What a wonderful name "Mary"
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Hi Mary,
Glad to hear that your AN is small. My son had a 4.5+ CM and we did not have nearly as much time as you. We had to make a decision in about 3 weeks. You have lots of time and I would take every bit of it. I know someone emailed me about Barrow. Here is the post. This was our thread when we were researching doctors.
http://anausa.org/forum/index.php?topic=3613.15
I believe the best way to guage a doc or facility is to talk to other ENT's and doctors about who they would go to if they had this happen to them. I just wrote a post about what we did before surgery and you can see our posts back when we were asking advice from the very knowlegable people on this board. The good news is you have lots of time to make a decision. I know it is hard to do this under duress. That is why it may be best to let it sink in and then research as much as possible. You might want to research Barrow under search too.
Robyn
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Thank you Robyn! I feel good about Barrows, haven't met the Dr but he is Chief of the AN department there. I also have an appointment in May with a second Dr.
I hope your son is doing okay and the surgery went well.
Mary
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Mary
I also live in the Phoenix area, Ahwatukee actually.
I just had my one year post op MRI and everything was negative ( no regrowth and no new growth).
I had about a 1cm left side removed retro sigmoid at Barrow neurological by Daspit and Spetzler January of 07.
If I had to do it all again, I would do nothing different. But of coarse every situation is unique and you have to make the best call for your situation.
Richard
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Good for you. I am sure things will be just great for you. Really, having a small AN gives you lots of options. It will be much easier for you.
Eric is doing very well. We are approching one year from diagnosis and surgery. Diagnosis was first of May. 5 days after his 18th birthday, and surgery was June 27, 2008. Will remember that day for the rest of my life. You will be fine. Hon.
Robyn
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Hi Mary,I used to live Mesa and my mom still lives in Gilbert.
Please keep in mind that reading posts can be scary,but eveybody seems to have different turnouts,chances are your days as a postie
will be on the better side of things,no matter the outcome you have found a great place/people in this forum,USE IT.
Keep up the great attitude it will come in quite handy,no need to worry about things,it's out of your hands.
I have a feeling that your outcome is going to be on the positive side of things. please keep us updated,sending prayers and best wishes from Dallas.
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Hi Mary,
I think you've gotten some really great advice here -- take your time, speak to as many doctors as it takes until you feel completely confident in your decision. I had CK for a much larger AN (about 2.6 cm) in August '07. I am more than happy to share my experience with you any time. But for now I will tell you -- you are going to be fine!
Please email any time.
Best wishes,
Francesco
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Hi Mary, and welcome. You'll find a lot of great comfort and info on this site. My situation was similar to yours, first started noticing hearing loss right side, tinnirus increasing, and finally the balance problems. My size was 13mm. Symptoms started in early 2007 and took until November to finally a correct diagnosis from an MRI with contrast. By that time, my hearing that was left wasn't really usable, but my balance is what made me have the surgery last December. I had gotten to the point where I couldn't work or drive. I had trans-lab since the remaining hearing wasn't usable, I wanted the thing out, and I wanted the least risk of facial problems afterward (never had any facial symtoms pre-op). My surgery went well, some facial weakness (just from the minimal stretching of the nerve during the removal) immediately after the surgery that was mostly gone 6 months after the surgery.
The tinnitus remains, but you can learn to tune most of it out just by getting your mind on something else. Single sided deafness hasn't been too bad; I got a hearing aid for my left ear (it has partial hearing loss from a car accident about 3 years ago) and added the bi-cros system (basically wear a hearing aid on the right side, too, but it's basically just a microphone that transmits over to a receiver attached to the left ear's aid. I've discovered all sorts of gizmos that you can get that transmit directly to the t-coil in the hearing aid (my home tv, telephone, ipod, laptop). My motto is, if I'm going to be partially deaf, I'm gonna have toys!
I've had my 1 year post-op MRI and all is well so far; they still believe they got it all.
These are truly wonderful people and will help you through this. I couldn't have gotten through it without them. Their knowledge and experience is amazing whether you seek surgery, radiation, or just watch and wait.
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Hi, Mary:
Welcome to the 'club' that nobody really wants to be in. ;)
I'm on the opposite side of the country and can't suggest any doctors or facilities in your area but as you see, this site has a very diverse membership in terms of geographic location so you'll see plenty of other Arizonians posting.
Your AN, for all the trouble it causes, is relatively tiny - which is the good news. You have options. I won't bother listing them all as you'll be learning all about them in the weeks to come, especially if you continue your own research. While you don't need to rush into a decision - and I hope you don't - you'll want to settle this in your mind as to what doctor and treatment option you'll choose. That, alone, tends to give you a feeling of control and some peace of mind. Once you come to a treatment decision, the gang here can offer their stories, suggestions and advice based on your specific treatment option. I had surgery ('retrosigmoid approach') then radiation (FSR). This was done mostly to spare nerves which are sometimes damaged when surgeons attempt to peel off the sticky AN material from delicate and vulnerable facial/cranial nerves. It was highly successful, in my case.
Whatever you decide, Mary, you'll always find friends here and a level of empathy you won't usually find elsewhere. We've' been there'. I look forward to seeing your posts and wish you much success as you begin your 'AN journey'. Feel free to call on us if you need us. :)
Jim
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Wow Jim, (and WOW ANA ) :D
Thank you for the encouraging email. I have since learned my options 1. wait, 2. surgery 3. Cyber knife 4. Gamma knife the team from Barrow met today about my case and concurred with Dr. Daspit's list. Since I just learned about this Monday, I am taking my time, but I hadn't thought about the 2 prong approach, wait AND choose what treatment I plan if and when I do it. I can see that could give a level of peace to the wait option. That has sounded NOT good to me, I am not that personality but I do see why I may want to seriously consider this option. Of the other 3 options I have no idea about which way I would choose right now.
My husband & I are getting away in the RV for 4 days over our 40th engagement anniversary which will be a great respite from a hard week. I have 2 non-family BEST friends here, one has seriously metestisized melanoma that went into the brain and she had the Gamma knife here. Another best friend has asses in her head and neck and will have a biopsy soon. I feel lucky not to have a malignancy but I am worried sick about my friends. I will persevere through my challenges and I know the ANA sight has made this so much easier. I keep thinking I should cry, but I just simply haven't felt like it. I really feel some of the worst times in my life I figured out why I endured them afterwrds and wouldn't trade them in the long run. Since I am 59, I have seen my share. I just know with the support I am getting I am very blessed.
Thank you EVERYONE who has given support!!!!!! So many have given so many great insights. I hope when I have gotten further down the path I can pass it forward as well as all have done here.
Happy weekend.
Mary
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Another best friend has asses in her head and neck and will have a biopsy soon.
Hi Mary,
You go have a great time and forget about this as much as you can. Believe me you have to have breaks from this. Happy 40th.
The other thing is, your friend has asses in her head? was it masses? Forgive me I sort of laughed at that. I really love typos I do them all the time. I was picturing asses in a head.
I am very sorry about your other friend.
I hope you have a great time this weekend.
Peace.
Robyn
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Hi, My name is Linda. I was diagnosed with an acoustic neuroma nearly 3 yr. ago when I suddenly felt a fullness and discovered a total lack of hearing in my right ear. To make a long story short, the tumor was watched for 8 mth., at which point I was told it was growing and needed to be removed. I did my research and discovered I was a candidate for Gamma Knife. I had it done last August and went for my follow up MRI two weeks ago. The tumor has a hole through the center, which means in all likelyhood it bwill eventually collapse and shrink. I have yet to talk to or meet anyone who has this type of tumor and want to share my story.
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Hi Linda,
It is good to hear that the GK was successful. I am going through so many thoughts as I know you were. Are you glad you waited those 8 months? Did you have the option of CK? If so why did you chose GK if you don't mind me asking.
Best of health to you!
Mary
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Hi Mary, I am in Arizona as well, Phoenix to be exact. I was just diagnosed last week. I am so scared and overwhelmed. I am 31 and I feel like my life is on hold right now. My doctor is supposed to be referring me to a neurosurgeon this week. Mine is small less than 1mm, so I do know that have options.
Let's stay in touch and compare notes!
Thanks to everyone who posts on these boards, the comfort they bring is amazing.
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Hello,
I am married to a man recently diagnosed with an AC. 2.7 I believe is the size. Saw Dr at Mass Eye & Ear who believes watch & wait is best due to AN location. My husband has also suffered a stroke and is left with partial blindness and 2 blood clots in his head for which he is closley monitored on Coumadin. My concern is of bleeds. What are bleeds? What bleeds? and would coumadin enhance those bleeds. I am very frightened and my husband doesnt care to talk about these things (probably because he knows how much I worry about him) Can anyone help me with my concerns?
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Mary,
In point
• The vast majority of AN tumors are benign.
• The vast majority of AN tumors are slow growing.
• Treatment of an AN tumor requires a skilled and reputable surgical team (even for radiation) with MUCH experience.
Remember
• Chances are you do NOT have cancer.
• You DO have time to do research.
• Your tumor is small so you have MANY options available to you.
• You want only an excellent surgeon with a good track record- and this may or may not require you to go out-of-state. Once you have narrowed your surgical “team� choices down - do a thorough background check on each surgeon. (If you choose microsurgery this would be a “neurotologist and neurosurgeon� team.) All malpractice reports will appear here. www.healthgrades.com.
If you do choose to go out-of-state you need to ask the surgical team what sort of post treatment support they will offer (i.e. “do they have “experienced� colleagues, geographically close to you, that can assist you if you have any follow-up complications back home?�)
Every AN case is very unique and different. Ironically some people with massively large tumors can show no symptoms and people with tiny tumors can have all sort of symptoms with balance, hearing loss etc. Each tumor is unique in its location, size, and age and existing health state of the patient. Many people who have had success with their treatment move forward and leave their AN stories behind- others find much support here. Do not read everything on this site and think that the symptoms some describe- you too will have – post treatment… However be aware that there are residual effects with various treatments that some patient experience…
You DO have time to research, make informed choices and to prepare yourself. I advise working now on building on a good support system, at home, that can care for you and offer support- after treatment. Try to do all the right things to have yourself fit and healthy prior to your treatment as this will increase you chances of successful recovery if you have good exercise, dietary and lifestyle habits- ahead of time.
Do not let any surgeon pressure you into making a quick decision. You do have time to learn more and to make good choices without pressure. Your tumor is considered small and you have found this excellent discussion forum and resources website early on.
I interviewed 9 surgeons- all had a different take in my case as to what I should do. I chose the one who appeared to have the most objective perspective, experience and understanding of all treatment options and had an excellent record (with no malpractice suits.) This involved time, research, travel and …yes spending some money during the decision making process.
Keep moving forward.
4
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Hello. I am sorry to hear of your husband having to find the AN along with his stroke history. Srokes are caused by either a blood clot obstructing a blood vessel or a broken blood vessel which can then be considered a bleed. I am assuming he is on the Coumadin to keep more clots from forming. People are also put on Coumadin if they have a heart condition called atrial fibrillation which can send clots from the heart to the brain. Coumadin doses has to be watched so it does not cause the blood to be too thin. There is an optimal range where it is the most therapeutic. As long he is being monitored, I do not think he is at great risk for a bleed. Is this what he has been told? He would not have even been started on the blood thinner if he showed bleeding. A CT scan shows this. Any treatment for the AN would require him to be off the Coumadin for a period of time prior to treatment.
I don't know if this fully answered your question as you may need to ask a dr for more details about his exact situitation.
Good luck to you both, Cheryl R
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well Mary , i was diagnosed in June last year with a small , nickel sized, AN on the rt side. I had completely lost my hearing on the rt side because of tinnitis. so they did the MRI and found the tumor. My surgery was on Dec. 3rd 07.
heres the way it worked for me. im in Houston Tx so we have great Dr.s available here.
The surgery took 5 hours or so. ICU for 2 days, in hospital for only 2 more. The tumors of this type are usually benign and "fibrous" . Kinda like a wart on the inside.
B4 surgery they warned me that there was a 60 to 80% chance of some face "sagging" or "drooping" . and it did. this is because the 8th and 7th nerves sit on each other. One is the acoustic nerve the other is to your face nerve. they had to really scrape my tumor off the nerves. They didn't sever or cut either but they got roughed up so to speak.
i am coming up on 4 months April 3rd and my rt side still droops about 1/2 inch or so. my rt eyelid cant shut. which is really no big deal as i can put a patch over it to sleep. and i use eye drops too.
i have no muscle tone in rt side of face. we have proven nerves and muscles still work with electro therapy. so its just a matter of time, 4 to 6 more months, so my face nerve can reestablish itself and i can get some facial tone back.
but for all purposes i look like a stroke victim with the right side of my face. cant speak or eat much on the rt side either.
dont mean to scare you Mary, but these are MINOR inconveniences compared to the tumor in the head and having it removed, confirmed benign.
hang in there
Steve W Houston Tx
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Steve~
Hi! I am also from Texas and am in the Houston area a LOT as my husband's family lives there. I actually had my surgery there too. I would LOVE to talk to you...I'm a bit out of wack right now as I am in Baltimore. I just had the T3 surgery to try to get my smile back -- I've been paralyzed for 12 years. Anyway, contact me if you would like...
K
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Hey Mary -
Another Texan here in Taylor, close to Round Rock. My husband, Larry, has a 4.5-cm x 3-cm. He had Gamma Knife therapy and they could only treat half the tumor as it was so large. He then had surgery by Dr. Chang and Dr. Alp at Hermann Memorial in Houston (Two really great doctors.) Dr. Alp is now at John Hopkins in Baltimore. My best advice, too, is to ask questions. No such thing as a dumb question. Get plenty of opinions. I probably asked more questions than my husband did. We found this site as a great way to find out some of our answers. First thing you learn, treatment depends on the size and location of the tumor. We check in here ever so often. Will be happy to help answer questions. My husband was up and walking the hallways with the physical therapists the day after surgery. I was just so amazed. He had surgery on Monday and was home on Saturday. Once his hair grew out, you can't even see the scar. We are blessed and now only have to have open MRI scan once a year with trips back to Houston. Let us know how you are doing. LindaS
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Hi Linda,
Howdy there in Taylor, go Ducks!!!! I have 2 kids that graduated from Round Rock High School...one in 90, one in 95. My son is divorced but his ex and his 2 kids live in Granger.
I hope your husband is doing well. I see Dr. Changs name a lot on this site...or are there 2? Seems like he was in great hands.
I am still in digesting-this-all state. I am thankful I have 4 options but right now it can be overwhelming so I take breaks from it. I had my first appointment with Dr. Daspit at Barrows Neurological Institute in Phoenix on March 26 next one I have is with Dr. Fucci in Mesa....does anyone know about him??? I don't think he is affiliated with BNI. That is a downside for him because BNI is a huge draw, plus I liked Dr. Daspit. He has tons of esperience with ANs. I get a balance test next week and I am now researching and reading a lot of things on the site as well as reading all the material I sent for from ANA.
Thank you so much for sending me the sweet message, it does my heart good. How that helps. Your husband is an inspiration! What an ordeal for your folks! Keep in touch when you can and let me know how you are doing.
Take care,
Mary
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Hi Mary,
My name is Cheryl saying hi from England, Your in good hands on this site, i felt so lost and confussed when I was diagnosed with my 3cm tumor, it scared the hell out of me, but this site was my saviour, so many friends all lending a listening ear or is that, a reading eye??? tones of advise and moral support, as long as you have this site you will never be alone at this difficult time.
you will go through so many emotions its like a huge roller coaster, but the downs, dips and turns do get smoother.
Everyone is right when they say keep a sense of humor, that may seem hard right now but it helps and after all, laughter is the best medicine.
don't forget, everyone on here is going through or has been through the same thing, and its good to share your experinace's and anxsity's.
Keep us informed of your progress and if you ever feel the need to let it all out this is the place to do it.
Take care and best wishes, Cheryl XxX :-*
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Hello Cheryl in England!!!!!!!!
May I come and visit over tea??? In an hour???? ;D
I was in England for 2 weeks in 1996 and fell in LOVE with your country....wow. One of the main reasons were the superb people. You just verbalized all my emotiions!!! What a ride. We are blessed, and this sounds weird, with having numerous difficult times in our lives. By blessed, we have learned that we not only survived, but learned and grew. We learned to find humor (sometimes pretty sick) in the strangest places and one of my favorite things is I learned, really learned, to appreciate little things. First on the list, don't laugh, is to really appreciate the times that no significant problems are happening. WE can also gauge problems because problems aren't what happened to the lid of the toothpaste, or there is dust on the dining room table. Then when good things happen it is terrific and when great things happen it is off the chart good. Too many people don't get that gift in life. I am sad about this, of course, but this is survivable so I will learn and grow and appreciate humor and the small things even more.
Thank you for being there. I feel like I received a big hug from England!
Mary
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Hi Robyn!
I just have to laugh about the comment you made about my typo....hilarious!!!! I hope NO one gets asses anywhere in there body. They would be stubborn! I was unable to answer when I read it then couldn't find it until now. Just have to say thank you for my laugh of the day.
Mary
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Hi, My name is Linda. I was diagnosed with an acoustic neuroma nearly 3 yr. ago when I suddenly felt a fullness and discovered a total lack of hearing in my right ear. To make a long story short, the tumor was watched for 8 mth., at which point I was told it was growing and needed to be removed. I did my research and discovered I was a candidate for Gamma Knife. I had it done last August and went for my follow up MRI two weeks ago. The tumor has a hole through the center, which means in all likelyhood it bwill eventually collapse and shrink. I have yet to talk to or meet anyone who has this type of tumor and want to share my story.
I'm always glad to hear about a GK that went well, it sounds like your tumor is a goner. I wish mine had a hole through the center; it is just sitting there quietly doing nothing.
And welcome to the site, I hope you will share more of your story.
Steve
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You have me. I am almost 6 months out, May 8th to be exact, after a translab. with a 3.5+ sized tumor. You can ask me anything. I have went through a lot of and have residual issues I am dealing with. I am sorry you have this, try to stay positive - easier said than done, I know. There are a lot of people here with real life stories. I wish you luck!
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Hi BK, new friend, :)
Thank you so much for your kind reply! I will try to stay positive. Most of the time I do okay, just every so often it hits...is that what you experienced? Do they expect your residual issues to get better? I hope so. I hope to have CK or GK in the next couple of months at most. Did you do the procedure locally or travel?
Take care,
Mary