ANA Discussion Forum
General Category => AN Issues => Topic started by: tgillesp on September 17, 2010, 07:25:56 pm
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I finally received a call back today from Dr. Chang's nurse, Elizabeth. She said Dr. Chang and another doctor viewed my films and found no tumor! Actually, she left a voicemail and I just had to call her back to see if I heard right. She was so nice and took the time to explain to me everything that transpired. She said first she looked at my films and could not find my tumor. Then she told Dr. Chang and he made fun of her, then he looked, then the other dr. (can't remember his name) looked and none could find a tumor. They even read back over the radiologist report again to see if they overlooked something, viewed the scans again and still saw nothing. She said that the spot the radiologist found could be any number of things but no tumor. He recommended I get another MRI in a year to be sure. I am so shocked. First, that I have been put through this nightmare for over 3 weeks for nothing. I have stressed, cried, lost weight...you name it. And second, that something good has actually gone my way. Just to be absolutely sure, I am still going to mail my MRI to House and see if they say the same. Not that I don't value the opinion of Dr. Chang, but I want to be absolutely sure. My birthday is Sunday and now I can actually look forward to celebrating.
I just want to say that I will never forget those on this forum who have been so supportive and helpful, especially those who responded endlessly to my questions (Cheryl, Jim, Jan, Clarice, Lori, Tumbleweed, Phyl). Somehow, I feel bad that I will no longer belong to this community of such loving and caring people. But I will still be here reading, caring, and listening to your stories. I wish so much that I could give something back and I wish and pray for positive outcomes for all of you. I may not have an AN after all, but I most certainly believe that I can understand what you are all going through as these last 3 weeks have been my worst nightmare.
Again, you all have my most heartfelt thanks...love...and best wishes. I will pray for you guys every day!
Much Love
Tracey
(P.S. and I will let you all know what House has to say)
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That is AWESOME news - so happy for you! :o
K ;D
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It is very awesome! I hope all future MRIs are clear,
-Tod
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Yeeeeee-HAAAWWWW!!!!!
Capt Deb(http://i235.photobucket.com/albums/ee60/Captdeb_photos/dog_rover_dancing_saturday_night_fe.gif)
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Well as we used to say when I was younger, Holy Smokes!!
This is incredibly wonderful news ;D Great birthday present.
I agree with your idea of sending your films to House - and it's not because I doubt Dr. Chang either. You just definitely want to make sure there is no tumor.
You are welcome here at the Forum any time - you don't have to have an AN to join us.
Jan
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Tracey .....
WOW, what terrific news to hear! As Jan said, you are welcome to stick around and join in with us any time. Actually ...... since Dr. Chang recommended another MRI in a year, you can at least stay with us until you get that next clear MRI.
Be sure to let us know what House has to say about your MRI. Also, let us know what they think is causing your symptoms.
Best thoughts. Clarice
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Thank you all, and anyone else I did not mention before. I do plan to stick around because, although I won't really have any advice to offer anyone, I care about and want to know how all of your stories turn out. And I will let you all know what House says. I actually have a followup with ENT on Tuesday and can't wait to tell him what Dr. Chang said, and plan to ask him for a referral to a neurotologist anyway because I do want to continue to try and find out what is causing my hearing loss and tinniitus. But I will be sure to keep in touch.
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Well, I've been trying for over an hour to get my profile pic on here so you would all know who you've been talking to and I feel like an idiot because obviously everyone else can get it done and I can't. I did a search for profile pic and followed all the many different instructions I found. I created a photobucket account, uploaded a pic, then clicked on the html link, opened my profile, right clicked where it says "I have my own photo" pasted, and then saved. All I see is a box with a small image...but not my pic.
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your close ... there is a lot of html stuff in the avatar.... you need only this:
http://i853.photobucket.com/albums/ab100/tgillesp1/Me-1-1.jpg
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What great news. I have a similar first hand experience, but went through a lot FIRST. I DID have a tumor in the 3rd ventricle (not an AN) and had a craniotomy in 1991. For many reasons, they were unable to get the tumor after 9 hours of surgery. I had MRIs yearly to make sure it had not moved or grown. Two years ago, I got a call saying the tumor was gone. I thought they read the films wrong and called my neurosurgeon. He said that he and the neuro-radiologist were in agreement and it was totally gone. The only thing he could figure was that during the surgery all those years ago, he did knick the tumor and it just may have dissipated over the years. I am having my final MRI Monday to make sure it is still gone. He had told me to wait two years and repeat the MRI. If this MRI is clean, no more MRIs and no more tumor concern. I will keep you all posted. I can certainly related to your surprise. Mine was not a second opinion, but a real change in my brain. Very unusual, but VERY GOOD NEWS.
Good luck to you and please do stay on the forum and let us know what happens.
~Dale
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Tracey,
Very cool! Dr. Chang is who treated me. I have dealt with Elizabeth quit a bit, also. Great people. Great professionals. I'm so happy for you. We all know all too well about the stress of learning about these things. You win some and you lose some. Looks like you won big on this! Happy Birthday.
Mona
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Finally, got it! Thanks Joef.
And Dale, your news is wonderful too! And you will find out soon if your tumor is gone for good! I'm hoping and praying it is. Can't wait to hear.
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Tracey ~
I'll keep this brief: congratulations on the good news! :D Thanks, too, for your kind and heartfelt words for our membership. Don't be a stranger! :)
Jim
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Good luck with your MRI, Dale. Hope the results are clean ;D
Great picture, Tracey. Nice to finally "see" you.
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Whhoooohooooo for Tracey! ;D That puts a big smile on my face! Well, half of it anyway! ;)
You can always be an "Honorary AN-er" - all of the benefits with no bad haircuts, droopy face or hearing loss!
Hope this is the best birthday ever!
Lori
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Thanks all. I will be sticking around, probably just lurking, the way I started before I started asking questions. I want to keep up with everyone's stories & successes. I did want to ask though...I am still planning to send my films to House. I feel with one dr saying I have an AN and another saying I don't, a third opinion wouldn't hurt. Even though I believe I'd trust Dr. Chang more than my doctor, I'd just rather have 2 in agreement. Can anyone tell me where or who to send to at House? Do I just get the address from the website and send it or should it be addressed to any doctor in particular? Should I call first and ask if I can send it?
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http://www.houseearclinic.com/pro_acousticneuroma.htm
See one of the light gray boxes near the top righthand corner of the screen.
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I so wish I was YOU right now. haha. :)
I would pay out of my own pocket if I had too and get another MRI. With contrast. Not sure if its true. But my ENT said that a MRA will show a tumor really well.
About $700 average here in Fort Worth and found a place with a 10 year old MRI machine for $400. But I rather have a newer MRI machine.
There is also the so called 3Tesla MRI's with better resolution that hospitals use. Was quoted $2300 here in Fort Worth. And I had to have a special need to get it.
If one Doctor says you have a AN and another says you don't. Get a newer better MRI if you can. Don't back down. Get a new scan. So you can compare the two. Also those computer CDs suck compared to the film.
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My MRIs were $4000 each - the insurance company paid less than that, but the hospital people told me if a person has no insurance - that's what they pay. I wonder why so high here in Indiana?
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My MRIs were $4000 each - the insurance company paid less than that, but the hospital people told me if a person has no insurance - that's what they pay. I wonder why so high here in Indiana?
Isn't that state over regulated? Try getting out the phone book and look up MRI. Then go down that list and call em all and ask them. Ask them price for insurance and cash carry.
I just got out the phone book counted 18 companies in Fort Worth alone. That's not including hospitals.
The company I ended up with charged $745 and is not even in the phone book. Because my general doctor wanted me to go their and then they had a 4 year old machine. I gave my general doctor a hard time after wards and got my blood work bill reduced.
(http://webpages.charter.net/sunnydream/MRI_Companies.jpg)
Sorry about highjacking your thread.
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My annual MRI w/gadolinium is typically $4,500 to $5,000
Of course when the insurance company discounts it they pay a lot less - somewhere in the neighborhood of $2,800 I think.
My MRIs are done with fat suppression - since I have fat in my head from the AN surgery - and the machine is very new.
While saving money is great, make sure that you get a good, quality MRI with the best machine you can find. If you don't, your doc may request that you get a new one and in the end you'll be paying even more.
Jan
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Here is what my MRI report says:
Technique: Multiplanar, multi-sequence pre and post contrast images were obtained through the IAC's.
LEFT: At the level of the opening of the IAC, there is a 5mm oblong focus of signal abnormality which is hypointense on TI weighted images and lies between the facial nerve and vestibulocochlear nerve. Post contrast images demonstrate mild enhancement of the small focus of soft tissue suggesting a small or early acoustic schwannoma. Adjacent to this focus of signal abnormality runs a tortuous left anteroinferior cerebellar artery. My ENT read the report, looked at me and said, "looks like you have a tumor" and then proceeded to tell me how he would recommend surgery over any other option.
I was never shown my MRI by the dr. I came home looked up MRI films online and searched pics that showed tumors. Then I went to radiology and obtained copies of my MRI myself and compared. This one of my images I compared and thought this might be the one showing the tumor (hope this link works)
http://i853.photobucket.com/albums/ab100/tgillesp1/MRI.jpg
Of course I don't really know what I'm looking for, and I know most of you won't either. So my biggest question is if that blob is not a tumor then what is it? And now that I have Dr. Chang saying I have no mass, I'm back to square one on what is causing my hearing loss and tinnitus. So anyway, I have a followup with my ENT on Tuesday and I am going to ask him to refer me to a neurotologist because I have so many unanswered questions. My hearing aides (Siemans OTC) are not doing as well as I need them. My biggest problem is speech recognition. I can hear noise (especially background), so teaching in a classroom environment is killing me. The hearing aides amplify all the noise to a headache level everyday and make tinnitus worse, and I'm still having to ask students to repeat themselves over and over. I didn't want an AN, but at least I felt I finally had a cause. So I do still hope Dr. Chang is correct, and I will find out soon from House. However, I would still like to address my hearing situation and try to get help for that. If I can't find some help, then I just can't see myself continuing as a teacher in a noisy classroom for much longer.
Jan, I've joined Cochlear community and have been reading, but I don't see where any of the implants would be helpful to me yet since I'm not SSD. Do you know if there are any other solutions to improving my hearing situation or anything I should ask the neurotologist about?
Thanks
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I think your totally on the right track. Keep at it. Till your satisfied.
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Thanks. I see your surgery is in just 3 days! I'll be saying prayers for you and I wish you all the best for a good outcome and speedy recovery. I know you will be glad when it is out! Can't wait to hear back from you after.
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Tracey -
you don't have to be SSD for a BAHA. But whether or not you'd be eligible for one depends on the level of hearing in your "bad" ear. Docs evaluate potential candidates on a case by case basis. You would have to ask your neurotologist - if he implants BAHAs or is familiar with them - if one would work for you.
If your doc doesn't know enough about BAHAs to answer your questions, you'll find docs in your area who implant BAHAs on www.cochlearamericas.com under "Find a Clinic".
BAHAs are different from conventional hearing aids in the fact that they don't just amplify sound, they work through bone conduction.
Your other option might be a TransEar, but I'm fairly sure you'd have to be SSD.
If you have an audiologist, you might want to ask him/her your options.
Good luck,
Jan
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Thanks! Found one! Only an hour away and they are a PPO! I'm asking my ENT for a referral at my Tuesday appt.
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Excellent! Keep us posted.
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Wow! just got my MRI bill and it was over $6000!!! Of course, they will have to wait to see what insurance allows before they get a dime from me.
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Wow! just got my MRI bill and it was over $6000!!! Of course, they will have to wait to see what insurance allows before they get a dime from me.
I wish I knew weather that is a T1.5 or a T3 machine and if its made by Siemens. Can you post or PM me that companies info. (You don't have too and I would understand) I would like to call them? Because I ran the numbers on one of those companies and I'm thinking of starting one up.
When I saw the cost here in Texas and factored in the office and staff. Seamed the profit margin was about right to me.
But looking at the numbers y'all are posting. Looks like the insurance companies in other states are getting hosed for some reason.
http://www.ehow.com/about_4731161_much-do-mri-machines-cost.html
At $6k and at least 1 a day. That's around 1.5mil per year. Office, staff, and insurance at around $300k tops. That's a huge profit.
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Hi Tracy,
I am not a Doc. But I probably know enough to tell you that the white blob is not an AN.
Its in totally the wrong position and it has shown up way too bright. It looks like an artery (with lots of Gadolinium pumping through it, which is why it is so bright)
There are lots of things that can look bad in your head that aren't.
Got any more pics for us to look at?
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Well, I've got a whole cd, but I can't see anything noticeable at all on any of the other views and I wouldn't know which ones to post. I could upload to photobucket and give you the link if you wanted to look through them. Funny thing is, I had another follow up with my ENT today and told him what Dr. Chang said. He asked who Dr. Chang was, says he hasn't heard of him. When I told him he does Cyberknife, he shook his head and said no...no gamma knife/cyberknife nothing like that. I tried explaining what I have learned about Gamma vs Cyber vs surgery and my goal of preserving hearing, etc, but he wouldn't listen to any of it and proceeded with "If it were my wife...I'd want it out...so I'm telling ya you need to get this thing taken out" So he is still talking as if his opinion is I definitely have a tumor. He says 5mm is so small that some may not be able to see it on an MRI. He says Dr. Glasscock at Vandy would do his own MRI which would be much better than mine (how can you get much better than $6000 MRI?). I mentioned I was sending my films to House and he does know who they are and does recommend I go there if not Vanderbuilt. So my impression as I left him was he still believes I have a tumor and he is pro surgery all the way. Well, I will see what House says and I have an appt with a neurotologist in Mobile, AL on the 28th. I suppose by then I will have definite answers. In the meantime though, I'm keeping the positive attitude that I don't.
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Tracy .....
Sounds like you are right on top of things ...... way to go! I know how nerve-wracking it must be to have such conflicting information, but trust me, it will all eventually be sorted out, make sense, and then you will know what is true and can then make an intelligent decision. Once you have all of the facts, do not let anyone sway you to one particular treatment (or not). You are the one who ultimately should make that decision.
Best thoughts and let us know what HEI says.
Clarice
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Tracy,
I could be wrong, but I thought Dr. Glasscock at Vandy was retired. There are still awesome doctors there, but I don't think he's still there. Not that it really matters, but thought I'd mention it.
Lori
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Lori,
I remembered you telling me that and asked my ENT's nurse when she called about the referral. She said when she called Vandy and asked for Glasscock they did not say he was retired. So I checked their website and he is still listed. So I don't know.
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Wow! just got my MRI bill and it was over $6000!!! Of course, they will have to wait to see what insurance allows before they get a dime from me.
No way thats crazy, I just had mine done (OK in Singapore) for about 700 us $, they have the latest machines and you get the result instantly. A Doc. here is developing a new dual machine with Siemens see http://www.a-star.edu.sg/People/OurResearchCommunity/HonoursAccolades/ManBehindtheMachineQAwithDavidTownsend/tabid/1036/Default.aspx
Almost worth booking a flight out here have a 5 star holiday, can catch the F1 night race, have a scan and then head back with change in your pocket!
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Tracy,
Here's hoping the ENT is incorrect and that you are actually tumor free. You made such uplifting and heartwarming comments on your first thread I almost cried. You are totally correct when saying everyone here is awesome. This was truely the best place I could ever find when I found out about my AN. I am now 5 months post surgery and doing good. Still have my bad days but I'm a survior.
Keep us posted as to what all transpires with House and the other docs.
Good luck.
Susan
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Hi Tracy,
I have sent you a personal message with a link where you can upload your CD if you want to.
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Got my call from House today. Spoke with Dr. William Luxford. He also says he doesn't see what would typically look like a tumor. He said that what he does see, he also sees on the right side too, which does suggest something is going on on both sides, but he says a tumor should show up a bit lighter. He says it may be just some inflammation. He asked about my hearing and what tests I had. I told him I had hearing loss in left ear many years ago, but got by on right ear, and I don't feel that left has gotten worse. What led me to see ENT was hearing loss in right ear in June 2009 and of course, now with 2 ears losing hearing, I knew I needed help. Only problem is I can never get my ENT to explain my hearing loss to me, so I can't really say. (I'm calling tomorrow). All he will tell me is I have 87% speech recognition "with" hearing aide in right ear and 82% "with" hearing aide in left ear. That doesn't answer my question. He also asked about my ABR test which was inconclusive and my VNG test which left ear passed and right ear failed. So again, he said there is either inflammation or possibly (very small) AN on both sides (but not to jump to any conclusions and run out and get anything done). His recommendation was have another MRI in 6 months and see if there is any change. So, at least I am glad I can relax and be at peace for at least 6 months.
Thank you all for following my case, and I will be around, and certainly keep in touch.
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Tracy ~
I guess attenuated congratulations are in order. It seems as if you probably don't have an acoustic neuroma but, unfortunately, the diagnosis was not conclusive, which is frustrating. The hearing losses are still an issue and your ENT seems evasive, probably because he doesn't have a clear idea of the cause of the loss. Perhaps he'll be more helpful now that a tumor has been essentially eliminated as a cause. One hopes. As you noted, at least you'll have some peace of mind until next spring. That should make for a cheerier holiday season. :)
Jim
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Susan, I truly meant every word I said. I have felt more love and support from people here during this last month of agony then any of my friends or family members. I suppose it is much easier to have compassion for someone's struggles when you have been in their shoes. I feel great knowing I can wait another 6 months, but I am not comforted by the fact that I can't get a definitive ruling on this. In this last year, I have been told I have Meniere's Disease, then I don't, then an acoustic neuroma, then possibly not....I am frustrated with all the unanswered questions. And Jim, as for the evasive ENT, I have made an appt with a neurotologist next Tuesday and I hope he will be easier to talk with. If anyone is from the Mobile, AL area and knows Dr. Gracek, please let me know what you think.
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Tracy,
That must be a relief. At least you can relax for about 6 months or so now. I do hope they figure out what's causing the hearing issues though - and I hope it's something really easy to fix.
And I probably had Dr. Glasscock confused with another doctor there - I know one of them retired - just can't remember who.... oh well, what do you want - I had brain surgery, you know! ;)
Lori
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Hearing loss and you have weird blips on your MRI? I'm not sure I would like that. Wait six months to see if the blips grow? I think I would want a biopsy. I do know there are some medical trials for ANs were they would put a catheter up your neck blood vessel and squirt chemo into the AN. That's what they told me on the phone. Also when I called them they asked if I have had a biopsy. So I know it can be done.
Clinical trials doctor in NY that asked if I had a biopsy done.
http://clinicaltrialsfeeds.org/clinical-trials/show/NCT01083966
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Please note that chemo is currently non-effective on AN's as it is a "benign" growth. There is no medical proof on "biopsies" technique noted and would ask you consider the advise given with caution.
Phyl
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Previous trials with avastin have been on NF2 pts who met certain criteria and was used to help bring hearing back. This says unilateral but I would be hestitant to try it on a one sided AN. Tracy does not have a for sure AN so would esp not want this to be used when not sure exactly what is going on for her. Dr Slattery mentioned the use of Avastin at the last symposiums NF2 session and am sure will have further mention of it at next years event. Cheryl R
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I am NOT saying to use Chemo. I'm saying get a Biopsy. Just pointing out that those doctors told me AN biopsy is possible.
For testing.
http://en.wikipedia.org/wiki/Biopsy
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Biopsy?
Is this practical with an AN?
Would be quite dangerous.
While the trials certainly hold some promise, it doesn't sound like a walk in the park.
As the tumour is so slow growing it is also quite resistant to drug therapy too.
Avastin works by slowing abnormal blood vessel growth.
Would seem to me you would need to be on Avastin for a very long time to have a permanant effect on the AN.
The side effects of being on Avastin for an extended period would hold a considerable risk.
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A biopsy with an AN is not practical.
Unless of course it's one done in the course of AN surgery - which is routine procedure.
Although 99.9% of ANs are benign, they still biopsy them during surgery just to make sure.
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So I saw the neurotologist today and he also says he doesn't see a tumor. He says it looks like it is just fat! He also recommends another MRI in 6 mos. However, now he says I have Vestibular Ganglionitis (which is viral). Now I guess I do some reading and find out what that is! I just want help for this tinnitus!
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Tracey -
I have no idea what vestibular ganglionitis is, but I'm glad you finally got an answer.
Wish I had some ideas on the tinnitus, but thankfully I'm one of the few who don't suffer from it.
Best,
Jan
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Tracey ~
Thanks for the update. I'm sorry you've been diagnosed with Vestibular Ganglionitis (an inner ear inflammation). Conversely, I'm pleased to learn that you don't have an acoustic neuroma, which would be more problematic to treat. I hope you can find some relief for your tinnitus.
Jim
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Tracey, viral infections account for a fair percentage of Sudden Hearing Loss. I was diagnosed by Dr. Luxford an HEI and I liked him a lot. I know you aren'e in LA, but he was a good one to talk to.
A biopsy is totally inappropriate and is not the current standard of care. I am not speaking as a patient now, but as a Certified Legal Nurse Consultant. A biopsy could lead to more problems including, but not limited to infection.
~Dale
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I finally did get an opinion from Dr. Haynes at Vanderbuilt today. He says he does see something suspicious on my MRI in the location where an AN would be. But due to the small size he cannot confirm whether it is or is not an AN at this time. So he wants to see another MRI after 6 mos which I've scheduled for Dec. Hopefully I will know something more definite by then.
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I do hope it is nothing. I know how frustrating this must be for you, but hopefully a new MRI will definitively answer a lot of questions.
I did have my MRI, and this was the second "clean/negative" MRI. YEAH!!!!! I hope the same is true for you.
~Dale