ANA Discussion Forum
General Category => Inquiries => Topic started by: kkweiher on January 22, 2007, 04:04:35 pm
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I found this site by accident, just as my AN was found...... I have had an MRI with contrast and there is no missing the bright circle in my head....I was totally freaked out until I found this site and read some of the postings. Thank you all for your information. With the size of my AN I have decided to wait about 6 weeks to have it removed. I've been to the ENT and have had a neurologist look at my MRI. I am set for an appointment with the neuro in February. My next appt with the ENT is mid March. I have already lost hearing in my left ear and there is ringing or whatever the noise is ALL THE TIME!!!! I also frequently have pain behind my ear and in my head by the effected ear..... Not sure if its really the tumor or my imagination, but whatever it is it hurts; luckily its not all the time. From the different things I've read on this site it seems I am in no danger while waiting. In anyone's opinion is this true or am I dillusional? My ENT is planing the type of surgery that goes behind my ear and through the ear. He said there is no chance to preserve any hearing in this ear. Does this sound right? Or should I get a second opinion.
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Hi Kimbra:
Don't rush into surgery until you are convinced it is what YOU want to do. Did your doctors mention radiation to you? Depending on exactly where your AN is, you could very likely be a radiaiton candidate.
By the way, welcome to the AN forum. We have all either had treatment (surgery or radiation) or many are wait and watch right now. ANs normally grow slow so you have a good deal of time to research your options.
Where do you live?
The most important thing to do now is find the most experienced doctors for their opinion. You can send your MRI CD to House Ear Institute in LA and they will give you an opinion shortly after they get your CD. Also, click on the ANA icon at the top of the forum. They will send you all sorts of info and a list of questions to ask your doctors. Experience is everything when an AN is involved.
Relax, research and ask any questions you might have. We have all been there. Good luck, Kathy
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Hi there Kimbra:
If your hearing is already gone, then you aren't hurting anything by waiting. I had gradual hearing loss when I started the process with my ENT, but by the time it was diagnosed and a surgery date set, the hearing was gone. What made me push for surgery quickly anyway was my balance issues. Mine must have been attacking the balance nerve after it finished off the hearing nerve. I couldn't believe how quickly my balance went downhill over just a period of a month, even to the point at the very end of not being able to drive safely. There are many people here that are in the watch and wait and monitoring modes. It just depends on your symptoms. I had trans-lab surgery (the kind I believe your surgeon is describing to you). I was fully prepared to lose the remaining hearing in that ear since it wasn't usable, just garbled. That approach, though, gives the surgeon the best view of the tumor and has the best chance in my opinion of preserving your facial nerve and removing all of the tumor during the surgery. Immediately after the surgery, my facial nerve and movement were perfect. Starting the next morning, just due to the normal swelling, the response got a little slow. I also knew this might happen and they said that it should come fully back after it recovers completely from all the swelling. In just a month, it's at least 80 percent back to nornal. Should be completely back, I'd say within the next month.
Jean
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Hi Kimbra,
Kathy made a lot of good points. You do have some time to do research. It never hurts to get a second, third or forth opinion. We are all here to help each other and we can totally relate to how it feels when we were first diagonsed. There is lots of help on this web site so just ask away, I'm sure someone here will be able to answer some or all of your questions. Please keep us posted. Ann
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Hi Kimbra and welcome. How many AN surgeries has your ENT performed? Are you comfortable with him doing your surgery. Listen to you gut instincts. If you've already lost your hearing then you have time to wait and research all your options. I had previously lost my hearing before my diagnosis and still had retro as I was not comfortable with translab. I wanted to keep my nerves in case further down the road some technology was developed. If the translab would have gotten rid of my tinnitus I'd have done it LOL
Have you requested the informational booklets from the ana? They are very informative and will help during this time. So glad you found us!
Hugs
Michelle
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Kimbra
Last October when I saw my brain on plastic with a gold ball on the left side... time stopped for a moment.
Let me try to tell you what I learned about treatment.
Get more than one opinion. If you do only get one, make sure it is from one of the major treatment centers that perform a large number of these per year. Some examples would be House in LA, Barrows in Phoenix, or Mayo Clinic.
The surgeons generally still seem to prefer surgical removal over radiation. But your in charge there.
All doctors I talked to were very emphatic that hearing is nice, but the face is a must.
I went Retro Sigmoid at Barrow's Neurological with a team thats been doing these together for 20 years.
My outcome was wonderful. I would do it the same way again. Let me know if you want their info.
Richard
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HI, I too am waiting surgery for the removal of an AN. The surgeon is hoping to preserve hearing and is planning on using the subocciipital (spelling?) procedure. The tumor is too large to come out thru the ear, so, I'm wondering, if you still have hearing and it is small enough to come out thru the ear why he would not give you a different option which may preserve the hearing you have. A second opinion may not hurt, especially if you have another location available which may do the procedure pretty frequently as well. Good luck
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HI Turk and welcome. What size is your tumor? Where are you having your treatment? Retro sig, suboccipital are interchangeable terms. Funny I was told retrosig gave the doctor the best view of the facial nerve but I would guess it's dependent on whete your tumor is located and the size. Let us know how you do turk!
Michelle
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Thanks for all your response. I guess I still have some hearing in my left ear, however it seems to be useless. I can't make out what is being said and the ringing makes it even worse. To answer some of your questions..... I live in Yukon, Oklahoma, my AN is according to the MRI report 1.6 x 2.0 x 2.5. I went to see an ENT at Hough ear institute in Oklahoma City, Ok his name is Michael McGee he is an Otologist. He said that radiation was something that I could consider but with the size of the AN he would not choose that route if it were him. He said if I had the radiation and then had to have surgery at a later date it would be more difficult to remove. I am getting a second opinion March 1st. I'm going to the Scott & White clinic in Temple, Tx to see a doctor by the name of ??Braymier??? he is suppose to be one of the best... I'll decide what I want to do at that point. For now I'm just dealing with all the little quirks that seem to be visiting me since this thing grew in my head.. My inability to concentrate and keep my trane of thought on what I'm doing is getting a little tiresome and the fatige is terrible.......But it could always be worse, at least these things can be managed and fixed. I don't have any balance issues yet although my boyfriend has said I've been off my rocker for quite some time now.......he thougt it was due to my blondness......LOL
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Hi kimbra and welcome.
I have to agree with Bruce as your AN is most certainly treatable via radio-surgery (radiation). Since you are in Oklahoma, I will only make one suggestion to you. Dr. Clinton Medbury, based in Oklahoma City, not only performs Cyberknife and Gamma Knife on AN's, but he also works with a micro-surgical team as well, so... the point being... you get a full rounded discussion of options with no bias. He can be reached at:
Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org or cmedbery@coxinet.net
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave.
Oklahoma City, OK 73102
Now, he will read your films for free consult and more than happy to reference you (if need be) to another opinion or any option that you may be comfortable. He is liocal to you (vs. cross country) and exceptionally well-respected in the field of AN treatments... just a suggestion...
Hang in there.
Phyl
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Hi Kimbra,
Make sure you take a good look at your hearing exam and ask questions. It sounds like your hearing may be "masked" which means you cannot use the telephone or understand conversation in that ear. I had this loss too in addition to other losses on the chart. Remember that anything under the 20 line represents some sort of impairment. The further down the chart the greater the losses. With all due respect I'm not sure if I totally agree with Bruce that there is no proof that surgery is more difficult following radiation. If you ask a great institution such as Pittsburgh that favors radio-surgery over microsurgery sure there response would be that it's not more difficult but then again if you ask another leading institution such as House which usually suggests micro-surgery especially in younger patients then there response likely would be that it is more difficult to remove due to scar tissue (not just stickyness). Both institutions have world leading experience and both have first hand experience. I'm not saying that one option is better than the other and til' this day I still get confused, but I am saying that no one on this board is a doctor and you need to become "well-informed & well-educated" through your own research. Sooner or later it will all make sense and the decision will become clearer. Consult with the best doctors. Make sure they have the expereince needed. When the time does arrive there is no turning back so slowly get to know all the wonderful people here on this board, read the stories and realize that you are not alone. We all encountered various changes following treatment. Even those that have not elected treatment are dealing with issues. We all have the same type of tumor in common. I asked myself what would I do if I was in your situation and I just don't know. These tumors still amaze me til' this day because they are so unique in every case. I wish you the best! Steve
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Hi Steve,
wonderful points you bring up and I do agree with most. There is thought that in doing micro-surgery after radiation does potentially jeopardize some functions, so it is a bit more tricky to radiate first, then if failure, doing surgery after. One reason (for me) why CK made sense, gawd forbid, there is a failure, it is safe enough to retreat with CK, thus, keeping my risks lowered instead of going invasive if non-invasive doesn't work.
There was a post on the CK Patient support board on it, I believe by Dr. Medbery. Let me see if I can find the back up this discussion.
Great points you share. Thank you. :)
Phyl
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Steve,
This is an interesting read in the CK Patient Support board as some have questioned about radiation and surgery.
http://www.cyberknifesupport.org/forum/default.aspx?f=1&m=8215
Phyl
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Thanks Phyl,
The link only mentioned one failure followed up with micro-surgery and they did not perform the surgery themselves because they are not neurosurgeons so it just goes back to what I said earlier. I just think it's not right to lead people into believing that surgery is not more difficult following radiation when that is not totally true especially when the information is coming from those without any surgical experience. I'm checking out the cyberknife site some more...when did this come about??
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Steve,
Please reference Dr. Spunberg's comments (noted below) on his post on the first page... this is what I am referencing. Although we know nothing is full proof, there are risks involved... just to be noted as with any AN treatment (or retreatment). Please keep in mind that neurosurgeons are, typically, part of a radio-surgical treatment team, so there are consults with the neurosurgeons involved.
Thanks.
Phyl
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Jerome J. Spunberg, M.D.
Registered Member
Date Joined Feb 2006
Total Posts : 1677
Posted 11/11/2006 11:14 AM (GMT -8)
The "scar tissue" refers to scarring around the tumor in normal tissue, not the tumor itself. Sometimes scarring (as the volume treated includes some normal tissue) may make removal technically more difficult later on. There is some damage to surrounding normal tissue as one would expect. Think about it. When a surgeon operates, normal tissue is removed along with the tumor, usually a lot more normal tissue than with CK and often a lot more normal tissue than tumor. For example, when a lobectomy is done for lung cancer, the entire lobe, or sometimes the entire lung, is removed and the tumor may only measure a few cms. Therefore, much more normal tissue is taken than just the tumor itself.
--------------------------------------------------------------------------------
Jerome J. Spunberg, M.D., FACR, FACRO
Cyberknife Center Of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828
Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717
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Thanks Phyl,
I only skimmed through the threads becuase I just got home from work and was tired. I understand what you're saying but my initial concern was with Bruce. He stated that it was simply Not True that surgery was more difficult following radiation. Look Back! In your thread Dr. Spunberg mentioned that it is more difficult and all the sites I've read months ago also stated surgery to be more difficult because it's much harder to locate and seperate the nerves from the scar tissue. We have to provide our new members with the facts, that's all.
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Hey Tired Steve,
Exactly! :) That is why I posted Dr. Spunberg's post... as I am in agreement that surgery, post-radio treatment, can be very chancey. :) Nothing more.
Hang in there!
Phyl
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Steve and Phyl,
I appreciate your imput. I have seen 2 ENT's and 1 Neurologist since my last post and they all told me the same things. I could look at radiosurgery but with the size of my tumor there was a higher probability that I may still need surgery. I have, with the help of this site decided that I want to go the surgery route. I am planning on the 2nd or 3rd week in March. I ready to GET IT OUT!!!!!! I hope everyone has a nice Valentine's Day. kkweiher
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I've seen the ENT again and the neurologist.....It's scheduled.......March 16th. It's a good thing too because I think I am becoming some kind of lunatic with all these new simptoms. If stress can make me feel this way its a good thing I decided to just get it out. My neck is stiff, now I am having some wierd feeling in my right hand (turmor is on the left side) its like part of my hand is going numb and my right upper arm feels extremely heavy..... I truly think I am loosing it. I feel like some crazy hypocondiac. Surely this thing in my head could not be causing all these crazy symptoms. I can't even stand to tell anyone around my for the fear that they will be saying "Oh for heavens sake now what is wrong with you!!!!!!!!" I can't wait til this is over with, right now I am so frustrated I feel like I could cry and I want to scream!!!!!!!!!! Thank heavens for this web site, if it were n't for being able to release here I really might go NUTSSSSSSSSSS.
Kimbra
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Also as a suggestion you can send your MRI films to the House Institute in Los Angeles, CA and they are very good at calling you back to consult with you. Although it does sound you have spoken to a few specialists and have already decided. It is from my understanding free.
I think everyone here knows a lot and quite frankly research is good, but bottom line once you have researched and discussed it is your decision to make. I am on board with you Kimbra in that I want the darn bugger out completely totally!!!!!!!!!!!!!!!!!! Period. I read and checked out and discussed with everyone and decided this was the best choice for me (also looking at my MRI and seeing that bulge heading towards my brain stem <<<as far as I was concerned looked like it was kissing it) was enough to freeze me!) I'm not fond of foreign objects growing in my head!!!!!
Good luck and take care. Keep us posted on your progress.
Sharon
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Kimbra,
First of all, we are all here to support and cheer you on. My wife was diagnosed with a 1.9 cm right side AN in October. We researched our options exhaustively and settled on translab with Drs. Friedman and Schwartz at the House Ear Clinic. Susan had a good outcome.
You will find people here who have had good experiences with microsurgery and radiosurgery. You will also find learned physicans who favor one of the two approaches. Both options are reasonable alternatives. In the very best hands, you have a very good chance of success, but there is a risk of complications either way.
Some other folks have suggested that you contact House for another opinion and I endorse that view. They are phenomonal docs and are extremely humane. Some will say they are pro-surgery. We found them to be data-driven and both Friedman and Schwartz have done radiosurgery. They will give you their opinion, based on research, but they both told us repeatedly that both options are reasonable.
So, before you make your final decision, I would give them a shot.
Good luck and we will be thinking of you.
Fred