ANA Discussion Forum
General Category => Inquiries => Topic started by: teripo on July 27, 2011, 12:48:30 pm
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Well I'm back from 2nd opinion Dr.He said Gamma would get rid of the tumor for good.3% chance reoccurance only.I have 1.8cm AN and am trying like all us to make the best decision[and I'm no good at decision making!].My AN would be very large by the time I would like to decide on something.But I guess the choices are very confusing but I am learning something new everyday from you people.I go for 3rd opinion on Monday.Dr Haas in Mineola.I will also call Insurance and see if any Dr.s on website are in my plan.
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Teripo
Yes it seems like your AN can still be treated with radiation. I was told anything under 2.5 cm have pretty good results. My doctor told me that radiation is 93% effective. I went with cyberknife because I did not want the radiation in one dose and I didn't like the thought of having the mask screwed to my head. I had 5 sessions with the cyberknife and so far all seems pretty good. I have lost a little hearing on the AN side but I was told that might happen.
Best of luck with your decision
Tom
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teripo .....
Just want to clarify one thing ..... to my knowledge (I am not a doctor), the goal of radiation therapy for an acoustic neuroma is to stop its growth. After treatment, there will hopefully be necrosis (dying) of the tumor and perhaps some shrinkage (usually is swelling post treatment and then reduction), but the dead tumor will still be there. There have been noted on this forum of a few cases where very small ANs were no longer visible on follow-up MRIs, but that is not the norm. Still, treatment should also relieve symptoms.
Clarice
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Tom when did you get radiation and what kind?What size was the AN?If I may..
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Teripo ~
I was diagnosed with a 4.5 cm AN in 2006. I underwent 'debulking' surgery that 'thinned' the tumor and cut off it's blood supply. It was reduced to approximately 2.5 cm. Dr. Jonathan Haas (then at the Hospital of Saint Raphael in New Haven, CT) was my radiation oncologist. He teamed with my neurosurgeon to 'map' 26 ('low-dose') FSR treatments. The radiation was both uneventful and effective. In time (about 18 months) the remaining tumor showed necrosis and the beginnings of shrinkage. Five years later, I'm doing great! I highly recommend DR. Haas.
Jim
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Teripo
My AN was 1cm. And as Clarice mentioned at my 6 month MRI it did show swelling so it was a little bigger. But my doctor told me that may happen and we are not concerned yet. Hopefully at the one year mark the MRI will show that it has died.
TJ
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Teripo,
My AN was 2.2 cm and I went with Gamma Knife, and didnt learn about cyber knife until after the fact and I came to this sight. I am within the lucky 3% (my doctor said 2%) that the AN grows back. I am not dealing with a 3mm growth totalling 2.5cm AN. With speaking with my new neurosurgeon from UPMC in Pittsburgh, he has said that if it were him, he owuld have done the same as I and started with the Gamma Knife, the chances of regrowth are so small that this does seem like the best option. I am currently awaiting surgery this Friday to remove the tumor partially to save my facial nerve,
As for the Gamma Knife, It is my understanding the same as Clarice, the tumor is "stunted" and supposed to stop growing, and then will begin to die and possible dissolve into the body some. But the purpose is to stop it from growing. Great job for getting numerous opinions, thats what I did and even though I have the regrowth, I am happy with my decisions that I made.
Sarah
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Teripo -
as Clarice stated, radiation will not get rid of a tumor. The goal of radiation is to stop the tumor's growth.
Usually docs will radiate ANs that are less than 3 cms, but location (as well as size) is a factor.
Jan
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Hi all
As mentioned, the goal of radiation is to stop enhanced growth of the AN. It will not "disappear".
I am now over 5 years post-Cyberknife and when looking at my MRI's, my AN just looks like a blob laying there. There is a little shrinkage (visible to the eye) but it's still there.... but just laying there doing nothing!
Sending everyone wellness wishes and patience for those doing their homework!
Phyl
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Thanks yes I am aware that the tumor doesnt disappear, I guess I choose the wrong wording in my post.The Dr. meant that if you want to choose GK, I guess, it will stop the growing.I have a new question now how do I find out where the location is and the treatment for it?I know the Dr. said it's pressing on the brainstem.That can't be too good...Excuse me I'm new to this.
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Thanks yes I am aware that the tumor doesnt disappear, I guess I choose the wrong wording in my post.The Dr. meant that if you want to choose GK, I guess, it will stop the growing.I have a new question now how do I find out where the location is and the treatment for it?I know the Dr. said it's pressing on the brainstem.That can't be too good...Excuse me I'm new to this.
Teripo ~
No need to apologize. We were all 'new at this' at one time.
To get more detailed information on the size and exact location of your AN, ask for the radiologists report from your MRI and a disk with the images. Warning: the MRI images may be hard to see and the radiologist's report will be full of medical jargon, Latin words and convoluted terms, difficult to understand. It's like a secret code. However, any competent doctor can translate the report in a few seconds. Mine did. To arrive at an informed treatment decision, you do need to know exactly what you're dealing with; i.e. size and location. Ask.
Jim
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Hi.. Glad you have an appt. with Dr. Haas on Monday. He will answer all your questions. Put you at ease and then you will be able to make a decision. It is alot to think about. Since my AN was 2.4 cm, with it pressing on the brainstem, I made a rather quick decision because I didn't want to run the risk of the AN getting so big that CK would be out of the question. Good Luck and please keep us posted, Joan p.s. I choose CK over GK because I thought low-dose fractionated radiation was safer.
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Dr. Haas treated the tumor 26 times? I heard the most so far is 5 times.Didi he use less radiation is that safer and more effective?
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Dr. Haas treated the tumor 26 times?
FSR - fractionated radiation is commonly done in doses like this. FSR is different than CK and GK. 26 isn't unusual.
Jan
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Dr. Haas treated the tumor 26 times? I heard the most so far is 5 times. Did he use less radiation is that safer and more effective?
Teripo ~
Jan is correct and I apologize for any misunderstanding. Allow me to offer a more comprehensive explanation.
I underwent FSR,the acronym for Fractionated Stereotactic Radiosurgery which is just a fancy way of saying that the radiation is delivered in small amounts ('fractionated') over a period of time. The purpose is to spare surrounding tissue from the negative effects of radiation by delivering relatively small 'doses' on a daily basis. Each patient is different. In my case, Dr. Haas decided that 26 separate 'sessions' of 'low-dose 'treatments' would be sufficient to destroy the remaining tumor's DNA and halt any further growth. I did not experience any negative effects from the FSR i.e headaches, nausea or hair loss. The affable, knowledgeable Dr. Haas was prescient in his evaluation of how much radiation was needed in my situation. Later MRI scans indicated tumor necrosis (cell death) and the beginnings of shrinkage. Today, all is well. The tumor is dead - but I'm doing great! Dr. Haas will explain and recommend what he deems best for your situation. Its possible that he may recommend FSR as an option for you. To be honest, FSR is time-consuming to undergo but was very effective for me and I consider it time well spent. In any case, Dr. Haas is the expert and he'll certainly give you a trustworthy recommendation. Again, I apologize for the earlier mis-communication and I hope this helps to clarify FSR for you.
Jim
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Jim Thanks and to all I am going today ..wish me luck! Jim who did your initial surgery?Sorry for all the questions..
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Jim who did your initial surgery?Sorry for all the questions.
No problem, that's what we do here. :)
My AN 'debulking' surgery was performed by Dr. Isaac Goodrich and Dr. Judith Gorelick. Both are neurosurgeons and affiliated with Connecticut Neuroscience in New Haven, CT. http://www.ct-neurosurg.com/2801.html (http://www.ct-neurosurg.com/2801.html) They did an outstanding job.
Jim
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OK I went to Dr. Haas today and he reccomended 3 treatments CK.He said it was slightly pressing on the brainstem.He actually trained with Dr. Lundsford in Pittsburgh, where it was invented, I think? He also used to treat with GK and was not a fan of this antiquated treatment of screwing on a skullcap ,when CK has the same results with a robotic arm to boot.He said the 1st place I went to North Shore LIJ has a linear machine SRS.He went on to mention the history of why Winthrop has the CK,because they contracted it first with the stipulation no one else on Long Island would have access to it.So NS/LIJ got this other machine right afterwards which is linear,dont quote me please! I was impressed with this Doctor as he teaches the therapy also.
I have 2 appts. in Manhattan for Dr.Selesnick and Dr. Roland I think they mostly do surgery.My Dr. reccommended Selesnick and ANA mentioned Roland alot.
I think all these consults are helping me create an informed decision.Although I will never know enough.
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Hi So glad you met with Dr. Haas. You really leave his office feeling very well- informed. I was very pleased with the CK at Winthrop under his direction. Its great that you are having all these consults as we need to be very informed in order to make the right decision. Although its always a coulda woulda shoulda situation. Good luck and please keep us posted, Regards, Joan
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Jim thanks for all the info you are a hero member! OK the question... surgery for the AN then radiation seems like a thorough approach to beat this.I have 1.8 CM AN and no drs.have mentioned this approach.Your thoughts on this?
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Jim thanks for all the info you are a hero member! OK the question... surgery for the AN then radiation seems like a thorough approach to beat this. I have 1.8 CM AN and no drs.have mentioned this approach.Your thoughts on this?
Teripo ~
Thanks for your generous words. I can only speculate but my presumption is that your AN is considered too small for the debulking & radiation approach.
My AN was 4.5 cm and pressing hard on my brainstem, so, due to its size and location, radiation was never a consideration for me. However, I had done my research and made sure my doctor knew (prior to our first consultation) that I was very concerned about developing facial paralysis as a result of the surgery. When we met, he had a plan mapped out that was two-stage. First the 'debulking' surgery that would pare down the tumor, basically 'hollow it out' (as he described it) taking it away from the brainstem, making it much thinner and so, very amenable to the effects of radiation. He also planned to sever the tumor's blood supply, a critical step in the operation. As I've mentioned, my neurosurgeon had decades of experience with AN removals and had my full confidence, going in. He performed the surgery with the help of his able protégé, Dr. Judith Gorelick. He promised that he would do everything possible to avoid causing any facial paralysis. The operation lasted just under 9 hours and was very successful. He reduced the AN to approximately 2.5 cm and the facial nerve was intact and functional. I did not suffer facial paralysis. In fact, I had few problems at all and was discharged 5 days after being admitted to the hospital. It took awhile to regain serviceable equilibrium but I was driving within 2 weeks of my surgery and recovered at a brisk pace. Ninety days later, I was scheduled for 26 FSR treatments. These were 'mapped' (via MRI and CT scans) by both the radiation oncologist (the eminent Dr. Haas) and my outstanding neurosurgeon, Dr. Issac Goodrich. I received a total of approximately 27 gray (2,700 rads). The sessions were tedious but uneventful and I never suffered any problems e.g. nausea. Subsequent MRI scans indicated the beginnings of necrosis and tumor shrinkage. Personally, I feel great. No symptoms and no real problems. I'm SSD but I was SSD prior to the surgery so that was never an issue.
To wrap up this long explanation, I'll suggest you ask one of the doctors you consult about the debulking approach (with follow-up radiation) to get a professional opinion. My guess is that they'll say (due to it's size and location) that they can safely remove the entire tumor in one operation and there is no need for surgery plus radiation. I'll be interested to find out how this progresses.
Jim
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The first thing I cant help thinking of is my hearing?If I get surgery that will go.I am anxious to treat this but I want to keep what I have left in the ear.Maybe 50% and I know it may go anyway or some of it.But I am going to surgeons in the city on Aug 22 so that is 1 of my questions.
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The first thing I cant help thinking of is my hearing?If I get surgery that will go.I am anxious to treat this but I want to keep what I have left in the ear.Maybe 50% and I know it may go anyway or some of it.But I am going to surgeons in the city on Aug 22 so that is 1 of my questions.
When it comes to radio treatments, there are newer studies reflecting that "fractionation" of radio-treatments do tend to help with hearing preservation. The thoughts behind this is.... by fractionating the doses over multiple days with lower doses each day will help with surrounding structures and lower hits of radiation to the structures surrounding the tumor.
There are many that have had radiation done with a single dose (ie: GK) when much of their hearing is already lost prior to treatment. For many (myself included) that had/have higher levels of hearing, pre-treatment, many have opted for "fractionated" treatments with "hearing preservation" as one of the primary goals... many treated successful (myself included). Many have posted here regarding hearing preservation with fractionated radio treatments over the years... many successful... some not.
Hopes this helps.
Phyl
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Pearl how mant treatments did you get of CK,sounds like you have a great outcome.
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Hi, I had 3 days of CK. I had a total of 18 gys of radiation which was dosed( fractionated) evenly per day. If I were to have 5 days of CK the total dose would still be 18 gys. There is another very good site with a very knowledgeable doctor who specializes in CK and AN..
http://www.cyberknife.com/Forum.aspx. JLR
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Teripo, I had gamma knife in 2009, and my hearing actually
Improved slightly after the treatment. I am currently 9 days out of surgical removal and even though I have lost my hearing, my good ear is like a bionic hearing! I could hear my boyfriend ripping duct tape from 2 rooms away last night!!!! Plus it's weird, but I can hear directional sounds and hear people talking on my bad side. I was scared to loose my hearing my hearing too! But other than the increase in tinnitus the hearing loss has not been a very big adjustment! Talking on the phone in my good side is sooooo loud now! It's so weird! But the loss if hearing truly is not that bad!
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Sarah .....
It is a mixed bag to have bionic hearing in one ear and none in the other. I have the same issues, plus the tinnitus you describe, as well.
The name for the "bionic hearing" is hyperacusis.
See: hyperacusis
n 1: abnormal acuteness of hearing due to increased irritability
of the sensory neural mechanism; characterized by
intolerance for ordinary sound levels
I had my audiologist make a custom fit musicians' earplug for me a couple of years ago to put in my "good" ear so I could tolerate really loud situations (restaurants, movie theaters, etc.) I also keep ear protectors (my husband bought them originally to mow the lawn) handy to use when running the blender, etc. Both of these things have greatly helped the hyperacusis. Unexpected noises still cause me to jump ..... especially chip bags opening, dishes clanging, etc.
I do not know if this is related or not, but on audiograms, the hearing in my good ear is way above normal for my age. I thought that was a good thing ..... now I'm not so sure. :'(
Clarice