ANA Discussion Forum
General Category => AN Issues => Topic started by: sdw79 on June 11, 2010, 08:42:11 pm
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Hello I am a 30yr old male with a 9.4mm AN. I have to go to Barnes Jewish/Washington University to discuss surgery options. They are trying to deter me from Gamma Knife because of possible cancer years down the road. The more research I do I think FSR sounds the best but dont know a whole lot about it and if there is anyone close to here that offers it.
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Hello and Welcome!
I didn't have Gamma or FSR or any of that stuff but I just wanted to welcome you and let you know that someone will be along soon that can direct you better than I can!! ;)
Good Luck!
K ;D
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I can not wait till June 30th when I talk to the Dr. because I have two younger cousins and one has Trigeminal Neuralgia and the other has Pseudotumor Cerebri and yet another cousin all on same side of family that has the name I dont know but she has to have surgery asap. I researched Trigeminal Neuralgia and they have strong connection to acoustic neuroma so im freaking out thinking it could be NF2. I also get severe migraines with stroke symptoms as well as family members. I am just really freaked out.
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Take a deep breath in & out. Thank God for the era we live in... all will be diagnosed & taken care of. Keep a peaceful heart my friend, that is the ticket !
Always good thoughts, Nancy
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Hello I am a 30yr old male with a 9.4mm AN. I have to go to Barnes Jewish/Washington University to discuss surgery options. They are trying to deter me from Gamma Knife because of possible cancer years down the road. The more research I do I think FSR sounds the best but dont know a whole lot about it and if there is anyone close to here that offers it.
cancer years down the road ? i'm lost.
Jim should chime in shortly
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I am going to say that this is iffy about NF2 as all of your cousins will have to have an AN plus one or more other type tumor to be NF2. There also would have to be a parent of theirs to have an AN also for it to be a hereditary version. Or also all have to have ANs on both sides. This may be something to will have to watch with in your case as my tumor on the other side did not show up for 2 yrs after my first surgery. Mine was a genetic mutation type NF2 with no other family and not until I was 51. There could well be some other kind of possibly genetic problem causing all this in your cousins. You can see what your dr thinks. The migraine issue may be related to this or may not.
The risk of cancer with radiation for ANs is very low but many drs do think of this. Others will talk about this as I have had only surgery at Univ of Iowa. Keep asking questions here as we try to be of help and there is a wide variety of how we have had treatment. Cheryl R
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Hi and welcome to the forum.
I think it is very important that you take your time, research and get a second opinion.
Surgeons will always prefer surgery.
You may also want to know if the tumor is growing at all (watch and wait). Could be a good idea if it doesn't cause you any symptoms.
It is only natural to be scared about this disease. However, these tumors are normally slow growing and you will have ample time before it gets you into serious trouble. I fully understand that the waiting time until your appointment is freaking you out.
Kenneth
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Welcome to the forum, this group is a wealth of information...you have come to the right place :)
Try not to worry too much about NF2, and just have your doctor do a DNA test to determine. That way you can deal with this one step at a time, knowledge is power so research is key, but too much research can make you even more anxious. Just get in to see a Dr as soon as possible, but make sure you get multiple opinions and the whole "cancer" worry is completely unsubstantiated. Make sure you also talk to a neuro who does radiation therapies as it could most definitely be an option for you. Please keep us posted on how your appointments go and your journey through the decision and treatment.
I think most of us agree that the decision can be the hardest part of this journey, so hang in there and make sure to weigh all your options.
Take care,
Liz
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SDW ~
Hello and welcome. Following successful debulking surgery for a large (4.5 cm) AN, I underwent FSR treatment in 2006 - and it, too, was very successful. I had 26 separate 40-minute sessions and no problems at all, except boredom. Subsequent MRI scans have indicated necrosis and shrinkage of the remaining tumor. The risk of developing cancer from FSR is basically unproven and my doctors considered it inconsequential. Of course, I was 63 at the time, which may have had some bearing on their opinion. Frankly, I wouldn't allow something completely theoretical to deter me from obtaining the treatment I felt was best for me. However, this is a personal decision and I can only offer you my experience as a possible guide. I hope its useful for you.
Jim
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Don't be scared of radiation - a lot of people who "knock" it don't know enough about it to judge it.
It is a very good choice for treating acoustic neuromas and if your AN is small enough (yours is) you should consider it.
If you haven't already, please contact the ANA and ask them for their informational brochures. You'll find them very helpful and informative.
Best,
Jan
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SDW,
Also want to welcome you. I had to have surgery,so don't know about the other options,but I do know that time is on your side. As everyone else has mentioned, do your research, and try not to let anybody "bully" you into what they think is the best treatment.
Cyber Knife is also an option. Your AN is small, and the symptoms for some weird reason seem to amplify for a lot of folks once they find out they have the little booger growing in there! So relax and know it is a benign tumor.
Hang in there, until June 30 ;)
Maureen
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Hi there
Not sure what words I can put on a page to attempt to reassure you, for me beating the invader in my head is as much about getting my mental state right as it is about the actual treatment. Depending on where you are with your diagnosis I would suggest gathering as much info as you can about treatment options etc. and then take some time out and attempt to completely avoid thinking about it /researching for a few days to give your mind time to assimilate the info.
I had debulking surgery in Feb that removed 3/4 of an approx 4cm booger and have been advised I need GK later in the year to kill the remainder.
The thought of the treatment potentially causing cancer later down the road is something I haven't even entertained to be honest and I have done lots of research into it recently
I'm back to work and living my life exactly how I lived it before I was presented with this challenge. I firmly believe my recovery is as much down to the way I mentally dealt with everything as it is to my surgeons brilliance.
Have a cry, freak out, panic, think the worst and then pull your head together and start telling the gremlin in your head that his time is coming and your gonna kick his a*s, gather what support you need from family and friends and the great guys in here, make a point of regularly doing things that you enjoy (going to movies etc etc) to take your mind off things. When you have low days repeat the process, I convinced myself that this is just a temporary inconvenience and something to tell the grandkids ;D.
There are some terrific roles models on this site with inspiring stories, whenever you need a determination top up just log on and read a few posts and you'll be ready to take on the world.
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sdw79 .....
Adding my welcome to this forum of caring, supportive friends.
My history includes trigeminal neuralgia on the right, for which I had microvascular decompression surgery (via retrosigmoid approach) with wonderful success in 1994. No evidence of an acoustic neuroma on the MRIs with contrast and CT scans then. 13 years later I began having balance issues (still no evidence of an AN on the MRI). A year after the balance issues began I suddenly lost 20% of my hearing in my left ear ..... a subsequent MRI with contrast revealed a 2+cm AN on the left ..... one of the very rare rapidly growing AN types. No one has ever mentioned any connection between my earlier trigeminal neuralgia and the AN and no one has ever mentioned the possibility of NF2.
Like the others have said, I think the medical community has been very slow to come around on the safety of current radiation treatments for acoustic neuromas. Many of the older docs cannot forget what damage the older forms of radiation treatment (or current cancer treatment radiation) can do.
I had radiation treatments following a tonsillectomy/adenoidectomy when I was a teenager (many, many years ago) so I was very wary about more radiation. At the ANA Symposium last August, I had a chance to talk with one of the radiation presenters and expressed my concern. He assured me that the current amount of radiation given for ANs, plus the very specific targeting they can do these days is far, far less dangerous than what I had. (.... and I'm here to write about it! :D)
Best thoughts.
Clarice
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Well i had an appointment with Dr. Chicoine at Washington University today. He thinks surgery is my best option since I am young and the tumor is small. I told him I wanted to know more about the gamma knife so they fit me in to see Dr. Simpson a radiation oncologist and discussed the issue with him. Now i am stuck with making the decision of either surgery or Gamma Knife. I believe the gamma knife would be the best for me but the surgeons do not believe so since I am young. But from what I understand there has not been any long term affects such as devolping cancer from the Gamma kniife. Am I correct. I am going to make my decision tommorow.
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I am happy today, I contacted dr. Gantz of university of iowa and I get to see him next week! I hear so many great things about him on this site and I am lucky it is only 3hrs away. I feel he would be a better choice for me versus Washington University
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Hi SDW79,
I thought I would share my story and decision to your question. Almost a year ago today I found that I had a 9mm x15mm AN. It started with a fullness in my hear and a small hearing loss. I went to an emergicare facility since it was the weekend to have my ear checked- out. The PA told me I had an ear infection which I questioned outloud, "how can that be, I have not had a cold nor do I have allergy problems. :o" Her reply was, "Well that ear looks different from the other ear." Take the antibiotics and if you do not sense any improvement, then go to an ENT. Two weeks later, Iwent to the ENT. Had a hearing test(which showed some hearing loss). He said it could be due to one of 2 things: a sudden sensory hearing loss or an AN(which would have to be ruled out by an MR)I. He recommended a round of prednisone to see if that would clear anything up. Two weeks later no difference so I had the MRI and on the way out the door, the tech says "Good Luck". Well that sort of answered my question before I got the call from the ENT. Soooo from that time, I went to an otolaryngologist. He gave me several options based on the size of the AN: wait and watch for 6 months and then repeat the MRI or talk to a radiologist. I choose to wait 6 months and repeat the MRI. There was no growth and the oto-doc said to wait another 6 months and repeat MRI. Well during that 6 month period, I started my own research, looking into all the options available and found a doctor here in NC that has many many years of experience removing these "things" and actually trains other neurosurgeons. I made an appointment with him and felt very comfortable and confident in his advice, which was surgery. He felt that based on the size of the tumor he could preserve my remaining hearing. So for three months I processed all the info I could on all my options. I have choosen surgery(which will be July 7th) based on several reasons. I could have the gamma knife done here in NC, but he pointed out several things: I would still have my hearing for 2-4 years, but overtime it might decreased, it is usually difficult to do the GK without some damage to the balance nerve and there is no documentation to the effects that radiation will have on the brain/body 10-20 years down the road.He also does not recommend radiation for young patients(i'm 47) The neurosurgeon stated that with the surgery, he could remove the tumor(because it is small), and preserve my hearing. He monitors the auditory brainstem response and facial nerves during the procedure. With all this being said, which I know is alot ::), I felt best with getting the tumor out!!! That of coarse is an individual decision; one that I have prayed daily about. Many people choose other methods and are very satisfied with their decision and outcome. I pray that you will take time and weigh your options and find peace with your decision. Let me know if you have any questions.
Lisa
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Good for you and I hope you like Dr Gantz. I feel very lucky we have him in Iowa. The wait at the clinic can be a bit slow so just take something to read. Just remember he is not for radiation so if interested in checking that out will need to see something else. I wish you well! Cheryl R
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Well i had an appointment with Dr. Chicoine at Washington University today. He thinks surgery is my best option since I am young and the tumor is small. I told him I wanted to know more about the gamma knife so they fit me in to see Dr. Simpson a radiation oncologist and discussed the issue with him. Now i am stuck with making the decision of either surgery or Gamma Knife. I believe the gamma knife would be the best for me but the surgeons do not believe so since I am young. But from what I understand there has not been any long term affects such as developing cancer from the Gamma knife. Am I correct. I am going to make my decision tomorrow.
Well, I know you are at what I call the HARDEST mental part of this journey....what to do. No one can make the decision for you and it stinks because no matter what option you choose there are no guarantees to what the final out come or future may bring. One thing I stress to people with smaller tumors is WATCH & WAIT first! Unless you doctors have told you good reasons not to. But there have been enough people that have done watch and wait and had no changes in symptoms or growth for quite some time. As one said above, be sure to get the info. from the ANA.
My personal situation WAS watch & wait for 2 1/2 yrs. because doctors were watching another brain tumor. That one stayed stable, but this little AN started growing faster than normal. When it started affecting things I decided to have it surgically removed. I looked into radiation & my neurosurgeon actually does both surgery & radiation. Due to my age and not knowing much long term after radiation, he recommended surgery. I personally didn't find much I liked for radiation because of it being newer and some people still end up with symptoms or surgery down the line. Have to say though, surgery isn't a piece of cake eitherfor some, and it takes plenty of time for the brain to heal and readjust. But, at least I am not worrying anymore about what is going on in there.
Hopefully I'm not to negative, but you do have time. I know a couple people on here who have actually stated they wished they wouldn't have just rushed into any decision.
Good luck and BE SURE TO GET THAT ANA info. ;D