ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: Evan on March 12, 2007, 06:30:42 pm
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Folks:
I am new here (as I was just diagnosed last week with a 1.6cm x 1cm x .5 cm Right sided AN). I have little or no hearing loss and no other real symptoms. I met with my ENT today and now I have to start going to consults. I just saw an abstract in the Journal Neurosurgery from July 06 which compared results for small tumors such as mine, for both Cyberknife and Microsurgery. The conclusion in that limited study (with no long term follow up to date) was that for small tumors and with little symptoms, radation may present the best choice. Obviously surgeons (I am in NY) are going to suggest surgery and the people out in Stanford are going to recommend radiiation. I would like to know what anyone who had to consider these options did to make their final choice.
Thanks. Evan
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Evan,
My wife had translab at House. We looked very closely at both options and both are reasaonable, if you are in the best hands. Drs Friedman and Schwartz were very knowledgable about the resesarch and trade-offs with both options. As Schwartz noted, much of the decision boils down to what kind of person you are. If you have major reservations about the idea of having brain surgery, that might lead you to radiosurgery. If, on the other hand, if you want a sense of final resolution, and not having to deal with the follow up forever, that might lead you in another direction. Now, before all the advocates of either approach descend on me, this is a bit of an oversimplification, but it's not too far off.
Go to Medline and read the research, keeping in mind that microsurgery results vary a lot based on being in the best hands. Read House's site and their research. If you would like to speak with my wife, let me know.
Good luck,
Fred
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Hi Evan and welcome:
My AN was borderline for radiation so I had surgery. At the time I was almost happy that the decision was made for me. Plus, the pressure in my head was overwhelming. I just couldn't imagine any more pressure from the AN swelling after radiation. But, I miss my hearing.
Like Fred said, what it boils down to is, do you want it gone or still in there dying off. Neither treatment is flawless. There are two new people on here that found out they have re-growth many years after surgery.
Good luck to you, Kathy
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Thanks for your responses so far. Without knowing more to date, I think translab is out for me since I do not have any real hearing loss to date, and translab does result in total hearing loss from that ear. I also think a potential problem is this: House does surgery (and not radiation). The New York docs, for the most part, also do surgery and not radiation. If I send my films to Stanford, I would think they would lean towards Radiation. I am essentially symptomless (no heardaches, no hearing loss, no dizziness) and so the thought of surgery is a bit scary. Of course if the consensus with the doctors say that this is the way to go, then that is the way to go. On the one hand?....on the other hand?.......ok...I will stop now.
Evan
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Evan,
House does do radiosurgery. I know that Friedman, Brackmann and Schwartz are all trained on it. Middle Fossa is a more challenging surgery, but you do have a chance of hearing preservation with it. You are right in that each professional has their view and their interepration of the research. And, the research is sometimes hard to digest. We found Marc Schwartz at House was very evenhanded and extremely patient in discussing the research.
Fred
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Well Evan, you are indeed in a predicament...
I went with surgery, having mucho tinnitus & decreased hearing... + a friend who is a neurologist recommending the surgery....
I didn't have a computer at the time, didn't know about this forum....
My personnal story is that I had a full 2 cm AN, went with the surgery... Now have facial paralysis, etc., etc.....
The doctors I chose were VERY experienced in AN surgery, post op I've met people who had it done with the same surgeons & NO complications...
What should you do? Many people have the surgery, get the 'bugger' out, & no major problems.
Unfortunately I have MAJOR PROBLEMS dealing with the facial paralysis & all that goes with it.
Would I have been 'fine' with radiation? Who knows...
Each tumor is different, the placement, the facial nerve's condition pre op.....
The surgeons really can't guarentee no complications; I was told a '5%' chance of facial paralysis,
so there you go.
Look closely at the different posts on this forum ....
Take your time (something I didn't do at all), then make your decision.
I wish you all the best.... Nancy
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Bruce:
You mentioned fun, didn't you? You know its funny. If you asked me a month ago, what I would do if someone told me I had some type of brain tumor, I would probably tell you I would all apart. When the doctor told me on Thursday, it was hard to digest and then I almost passed out. Now that I am over it, and have done an extensive amount of research on line and off, I am looking at it, not as fun, but as a challenge and unfortunately, one more "small" hurdle in life. It makes you realize how strong we as human beings are, and what we can endure. I am reading the posts of many others with more complications, and I have seen very close friends suffer from horrible diseases. I feel that I am fortunate, in life, in health, in sickness, and now here, having people like you and others take an interest in someone they do not know. Conditions such as this do not have to be defeating to us. They can be upsetting at times, troubling, disabling, but they can also become empowering, as long as we are proactive and take control of our lives. Sorry for the soapbox.
Evan
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Bruce:
I am curious. You have a small to moderate sized acoustic neuroma. You are certainly not old. Why did your doctor think that watching and waiting was the best course of treatment for you?
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Evan,
There are 3 options avaliable for you.
1. surgery - and there are a few types around
2. radiation - gamma v's cyber
3. do nothing
I had middle fossa surgery 4 years ago and my an returned about 1.5 years ago. it is currently around 2cm.
My surgeon now will not go near middle fossa surgery due to the post op complications and the inability to get all the tumour out if it is in a tricky spot. He either does trans lab or watch and wait.
There is a school of thought now that says to not touch the an's unless they grow and / or are near the brain stem and / or causing issues.
I am in watch and wait and if I have to, with have radiation treatment on it. I will not go near the surgeons knife again if I can help it. My complications - headaches - have been chronic for 4 years now and they are purely a result of the surgery.
At the end of the day, it comes down to personal choice - a lot of posters just want the thing removed and thats fine too. If you are comfortable with it in your head (that is, not causing you any issues) then monitot it. Have regular MRI's. If things change, then look to do something.
cheers
Laz
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Laz:
Thanks for your informative post. Have you been reading about the new "school of thought" concerning no surgery?, and if so where? As I stated in an earlier post, some recent studies have favored radiation vs. microsurgery. Luckily I do not have to make my decision so quickly. thanks again for your response.
Evan
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Just wanted to chime in that while Stanford has a superb track record in radiosurgery, so does Johns Hopkins, and it's a lot closer to New York. They do surgery and radiosurgery. And as Fred said, if you keep reading on medline or pubmed.gov, you will find a number of recent studies that say the same thing as the one you cited from the Journal of Neurosurgery. Full disclosure--I had radiosurgery six weeks ago, no side effects so far, back to work the next day.
Mac
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Hi evan and welcome.
As I tried to become the best "educated" patient I could be, I checked into all radio-surgery options (with the guidance of my brain neurosurgeon at Brigham/Woman's, who actually told me she didn't want to "cut" and go have radio-surgery done based on the size of my AN) as the metro Boston/NE area offers all forms of radiation for AN's.
I checked into Proton but could not find enough data to support its efficacy. Cost was also extreme.
Novalis/FSR... they did option me for a 30-day dose and knocked it down to 5-day dose option for me. In researching FSR/Novalis, Novalis publically notes their accuracy of 2mm. My personal attitude was if they are going to zap my brain, I want the best accuracy I could have (I know many here that had FSR and are doing great, so don't let my personal comments affect that)
I checked into CK and GK as both are also offered locally. Both offer same accuracy of approx. .87mm-.89mm. GK of one dose, or CK (usually 3-day but mine was 5-day dose). Both were extremely viable choices for me.. and I chose CK based on more fractionated dose (vs. one dose) to help with surrounding normal brain structures and comfort of face mask. Again, just my personal choice and it has worked for me.
I am now 11 mos post CK, I have 100% of my hearing for what it was at time of treatment and MRI's are showing the radiation is on track for tumor death (necrosis).
So, for me, I chose CK but I have faith in you to become the best, educated patient you can be. I have faith in you, to do as you are, in reasearching all options. If radio-surgery is what you seek, I also recommend looking at the CK Patient support board (http://www.cyberknifesupport.org/forum/), but don't be fooled as the dr's there answer questions regarding all forms of radio-surgery, some practice GK and CK and volunteer their time to answer our questions.
Hang in there... and regardless of what you decide, I have the utmost faith in you to choose what is best for you.
Phyl
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Evan,
Phy gave you the link to the best source of information you will find. The Cyberknfe Patient Support site.
My story is: First sign of my AN was loss of balance and three days (yes, I did say 3 days) later I lost total hearing. Two weeks later diagnosed with a 1.0 cm x .7 x.7. I decided to take my time. Neurotologist was pushing for local surgery. I did not even consider radiation at that time because I contacted HEI and was impressed with the experience. They also told me radiation was a big no-no.
Six months later I had my 2nd MRI and they found a cyst in the middle of it. Also had grown to 1.2 cm and changed shape. I scheduled surgery for Nov 9th 2005 with Dr. Brackmann at HEI. Due to insurance dragging feet and us just saying to heck with it we will go with cash price and worry later, the surgery was postponed. Then someone on this site emailed me and said as long as I lived in OKC why did I not check with Dr. Clinton Medbery. I went to the Cyberknife site and ask a couple of questions then email him personally. He is a radiation oncologist, and medical oncologist and listed as one of the top 100 doctors in the US and has been for 7 years. I submitted my MRI to him and the were presented to a board of specialists. All said I was a candidate for radiation or surgery.
Next I went to a Neurosurgeon who does Surgery, Gamma Knife and Cyberknife. She said any way was fine. When I ask her if it she had my exact AN what would she do. She said radiation in a heart beat. Facial paralysis is almost non exhistant. No dry eye and no lost work time. However, do what I was comfortable. Wow, big change from the two neurotologist and consult with HEI. I ask about malignant transformation that I was warned about. She said there are about 6 known cases of AN's turning to cancer and it is divided 50/50 among surgery and radiation. Then I ask about regrowth. She said there is a less than 1% difference in regrowth between surgery and radiation and the gap is closing fast. In her opinion surgery may soon be a thing of the past for smaller AN's.
I had CK Jan 2006. The AN had grown to 1.4 cm in 9 months. Treatment was great. Those who followed my story know I went to lunch and shopping after the first two treatments and to celebrate on the 3rd and finial day went to the casino.
My AN was very close to the facial nerve and I had numbness before treatment. Now a year later that is about 99% gone. Some small balance issues. I am back to riding my horses and just painted our library with 12 foot ceilings on a very tall ladder. As time goes by, symptoms grow less. At my one year MRI the tumor is 1.1 cm x .5 and has necrosis in the center. I did not have hearing before the treatment and don't now. I did choose fractionated over on dose CK. I was allowed to chose. I understand hearing preservation is truly great with this. I am in contact with three other people that had CK here and all have retained hearing if they had it before. One is the husband of a co-worker He changed his mind about radiation after an appointment with my neurosurgeon. He went on a cruise two weeks after treatment and did very well. He worked half days while undergoing treatment.
You will find both doctors who post on the Ck site will not try to make you one of their patients. If you email Dr. Medbery personally he will answer. He was in France when I kept emailing him with pre-treatment questions.
Good luck with what ever treatment you chose. I can only speak from my experience. I was scared to death of the surgery and am now very glad I was. Love that insurance company. Thank God they messed up.
Sandy
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I just want to thank all of you for all of your kind words, advice, personal experiences etc. Today, I contacted via email, Dr. Adler at Stanford, Dr. Sisti at Columbia (he does both Radiosurgery and microsurgery) and the team at John's Hopkins. These doctors are amazing. Dr. Adler called me back personally on my cell phone and we had a wonderful 10 minute conversation. I understand that he has a vested interest in using his Cyberknife, but he is a doctor, and I have to believe he does care about the outcomes. Dr. Sisti wrote me back personally discussing both microsurgery and radiation since he does both and tomorrow I am going to make an appointment with him. Johns Hopkins also emailed me back immediately.
For all of you who have considered both, from the research I have done, it does not look like there are significant differences in outcomes between radiation and microsurgery. Of course a lot depends on the size of the tumor, symptoms, and location, but whatever studies are out there are pretty even between the two. I know we would all love for doctors to tell us that radiation is the best, but that may not always be the case. I do think however, that with any relatively new procedure (radiation vs. surgery), the people who have been doing resections will lean towards that. But it is tough to dispute whatever studies are out there at this time.
The only question that remains is what happens in 20, 30 or 40 years. Since I am 53, I will take my shot at 40 years right now. Anyway, I thought I would share this information with you, especially with regard to the manner in which these doctors have responded. I am truly astounded.
Evan
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Here are the results of my research. I had my first tumor removed 20 years ago by Dr House. I thought it was all removed but apparently a small cell remained. A very rare occurence. The only complication from the surgery was loss of hearing which I knew about going in. I was back to work in a month. The first few days of recovery from surgery were miserable but i felt fortunate to have had such good care and a quick recovery. The loss of hearing has been a nuicance but not a huge deal.
I discovered in december that my current tumor is 2.8 cm. It was 3 cm 20 years ago when i had it removed. I consulted with a local surgeon and he found i have no neurological symptons at this time. he discussed in detail both radiation and surgery options. He is considered the best neurosurgeon in my town. he said that he would not do the surgery and wanted me to see someone who has more experince, expecially experience with a reoccurence. My tumor is at the high end of acceptable size for radiation so he reommended against it. he said if it was smaller, radiation should seriously be considered. He recomended i talk with a Dr Sisti in New York, at columbia I think. He went into detail about both radation and surgery options. He saif if it were smaller, he would strongly recomend radation. But not with my size.
I then talked with Dr Shwartz at House. He is the radiation specialiist at HEI. He too went into details about he pros and cons of radiatioin. In conclusion he too recomended surgery. Finally,i talked to Dr Brackmann who also reommended surgery.
So i am scheduled for sugery in April with Brackmann, Shwartz and Stefan. As far as radiation is concerned, I think that at 2.8 there is a greater risk of complications.and the risk of cancer. my research shows if it grows back, surgery will be more difficult. Yes I am dreading surgey. To preserve my facial nerves, they may leave part of the tumor so i will still not be done. The plan is to watch it and then consider radiation down the road.
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Sorry to hear about your tumor, its recurrence and its size. I did notice that you spoke to Dr. Sisti, who does both radiation and microsurgery at Columbia and I was glad to see him seriously consider both for your condition. I do think that Dr. Sisti would focus more on radiation, but he is not going to go against conventional wisdom if he truly believes you need surgery. I am sure the physicians at House will do a great job, and I am sure you will do fine yourself.
Evan
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Bruce
Please provide me with links to articles. I have scheduled my surgery but I will continue to do research and I am open minded about my decision. I just discovered this WEb Site which is wonderful. I have an article the HEI sent me from the American Journal of Otology ( authored by Brackmann, Hitselburger, of HEI, and a Joseph Robertson.) I will re-read the article. I have also read other articles on the internet about the risks of radiation for larger size tumors. My impression from Dr Shwartz at HEI was that he would recomend radiation for smaller tumors but felt mine was at the larger end of the safe range (3 cm being the largest size). Dr Sisti also said that for smaller tumors he would recomend radiation but that for my size he would recomend surgery. I would like to get other opinions. Thanks for your help.
Jimmy
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Jimmy:
As a newbie I can empathize with you. The decision as to surgery v. radiation will be difficult. I think what you have read on here is true.....the doctors at HEI will almost always opt for Surgery v. radiation. However during my telephone conversation with Dr. Adler at Stanford (the inventor of the Cyber Knife) he did tell me that he has received his first referrals from HEI...so perhaps they are starting to realize that for some tumors, radiation may be the best way to go. I am going to see Sisti and from what I have heard, he will try to give good objective advice since he does both surgery and radiation. If you have not consulted with Drs. Sen and Costantino at Roosevelt in New York you should do that also. Finally, check out the literature published on the U. of Pitt Med Center web site re: a lot of statistics and surveys re: radiation.
Good Luck Jimmy.
Evan
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Evan, In the end only you can tell you what to do. My AN was small so my surgery went smooth. Other than single sided deafness I am basically the same. It bothers me some from time to time like when I want to kick up the stereo but I'm protecting what I have. They had to sever the hearing nerve but at least they took the whole tumor. The effects of surgery are immediate and radiation over time. The thought of having a tumor drove me nuts!! I also had these daily reminders like "arrow" ear pain. Yes, it was like someone shot an arrow in my ear. Quick & Very Painful. That is gone too. Maybe it would have resolved over time and maybe I could have accepted the tumor presence for life but today I do have relief. Relief of ear pain and relief over tumor. I still have tinnitus and the single sided deafness which was due to the fact that my tumor arised from the inferior vestibular branch closer to the hearing nerve versus the superior vestibular branch which is closer to the facial nerve. My facial was and still is perfect. No eye problems or headaches but I'm not hear to offer you a treatment course. I am here to tell my story like so many others. As far as radiation goes there is one impressive study out of Pittsburgh with 10 year follow up. The other studies between 2-5 years are not as helpful because sometimes the effects of radiation take many years. Sometimes these tumors don't even grow 2-5 years just by waiting and watching. That too is an option! I was 35 when diagnosed so 30 years from now I'm just 65. I guess i needed immediate and permanant closure. I do wish the treatment of choice meets all your expectations! Best Of Luck!
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I read all the links that Bruce sent. I am now going to dig deeper into the radiation option. The Dr from Pitt that gives the 30 minute video refers to small and medium tumors and I believe that at 2.8 cm, my tumor is at the high end of medium ( with 3cm being the beginning of large size). This is why this is such a tough decision for me. I have an article that Dr Brackmann sent me that I would like to email to anybody interested that explains why he is opposed to radiation.
EVAN - Can you provide phone numbers for Dr Sen and Constantino? I am very interested to hear how your appointment goes with Sisti. What is the size of your tumor?
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Hi Bruce...
Congratulations and many thanks for the excellent post relevant to your tremendous research and consequential brilliant info which is an invaluable A-Z reference point for anyone contemplating stereotactic radiosurgery as their proposed treatment option.
Regards
Derek
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Gotta throw my two cents in on this conversation..although I would highly recommend Radiosurgery aka, CK or GK over cutting anything ....if you are uncomfortable with the idea of radiation and the long term outcomes etc....there are other types of surgery available..even for ANs...so do not forget to look at allllll the types of treatments available...there are also many types of surgical approaches, newer and more effective means of removal with less intrusion and damage.....discuss the various types with your surgeon....and ask ask ask...how many of what type approaches has he/she done..and why that technique.....you will find that once a surgeon has mastered a particular type of approach they tend to stick with it..for obvious reasons..but there are many types of approaches available.....as well as the newer Endoscopic approach which due to type of growth..(no I am not an ANer...belong to the group anyway), CK was unfortunately not my best option....wish it was believe me...the stats on CK are overwhelming in its favor I believe, but it can be hard to research etc.....use the cyberknife research support group..great resource,,,I see Bruce has also sent you loads of info...you have to determine which works best for you...you might prefer GK..a one day treatment...etc....CK, you do several times...novalis you do 30days in a row, or you might prefer just to get it out of your head..just know that if you lean to surgery..there are different types, methods, approaches and skills used for this option too.
Good luck, keep us posted.
Ceeceek
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Ceeceek:
I agree with you. The decision can only be made by each one of us. We also have to remember that whatever "we write" on these boards, are also our personal slant depending upon our inclination and what way we read things. I have a friend, a doctor, who did some leg work for me. He spoke to a good friend of his a neurosurgeon, who does not do this surgery but who said "I think the way they generally treat it nowadays is through radiation". He then spoke to another friend, an ENT who said, "the only way to treat is correctly is through surgery". So there you have it. They both referred me to the people that I am already going to see, so they know the names in the field, but ENT's are trained in surgery, and neurosurgeons, at least these days can be trained in both.
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It is what appears to make it so typically confusing for all of us newbies.....I just wanted to make the point that there are different types of surgery just like there are differnt types of radiation treatment...seems like whenever someone on the board goes with surgery,,,they tend to just go with first type recommended..without realizing there are as many types of surgery as there are types of radiation.
Each treatment "of course" is based upon size location etc. which is part of what makes deciding difficult, as the stats are based on a very broad range.....
This site has really been a great resouce as well as the cyberknife support group. org.....the doctors answer all types of questions regarding tons of things which is really great to have an unbiased opinion....whether it be radiation, surgery, watch and wait.....etc.
The hardest part is determining alll that is available and then trying to determine which is going to be best for you..but I feel that of course, the more information one has, the better, informed, educated decision one can make. Good luck in all and keep us updated.
Ceeceek
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Evan,
Your off to a good start. This forum always gives newbies a full spectrum of facts and views. In the meantime, I have a few articles you may enjoy reading. Good Pros & Cons and helps to deeply understand treatments. I think you mentioned that you have good hearing so you can take your time. Good Luck
http://www.anseattle.org/refresradiosurg.html#anchor1529996
http://anseattle.org/prosconsframe.html
http://www.emedicine.com/ent/topic239.htm
this one i found yesterday if your deciding among GK/CK...
http://www1.wfubmc.edu/gammaknife/Gamma+Knife+vs+CyberKnife/
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Hi Evan
By now you must be suffering from AN info overload ! I know I did after my diagnosis and some days I just took a day off
from the AN research and went for a long walk . I also had very few symptoms only some hearing loss and tinnitus but otherwise I felt fine . Right from the beginning I knew that GK was my preferred choice (CK was not an option for me here in UK). At the age of 57 and looking forward to active semi retirement with lots of sailing I did not want to go through surgery and have the risk of balance problems which would have meant the end of our sailing trips . I also wanted to save what hearing I still had left which did give and still does give a fairly reasonable stereo . Also the fact that the procedure of GK is very quick with little recovery time was a factor . Apart from an episode of headpain 8 months after GK everything has been fine and my last MRI showed that the tumour was shrinking . So far no regrets about my choice of treatment . In the end only you can make the choice but lucky for you your AN is small enough giving you time to research all your options . Good luck !
Regards Kat
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Hi there,
I noted your uplink re the GK vs CK, but could not help notice that the site is sponsered by a GK based facility...there are really really alot of conflicting sites about which is more accurate etc. If you go to a CK sponsered site, you will see quite different statistics. I went by the Doctors on the cyberknife support group site, as Dr. Medbery has done extensive treatment with both....one thing I did not like about your reference site, is that its states CK is not as accurate, due to the type of headframe that is used, and that is not necesarily the case....head movement is not an issue with CK, as the machine and it is a computer guided machine, not a person programming it...that automatically adjust with head movement based upon live feed...
As I stated there are tons of sites that really conflict with information regarding the two treatments.
The best advice I got, was they both work, and it is really a matter of determining which treatment is more convenient for you......and the possiblity of fractionation for preservation of nerves,,which is still up for debate.
Good luck for all of you reading this trying to make up your mind..a lot of what will determine is where you live, whom your doctor is, whom and what you are comfortable with......the facts really really very depending on whom is sponsering the information.....and to boot, there is also novalis, peacock, fractionated gamma...not the same as GK...etc....it can really really be confusing, so sometimes it is a matter of what works for you financially, comfort wise etc. If you read the radiation section of this site, you will hear from patients whom have had lots of different types but primarily CK and or GK... that can give you a better idea of what will work best for each individual.
As for me, I like the idea of CK as if it doesnt work, you have more options afterward, but that is also a personal opinion based on equally conflicting facts....
Good luck
Ceeceek
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Ceeceek addressed several of the fallacies of the CK vs. GK web site link offered by Flyersfan68, but I would add that this particular write up from Wake Forest was discussed many months ago on this forum. The archive format is a little cumbersome to work with now, but I'm sure someone can find the link for some of the responses if they're interested, primarily from Dr. Medbery who, as Ceeceek pointed out, works with both machines.
One of the key aspects of the previous discussion was the fact that the radiation oncologist at Wake Forest is the son of a Vice president at Elektra, the manufacturer of GK. The fact that this conflict of interest is not disclosed is it's own issue, but the list of inaccuracies in the article are nothing short of a travesty. There are a number of clinical studies, not manufacturers, that refute several of the claims made in that article.
Mark
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When we think we know.....we don't.....
Last week I was diagnosed with an acoustic neuroma as per MRI which was read by a radiologist and then confirmed by an ENT. Today I went for my first consult with a well known ENT and Neurosurgeon in New York. After looking at it over and over again, and based upon my symptoms (some facial paralysis which is dissipating, and no hearing loss) they both said..."its not an acoustic neuroma". Then, what is it? Well, it could be a facial schwanoma, it could be nothing, or it could be an adenoid cystic carcinoma (the c word). They immediately set me up (today) for a PET scan which would rule out the Cancer. If turns out not to be the carcinoma, they may do nothing since they have no idea how long its been there, what it is doing, and if it is growing at all (if you remember, my symptoms started with an Ear infection, followed by fluid in my ear and then some facial paralysis). This means I could have simply had Bells Palsy and this is just an incidental finding, or it could be much worse.
My point in all of this is: No matter how much we discuss these things, no matter how much we read studies upon studies, we are not doctors. Both Dr. Costantino and Sen were wonderful. They did not alarm me, were deifinitely caring and did not talk down to me. I was part of the discussion on an equal level with them.
In addition, all of my preconceived notions of how they would react to radiation vs. surgery were just that. Neither does the radiation, but said, without hesitation that if it were not a carcinoma and if it had to be treated, that they would have absolutely no problem with radiation. They did suggest that if I were to receive radiation I should do it at U of Pitt under Lundsford (who did the huge GK 10 year study). They also said that if either one of them needed microsurgery, they would go to Brackman at House. They said that while many other doctorrs are good, there is no reason to go to Hopkins, Stanford, etc...... That may reflect some personal feelings on their part, but I felt they were simply stating facts as they "knew them".
So, in conclusion, if there is one at this time, all I want to impart to all of you (and I know I am new here and probably do not have any right to do so) is that while we should use each other as wonderful resources, while we should use our brains as wonderful resources, we should ultimately let the doctoring up to the doctors, and to try to remain calm, cool, and as objective as we can, until a professional gives us the final word. Medicine is certainly not an exact science especiallly when it comes to tumors of the head and neck, but no matter how much we know, we still do not know as much as those to whom we are placing our health and lives.
I will continue to fill you in as I continue to find out more information.
Evan
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evan,
first, I'm glad to hear you do not have an AN and can only hope for a positive outcome for you. Will keep my fingers crossed.
As for your comment:
..."we should ultimately let the doctoring up to the doctors"...
I have to respectfually disagree. As one with pancreatic cancer as well as an AN AND Chiari 1 malformation, the first thing I have learned in my medical mistrials is that ... doctors are not gawds. I must be the best, well informed patient as I can be. I actually taught my neurosurgeon (who cuts for a living) a few things about CK.... as I learned from her too about GK (which she did her internship). IMO, we must continually learn from each other and that dr's are not infallible. Just my 2 cents.
Please keep us updated on your progress.... and hope things turn out well.
Phyl
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Hi Evan
I am glad to hear that you do not have an AN after all and I really hope that you will get a definate diagnosis soon .
I am sure that you will keep us posted . On this forum we can only give an honest account about our own AN experience and the reasons why we chose a particular treatment . I think it is also equally important to report the good as well as the not so good . Sometimes this will mean a less than favourable view about the medical profession at various stages of treatment. MY biggest frustration was in the beginning where I felt that I was given a hard sell for surgery and only the negatives were discussed about
radiosurgery . You are very lucky to have a good team who are willing to discuss all the treatment options .
Good luck !
Regards Kat
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evan,
first, I'm glad to hear you do not have an AN and can only hope for a positive outcome for you. Will keep my fingers crossed.
As for your comment:
..."we should ultimately let the doctoring up to the doctors"...
I have to respectfually disagree. As one with pancreatic cancer as well as an AN AND Chiari 1 malformation, the first thing I have learned in my medical mistrials is that ... doctors are not gawds. I must be the best, well informed patient as I can be. I actually taught my neurosurgeon (who cuts for a living) a few things about CK.... as I learned from her too about GK (which she did her internship). IMO, we must continually learn from each other and that dr's are not infallible. Just my 2 cents.
Please keep us updated on your progress.... and hope things turn out well.
Phyl
Hi Phyl...
I obviously was aware of your AN and Chiari 1 condition but I was 'gobsmacked' by the revelation in your post concerning your pancreatic illness. I was not sure if that aspect had been mentioned before but I just wanted to place on record that having due regard to your own health problems I consider it truly amazing how your continual ability to empathise, encourage and placate the daily myriad of concerns and worries of others, whilst always responding with a good 'dollop' of humour, is truly outstanding and does you great credit.
Best Regards
Derek
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HI Derek,
Thank you :-*. I am overly humbled and I thank you. No, only a few around here have known as this site is dedicated to AN's and I try to keep my focus on that. I am doing well and hanging tough, all with thanks to the wonderful folks on this board.
With humbled thank you.
Phyl
evan,
first, I'm glad to hear you do not have an AN and can only hope for a positive outcome for you. Will keep my fingers crossed.
As for your comment:
..."we should ultimately let the doctoring up to the doctors"...
I have to respectfually disagree. As one with pancreatic cancer as well as an AN AND Chiari 1 malformation, the first thing I have learned in my medical mistrials is that ... doctors are not gawds. I must be the best, well informed patient as I can be. I actually taught my neurosurgeon (who cuts for a living) a few things about CK.... as I learned from her too about GK (which she did her internship). IMO, we must continually learn from each other and that dr's are not infallible. Just my 2 cents.
Please keep us updated on your progress.... and hope things turn out well.
Phyl
Hi Phyl...
I obviously was aware of your AN and Chiari 1 condition but I was 'gobsmacked' by the revelation in your post concerning your pancreatic illness. I was not sure if that aspect had been mentioned before but I just wanted to place on record that having due regard to your own health problems I consider it truly amazing how your continual ability to empathise, encourage and placate the daily myriad of concerns and worries of others, whilst always responding with a good 'dollop' of humour, is truly outstanding and does you great credit.
Best Regards
Derek
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Hey Evan,
I do not believe anyone is intentially playing Doc....but there are alot of options available and depending upon training, skill level, experience, insurance, medical based facility etc. Different Doctors have of course different opinions. I am glad you have found Dr.s whom have placed you at ease, show concern and seem knowleable enough for you. That is in the end what counts.
Unfortunatley, not all of us have had that experience with our first few opinions etc. which is how personal research has taken a life of its own.
It is ultimately an individual decision, but it is also nice to know what other people have experienced and what other options are available.
I am keeping my fingers crossed for you as well as me as we are in similar situations, however, I am not in a position of waiting....however, it certainly seems that your Dr.s are well informed, conservative on your behalf and open to all the options. You lucked out with them and they seem to have your best interest at heart.
Keep us updated.
Ceecee
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I do not want people to take my previous posts the wrong way. We should use each other and as m any resources as we can. What we should not do, in my opinion, is use the information that we obtain, and suggest to people this is the way, or not the way to go. This board is a wonderful source of information and comfort but again, we should all understand that this is what it should be about.
With my story, the PET Scan came up negative, meaning that I do not have cancer. They also had a different radiologist read the original MRI and it was his opinion that it did not look like an acoustic neuroma. Then what is it? No one knows. It could be nothing, it could be a facial neuroma or who knows what else. Since it is small, the doctor wants to wait 6 weeks, re scan me and then she whats up. If it is a facial neuroma, six weeks will make very little difference and my doc, a surgeon, said.....I am doing my job if I am able to tell a patient he does not need surgery.
One other point....I had sent the MRI films and report to Dr. Adler at Stanford. He callled me back immediately and said that radiation was the answer with such a small acoustic neuroma. He was pleasant on the phone and it was also something I wanted to hear. My point being, that it may not be an AN afterall, and that is why we have to all be careful where we are getting and consults and info from. Adler is wonderful, but we all know he has a vested interest in the CK and even though I would love to think that doing the right medical thing is what is most important, he has his slants, as do all doctors. I think that is why when we are exploring our options and looking for docs, it is extremely important that we find docs that will tell us the way it is, not just what we want to hear and not just what they may be trained to do. I was lucky in finding Dr. Sen and Costantino, who are well regarded, and busy, but who, to m e, felt like they were treating me as they would another family member.
Anyway, I just wanted to share with you that information, and again, my point to all of this is to educate myself and to share with others what I am learning so that it could help others. What will happen with me is anyone's guess, but whatever it is, I will continue to provide the information that I am receiving so that it could help others.
Evan
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I am really glad that you do not have cancer, and as you said the growth may very well be incidental so that is great news. Since your doctors perform both radiation and surgery (or are open to both ideas) it is a great way to get an opinion. As you have found out, there are lots of them out there. In the meantime, hopefully in six weeks, the growth will be no different, your palsy symptoms will have abated and you will not have to do anything..best approach possible.
I do not believe anyone took your comments the wrong way..by the way, we all realize that when typing, inflection is hard to emphasize so no worry.
Keep us informed, we are all waiting with you on that six week mark. Good luck and keep us posted
Ceecee
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Thanks Ceeceek:
Even though I complete trust my docs, I had already made a consult appt. with Dr. Sisti at Columbia. I am going to bring my films with me on Thursday and just have him look at them, without letting him know what transpired last week with my Pet and consult with Drs. Sen and Costantino. It will be interesting to see what he says, and I will let everyone know.
Evan
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Hi everyone,
I am brand new to this forum (3/19/07) and was diagnosed with AN on 3/10/07. I went to my primary care doctor complaining about some minor loss of facial control on right side of my face and some minor ringing in the ears. He immediately sent me to get the MRI, and hence the diagnosis on 3/10/07. Was told that my AN is 9mm (I still need to get the other dimensions). I have been to one "head and neck specialist" already who pretty much told me that I should remove the tumor as soon as possible, but he wanted me to consult with another specialist to get another opinion. I have to respect a dr. who recommends a 2nd opinion.
After the initial shock of the diagnosis wore off, I started researching AN on the net, and came across this forum. I really appreciate everyone's comments and true willingness to help other people in the same situation. I don't know where my journey will end at this point, because I am still in "investigation/research" mode. I'm not even close to knowing enough to decide the correct treatment option. I will know more after the consultation with the additional specialist. I am going to stay optimistic at this point because I believe my tumor is relatively small at this time so I don't feel like I have to rush into a decision on treatment (but on the pessimistic side, I am showing facial paralysis symptoms already).
I do have some preliminary questions that hopefully people can answer:
1. For those people who had surgery option, do you still have ringing in your ears?
2. Same question for those of you who had the CK/GK treatments?
3. Does surgery always result in total hearing loss on the affected side?
I hope to be a contributor to this forum going forward, so stay tuned......
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Doogey:
I will just relate what happened to me and hopefully that will give you some guidance. I had an ear infection, followed by fluid in my ears and then followed by some facial paralysis. I had little or no hearing loss. My MRI showed something "most likely an AN", of about 1.5 cm x 1 cm x .5. I did a lot of research on line and thought that I would be a good candidate for radiation. When I had my first consult last week, my ENT and Neurosurgeon, in looking at my MRI and my symptom history, both said that it did not look like or sound like an acoustic neuroma. While it could be a facial neuroma, they were not sure, so they scheduled me for a PET scan to rule out an adenoid cystic carcinoma (cancer). Fortunately that came back negative, so on Friday, my ENT and neurosurgeon both felt that I should wait six weeks, get re scanned and then see what happens. They clearly did not want to rush into any treatment whether it was radiation or surgery. What concerned them, was the symptom pattern. It appears as if you have some facial paralysis first, which could come from a facial neuroma, AN, or even a Bells Palsy (symptoms following an insult to the auditory canal and the 8th crainial nerve).
Since AN's grow very slowly, I like the idea of taking it slow, getting several consults and then determining what option is best for you. As my surgeon said to me. "The best advice that I can give anyone is that they do not need surgery". Thats the kind of doctor I like.
Please keep us informed, and continue to write and ask questions.
Evan
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I do have some preliminary questions that hopefully people can answer:
1. For those people who had surgery option, do you still have ringing in your ears?
2. Same question for those of you who had the CK/GK treatments?
3. Does surgery always result in total hearing loss on the affected side?
I'll try to answer a couple of your questions.
1) It's highly unlikely, though not impossible, that surgically removing an AN will eliminate the tinnitus. I believe most surgical patients report the tinnitus stays about the same, though there are some that report an increase or decrease. I don't know of anyone who had it completely go away, though I won't claim to know every AN case out there! ;) Peronally, my tinnitus changed quality post-op, but not intensity. Hw your tinnitus will react is impossible to predict since we all have such individual reactions to the various forms of treatment.
2) Can't answer, as I didn't have radiation.
3) Traditionally, there are three surgical approaches to remove ANs - translab, middle fossa, and Retrosigmoid/Sub-occipital. Translab will destroy all hearing b/c the acoustic nerve is removed - this is the approach I had, but my hearing was 90% gone pre-op anyway. The other two approaches can try to preserve hearing - you can find the statistics on that online. Radiation is also a good option for preserving hearing.
Your AN is small. Please don't feel rushed into anything. You have lots of time to research and decide what you want to do. Watch-and-wait is also a valid option to discuss with your doctors. One of the keys, I think, is to find a doctor who has dealt with hundreds of ANs - they're rare enough that not every physician or specialist has a lot of experience with these things.
Where are you? Maybe someone here can direct you towards a doctor in your area with lots of experience.
Katie
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Hi Doogey
I can only answer question 2 since I have only had GK . As a result there has not been any change to the volume of tinnitus or any change to hearing since my GK nearly 23 months ago. All in all so far so good .
Good luck with your research
Regards Kat
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Thanks Evan (and thank you for the private message also).
Like I said, this forum is a breath of fresh air for me, even though after only about 5 days of monitoring the posts, I now feel like I have information overload. So much to research and to digest! I am in the process of scheduling my first consult with a local doctor here in Dallas, so I am staying optimistic until that consult is completed. As of this time, I am not positive on whether I officially have an AN or a facial neuroma....I guess there's not much difference in that they are both tumors, but classified as such based on the nerve that is most affected.
I do have another general question for the forum. I do plan to get multiple consults from some of the doctors that I have seen listed in these posts. Are people finding that these experts will consult for free? If not, are people finding that their insurance will pay for multiple consults?
And, one last question (for now anyway), how do I get a copy of my MRI so that I can send it to these additional experts for review and consultations? Can the MRI lab e-mail the pictures, or do they have to produce physical films to send? I guess I need to get copies of my MRI's before heading down the path of additional consults.
OK, I fibbed about being the last question.....does anyone know a very good expert here in the Dallas/Fort Worth Texas area that would be a good consult?
Thanks everyone.
Jeff (aka doogey)
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Hi Jeff,
I know that Dr. Clinton Medbery in Oklahoma City (on the CK Patient Support website: http://www.cyberknifesupport.org/forum/) will do a free consult. His expertise is with GammaKnife and Cyberknife, as he performs both. I do believe that Dr. Spunberg (also on the CK Support board) in Florida, will also do a free consult. I know Dr. Brackmann of the House Ear Institute in CA (LA) for a microsurgical opinion will also do a free consult. I believe if you have all of your films burned on a CD and sent to them, they will all consult (from all angles) for you.
I hope that helps.
Phyl
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Jeff
Dr. Spunberg in Fl (info for contact on cyberknife support group site) will also be happy to look at films...I believe Dr. Feilds at orlandoneurosugery will also do free consult..although, he is out of town for next week or so......he did not charge me and another member, Also, Pittsburgh will also, and if you look at medlineplus videos, they have several referneces to Hospitals and Dr. in the Texas area.
You will need to get a CD version of your MRI and CT scan if you have one....a CT is important film as well, then you can make your own copies and send them wherever you need. Most MRI facilities have capability of making a CD, if yours does not, you can request for copies but typcially they will only give you one set, and you will have to pay out of pocket for additional films. Depending upon the MRI center, the request will either need to come from you or your Dr. that requested the MRI to begin with. Generally I have found through past experiences to always request copies of everything from everyone, including consultation report. The Dr.s offices do not care for this but they have to by law comply, and I have found it to be invaluable in general in particular in this situtation.
You have several options available and another member mentioned the types of surgery available but forgot one....endoscopic approach is becomming more common and I would check that out as well. Skull Base Institute has a wonderful website and if you use thier library it has animated and real film of various proceedures to give you some clue.
Of course alot depends upon where and what and the size etc of your growth and technically a AN is a schwanomma, they are just typcially called acoustic neuromas but are actually a vestiblar schwanomma, and you are correct in that they are more or less the same thing, just growing upon different nerve endings.
How they are classified depends upon several factors such as location, formation of growth such as defined borders, shape etc....If your growth is in a common spot and can be really determined to be a schwanomma, just by looking at the films ( this is common proceedure diagnosis by the way ) you may be a great candidate for one of the various types of radation treatment.
As you can see there are lots of options available, so get your copies, get more than one opinion, read up and then decide what works best for you.
Ceeceek
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I know there has been a lot of talk about endoscopic procedures and I know that it is being used more frequently than it has in the past. I also know that Jerseygirl (Eve) is going to have Endoscopy done sometime in the near future. One of the things that I read about endoscopy is that while it can be wonderful in terms of recovery, less risk of damaging other nerves etc, that some doctors do not like to use it because if a problem arises, it may be more difficult for the doctor to access that area from the small incision he has made. What has been other people's research, thoughts, etc on this particular issue.
Evan
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Thank you all for giving me some additional expert doctors to add to my consult list. I'm glad to hear that some of them may be willing to offer the "free" advice. I just went over to the www.skullbaseinstitute.com and viewed their animated videos for the normal "translab" procedure as well as the newer endoscopic procedure. All I can say is "ouch"! They both look they hurt. This comes from someone (me) who has never stepped foot in a hospital before (except when my momma brought me into this world).
I am currently in the process of getting a CD made of my original MRI images, and will selectively CD's to some of the recommended experts you guys gave to me, as well as to the local neurosurgeon here in Dallas. Again, thank you all very much.
I continue to look forward to sharing my odyssey with all of you, and to continue to read your feedback.
Jeff
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Evan,
Here are my thoughts on the bleeding during the ehdoscopic surgery. First of all, an overwhelming majority of schwannomas are not very vascular as opposed to some other brain tumors and therefore present less risk of bleeding to begin with. There are a number of techniques endo neurosurgeons use to control bleeding. First of all, the endoscope carries an instrument that resects the tumor and cauterizes the small blood vessels at the same time. Secondly, an endoscope can carry other medications if necessary. In the worst possible scenario, they can administer something called factor VII. It stops bleeding as if by magic but is a very controversial drug because it can be associated with some long-term effects in a small percentage of people. It is the same drug that is given to the wounded soldiers in Iraq. It is very expensive and I do not believe it was given to anyone on our forum but correct me if I am wrong. I seriously doubt any of the endo surgeons routinely use it. I am not sure if you know it, but Dr. Sen and Constantino have a website
www.cranialbasecenter.org
where there are links to their work as described in one of the news magazine about a girl that was referred from Albany with a huge tumor somewhere deep in her brain. Drs. Sen and Constantino performed endoscopic surgery, could not stop the bleeding and administered Factor VII. The end result was beautiful. Unfortunately, they don't preform endoscopic AN removals. Let me know if you cannot find the article, it is a huge website.
If you are concerned, you can always ask a surgeon what his approach is and make sure you are satisfied with the answers. Good luck in your search and keep us posted.
Eve
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Eve:
Thank you for your comments. It is obvious you have done an extensive amount of research on the endoscopic procedures. I had asked the question because it did not seem as if was discussed a great deal, and I believe you focused on the problems and the potential solutions. Fortunately, I am not yet in the position of having to make such a decision, but for your benefit, it clearly seems as if you have done more than your fair share of homework. I hope you continue to provide us with your knowledge while you move towards your last and successful surgery.
Evan
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Right on with the info Eve,
I believe Ixta, has had endo approach at Skull Base and she can provide some great info as well. I was told by Moffit Cancer Center here in FL that they have not opted for the endo approach due to some of the mentioned problems of visualization and bleeding. I mentioned my concerns to Dr. Feilds and was told by him as well as staff at Tampa General whom is now beginning to perform endo approach, that generally bleeding is not a huge concern. As Eve stated, different types of tumors have different vascular situations which largely affects the approach in general.
In my particular case, Dr. Fields has had a pariticular type of equipment custom designed that is similar to a sand blaster, this helps with the lack of visualization as the traditional method involves a small spoon shaped scalpel and could accidentally cut through something behind the tumor itself...with the little "sandblaster" the tumor is broken into small pieces and suctioned out, if a vein or nerve is hit by the "sandblaster" they tend to tolerate it better and should not be damaged, henceforth eliminating some of the risk of lack of visualization.
I believe that this particular piece of equipment was designed by Dr. Fields and his staff when he was working at Pittsburgh.
Ceeceek
and as I have stated several times before, any surgery carries risk, with the advent and success of CK and GK which are really noninvasive, be sure to give them high consideration for treatment unless other factors are present.
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I'm back after reading a bunch of new posts.
I keep hearing about "negative symptoms" from both microsurgery and radiation therapy. I can certainly understand that surgery can have negative symptoms, and prolonged recovery periods, because it is such an invasive procedure. I have not made a decision on my course of action yet, but can anyone who has had one of the forms of radiation therapy share some thoughts with me? My questions are:
1. What kind of treatment did you undergo (CK, GK, etc)?
2. What was the size of your tumor?
3. What were your symptoms prior to the radiation treatment?
4. What are your symptoms after the radiation treatment?
5. Has the tumor shown any signs of dying (and if so, how long after the procedure)?
6. Have any of your symptoms started to go away after time?
My symptoms currently include minor tinnitus, sensitivity to loud noise on the affected side, minor loss of control of facial muscles (eyelid, lips), and occasional minor vertigo (even though I don't know if the vertigo is a symptom of the tumor, or whether it's just natural to feel somewhat "lightheaded" sometimes when getting out of a chair too fast or working out too hard). I have no hearing loss as far as I can tell at this time.
I am beginning to get concerned that the radiation treatment will actually induce more negative symptoms than I currently have.
Thanks for the input,
Jeff (aka Doogey)
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Hi Jeff,
I will answer your questions as it pertains to moi :)
1. What kind of treatment did you undergo (CK, GK, etc)? CK, 5-day/dose, total 30Gy (6Gy/day)
2. What was the size of your tumor? at time of diagnosis, 5mmx7mm, 9 mos later (at time of CK), 1cmx7mm (as you can see, mine grew heartily)
3. What were your symptoms prior to the radiation treatment? intermittent tinnitus, minor hearing loss, minor balance issues (also spurned by my Chiari 1)
4. What are your symptoms after the radiation treatment? What symptoms? ;) Actually, doing great. Minor bouts of vertigo, hearing same as it was at time of treatment (now 1 yr mark), still some balance issues (again, melded with my Chiari 1)
5. Has the tumor shown any signs of dying (and if so, how long after the procedure)? Yes, at my 8 month MRI
6. Have any of your symptoms started to go away after time? most definately. Most see me now and have no clue what I have (and am) endure
I hope this helps.
Phyl
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Hey everyone,
Update: I finally got the MRI Lab to give me a hardcopy of my MRI pictures, as well as one CD containing all of the MRI images. They did this for no cost.
But, when I asked for an additional 4 CD's they wanted $25 per CD. I asked if I could just take the CD they gave me and make my own copies on my own computer at home, and they said no. Being the engineer that I am, I thought that was a bogus answer just so they could make some cash. I have looked at the CD they gave me, and it appears that the CD contains a bunch of files that I could easily copy to another CD if I wanted to.
Question: Am I missing something here? Has anyone produced their own CD's of their MRI images? If so, what program (application) on your personal computer did you use to create the copy? I would think that you could just use the standard "Windows Explorer" program and cut and paste each file from the original to a new CD.
My concern is that I create my own copies of CD's, mail them to a doctor for consultation, only to find out that consulting doctor cannot "read" the CD for some reason.
Anyway, a penny for your thoughts and experience on this one.
Jeff (aka Doogey)
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Jeff:
25$ per CD is cheap. My MRI people wanted $100.00 per set, so I ordered one, figuring that I could copy the CD. I do not think there is any magic to it. And remember it is your MRI, you paid for it (the insurance company) and it is yours. So I do not think they can keep you from copying it. You can also get the acutal images copies as you can an x ray which may be a bit cheaper. If your doctor cannot read it somehow, then he will tell you and you can go to plan B.
Hope this helps.
Evan
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I have decided to have "conservative" surgery by Drs Brackmann and Schwartz meaning that they may leave part of the tumor if there is a risk of damaging my facial nerves. I have made this decision
based on the fact that my tumor is at the high end of the acceptable range for radiation at 2.8 cm. The best neurosurgeon in my town happens to be a friend of my brothers and he has advised me to take this action as have other surgeons who do both radiation and surgery. I appreciate all the advice on this web site and urger others to carfully explore both options. If I had a smaller tumor, I would most likely go for radiation.
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I sent a reply, but I don't think it was posted. All I was going to say is that in my opinion, you cannot go wrong with the physicians at House. More importantly, as you can see from the varied opinions and experiences that we all have had, the most important thing to do, which is what you did, is to explore all of your options, do your own research and then come to your own decision with the help of your doctors. That is exactly what you did, and as a result, you came to the right decision. All that matters is you have made the decision. It is a good lesson for all of us. While there may be different avenues, different treatment options, the only thing that matters is the decision that we each make for ourselves. You did that.
Good luck and keep us abreast of everything that occurs. I am sure you will be fine.
Evan