ANA Discussion Forum
Pre-Treatment Options => Pre-Treatment Options => Topic started by: prwkent on February 11, 2013, 04:26:31 pm
-
I was diagnosed by MRI January 11, 2013 with 1.1 cm x.8 cm x .6cm acoustic neuroma on my left side. I am a 53-year-old woman in good health. I sought out treatment last fall for some hearing distortion, tinnitus, fullness feeling in my ear and some dizziness. (I thought I might have an inner ear infection). After visiting an internist, and then ENT I was sent for an MRI which revealed the AN. My hearing is still fairly good in my left ear; I have some dizziness and slight facial numbness. I live in New Jersey and have been researching my options over the last month. I have seen Dr. Golfinos at NYU who said that trans-lab surgery after my hearing is lost is an option, or Gamma Knife now with Dr. Kondziolka. Dr. Kondziolka believes that Gamma Knife now has the best option to preserve the hearing I have without the risks of surgery. I met with Dr. Sisti at Columbia Presbyterian who strictly recommended Gamma Knife as soon as possible. Dr. Wilkenson at House recommended Middle Fossa surgery-a perfect case. Dr. Landolfi at JFK recommended watch and scan to document growth first. My ENT seemed to favor watch and scan. My Internist was pretty adamant in doing something and not waiting. I am leaning towards Gamma Knife rather than surgery. I would rather not travel for surgery across the country because I am worried about both the severity of the surgery and subsequent follow-ups. But I have read on this forum that the House clinic is the gold standard of treatment. I personally wanted to watch and scan, but the latest data does not seem to support this. Any advice or information is appreciated. Thanks to anyone who can help me in this decision.
-
Have you met with the drs at Cornell Weill. I. Had retro surgery with them in oct and fantastic results. No significant hearing loss, no facial paralysis (slight droop after surgery which has gone away) and my dizziness and lightheaded feeling is about 90% gone now. Which was my only symptom of my AN.
The drs I used were Boockvar neurosurgeon and Brown neurotoylologist.
-
Thanks for your response! Did you consider GammaKnife and why was this surgery recommended as opposed to other approaches? I too would like to preserve hearing if possible. Ir sounds like you had a good outcome. I should probably call this group also.
-
You have already seen some of the best docs and are lucky to be in area where many of them are located. I am personally in favor of GK if thats an option over invasive surgery. But you have to form your own opinion and do what you beleive is best for you personally.
See my personal gamma knofe experience in the radiation section. I spoke to many people and docs across the county. Dr K. would have been my choice but he was not set up for insurance when I wanted to have GK.
Feel free to PM me if you would like to chat.
Good Luck!
-
Sounds like you have been doing your homework. I am 50 years old and had gamma knife at the University of Virginia on October 12, 2012. At the time I just had tinnitus in the left ear. After an MRI, it revealed the AN. Mine was 1.9 cm at the largest point. I also went to the Mayo Clinic and talked with Dr. Link. He would do surgery or gamma and after being pressed he recommended gamma if I wanted to preserve my hearing. I have lost my high pitch hearing but have 96% word recognition. So I did not want to lose my hearing. That is why I chose gamma. So far things are good. I am it seems now getting some TMJ in my jaw on the left side, but the doctor feels it is from stress.
If you have any questions, just PM me.
Cindy
-
My hearing is still fairly good in my left ear;
That's all I needed to see to vote for getting aggressive with your tumor right now.
I'm totally deaf in my AN ear and, trust me, it sucks.
Here's a couple of articles about the success of gamma knife in treating small tumors and preserving hearing.
http://emedicine.medscape.com/article/857604-overview
http://www.panarabneurosurgery.org.sa/journal/October2008/p1-10%20(551).pdf
-
Thank you for the support. I appreciate the responses. This is a confusing condition and the treatment options are so different in approach that luckily some time to research is available. I feel fortunate that it is not a life threatening situation and I can weigh the risks of the options.
-
This is a newly published article (2012) on data about 10-years after the treatment (2001). This is precisely the data one needs: 10 years after, how do things turn out?
Conclusion below: Gamma Knife surgery can preserve a high quality of life for most patients with VS who do not have symptomatic brainstem compression. Long-term follow-up is required because of the risk of delayed recurrence of VS.
Annamaria
= = = =
J Neurosurg. 2012 Dec;117 Suppl:57-62. doi: 10.3171/2012.7.GKS12783.
Long-term follow-up studies of Gamma Knife surgery with a low margin dose for vestibular schwannoma.
Sun S, Liu A.
Source
Gamma Knife Center, Beijing Neurosurgical Institute, Tiantan Hospital, Capital University of Medical Sciences, Beijing, China. ssbwyl@vip.sina.com
Abstract
OBJECT:
The aim of this study was to assess long-term clinical outcomes in patients who underwent Gamma Knife surgery (GKS) with a low margin dose-14 Gy or less-to treat vestibular schwannoma (VS) unrelated to neurofibromatosis Type II.
METHODS:
Between December 1994 and December 2001, 200 patients with VSs underwent GKS, which was performed using the Leksell Gamma Knife model B. More than 10 years of follow-up is available in these patients. One hundred ninety patients (88 male and 102 female patients) were followed up using MRI (follow-up rate 95%). The mean age of these patients was 50.6 years (range 10-77 years). Gamma Knife surgery was the primary treatment for VS in 134 cases (70.5%) and was an adjunctive management approach in 56 cases (29.5%). The median tumor margin dose was 13.0 Gy (range 6.0-14.4 Gy), and the median maximum tumor dose was 28.0 Gy (range 15.0-60.0 Gy). The median tumor volume was 3.6 cm(3) (range 0.3-27.3 cm(3)). The median duration of follow-up in these patients was 109 months (range 8-195 months).
RESULTS:
In the 190 patients, the latest follow-up MRI studies demonstrated tumor regression in 122 patients (64.2%), stable tumor in 48 patients (25.3%), and tumor enlargement in 20 patients (10.5%). The total rate of tumor control was 89.5%. Using the Kaplan-Meier method, the authors found the estimated 3-, 5-, 10-, and 15-year tumor control rates to be 95%, 93%, 86%, and 79%, respectively; and the estimated 3-, 5-, and 10-year hearing preservation rates to be 96%, 92%, and 70%, respectively. Twenty-six patients (13.7%) exhibited transient mild facial palsy or facial spasm, and 2 patients (1.1%) suffered persistent mild facial palsy. Thirty-nine patients (20.5%) had transient trigeminal neuropathy, and 5 patients (2.6%) suffered from persistent mild facial numbness. The incidence of persistent severe facial and trigeminal neuropathy was 0.0%.
CONCLUSIONS:
With a low prescribed margin dose of 14 Gy or less, GKS was confirmed to provide long-term tumor control for small to medium-sized VSs and largely to prevent cranial nerves from iatrogenic injury. Based on the findings of this study, GKS is also a reasonable option for the treatment of large, heterogeneously enhancing tumors without symptomatic brainstem compression. Gamma Knife surgery can preserve a high quality of life for most patients with VS who do not have symptomatic brainstem compression. Long-term follow-up is required because of the risk of delayed recurrence of VS.
-
I decided over the weekend to have GK. This group was valuable in so many ways helping me arrive at my decision. I weighed everything based on personal experiences of the people on this forum, information provided, and a lot of homework which was recommended by everyone here. Frankly, I could have gone eitherway in terms of surgery or radiation. Because I am facing some personal issues, I was leaning towards GK in the beginning mainly out of fear of not being able to handle the surgery alone. I found through this forum that I could have handled the surgery as so many others here have. It helped me make the decision for GK out of knowledge, not fear. I feel lucky that I have the choice to do radiation as a therapy since my AN is still small.
I think I have read almost everything written here. The yellow flag post from awhile back was moving for me. I don't know what I can give back to ANA but I will certainly be reading and writing during recovery and beyond. Thank you for sharing stories. I will have a story to share too. Hopefully a good one!
-
Glad you are coming to a decision; now it will get more peaceful for you.You will be in our prayers as you undergo treatment. Best wishes, Mil
-
This is a newly published article (2012) on data about 10-years after the treatment (2001). This is precisely the data one needs: 10 years after, how do things turn out?
Here's a link to the complete article for those who like to read all the technical stuff.
http://thejns.org/doi/pdf/10.3171/2012.7.GKS12783
-
Some time has passed, and I thought a lot about what Millie said, "peace will come now that a decision has been made." I didn't respond, waiting for the peace. And I think the peace is not there because I am not feeling good about the Gamma Knife procedure. I am all scheduled, and it's got the data, etc etc but I don't want to wait two years to know if things have worked out. I may be one of those people that need it removed. I don't want to do the surgery either, but I am looking for an easy way out via Gamma Knife. I have met a great surgeon, and my new "gut" is telling me that Gamma Knife may not give me the resolution I am seeking. Does this make sense to anyone?
-
It's no surprise that you are second guessing yourself. That happens to lots of people. Nobody can tell you that your choice is right or wrong or that changing your mind is right or wrong.
But think about it. You weighed the options, you spoke with a variety of doctors, you did a bunch of research, and you read the experiences of lots of people here.
After all that preliminary stuff something clicked and you picked GK. That's called instinct.
Remember your school days when you answered multiple choice questions. The philosophy was that you had a better chance of being right with your first choice and a better chance of being wrong if you went back and changed it.
If having to wait two years to find out if GK was successful is bothering you, it pretty much takes a couple of years to find out if surgery was successful. You've still got to have periodic MRIs. And I've read some reports of regrowth after surgery necessitating radiation or additional surgery.
It's up to you if you want to change your course.
But first I suggest you go back over everything that contributed to your GK decision and see if it still all makes sense. Then decide.
-
Thanks, I appreciate the feedback. Yes, I hear what you are saying. But sometimes in the sitting back and not reacting, that helps too. Surgery is ugly. Gamma Knife nice and clean. I am starting to think that the pendulum swings--surgery was the only option. And it was aggressive. Gamma Knife was a secondary option if you couldn't handle the surgery. Then Gamma Knife became much more mainstream. But it seems to me that if you can have surgery, the order of things would be try the surgery. If it fails, then go to radiation, not the other way around. Both tough decisions, and yes a lot of data to absorb, which although I have read, know that I am not qualified to really analyse. If I can get the tumor removed, wouldn't that be the better outcome???
-
prwkent ~
For what its worth, I underwent 'debulking' surgery on a 4.5 cm AN which essentially 'thins out' the tumor by peeling it off it in layers until it folds over on itself. The tumor's blood supply was purposely severed during the operation. Following a 90 day 'rest period' I underwent pre-planned radiation (FSR) intended to destroy the remaining tumor's ability to re-grow. The surgery was 9 hours but my AN symptoms disappeared almost immediately and I recovered quickly with no complications. Unfortunately, I went into the surgery SSD and remain that way. The radiation was 26 sessions, Monday through Friday. They lasted approximately 30 minutes each. I suffered no side effects. The total radiation I received was 27Gy.Subsequent MRI scans over the next two years indicated the beginnings of necrosis and shrinkage. This all occurred in 2006 and I have been doing great with no recurrence since then.
My neurosurgeon presented me with the surgery/radiation approach when I made it very clear that I wanted to avoid facial paralysis and its related issues. The debulking surgery avoided disturbing the facial nerve to the point of causing problems and the radiation allowed the remaining tumor's DNA to be attacked without doing damage to the facial nerve. This was taking the long way around, as it were, but worth to me. I had no real long-term complications other than a slight 'dry eye' that is inconsequential and does not affect my quality of life (blinking rapidly usually resolves any discomfort). My point is that you might consider 'debulking' surgery and follow-up radiation to ensure the best possible outcome, assuming your neurosurgeon is experienced and skillful.
Jim
-
If I can get the tumor removed, wouldn't that be the better outcome???
My opinion for the two cents that it's worth is that it wouldn't necessarily be a better outcome, it would just be a different outcome.
My options were kill the tumor with a half hour's worth of radiation (that's how long I was in the GK machine) or remove it with 7 hours of brain surgery with no guarantee of a different outcome either way.
My GK decision was a no-brainer (pun intended).
I'm no more qualified to analyze the options than any other layman so there came a time when I just put down all the data and made a decision based on my instinct and then stuck to it.
-
prwkent: I went through the same analysis you are doing. Whatever decision you make will be the right one for you. For me, I chose surgery because I was afraid of the risk that radiation would not work and that the tumor would be more difficult to remove in the subsequent surgery due to scarring of tissue from the radiation. That was one of the risk factors the doctors mentioned. There are a dozen other risk factors for either approach you take, so all of the comments made by others posting responses are completely valid.
-
Sorry--follow-up to my prior post. That wasn't the only reason I chose surgery but it was an important one. Among other reasons, I can't stand the thought of having a tumor in my head and I wanted to get it "out." Maybe that's not rational, but it was still part of my thought process.
-
Speaking of not rational thought processes, I'm still hoping to develope super powers from the radiation.
Nothing yet, darn it.
::)
-
prwkent,
In terms of finding peace I must say I did not feel that way even though I knew I had come to the right conclusion for me. I have read of numerous people on this forum finding peace after they made a treatment path decision but that is not always the case. I was quite envious of them however not everyone finds this peace. As others have stated just make sure you have done your homework (which is looks like you have!) and make the decision you feel is right for you. Best wishes.
arizonajack - I would definitely have gone with the radiation treatment if there was even a slim change of super powers! ;D
-
arizonajack--If I would have had greater certainty that I would have the same result as David Banner, I would have given radiation a shot.
-
(Dr. David Banner of the Culver Institute--not the rapper)
-
I cannot make a decision. No decision is also not the decision I want to make, and I'm getting anxiety now over this. I keep thinking that if I have the GK, things will be a lot easier for me, but will I be kicking myself over symptoms that don't resolve because the tumor swells, etc. and nothing is out or ever will be. The ear fullness and dizziness are my worst symptoms. Same with surgery. And if something goes badly, will I be kicking myself for not doing the GK.
-
Prwkent,
What you are going through is perfectly normal. It is a lot of data and a big decision.
I also think it is normal not to feel a sense of peace once you reach your decision. It is still scary. I waited for my peace to come after I choose surgery and it didn't really come until I was ready to be wheeled into surgery. For whatever reason, I knew then that I had made the right decision for me and that it was out of my hands. It was a truly calm feeling.
It sounds like you have talked to some great doctors and that either option offers a great chance at dealing with your tumor. Relax and give yourself some time to think. You have two good courses of action. Is one better than the other? Who knows, but we all had to deal with that. Whichever one you choose, it will be the right one for you.
Best wishes that you will get your feeling of peace earlier than I got mine.
Ken
-
I agree with Ken 100%. Lots of anxiety for me, too, as I wrestled with my decision. I think that's perfectly normal, and in the grand scheme of life, 2 months so far on your decision making time is not a lot of time.
-
It makes sense to me that it is difficult to feel at peace with your decision. We are fortunate to have a decision to make between two good choices. You really can't go wrong. I'm very satisfied with my choice for my particular priorities and size of tumor. I wish good things for you in your final decision.
Karen
-
I had GK today in Hackensack with Dr. Kondziolka and it was a good experience. If anyone has any questions as to the procedure feel free to chime in and I will respond.
I really appreciate everyones help and support.
-
prwkent: Congratulations on your decision. I hope things continue to go well.
-
I had GK today in Hackensack with Dr. Kondziolka and it was a good experience. If anyone has any questions as to the procedure feel free to chime in and I will respond.
I really appreciate everyones help and support.
Congratulations.
If you're like the rest of us GK alumni you'll spend the next week or so poking at your pin spots. I couldn't help it.
Reading your post suddenly reminded me of a commercial from back in the 60s or so with the line "Rack 'em back in Hackensack." Can't for the life of me remember what the commercial was for.