ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: doinoc on May 04, 2009, 11:13:21 am
-
any data of GK long term out there I can check into? How about all you GK patients here on the forum .....how long ago. what we your symtoms going in and then on the other side of treatment. And how long after did symtoms kick up again? Trying to put info list together for making a decsion. Thanks for your time
peace
Deb
-
Hi Deb,
I'm not a GK patient, but I came across this newsletter awhile back when I was researching my options. It has a summary written by one of the docs at UPMC in Pittsburgh, which probably has the most GK experience and longest follow-up data in the U.S. I think there's a bit of bias against FSR and CK, but if you're exclusively interested in GK there's a lot of info there.
http://www.irsa.org/publications/Vol9No2.pdf (http://www.irsa.org/publications/Vol9No2.pdf)
Good luck,
JB
-
Hi Deb,
I might as well post the U. of Pittsburgh link as well, it is the old standby for data on GK from the late 80's and 90's:
http://www.acousticneuroma.neurosurgery.pitt.edu/index.html
I'm another CK not GK. I think most symptoms post radiation occur in the first year, sometimes dragging out a little longer. Swellling is the big one, and JB can tell you all about that. Hey JB, haven't seen you in a while, hope it's going well.
Steve
-
There are quite a few in the forum that had GK. If my memory serves me well, GM (Gary) had GK quite a few years ago, you may want to look into his posts. Sue (from Vancouver) had GK in 2006. Several forumites went though treatment last year for relatively small ANs.
Based on my own reading from forumite stories, the results have generally been encouraging. Swelling hasn't seemed to be too much of an issue, but maybe I am wrong. (Steve mentioned JB who ir I remember well had CK). Nancy Drew had started a thread some time ago when she was researching her options about "negative GK experiences", you may want to search that too.
There are tons of links on the forum discussing the issue of long term data, this was a hot topic for the last two months or so. Kate B summarized the results of a study on hearing preservation some days ago:
http://anausa.org/forum/index.php?topic=9486.0
As Steve mentioned, Pittsburgh appears to have the most long-spanning data. Here is the abstract from one of their papers.
Here is the abstract from the article published by Pittsburgh, which includes the longest spanning study from what I can tell:
Radiosurgery of vestibular schwannomas: summary of experience in 829 cases
L. DADE LUNSFORD, M.D., AJAY NIRANJAN, M.B.B.S, M.S., JOHN C. FLICKINGER, M.D.,
ANN MAITZ, M.SC., AND DOUGLAS KONDZIOLKA, M.D., F.R.C.S.
Departments of Neurological Surgery and Radiation Oncology, The University of Pittsburgh School of
Medicine; and The University of Pittsburgh Medical Center, Pittsburgh, Pennsylvania
Object. Management options for vestibular schwannomas (VSs) have greatly expanded since the introduction of stereotactic radiosurgery. Optimal outcomes reflect long-term tumor control, preservation of cranial nerve function, and retention of quality of life. The authors review their 15-year experience. Methods. Between 1987 and 2002, some 829 patients with VSs underwent gamma knife surgery (GKS). Dose selection,
imaging, and dose planning techniques evolved between 1987 and 1992 but thereafter remained stable for 10 years. The average tumor volume was 2.5 cm3. The median margin dose to the tumor was 13 Gy (range 10–20 Gy). No patient sustained significant perioperative morbidity. The average duration of hospital stay was less than 1 day.
Unchanged hearing preservation was possible in 50 to 77% of patients (up to 90% in those with intracanalicular tumors). Facial neuropathy risks were reduced to less than 1%. Trigeminal symptoms were detected in less than 3% of patients whose tumors reached the level of the trigeminal nerve. Tumor control rates at 10 years were 97% (no additional treatment needed). Conclusions. Superior imaging, multiple isocenter volumetric conformal dose planning, and optimal precision and dose delivery contributed to the long-term success of GKS, including in those patients in whom initial microsurgery had failed. Gamma knife surgery provides a low risk, minimally invasive treatment option for patients with newly diagnosed or residual VS. Cranial nerve preservation and quality of life maintenance are possible in long-term follow up.
Marianna
-
Hi Deb,
Yes, I had GK in April of 2006. My symptoms started out slow and now I realize I was experiencing vestibular symptoms for a few years before anything else showed up. I wasn't dizzy, but there are other things that can happen with the vestibular nerve is compromised. A lot of it had to do with being a passenger in a car, which sounds strange, but is more common than you would think. Then I started with the tinnitus and the fullness in the ear and then I had numbness up by my ear, but that quickly spread. And of course, loss of hearing. After my GK, those symptoms remain, except for fullness in the ear. Thank heavens something went away! That actually happened before my GK, though. Anyway, for me, what I lost I never recouped. These are just annoyances and irritations that I am trying to learn to live with in peaceful harmony. Not always easy, but what are you gonna do? :P
All in all, I'm happy with my decision for GK, although to be honest the doctors suggested this and I just said, Okay. Sounded better to me than surgery at the time, and since I had an option to go non-invasive, I took it.
Take care and good luck,
Sue in Vancouver USA
-
Deb:
I can't give you any long-term data right now. I had been working on locating some in the past.
I found out about my AN when I had a routine hearing test in Jul 2006. I had lost 40% of my hearing in the AN ear. I decided on GK and had it in Dec 2006. My hearing was not tested before AN, but I know it had decreased some more. GK for me was essentially a breeze - no problems at all. I had my hearing tested last year; I had lost 80% of my hearing and the other 20% is distorted. So single-sided deafness is my only problem. I have not had balace or facial issues before or after GK.
I had my GK at Wake Forest in Winston-Salem NC. They are fantastic. They have been doing a lot of GKs for a long time. You can mail your MRI to them and they will call you and discuss it, at no charge. If you call Lisa, the nurse coordinator, she will talk to you about any questions you have. She is such a sweetie.
I wanted non-invasive treatment, and GK was the trick for me.
Please see all my info in my signature block.
Good luck on your decision journey. Let me know if you have any questions.
Grace
-
Deb,
Sorry I haven't posted sooner...Lately I've been on a computer all day and work and most of the time I don't even want to turn mine on when I come home.
I had GK at the University of Virginia (UVA) in 2003 for a 1.8 cm tumor (left). It grew slightly over a period of two years (this has been reported in many patients...and is normal), without any further complications from the tumor growth. My tumor is currently at 2.1 cm since 2005 and I go for yearly MRI's and hearing tests.
My symptoms going in were "crackling" sound in my left ear like someone was rolling plastic wrap between their fingers by my ear...and I failed my annual hearing test at work (I worked on helicopters at the time and had to have an annual hearing test).
My hearing is pretty much the same in my left ear as it was before the GK treatment...I still have usable hearing in the left ear...but I do have the classic "cookie bite" hearing loss. I can hear high's and low's...but I cannot hear speaking range in it.
I hope this helps...
GM (Gary)
-
Hi GM, thanks for the post. So your tumor has remained at 2.1 since 2005? I think my biggest concern with GK is my balance issues. They are my main problem (besides the hearing lost...total in AN ear....tinnitus 24/7 loud) that is affecting my daily routines and invading into my work....
Is your swelling just that swelling of a dead tumor or regrowth??
To Grace1, How big was your tumor? And I see you didn't have any balance issues before hand. My tumor as of Sept 08 was 1.6 and i'm just about to get another MRI for a 2nd consult with Dr Andrews in June at Jefferson to answer some more questions about GK before I decide. I also want a non invasive treatment I just don't know if thats my wisest choice for my particular tumor and symtoms.
Any other feedback from anyone out there will be most helpful and me most grateful...
I did consult with House Ear clinic and the suggestest surgery over GK for me.
-
Technially its the swelling of a tumor that's just hanging out. It does have signs of necrosis (sp), but I don't call it "dying" yet as it hasn't started to shrink.
Have you had a balance check? They can determine how usable your balance is in your AN ear. I've lost about 90% of balance in my AN ear. My other has compensated. I really only feel it when I running on a treadmill...
Gary
-
HI GM, i had a balance test when first diagnosed in 2002 but not since. I know its worse now. Did you have any balance problems before the GK treatment? I'm just trying to put all info together for my peace of mind when i choose. Thanks for your time,
Deb
-
It was great to see the IRSA article with its charts and stats. We need more objective (or mostly objective) data like this for decision-making. Thanks loads!!!!
-
Here was a thread with two recent studies. They both draw similar conclusions.
http://anausa.org/forum/index.php?topic=9486.0
Kate
-
My balance loss was diagnosed before my treatment, and it hasn't changed since my GK treatment.
Have you thought about having another balance test?
Gary
-
HI GM, i had a balance test when first diagnosed in 2002 but not since. I know its worse now. Did you have any balance problems before the GK treatment? I'm just trying to put all info together for my peace of mind when i choose. Thanks for your time,
Deb
Hi Deb, I'm brand new here too and am interested in your post. I was diagosed in 2003 w/1cm AN, right, and recently started having balance problems. The MRI (I had gone to every other yr) last week showed an increase to 1.5 and my doc says the time has come to make a decision (within the yr). Gamma knife or surg. My hearing is only 16% in the AN ear, so I know that's going to go, but I worry about regaining balance. Doc told me I have a better chance at improving balance with surgery.
Maybe cuz I went thru all the OMG drama 6 yrs back, I'm not that freaked out by the surgery ... or at least trying not to, but I seem to be less sure of radiation ... don't know why, with 92-98% success ??? maybe it's just the constant followup I want to shed, along with the ... "Rats, why didn't I just do the surgery?" feeling if radiation doesn't pan out well in another 5-10 yrs.
I'm curious what's going on in your mind since we're making similar decisions.
Good luck whatever you choose. :)
-
Hi Jeepers, how you hanging in there? I'm still leaning towards surgery also but i have another consult with nuerosurgeon on the 15th of June to answer a few more questions about GK. I would love the easier way out but I'm not getting enough assurance in my gut with that. I am a woman of prayer so I will know inside the right decesion for me. just weighing it all out. I'm 49 and would rather go under the kinfe now and radiate down the road if needed then the other way around. Still waiting on a few more questions to be answered. The main reason i even considered GK was becasue my hubby was ill and i couldn't count on him to take care of me after surgery and he's been out of work so I needed to work. But if GK will cause problems with my balance i won't be able to do my work anyway. I'm a hair stylist for children....need to be steady. If I come out on the other side of treatment no worse then i am now...i can live with that...its not great but I'm used to it now. Don't want to be any worse. My hubby is doing better for the time being so I think i can count on him...
Good luck to you and you decesion also. Keep in touch
Deb
-
Thanks for your post, Deb. Glad to hear the hubby is doing better. Looks like we're both in the same decision-making boat, huh? I've got an appt this Friday with the neurosurgeon who would be involved if I opt for surgery. Did you say you've met with both sides - surgeons and radiology docs? Other than the House recommendation, did anyone else tell you what their advice would be?
Unfortunately, I understand from the docs pt of view that in many/most cases there is no absolute "right" decision. When I asked Dr. Battista what his recommendation was - since he did both procedures, he said the typical, "I can't make that decision for you" as agewise (57) I was right on the border of reason to go either way. He said if I was in my 40's he would definitely recommend surg over GK. When I pressed him later in our conversation, he said if he had to choose, he would opt for surg because of my desire to rehab my balance. He said that with surg there are "short term problems, but long term improvement" over radiation. He said balance would be bad the first few weeks, then I would start to recover on my own, and then get better with physical therapy.
(sigh) Wait and see was SO much easier! :-\
-
He said that with surg there are "short term problems, but long term improvement" over radiation. He said balance would be bad the first few weeks, then I would start to recover on my own, and then get better with physical therapy.
This is generally the case. You may not even need physical therapy - I just did the vestibular exercises he gave me pre and post op and that worked well for me.
Jan
-
When I asked Dr. Battista what his recommendation was - since he did both procedures, he said the typical, "I can't make that decision for you" as agewise (57) He said that with surg there are "short term problems, but long term improvement" over radiation. He said balance would be bad the first few weeks, then I would start to recover on my own, and then get better with physical therapy.
(sigh) Wait and see was SO much easier! :-\
My understanding is that the dura in our brains change in our sixties which is why when I met with a neurosurgeon (at the time the doc was 68) said he would do radiation over surgery. But since I was 45 at the time, he said he would rec surgery.
Regarding the doc's short term problems but long term improvement comment... If he is meaning that after surgery a person "typically" heals and then knows what type of problems he/she will have to deal with within six months, then I agree. My doctors have told me that the side effects for the long haul are for the most part known in the short term. With radiation treatment, the symptoms may take up to two years to show up.. for example hearing may not be lost until the second year. In this case the short term does not always reflect the side effects for the long haul.
All the best. Once you decide on your treatment and your doctor, a heavy load will lift. It is this part of the journey which gets jumbled at times because of the great options we have as AN patients.
Kate