ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: sheren on April 14, 2017, 04:17:31 pm
-
Was wondering if any of you guys had this before. I had my Translab done a year ago in LA and have been living everyday in fear that it would grow back. I don't want to go through the whole experience again as I have finally gotten back on my feet for my dancing. One of the surgeons I consulted when I got back to Singapore advised me for a GK to prevent future growing of the tumor. Any thoughts or experiences please do share (:
-
Can you provide additional information? Was the tumor removal complete, radical subtotal, or subtotal? Or if not certain of how the removal was characterized, was tumor left behind? In my case, some slivers were left on the facial nerve and brain stem as the tumor was adhesive in those places and there was no plane to dissect along. The sliver on the brain stem died and and is no longer MRI enhancing, probably because it had no blood supply. The facial nerve remnant did regrow 5 years later and I had GK in Oct 2016
My surgeon in 2011 said it was more probable than not that growth would recur, but advised against GK immediately on the remnant because regrowth was not guaranteed, nor could it be predicted when it may happen. No treatment is 100% safe, so he advised waiting until it was necessary. As it turned out I did develop complications from the GK which is rare, but not not unheard of. On Jan 24th this year I developed Grade 4 facial paralysis which has improved some in the past months, probably grade 3 at this point as I can now close my affected eye with little effort. Other symptoms remain. I also have tumor and brain swelling with edema in the brain adjacent to the tumor.
My personal preference was to wait until I knew I had regrowth before undergoing more treatment, your particular situation may be different. Did your surgeons at USC discuss GK?
-
As LakeErie said, gamma knife is done after surgery if there is regrowth. Only if you had a large tumor partially removed (debulked) woudl you do gamma knife without evidence of regrowth.
-
That is not correct. Most docs will recommend GK about 6 months after surgery to take care of any remaining bits that were left. It's a common treatment method now.
-
Rupert, I have to respectfully disagree with your statement. A study published jointly by both House and Keck School of Medicine in 2013 followed 400 AN translab patients for up to 5 years, 75 of them were near subtotal and subtotal resections. At 5 years the regrowth rates of NTR and STR removals requiring more treatment were just 2% and 10% respectively. The report's conclusion stated in part that "during the follow up period examined in this study, there was low risk of need for further treatment." Of course there may be regrowth beyond the 5 years, but apparently in 2013, neither House nor Keck believed GK was necessary following subtotals removals. All my treatment was at the Cleveland Clinic Brain Institute. My neurosurgeon is the director of the Brain Tumor Division of the Institute and co-director of the Clinic's Gamma Knife Center. He learned Gamma Knife with Lars Leksall in Sweden and has 30 years experience in radiation. The Clinic does not recommend GK after surgery until regrowth, the Clinic is a top 5 rated neurosurgery hospital.
The original poster had surgery at Keck and wrote that a doctor in her home country recommended GK. I asked OP if surgeons at Keck discussed a need for GK. If they did not, they did not believe it necessary at this time, right? I am sure some treatment centers may plan GK as follow up to subtotal removal, but my point is, not all do.
-
Sheren,
I cannot comment on whether it is common or not with translab.
I opted to have RS debulking surgery and 6 months later followed the surgery up with GK.
In my case there wasn't any regrowth. Prior to my RS we had decided that would be my tumor treatment plan.
If GK wasn't part of your original treatment plan you should definitely seek another Dr. opinion. I didn't like surgery nor GK...but I liked GK less!
From experience, GK won't eliminate the worry one has about regrowth. Some worry is natural for those of us in this club. We get a headache here or there...or we have some other symptom... naturally we wonder (worry) what could be happening.
Wishing you the best long term outcome!!!
Jet
-
Hello I thought I'd join in......I had Retro sig nov1. 5 % was left on facial nerve. I was told if there's re growth I would then need radiation. My follow up MRI did show a slight regrowth although the radiologist said the residual tumor as well as myself is trying to recover and wants another MRI in May which I'll do. My biggest fear is my recovery will push me back. Hoping there's no significant growth. I assumed after my surgery everything would be fine no paralysis no balance issues etc boy I was wrong. Anyone who is having surgery be prepared I wasn't. Yes my doctors were great I'm alive and after 5 months of physical therapy I have no problem walking but have ongoing eye problems. Getting better but it's a slow process. It's just my surgeon said no driving for 2 weeks he really meant 5 months!!!! Oh as many know I had CK first. Regrowth took 6 years. The difficulty in my surgery was the tumor was already radiated and the 5 % was tangled in the facial nerve. If I knew this would happen I would have opted for surgery initially.....maybe JLR
-
I think the general consensus is that gamma knife following surgery is only the case if you hard partial removal (debulking) with the intention of following up with radiosurgery OR you get significant regrowth following surgery.
Radiosurgery is not something to be undertaken lightly. There is nerve damage as evidenced that there are no (very little) cases of hearing preservation after 10 years. The facial nerve fares better, but if the cochlear nerve is damaged, there would be at least partial damage of the facial nerve. There are also other nerves involved. Generally radiation is something to be avoided and in the case of AN there is a chance of a malignant transformation of the tumor.
So, go for surgery or radiosurgery, however, except for very large tumors choose one.
-
I had debulking 3 months later there is regrowth having another MRI to see if small piece thst was left on facial nerve has remained stable. If not radiation will be recommended but won't that compromise my facial nerve additionally. Joan
-
Hold down a minute, I had RS surgery on a fairly big AN (~3.5 cm) due to its location (posteriorly) Dr. Sisti (Columbia presp. NY) debulked to 25-30 % of the original size. Instead of using GK as a prophylactic treatment after 6 months, he opted to wait. My good luck, the remaining remanent shrunk twice on MRI's after surgery. On the last visit (Feb. 17) he said, he is happy that he didn't opt for an aggressive treatment (GK) as I would have lost my remaining or salvageable hearing in the Right ear (surgical side). My 2 cents. ::)
-
Thanks RM, there's an important message here. MRIs are safe and convenient, so check before assuming things are growing!