ANA Discussion Forum
Archive => Archives => Topic started by: Captain Deb on August 12, 2006, 09:06:11 pm
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OK I am totally confused (so what's new?) about this regrowth thing since there seem to be folks dealing wwith this all over the forum. I understand regrowths from radiation--but what about regrowths from surgical resection? Isn't the current protcol to take the balance nerve out with the tumor? Where does the re-growth occur? Is there still a portion of the balance nerve left in the IAC? Even after translab? On another nerve, then? These tumors are really schwann cells,which normally sheath these nerves, "gone wild." Not like cancer cells, which are like foreign invaders. Do they occurr on the "ends" of the balance nerve they left in? And, why. oh why, does my surgeon insist that I don't need an MRI till 5 years post-op? No way, Jose, I'm gettin' one this year since I used up my $2500 deductible already.
I guess I could ask my surgeon at House all this stuff, but this is easier and a lot you folks are pretty knowledgeable about this stuff.
Thanks,
Capt Deb 8)
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Captain Deb,
Actually most studies I've seen on regrowth have surgery with roughly the same or slightly worse statistics than radiation. Numbers for radiation tend to be around 2-3% whereas I've seen surgery anywhere from 2-4%. The surgery numbers for regrowth like those for facial nerve impact will vary much more dramatically than radiation due to the greater variations in sugeons ability. HEI statistics are probably higher than for docs who are doing very few AN surgery's, for example. The reason for surgical regrowth is either the surgeon simply misses part of the tumor during the dissection or more likely choses to leave part of it rather than risk damage to the facial nerve. When they do this there is an effort to "devascularize" the remaining tumor so it dies and will not grow. Obviously, the published results suggest that isn't always effective. It would be interesting to know how many surgeons do not remove it all and whether they tell the patient or not afterwards. I know at Stanford the MRI follow up protocol was the same for both treatment options. If I had surgery I certainly would have wanted to do a follow up at least every 1-2 years for a while to verify it was truly out or dead. I don't see how any surgeon can put off a follow up MRI for 5 years based on the regrowth results out there.
FWIW :)
Mark
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Deb, my surgeon took extra time to get the sticky cells off the facial nerve without damaging it a great deal. He explained beforehand at pre op that if anything had to be left behind he'd send me for radiation treatment or watch it closely. His statement at post op was something like, "We got it all but, we will watch". I have a one year MRI and will get one at 2 years and then 5 years. I declined surgery for a BAHA implant. I want to save bullets for tumors.
9 hours of surgery was a lot for 2 cm, so we know my tumor was difficult to get out completely. My other surgeon (on the team) did the debulking and took the tumor away from the brain stem. My friend, had the same surgeons. Her tumor was the same size as mine and took only 5 or 6 hours surgery, a slippery tumor.ÂÂ
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There are two essential truths here
1) no tumour is exactly the same as another - the "sticky" type is considered by surgeons
to be the hardest (and longest)
2) It is not always possible to get all of it - either its hard to tell the exact source
(we are talking cells here) - or its hard to access without doing further harm
That said a 2-4mm regrowth 12-24mths later is well within the range of
Gamma/Cyber/FSR etc etc.- and only 3-4 % (?) require attention.
Best regards
Tony
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I am so totally confused. After much reading and checking out doctors, I thought I had the best in the area. Now I am seriously thinking they knew nothing. I had trans-lab, knowing that ONLY after reading pages and pages of posts here (thank you) I asked many, many questions, both before and after the surgery and got no straight answers. I was told that it is very rare to have another AN after the surgical removal. Now I'm reading that it happens a lot.
I was told the balance issues would get better, they haven't, the dizziness would get better, it hasn't, the headaches were "in my head" duh! No reaason for them. I really thought I was a nut case. I am but that is another matter. For the first time in over a year I have felt as normal as I probably ever will. I guess that is because there is a new "norm" for AN Wonkey Heads! I tire easily (I used to be Wonder Woman) and was told that would get better. Better than what?
Capt. Deb, get the MRI. It will make you at least feel like you are more educated. I personally never want another one. I have had five since surgery.
This site has helped me more than any of you will ever know. I can honestly say that for the first time in over a year I have been thankful that I survived and actually look forward to another birthday, another wrinkle, another fall. It means I'm here and not somewhere else. Thanks to all of you.
BrendaO
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Well, you be quite welcome, Brenda,dear! And remember, balance don't come back all by itself! You gotta work at it! (my favorite soapbox issue) Same as chronic headaches don't go away by themselves--find someone to help you that specializes in headaches. Hope you can get on our group-hug call sometime--they are a lot of fun and it's great to attach a voice with a name. We have an ANA convention coming up next summer in Philly and a lot of us will get to attach a face with a voice! Where do you live?
Capt Deb
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I was told that mine kept coming back because from the direction  access to the tumor was made the surgeon couldn't see that a small piece of tumor root was being left in the misshappen IAC.  My third surgery was trans-lab. ÂÂ
After 2 years I had an MRI "just to make sure it was gone".  It was but there was something on the other side. That was in 1993 and I have been in watch and wait mode with annual MRIs since then.  In 2002 part of the IAC bone was removed in order to allow the tumor to grow unimpeded so as not to damage my hearing any more.  When I no longer have usable hearing, the tumor will be removed and an ABI installed.  My next MRI is in October.
So far, there hs been no regrowth from the translab.
Up to this point the one on the right has been growing slowly.
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Well, you be quite welcome, Brenda,dear! And remember, balance don't come back all by itself! You gotta work at it! (my favorite soapbox issue) Same as chronic headaches don't go away by themselves--find someone to help you that specializes in headaches. Hope you can get on our group-hug call sometime--they are a lot of fun and it's great to attach a voice with a name. We have an ANA convention coming up next summer in Philly and a lot of us will get to attach a face with a voice! Where do you live?
Capt Deb
I live in d***inson, Texas but am from the south of Buffalo, NY area.............. Would be great.
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ok, so brendlu lives in an unmentionable place in texas since it bleeped her city LOL
Deb I'd get an MRI before 5 years. I've had three since my surgery and I'll be a year out this month. Another one is scheduled for December. I was told if this one is clean then they'll space them out a little more.
Brendalu I was told the fatigue would get better but have recently been diagnosed with adult onset add which is why they say the fatigue hasn't gotten better. Apparently it's nothing unusual as most people have some form of add but after surgery I'm no longer able to compensate so I mentally fatigue which to me is worse than physicaly fatigue.
Def. one of these surgeries is enough! But my thought is if it's grown there once what is stopping it from doing it again? Deb I think we need a jumbie dance to keep all headaches and regrowths away! ;)
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Ogie Boogie Poodle Poo!
Headache, Regrowth, No More For You!
Inky Binky Pinky Pee!
Headache, Regrowth, No More For Me!!
(Make sure you smear yourself with that Lime Jello/motor oil mixture I mentioned in perviuos rituals.)
(Don't forget to roll in the feathers either!)
Capt Deb 8)
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Deb,
My surgeons don't want follow up MRI's for 5 years either. After 1 year I was having such bad headaches and the balance, etc, I managed to get them to do another one and a CT scan. Already some suspcious tissue but was told it can't be determined if it is scar tissue from the surgery or regrowth. Still they don't want me back for another MRI till 2009 now. If you go in and complain enough maybe exagerater your symptoms, you can get them to scheduel one. % years seems way to long to wait but they say they grow so slow there wouldn't be anything to look at. I was told before surgery it they left even one tumor cell behing ther could be regrowth. How hard is it to get every single cell? Before my surgery in researching I found people nearby that I knew indirectly that had AN surgeries. 2 of the more than once. I just hope that if it comes back I can out live it since they grow slow. I'm 47, what are my chances? Go get the MRI
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Regrowth, what a scary thought, the doc told me that they got all of it! Can you believe them? I would never mention that possiblility to Ken right now.
Capt Deb, you made me laugh! I needed that! KenJen
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It might be easier then you think to have a MRI done at your request. what worked for us was, I listed the reasons why I felt a MRI was needed, which was basically a very slow recovery along with symptoms that there didn't seem to be answers for. The Doctor at first orally refused, stating it wasn't necessary at that point in time. I then asked him to list his reasons for denial of my request for a MRI in writing. Given the two choices it was easier to order a MRI. Which by the way did show residual tumor as I suspected. And like Captn Deb I wanted it done by the end of the year to save on deductible. There we were 7pm in the evening on New Year's Eve having a MRI. gee do we know how to party or what? The bottom line is we have to be our own best advocates. We have to do what feels right.
With your yearly deductible being met for this calender year, i'd say go for it before years end.
By the way, just curious since it's been five years since Chet's last MRI what does a MRI with contrast run these days? i think five years ago it was around $2500.
best to all
Raydean
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My neurosurgeon - very experienced at removing AN tumors - told me upfront that while he hoped to get 'most' of the tumor out surgically, that some would necessarily remain and that I would need fractionalized radiation treatments a few months following the retrosigmoid approach surgery. I had the AN removal surgery on June 7th and had a very successful recovery (no nerve damage). My post-op MRI scan showed that approximately 70% of the tumor was surgically removed. I met with a radiation oncologist who claimed the fractionalized radiation method had a very high success rate and few negative side-effects. I believe him. I'm scheduled to begin the series of 30 radiation treatments sometime in September. When they are completed, I will be discharged and my neurosurgeon has informed me that he wants me to have a semi-annual MRI for a year, then an annual MRI for 5 years, perhaps 10. I told him I will, if I'm still here, as in 10 years, I would be 73 years old. We both laughed.
Raydean: An MRI with contrast runs about $5,500. in my area - southern New England. That's what Blue Cross paid for mine.
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Hey Capt.
I don't know much about regrowth in other situations, but I have all my nerves intact- including the balance nerve. My surgeon was able to remove the tumor without cutting any nerves. He said that most regrowth is seen within the first three years, and I'll get an MRI then. I have already had a few MRI's and things look good so far. I think if you can pull off getting them done it can certainly set your mind at ease.
Cheers,
Rory
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Geez, Rory, what size was your tumor and who was your surgeon!?
Capt Deb
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CaptDeb: One way to look at whether or not to have routine MRI's post-operatively is : what would you want to do if there was regrowth found? Would you want gamma knife therefor it is necessary to catch regrowth when small or would you prefer to wait unti something HAS to be done and then go for surgery again? I did not have a follow up MRI after my first surgery until 8 years post-op and the regrowth was there then but still small enough for Gamma Knife if I had wanted to go that route.
Personally after having a regrowth and going through 5 years of monitoring and thinking about how to treat it etc......I never intend on having a routine MRI again, if it grows back it can be the end of me (by the time it's big enough to harm me I'll have lived my life likely anyway), and if there is other cause for me to have an MRI I will have it and tell the doc's "don't dare tell me if there's another AN there, I don't wanna know".
Kathleen
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AAAAAAAAAAAAAAARRRRRRRRRRRRRRRRRRRR Capt Deb,
We share a common ground here. We have bot had middle fossa and have screaming headaches. Fortunately, you have not had regropwth whereas I have.
Ok, I had surgery Nov 2002. I was told (lied to) that they got all my tumour out. I scheduled annual MRI's even though I was told that i did not need one for 5 years, and at the 3.5 year mark, I was devastated (although i had an inkling) that my growth had returned. It was about 19mm and still is.
I dumped that neurosurgeon and went for the no.1 guy here in Sydney (couldn't see him the first time because he was over booked) and he is our most experienced one. He agreed for me to see him going forward and he has told me that, baseing his decision on experience and a number of overseas studies (Norway I think) that he no longer does middle fossa because of all the post op complications and the apparant high chance of growth return. He cited headaches as a major by product.
He now waits until either the growth starts to grow - trans lab or watch and wait.
He was very apologetic to me saying that he wouldn't have operated - he even suggested radiation as an option, which he doesn't do.
All in all. My next attack on my growth will be gamma knife. last resort is surgery.
Laz