ANA Discussion Forum
General Category => AN Issues => Topic started by: Jwh on March 05, 2007, 08:22:42 pm
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Hi all,
Has anyone on the forum opted for a second surgery due to a regrowth? I had surgery in 2001 Retro for a 1.2 cm AN. I'm now considering Translab for a 10 mm regrowth. If you've had a similiar situation, I'd like to hear your experiences. I'm meeting with a doctor this Thursday at NYU. I've just started compiling some questions for him. Maybe you can help me make an informed decision.
Thanks!!
Jen
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Query for Phyl or Joef & Admin....
Don't know if its just my imagination?...but there seems to be an increase in the posts relevant to 'family' members reporting incidences of regrowth and predominantly following surgical excision.
Are there any stats available re percentage of regrowths or could we organise a poll amongst ourselves to indicate who has had a regrowth / continuance of growth of their AN following excision or radiosurgery / radiotherapy and work out the percentage of members just to provide some idea.
Any indicator would certainly assist avid 'wait and watchers', like myself, who are continually weighing up the odds re excision v radiosurgery / radiotherapy in the event of eventually having to decide upon one of those treatment options?
My personal perception is that a regrowth or a continuance to grow following radiosurgery / radiotherapy appears to be less common?
Just a thought!
Regards
Derek
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I have no idea on the numbers .. ???
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Great question Derek... I've gone to the powers that be (no, not my dad!) to see if there is any data that is available to answer your question. Not sure if there is but definately something that is of interest. If I hear anything back, will let you know.
Thanks!
Phyl
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Hi Jen-
I had surgery for a 1cm. in 1996 (retrosigmoid) and surgery again for a 3.2cm reocurrence in 2004 (again retrosigmoid) The sencond surgery debulked the tumor to preserve the facial nerve. I then followed up with FSR. So far so good, the tumor has not changed in size. I had already lost the hearing form the first surgery and so my first priority was perserving the facial nerve.
Jane
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*blows kiss to Jane* :-*
Hey Derek, I got a reply from the powers that be on your question. As of now, there is no data to help us with the question, but I did put a "bug" in their good ear to see if or how the data could be put together. Not sure if it's possible but they agreed that it is a very good question.
Phyl
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Thanks for your involvement and response Phyl...I will continue to 'watch this space' whilst doing my 'wait and watch'!
Regards
Derek
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Good luck Derek- keep us updated- Annie
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Hi Jen,
I had my 1st surgery 11/8/05 with the Middle Fossa procedure for a 8mm x 5mm tumor. They wanted to try to save my hearing in the left side. Unfortunately, I lost the hearing. Now 1-1/2 years later, my tumor has come back and is growing at an alarming rate, 1.5cm x 5.8mm. This time, I will be going in on 5/8/07 with the Translab procedure that will, hopefully get the whole thing out.
I do have some concerns: - Will I have problems with my facial nerve?
- Will I have problems with my balance again?
Has anyone else had this experience?
Thank you.
Linda
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Linda:
Unfortunately, no one can give you a definitive answer as to exactly what will (or will not) happen after your surgery, not even the surgeon. All anyone can do is take an 'educated guess'. Here's mine:
The facial nerve can be preserved but that requires nerve monitoring and a very skilled surgical hand.
You may have some mild balance problems but if you do, they certainly would not be severe as your brain has already adapted to single-sided hearing input.
Last year, I had retrosigmoid surgery to 'de-bulk' (hollow out) the tumor followed by FSR treatments to kill the remaining tumor DNA. This approach avoids damage to the facial nerve yet effectively destroys the tumor. To date, my radiation oncologist and neurosurgeon (teamwork!) have claimed a 100% success rate following this two-tiered procedure. Two months after my final FSR treatment, a new MRI scan showed the beginning of necrosis in the remaining tumor. I'm pleased to report that I've experienced no facial paralysis or other complications since the surgery and radiation treatments.
Based on my experience...the only kind I have....I would recommend you look into this approach rather than trust another surgeon to 'get it all' with no facial/cranial nerve damage. That doesn't always work out so well. I wish you the best as you prepare for your second AN surgery.
Jim
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When I talked with Dr. Rick Friedman at House in LA prior to my retrosigmoid surgery on 2/16/07, I asked him what the chance of the tumor coming back. He told me 1 in 1,000. There certainly does seem like quite a few posts lately have been about reoccurrence. It is my understanding that if only one cell is left, it can grow. That may be incorrect and if so, please somebody out there correct me.
It is alarming and unnerving at the same time reading these posts since I am only five weeks since surgery. I thought I was "good to go". Guess we never know.
Jean
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Jim, thank you for your response. I will take everything into consideration.
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Hi,
I had retrosigmoid Jan. 2005 and have just been told there is regrowth. Doctor recommends surgery again soon - in 6 months or so so that facial nerve won't be compromised. (hopefully) I can't believe there's a regrowth so soon. I thought maybe in years something might show up. I didn't have any problems with surgery but afraid my luck the second time around won't hold up. Any advice from regrowth patients?
Thanks
justpens
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This is truly a disturbing thread. I have regrowth as well and another poster here, Jimmyr does also.
I had middle fossa surgery originally. As posted numerous times before, my surgeon now only does translab. The other methods seem to have too many issues such as regrowth and headaches. As I understand it, middle fossa and ret... do not give the surgeon a "full view" of the tunor in a lot of cases and are less invasive than translab. But one has to weigh up the options.
I am in watch and wait mode - when and if the regrowth gets to an issue size, I will zap it with radiation treatment.
My surgeon has told me of reports out of Denmark I think that point to alarming issues with middle fossa surgery. To quote my surgeon "middle fossa surgery was the worst decision I have made in my career. I wish I never did any" Pretty strong words. I'll see if I can dig up the info.
Laz
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Jen: I opted for surgery the second time around after being "monitored" for a few years....I couldn't take the idea of it being in there and the worry of "what if". I was offered Gamma Kinfe but I wanted the surgery and hopefully I am rid of this thing for life now. After my first surgery the doctor thought he had removed it all, there was not any nerves preserved during that surgery so it is questioned how it is I ended up with the regrowth......what did it grow on? Anyway my plan is to never have a routine "screening" MRI to see if it is really gone.....it was the psych. that was being damaged by the regrowth no physical damage.
Kathleen
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I'm curious how many people had regrowth after translab surgery. It appears to me that the majority of the folks with regrowth that have chimed in have had middle fossa or retrosigmoid.
Dan
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Dan -
From what I understand, when the doc's perform the Retro there is a blind spot!! I wish I knew that before the surgery!! Now I have to have the Translab anyway......
Kathleen -
If I understand correctly, you will not have another MRI? I also hope this surgery will get that darn thing out!! I can't even believe I'm going to have to have another surgery. It doesn't seem fair.
Jen
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Jen: I have made the decision I will never have another MRI to "check" on that AN site....if there comes a time I need one for another reason I will have it but tell the radiologist and the ordering doctor I do not want to know if there is a regrowth of that tumor (also that I am only to be told the results if they find something else that requires immediate medical attention). Now of cource I say that knowing one never knows until in the situation.......after my first resection I said I would never have surgery again but that was before I had children to live for.....back then I had always said if I grew another tumor I would let it kill me before I went into surgery again.
Kathleen
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Hi Jen--I had a 1 cm rt AN removed Retrosigmoid Jan 2001--OR report said totally removed but subsequent MRIs have shown re-growth and consensus of specialists is that residual tumor WAS left. Anyway It's now around 1 cm again and Dr Barker at Mass General (Boston, MA) told me 10% chance of further damaging my weakened facial nerve if he did surgery. (I have decided to have radiation). My concern for you is that I hope you know the stas regarding this--you need to know--you certainly don't want to further damage your facial nerve!! In my case the tumor was "densely adhered" to my facial nerve so your case may be totally different.. Just please ask so you will know!!
Regards and best wishes for the best outcome!!! Mary from MA
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I had a translab surgery done 20 years ago by Dr House and Hitselberger. The tumor was 3cm and is now 2.8cm. I was told i was the 10th out of 5 or 6000 oprations at HEI. I was scheduled for surgery
on 4/10 by Dr Brackmann at HEI but my insurance company revoked my authorization for HEI at the 11th hour. My plan was to do conservative surgery, possibly leaving part of the tumor so as not to damage the facial nerves. I wish I had known 10 years ago about the possibility of a recurence as I think that Gamma Knife radiation is a strong option to be considered for smaller tumors.