Regrowth - Second Surgery Concerns & Questions

[Jwh]

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

[Derek]

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

[Joef]

I have no idea on the numbers ..   

[ppearl214]

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

[jcinma]

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

[ppearl214]

*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

[Derek]

Thanks for your involvement and response Phyl...I will continue to 'watch this space' whilst doing my 'wait and watch'!

Regards

Derek

[pearchica]

Good luck Derek- keep us updated- Annie

[puffycheeks]

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

[Jim Scott]

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

[Featofclay]

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

[puffycheeks]

Jim, thank you for your response.  I will take everything into consideration.

[justpens]

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

[Larry]

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

[Kathleen_Mc]

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