ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: petgroomer on January 27, 2010, 09:34:42 am
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Can someone please explain to me exactly what this procedure is and how it is performed. What outcomes they have had?
I want to explore every single option out there.
I have heard that the tumour can be cut open and cleaned out, leaving it still on the nerve. Then it will regrow in about 10 yrs. At that point they do resection and then CK. It gives you quality of life for a shorter period tho. Is this what retrosigmoid is?
Just another option I had heard of and not sure what the name of this procedure is called. If it is advised or not and if there is a certain tumour size that is not acceptable. The person who told me of this procedure had a tumour such as mine but just a little smaller.
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Rhonda ~
The ANA website has an explanation of the retrosigmoid approach to AN removal here: http://www.anausa.org/treatment_options.shtml (http://www.anausa.org/treatment_options.shtml)
A slightly more detailed explanation can be found here, on this HEI-affiliated website: http://www.acousticneuroma.org/surgical_approaches_acoustic_neuroma.htm (http://www.acousticneuroma.org/surgical_approaches_acoustic_neuroma.htm)
I'm not familiar with the retrosigmoid procedure you mentioned in your post (operate, wait for re-growth, operate again, then CK). Frankly, that seems a bit odd. Perhaps you were thinking of the procedure I had: partial resection (cutting off the tumor's blood supply and 'gutting' it) then radiation (I had FSR) to destroy the remaining tumor's DNA. My neurosurgeon used the 'retrosigmoid approach' and it was very effective. However, I'm not quite certain this is what you were referring to in your description.
Tumor size can and often does dictate the procedure used, as does location and shape of the tumor. Radiation is usually not advised on ANs larger than 3 cm, due to post-radiation swelling that can impinge on vital cranial nerves and make serious problems for the patient. Larger ANs can be operated on at almost any size. We had one member who had a 8 cm AN! A world record, I think.
I'm not sure if I've answered your questions. If not, I trust someone more knowledgeable will respond to your post. However, exploring all of your options is commendable. Just try to be certain you're getting factual information.
Jim
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I had retrosigmoid and it was not what you describe. I have never heard of a tumor being opened up and "cleaned out". My AN was removed entirely.
I have heard of debulking for larger ANs - which is what Jim Scott had. They remove as much of the AN as they can, they radiate the rest.
My only permanent side-effect of retrosigmoid is SSD (single-sided deafness).
I think the other surgical procedure you are talking about is mid-fossa but it is only done on small tumors, when you're hearing is good, and only by some doctors. Retrosigmoid and translab are the two more common surgical approaches.
Here's a link from my neurotologist's website that explains surgical approaches; hope it helps. http://www.chicagoear.com/med_info/acoustic_neuroma.htm#surgery
Jan
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I agree with Jan. I also had retrosigmoid and the tumor was completely removed. I think that what you are describing is debulking. Also like Jan my only side-effect is SSD. I think we had similar results.
Lyn
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Hi Rhonda,
I think the part where you talked about the tumor being opened and cleaned out is called a subcapsular partial resection (the tumor's "capsule" is entered and the inside of the tumor is removed). I'm having this done on 2/12/2010 - a subcapsular partial resection via the retrosigmoid approach.
Best regards,
Adam
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Wow - thanks Adam (and welcome, by the way).
I've never heard of this procedure so I hope you'll come back and fill us all in on the details after your surgery. Always nice to hear of what's new and exciting in the AN world!
Good luck with your surgery. Where are you having it done?
Lori
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Wow - thanks Adam (and welcome, by the way).
I've never heard of this procedure so I hope you'll come back and fill us all in on the details after your surgery. Always nice to hear of what's new and exciting in the AN world!
Good luck with your surgery. Where are you having it done?
Lori
Dr. Fukushima is doing my surgery at Duke Raleigh Hospital. I don't think the procedure is anything new; it's just a terminology thing. I'll be sure to share my story while I recover!
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Ah, yes, Dr. Fukushima. I remember some posts about him on the Forum a while back.
Rhonda, you might want to search on his name and read those posts.
Good luck with your surgery, Adam. Hope all goes well.
Jan
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Wow, you have quite a large AN there, petgroomer...have you gone and gotten any medical opinions yet? Usually surgeons will do retrosigmoid or middle fossa when there is a chance to save the hearing. I had always assumed that translab was done when tumors are large and saving hearing is not a priority...but I may be wrong. Anyways...I hope you get good information...that link Jim gave you does hold a lot of it!! Take care and good luck...let us know how it goes!
Jay
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Thank you all for your info!
Adam, I have searched all the opinions here and I am quite sure it is your surgery that I was speaking of.
Infact, it was Dr. Fukushima who mentioned this procedure to a Vagal Schwm friend of mine. He explained it as having a vanilla icecream cone and dipping it in chocolate. You cut open the chocolate and take out the cream. LOL Leaving the actual icream cone there. (I'm HUNGRY NOW!!!) lol
So I think Adam, that is exactly what I was asking about.
Jan, I have been in contact with Dr. F last year with my MRI's and stuff. Out of 9 surgeons who have seen my MRI's, he is the ONLY one who has said he can operate successfully. I have not jumped on that wagon as of yet because in the mean time I had learned of CK.
Of course, I am in a dilemma here in Ontario, we have no CK machines. Any surgeons who say they can operate here, have also said I will lose my voice and swallowing abilities permanently 100% (I'd be on a feeding tube, and how would I drink wine from a feeding tube??? lol) :P, plus alot of other symptoms they are not able to give me percentages on. This of course is because of the procedure they would do. I am STILL NOT giving up trying to get to the states for treatment!
Dr. F does the procedure that he says will not affect any of the surrounding nerves, howerver, the tumour will grow back. We are talking about quality of life for the time being with this procedure.
Jay, mine is a Vagal Schwannoma which grows off of the 10th cranial nerve.
Schwannoma tumours make up for 10% of tumours in the head and vagal schwannomas make up for 2.5% of that 10% so it is rare. With AN's hearing and facial paralysis of nerves are the main priority, but with Vagal Schwam's, it's the voice and swallowing. Of course along with other things since it is resting against my other 9-12th cranial nerves up in the jugular foramen.
I'm smiling tho cause,,, IT"S THE WEEKEND>> YEAHHHHH!!! :)
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Jan, I have been in contact with Dr. F last year with my MRI's and stuff. Out of 9 surgeons who have seen my MRI's, he is the ONLY one who has said he can operate successfully.
Rhonda -
be very wary of anyone - doctors included - making claims that can't be substantiated. ONLY is a very strong word in the world of ANs.
I'm also concerned about the surgery you are talking about and the fact that "the tumour will grow back". I had retrosigmoid almost 3 years ago, my AN was removed completely, and the chances that it will regrow are only 1 - 2%. Also, I have to point out that my quality of life is wonderful. Yes, I am SSD, but so are many others and it doesn't affect my qualify of life one little bit.
As far as the 10th cranial nerve goes, there are others on the Forum who had a tumor growing on the 10th cranial nerve and have used other doctors. Truthfully, they have had some issues post op, but no one (even those with an MD behind their name) can guarantee you anything 100%.
Here's a link that might interest you http://anausa.org/forum/index.php?topic=8607.0
Jan
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Jan,
I understand what you are saying. I also agree.
I'm sure what I have been told applies to my situation only. Every tumour is different and affects different ways.
Trust me, I have not decided on my course of action as of yet. But I will post as soon as I figure out what's up. :)
Again, thanks to all who answered my question and it did help me figure out what the heck the procedure was.
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Gotta love a doctor that explains surgery in terms I can really relate to! Ice cream cones! Love it!
I've heard good things about Dr. F. Didn't someone just recently post something about Canada getting GK?
I love your comment about the wine through the feeding tube! A sense of humor really helps get you through this journey!
Lori
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Canada does have GK (gamma knife), and it only has one CK (cyber knife) and that is in Quebec.
Ontario is getting two machines in the next couple of years. The hospitals don't yet have the funds raised to obtain them but are working on it. I have personally spoken to the Ottawa hospital about it (one of the hospitals getting it).
GK can only work on tumours 3 cm and under.
CK can work on tumours over 3 cm.
That is why I am not a candidate for GK.
I am in the works to STILL seeking my CK :) :) :) I am not a quitter!
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Darn
they goes my plan on hoping to get CK done in Ottawa...I was told this May but I guess the funding fell thru..ohwell....May have to make a Montreal trip for CK or Toronto for GK or go with LINAC in Ottawa....decisions decisions :(( I'll keep my fingers crossed that my next MRI shows no growth and therefore I wont do anything until it does....hopefully yrs down the road
JO
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Not falling thro,, just waiting for the funds to accumulate :)
I'm not even sure how much they have towards it, but at least it's been okay'd... and that is a start!
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While new here, I just wanted to correct Petgroomer about the availability of Gama Knives in Canada. I know there are currently at least three in Canada; one in Sherbrook, one at the Toronto Western Hospital (where I am going today for a consult) and one in Winnipeg. I also understand that there are at least two more coming to Ontario some time this year.
While I have access to one I am not sure I want to do it and that is why I am finding this board so useful.
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Was recently told that CK is coming by this June to Ottawa. Maybe sooner, like May to Hamilton
Hope that makes you feel better :)
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Sorry about that. But unfortunately none of this makes me feel better.
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YYZAN:
There is a difference between the Gamma Knife and the Cyber Knife.
Some of the amazing differences to me is that with Gamma, it cannot treat tumours over 3 cm. Cyberknife can!
Also...
Gamma knife is not repeated and I think cannot be repeated in years to come.
Cyberknife can infact be repeated.
I have the differences between the two on my TREATMENTS Page at www.vagalschwannoma.com (http://www.vagalschwannoma.com)
Phyl also posted some info on the cyberknife which I also pasted in there.
One more thing, the GAMMAKNIFE is available in those areas you mentioned, however, the CYBERKNIFE is only avail in Montreal Quebec. Plus the two machines that will be coming to Ontario. That is it for Canada.
Let me know if Anne-Marie mailed you back yet.
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I read my name, did I miss something? I was away visiting my sister in Florida, just getting caught up. Let me know how I can help.
Anne Marie
PS Yes Hamilton is getting CyberKnife in May at the Juravinski Cancer Clinic on the Hamilton Mountain
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Hey Anne-Marie:
A different Anne-Marie that has surgery again on her vagal schwannoma (it regrew). She is from Quebec.
Hope all is well... :)