Author Topic: Who has had Subtotal resection?  (Read 7165 times)

basmoq

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Who has had Subtotal resection?
« on: March 09, 2009, 04:07:11 pm »
I'm researching surgical options and would like to hear from anyone who may have had a subtotal resection.

Pooter

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Re: Who has had Subtotal resection?
« Reply #1 on: March 09, 2009, 04:31:52 pm »
I've never heard of "subtotal resection" surgical option..  I've heard of the "Suboccipital approach" which is also called the retrosigmoid approach..  That's what I, and many other members here, have had.  If that's what you meant, then the story of my diagnosis, surgery, and after is located at my blog (address below). 

What exactly are you looking for?  Tell us more about your AN diagnosis..  What size?  Location?  Pre-treatment symptoms?  Etc..  We can provide you help, but we need more information..

Regards,

Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

AMD

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Re: Who has had Subtotal resection?
« Reply #2 on: March 09, 2009, 04:38:45 pm »
Subtotal typically means "less than" the entire tissue/organ being operated on.  Are you referring to an operation where only part or most of the tumor was removed, instead of all of it???   

If you mean, subocciptal/retro-sigmoid, then I maybe can answer some questions from my experience, being that is what I had done.

-Amy :)
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

nancyann

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Re: Who has had Subtotal resection?
« Reply #3 on: March 09, 2009, 04:43:34 pm »
Hi basmoq,   I'm not sure what type of operation you're talking about either.    
Please fill us in.
We do need more info to help you,  & believe me,  that's
what this forum is about,  a conglomerate of helpful,  caring people ! !

Always good thoughts,  Nancy
2.2cm length x 1.7cm width x 1.3cm  depth
retrosigmoid 6/19/06
Gold weight 7/19/06, removed 3/07
lateral tarsel strip X3
T3 procedure 11/20/07
1.6 Gm platinum weight 7/10/08
lateral canthal sling 11/14/08
Jones tube insert right inner eye 2/27/09
2.4 Gm. Platinum chain 2017
right facial paralysis

Jim Scott

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Re: Who has had Subtotal resection?
« Reply #4 on: March 10, 2009, 11:59:17 am »
Hi, bsmog - and welcome ~  :)

I assume that by 'sub-total resection' you refer to a partial removal of an acoustic neuroma. 

On June 7, 2006 I underwent a 'subtotal resection' of my large AN via the retrosigmoid approach.  According to a pre-determined plan, my neurosurgeon 'de-bulked' my AN (from 4.5 cm to about 2.5 cm) then, following a 90-day 'rest period' (his term) I underwent 26 FSR sessions to irradiate the remaining tumor.  The surgery went splendidly with no real complications and the radiation sessions were painless and uneventful.  My last MRI (7 months ago) indicated definite tumor necrosis (cell death) and minor shrinkage.  In my case, this was a very successful approach.  I trust this information is useful. 

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

basmoq

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Re: Who has had Subtotal resection?
« Reply #5 on: March 11, 2009, 09:06:51 am »
Hi, bsmog - and welcome ~  :)

I assume that by 'sub-total resection' you refer to a partial removal of an acoustic neuroma. 

On June 7, 2006 I underwent a 'subtotal resection' of my large AN via the retrosigmoid approach.  According to a pre-determined plan, my neurosurgeon 'de-bulked' my AN (from 4.5 cm to about 2.5 cm) then, following a 90-day 'rest period' (his term) I underwent 26 FSR sessions to irradiate the remaining tumor.  The surgery went splendidly with no real complications and the radiation sessions were painless and uneventful.  My last MRI (7 months ago) indicated definite tumor necrosis (cell death) and minor shrinkage.  In my case, this was a very successful approach.  I trust this information is useful. 

Jim

This is exactly what I was referring to.  How is your hearing and where did you have your procedure?  I know that the docs in Cincinnati advertise performing sub-total resections, but I haven't heard of any others and am not certain as to how prevalent the procedure is.  The idea is to spare any risk of harm to the nerve for a pt. without current hearing/vestibular impairment.  I do not have an AN, I'm a medical student at NEOUCOM and am doing preliminary research.  I'm considering several specialties and may decide to perform research into AN outcomes.  I've found this forum rather useful because my medical resources are not as personal and do not contain as much detail about medical compliance and the finer points of outcomes that cannot be placed on a graph.   

sgerrard

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Re: Who has had Subtotal resection?
« Reply #6 on: March 11, 2009, 09:18:39 am »
I have heard of doing subtotal resection to spare the facial nerve, as in Jim's case, but not for the purpose of hearing preservation. I think the notion is that if you left a bit on the hearing nerve, it would still take out the hearing function. You rather hope that the tumor is not attached to the hearing nerve in the first place, or will separate away cleanly. The facial nerve, as a motor nerve, seems to be more resilient. That is my impression, anyway.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.

Jim Scott

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Re: Who has had Subtotal resection?
« Reply #7 on: March 11, 2009, 02:35:55 pm »

This is exactly what I was referring to.  How is your hearing and where did you have your procedure?  I know that the docs in Cincinnati advertise performing sub-total resections, but I haven't heard of any others and am not certain as to how prevalent the procedure is.  The idea is to spare any risk of harm to the nerve for a pt. without current hearing/vestibular impairment.  I do not have an AN, I'm a medical student at NEOUCOM and am doing preliminary research.  I'm considering several specialties and may decide to perform research into AN outcomes.  I've found this forum rather useful because my medical resources are not as personal and do not contain as much detail about medical compliance and the finer points of outcomes that cannot be placed on a graph.

Glad to help a medical student doing research. 

The retrosigmoid approach 'de-bulking' surgery was performed by Dr. Issac Goodrich - a neurosurgeon - www.ct-neurosurg.com/ourdoctors.htm  at the Hospital of Saint Raphael in New Haven, Connecticut http://www.srhs.org/.  Unfortunately, my diagnosis was late and the AN had compressed the 8th cranial nerve causing my hearing to be  lost in my left ear, the side the AN was located.  Although the nerve was intact, my hearing has not returned in that ear and I remain SSD.  My neurosurgeon (Dr. Goodrich) worked with a radiation oncologist (Dr. John Haas - now relocated to Long island, N.Y.).  He said this procedure (for large acoustic neuromas) is proving very successful.  I can attest to that.

Jim
4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

basmoq

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Re: Who has had Subtotal resection?
« Reply #8 on: March 12, 2009, 06:59:53 am »
OK, so they were able to leave the nerve in the hopes that you would recover some hearing.  I'm sorry that you have not regained any of your hearing, I hope all goes well for you with the radiation treatments long term.  My interest is in the use of the procedure that you had done on pts. with little or no auditory/vestibular impairment with the goal of hearing preservation.  I'm trying to schedule a shadowing experience with Dr. Megerian at University Hospitals in Cleveland and will probably attend the ANA meeting this year in Chicago assuming it doesn't conflict with my peds rotation...  Are you aware of anyone else who elected for this type of procedure?  My thinking is that most surgeons would be more interested in removing the entire tumor in the hopes of not needing to perform a second operation several years down the road.  I would not be surprised if many pts. had their auditory/vestibular nerves damaged simply because the surgeon decided that they were unimportant due to the redundant nature of the balance/hearing foci of the brain and therefore erred on the side of caution with regards to the tumor.  With today's options like proton radiotherapy and GK, I would like to know if any active research is being performed on procedures like yours and what the long term outcomes are, especially in those with retained hearing post-op.  If successful, it could fundamentally change the surgical approach to ANs for some pts.  This is, of course, assuming that no one has beat me to the punch.  The biggest challenge you face in medicine is trying to delineate if someone has already thought of something and then finding out if they carried the idea through to the end with the most stringent of EBM protocols.  If not, your good to basically copy the research with the appropriate protocol modifications to either re-validate or alter the previous data.  The goal is ultimately to improve patient outcomes and satisfaction.

basmoq

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Re: Who has had Subtotal resection?
« Reply #9 on: March 12, 2009, 07:22:22 am »
as a side note, I just ordered the complete transcript from the last ANA meeting, so hopefully I can find some information to get started there.

Seal

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Re: Who has had Subtotal resection?
« Reply #10 on: March 12, 2009, 08:52:26 am »
Basmoq,

Have you investigated the endoscopic approach as well or are you limiting your research to only the sub-total resection approach that Jim had?    I ask because of your last comment: " The goal is ultimately to improve patient outcomes and satisfaction."    There has been a number of successful outcomes using this procedure, especically from the patient's point of view.    I believe the most recent would be "Highlife" who in the last week had her hearing preserved and was discharged in 48 hours.    That was the best result I have read so far both in success in it's goal of total tumor removal while still preserving the hearing. 

Steve
Diagnosed 1/14/09 - 2.4cm AN right side --- about 70% cycstic
Retrosigmoid wiih McKenna & Barker - total removal successful on April 13th. 
Issues: balance, facial & mouth numbness, hearing loss right side
Results:   numbness gone, balance is good, SSD right side. Great results.

Pooter

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Re: Who has had Subtotal resection?
« Reply #11 on: March 12, 2009, 12:26:35 pm »
I would agree that anything to improve outcomes and patient experience is better all around.  However, part of that, in my mind, is somehow improving diagnosis to begin with.  Many of those who are diagnosed with an AN come to the doctor because of hearing loss.  As we all know, by and large what is gone at the time of treatment is very likely the best you could hope to retain after treatment.  As improvement in detection rates would go a LONG way in improving outcomes because by default hearing preservation rates would go up.

Likewise, I think the Endoscopic approach shows definite potential as a surgical approach for minimally invasive, quicker than normal recovery rates, etc..  I think you should include that in your research.

Regards,
Brian
Diagnosed 4/10/08 - 3cm Right AN
12hr retrosig 5/8/08 w/Drs Vrabec and Trask in Houston, Tx
Some facial paralysis post-op but most movement is back, some tinitus.  SSD on right.
Story documented here:  http://briansbrainbooger.blogspot.com/

"I must be having fun all wrong!"  - Roger Creager

Jim Scott

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Re: Who has had Subtotal resection?
« Reply #12 on: March 12, 2009, 04:01:12 pm »
Bsmog:

FYI:  One of the primary reasons Dr. Goodrich chose the sub-total resection/radiation approach in my case was to help avoid the possibility of facial paralysis.  This was a major concern of mine.  He readily acceded to my request that he do everything possible to avoid damaging the 7th (facial) nerve, as I did not present with any significant facial nerve issues at the time of my diagnosis.  However, during surgery, it was apparent that my cochlear nerve had been compromised by the AN, although Dr. Goodrich still thought that I might regain at least some small amount of hearing ability, post-op.  Unfortunately, I did not.  Although I expect to be around for some time, at age 66, I'm not overly concerned about the long-term effects of the radiation.  My last MRI showed definite tumor necrosis and some shrinkage, that is my main concern. 

I'm sorry my case is not exactly what you were looking for but I hope another of our many members will see this thread and perhaps be able to enlighten you further on the issue of sub-total resections on acoustic neuromas with the intent of aiding hearing preservation.

Jim

4.5 cm AN diagnosed 5/06.  Retrosigmoid surgery 6/06.  Follow-up FSR completed 10/06.  Tumor shrinkage & necrosis noted on last MRI.  Life is good. 

Life is not the way it's supposed to be. It's the way it is.  The way we cope with it is what makes the difference.

AMD

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Re: Who has had Subtotal resection?
« Reply #13 on: March 13, 2009, 07:06:44 pm »
I ditto Pooter's remark as well regarding the necessity of earlier diagnosis.  I'm sure many of us would have loved to entertain the idea of knowing we had an AN prior to hearing loss and or balance issues.  That would have opened up many treatment options.

I know my neurosurgeon, Dr. Michael Pritz of Indianapolis, said that if the tumor was too attached to the facial nerve, he would then opt to leave a partial piece of tumor tissue in order to preserve my facial nerve, then use radiation therapy approach for whatever was left behind.  Using the retro-sigmoid approach, he said my hearing would have been obliterated regardless of amount of tumor removed.  (Not that my hearing was helpful in that ear to begin with), which brings us right back to to the idea of early diagnosis....

Good luck with everything...

-Amy
Left side 1.7 cm AN diagnosed 7/30/08
Misdiagnosed for 8 + years
Surgery, Sub-occipital, 11/17/2008 at Indiana University Hospital
Left SSD
Tumor much larger than expected. Facial nerves intact, but had RARE swelling resulting in brachial plexus injury and tracheostomy after surgery.

sgerrard

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Re: Who has had Subtotal resection?
« Reply #14 on: March 13, 2009, 08:03:42 pm »
My interest is in the use of the procedure that you had done on pts. with little or no auditory/vestibular impairment with the goal of hearing preservation.

My suspicion is that you will find that for many patients meeting that criteria, the option of doing only radiation is becoming more common, avoiding surgical trauma altogether. However, there are probably some cases of retro-sigmoid surgery where leaving a bit in the canal for later radiation treatment might improve the rate of hearing preservation - it would be interesting to find out.

Steve
8 mm left AN June 2007,  CK at Stanford Sept 2007.
Hearing lasted a while, but left side is deaf now.
Right side is weak too. Life is quiet.