Author Topic: PUTTING OFF SURGERY  (Read 4991 times)

madonal1

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PUTTING OFF SURGERY
« on: January 12, 2015, 10:48:22 am »
I have a 2.2 cm AN and I am seeing Dr. Bruce Frankel in Charleston, SC. I have a 1yr old that I would like to continue breastfeeding another year but I am scared I will have to stop for surgery if I have to stay in hospital a week. So I was going to ask him if I can wait until 2016,  but last time I saw him he said if I do not take it out it may cause permanent facial paralysis. I have five kids total so not sure what it is going to be like taking care of them after surgery.

Derek

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Re: PUTTING OFF SURGERY
« Reply #1 on: January 14, 2015, 04:25:14 pm »
Hi there 'M'...

I was diagnosed with a 2.5cm and was advised to have early excision which, following much research, I declined. Now almost 13 years later in 'watch & wait' my AN has self-reduced to 1.3cm and other than hearing loss on the affected right side which is of no problem to me, I remain symptom free. My decision to opt for 'W&W' was based upon a second professional opinion and my personal preference to remain free of invasive treatment options for as long as possible. In furtherance of maintaining my situation I am guided by a consultant in whom I have complete trust. I have regular MRI scans and enjoy a very healthy lifestyle which is well documented in the 'sticky ' thread 'Top Tips for the Watch & Wait Brigade' which you may wish to browse.

I am not aware of your AN antecedents relevant to when you were diagnosed and aspects relevant to your symptoms etc but surgical excision is a major decision which only yourself can ultimately make based upon the very best professional medical advice which you trust implicitly . Should invasive treatment be deemed absolutely necessary you may be suitable for stereotactic radiosurgery as a viable alternative.

You may also consider that a second opinion may assist you with your deliberations as it may be possible that you could continue with conservative management (W&W) for the foreseeable future which would resolve the issues concerning your situation as a nursing mother.

Very best wishes for a successful conclusion.

Regards

Derek

« Last Edit: January 14, 2015, 04:26:50 pm by Derek »
Residing UK. In 'watch & wait' since diagnosis in March 2002 with right side AN. Initially sized at 2.5cm and now self reduced to 1.3cm.
All symptoms have abated except impaired hearing on affected side which is not a problem for me.

rupert

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Re: PUTTING OFF SURGERY
« Reply #2 on: January 14, 2015, 08:38:21 pm »
Highly recommended, if possible get at least several other opinions from doctors with lots of experience with AN's.  A good doctor will not have a one sided view,  and should present you with all options and procedures available.

ampeep

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Re: PUTTING OFF SURGERY
« Reply #3 on: January 15, 2015, 08:56:51 pm »
I second the recommendations for getting other opinions.  Doctors tend to lean towards their specialty, whether it be surgery or radiation.

My choice was made easier because my neurosurgeon performs both GK and surgery.  He did not recommend surgery but suggested W&W or GK; he definitely did not rush me into making a decision.

You should take your time, as ANs are typically slow growing - do not get pressured into a rash decision. 
8/2/13 - diagnosed 1.9 CM right side; 1/13/14 - MRI it got bigger!; 2/10/14 - GK; 8/18/14 - shrinking; 8/17/15 - still shrinking, reduced symptoms

madonal1

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Re: PUTTING OFF SURGERY
« Reply #4 on: January 16, 2015, 08:25:38 am »
Thanks I know Dr. Patel is an associate of his so I may ask his opinion. I have severe hearing loss and facial numbness, some facial spasms. I am just afraid of my face being permanently paralyzed.

Mimispree

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Re: PUTTING OFF SURGERY
« Reply #5 on: January 16, 2015, 03:45:05 pm »
Wow madonal1, that's a tough situation.  A lot depends on a number of factors, like the position of your tumor.  It was suggested to me to get at least two more opinions and to seek out surgeons at a teaching hospital with a lot of experience.  The surgeons should be able to provide you with statistics on how well they do concerning facial paralysis for your type of tumor.   I sent my MRI to two different docs and I was put as ease when they all had the same opinion.  Doing homework on your diagnosis, doctors and hospital will help you to feel informed.  It definitely worked for me.

I have facial paralysis, but I have been told it will probably heal but it could take as long as two years or, of course, it may not heal.  At times it's tough, but I did what it takes for my family to keep on seeing my face, goofy or not--alive.  I have noticed that it's my family who looks at me differently:  With more kindness, love and gratitude.  My family just sees me when they look at me and I'm grateful for that. 

Honestly, the face thing isn't the hardest part of recovery for me but because it's the only one that's visible it's something with which to contend.  I kind of think the body does this so that there is a visible sign that I may need some special handling now-and-then.   

Inform yourself and your decision will be made with confidence and courage.  I'll be watching journey and keep you in my heart.
2.8cm Trigeminal Neuralgia tumor removed Translabyrinthine approach on July 31, 2014 at the University of Utah Health Center.
Dr. Clough Shelton and Dr. William Couldwell.
SSD; Right side facial paralysis; Poor right eye sight; Dizzy 24/7; Eyelid implant 02/215; Sense of humor intact.

oak1971

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Re: PUTTING OFF SURGERY
« Reply #6 on: May 30, 2015, 08:01:04 am »
M- Based on the severity of you symptoms, I would caution against putting things off too long. By all means seek out other well respected medical opinions. My sister is a specialist in breast feeding and in addition to her regular duties as an RN managing the birthing center at the hospital, she also counsels new mothers in breastfeeding. The milk can be pumped out and refrigerated so your child will not have to go without. Hope that helps.
Diagnosed left side AN 5/27/15