Author Topic: Surgeon recommendations  (Read 1150 times)

Mlamb

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Surgeon recommendations
« on: October 31, 2017, 06:44:32 am »
Hi everyone. As I mentioned before, I am 41 and I had surgery almost 3 years ago to remove a 3cm trigeminal schwannoma at Columbia with Dr. Sisti. He was unable to remove much and left a very sizeable residual (2.8 cm)in the Meckel's Cave area. I had gamma knife April 2016 with Dr. Kondziolka. At my one year follow up my tumor was stable maybe even a tiny bit smaller. At 17 months post Gamma I started having increased sensory issues, tingling, numbness and my jawwas locking. I had another MRI which showed that the tumor appears much larger in all dimensions the largest being length at 3.4 cm. DR. K suggested I start gathering opinions from neurosurgeons in case things get worse and I need to have surgery. I met with Dr. Sen at NYU. I sent my scan to Dr. Schwartz at HOuse but I know he will be at UCSD. I am also planning on seeing DR. Keith Black at Cedars once I have my 3 month follow up MRI in December. I also sent my scans to Dr. Paul Gardner at PITT. He recommended a minimally invasive approach through the crease of the eye. That really scares me so I don't think I would go that route. Any other Drs. Anyone can recommend. This time will be third treatment dealing with this tumor and have really no room for error. Thank you all for your help.

ANSydney

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Re: Surgeon recommendations
« Reply #1 on: October 31, 2017, 03:27:18 pm »
Minimally invasive approach through the crease of the eye may sound bad, but if it involves no drilling of the skull bone, I would definitely explore more.

Mlamb

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Re: Surgeon recommendations
« Reply #2 on: October 31, 2017, 07:35:36 pm »
Dr Paul Gardner from PITT recommended this minimally invasive approach by sort of the crows feet area. He did say they would have to remove a small bit of bone. I asked if their visibility would be more limited with this approach and he said no not at all. I worry because they don't do this approach as often as open craniotomies. Since I already had a retrosigmoid craniotomy and gamma knife I don't want to do something that is kind of experimental. I will most likely visit Dr. Gardner and have a formal consult so that I am fully informed but the idea of going behind the eye really scares me. Thank you for your feedback.

ANSydney

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Re: Surgeon recommendations
« Reply #3 on: October 31, 2017, 11:21:26 pm »
The drilling appears minimal compared to drilling through the skull.

Muffin

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Re: Surgeon recommendations
« Reply #4 on: November 04, 2017, 07:02:34 am »
This sounds interesting to me.  I have never heard of this, nor was an option ever given to me to do this.  I would like to learn more. I wonder if Iowa does this......
6/10/17: Sudden Hearing Loss
9/20/17:  MRI Shows VS in R IAC Measuring 6x5x3 mm
10/18/17:  On Watch and Wait Status

Mlamb

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Re: Surgeon recommendations
« Reply #5 on: November 04, 2017, 07:41:26 am »
Dr Quinones at Mayo Clinic in Jacksonville,FL does this as well as Dr. Van Gompel at the Mayo Clinic in Rochester MN also does this approach. I asked Dr. Gardner if he's used this technique for many surgeries and what the outcome was and he said that he hasn't because the tumor has to be in an area that makes the approach from the crease of the eye the most direct approach to the tumor. He said on patients that he has used this technique the recovery is quicker a day or two in the hospital, because there isn't as much trauma to the head as with an open craniotomy. I also asked if there is less visibility to the tumor and surrounding due to the smaller hole that they are working in and Dr. Gardner also said no that visibility is the same as in an open craniotomy. I am meeting with Dr. Gardner mid December and I will get more info. I am nervous about this approach because it's not done very often and this will be a third attempt at this tumor.

alabamajane

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Re: Surgeon recommendations
« Reply #6 on: November 04, 2017, 08:57:39 am »
Just my thoughts, but I think your gut feeling about concern for this approach to an AN is probably well founded. I have not read of anyone who has used this approach in all my years on here that I can remember. That should speak volumes about its viability. That’s just me speaking,,

You are right to research it thoroughly and follow your gut feeling after doing so. Maybe you will feel differently after consulting with the doctor.

ANA recommends using very experienced teams and facilities for treatment. But you have certainly been through this before so you realize that.

I’m sorry you are still dealing with residual tumor!
Good luck,,
Jane
translab Oct 27, 2011
facial nerve graft Oct 31,2011, eyelid weight removed Oct 2013, eye closes well

BAHA surgery Oct. 2014, activated Dec. 26

ANSydney

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Re: Surgeon recommendations
« Reply #7 on: November 04, 2017, 06:33:27 pm »
Trigeminal schwannomas are located higher than vestibular schwannomas, therefore approaches that work for trigeminal schwannomas may not work for vestibular schwannomas.

Why not talk to the three patients that have already had this approach? A face-to-face meeting with each of them would give you a good indication of how good it is.


Cheryl R

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Re: Surgeon recommendations
« Reply #8 on: November 16, 2017, 01:42:12 pm »
I very much doubt it.     I had never heard of it before with all my years of going to Univ of Iowa.              Cheryl R
Right mid fossa 11-01-01
  left tumor found 5-03,so have NF2
  trans lab for right facial nerve tumor
  with nerve graft 3-23-06
   CSF leak revision surgery 4-07-06
   left mid fossa 4-17-08
   near deaf on left before surgery
   with hearing much improved .
    Univ of Iowa for all care

Zan

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Re: Surgeon recommendations
« Reply #9 on: November 19, 2017, 02:44:40 pm »
Dr Schwartz is no longer at House (I was one of his last patients there) I believe he went to San Diego. Dr Slattery at house is amazing. My tumor was on my facial nerve and he saved my face.

Sailfish

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Re: Surgeon recommendations
« Reply #10 on: November 28, 2017, 02:51:10 pm »
I am 5 weeks post-op today and strongly recommend the surgical team of Dr. Cunningham and Dr Zomorodi at Duke Raleigh. 
I had a 3.2 AN removed by them and the outcome has been fantastic. 
6/23/17  3.2cm  Facial numbness and tingling  Tinnitus 2012 
Surgery with Drs. Cunningham and Zomorodi at Duke - upcoming

SusanMC

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Re: Surgeon recommendations
« Reply #11 on: January 09, 2018, 11:28:06 pm »
Hi Mlamb - I don't know where you are with your exploration, but I highly recommend Dr. Manuel Ferreira, Chief of Neurosurgery at University of Washington Medical Center. One of his specialties is Acoustic Neuromas. I am 6 weeks out from having a 4cm tumor removed, and also have a residual tumor - they opted to leave some rather than risk further affecting the trigeminal nerve. We talked about different procedures that would be options if the tumor grows. He performs 80 AN surgeries a year, and is very experienced in the different approaches - and choosing the best approach for the situation. Best of luck to you.

JLR

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Re: Surgeon recommendations
« Reply #12 on: January 10, 2018, 08:36:56 am »
I had surgery 2016 and although I had a few complications it might have been worse if I didn't have Dr. Philip Steig, Chief Neurosurgery, NYP. Weill Cornell.

 


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