ANA Discussion Forum
Treatment Options => Microsurgical Options => Topic started by: Sailfish on July 21, 2017, 01:39:50 pm
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Newbie looking for any feedback on Duke AN surgeons Dr. Cunningham and Dr. Zomorodi. Anyone have surgery with either of them?
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Wondering if you gathered any info in the last couple weeks. I'm meeting with Dr Zomorodi tomorrow, but my other would be Dr Howard Francis. This week has been a bit overwhelming for me. I'm in Durham if you want to get together and chat about ANs.
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I am in Charlotte and considering Kaylie and Zomorodi at Duke. I have been really impressed with Duke so far during my consultation. Did you receive any feedback yet on surgery experience?
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Can anyone update how their consultations went? I'm also in NC and am considering Duke/UNC options
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I did not go to UNC so I can't compare but I consulted at Duke and House (via record review/phone). I really like how Duke has been very thorough in explaining things to me, such as what each test is for and how it guides the decisions moving forward. I really like my nurse navigator. She happily answers my endless questions. She forwarded billing codes, helps with scheduling and really is so patient with me.
I figure if a Kennedy can come to Duke for brain surgery (a big deal when Teddy came here a few years back), I probably can't go wrong.
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Kgs123 - who is your Duke nurse navigator and with which surgeon is he/she with? Curious because the person I'm working with is slow to respond and has not been very proactive with my case. Can never reach her by phone and feel a little like I'm bothering her when I email questions. Thanks.
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I had consults at UNC and Duke and a phone consult with House. Decided on Duke with Drs Cunningham and Zomorodi. My surgery is scheduled for middle of October although still don't know which approach going to have - Translabyrthrine or Retrosigmoid?
All three Dr consults gave me the option of both with the definite loss of hearing with the Trans and a 30/40% chance of hearing preservation with the Retro. Almost wish I didn't have an option because I'm finding it very stressful to decide. Leaning toward the Trans because the risks and recovery time seem overall less. At the end of the day I'm more concerned about good facial nerve outcome and again the Trans approach seems to be a better option for that. That being said, I'm not completely comfortable losing my hearing in one ear. So my dilemma continues ... trying to decide which approach to take.
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My nurse coordinator is Marly and I believe she falls under the umbrella of Dr Francis (could be Dr Z). I don't try to reach her by phone much - my available times are spotty with two jobs and single parenting - so I communicate primarily by email.
What helped me the most in determining translab or RSM was Dr Z's interpretation of one of my tests. It's the electrode one where they see how your brain stem and auditory nerve are communicating. That one came back with very low signal, despite the fact that my hearing loss isn't too terribly bad right now (nor is my vestibular system affected at all currently). I was given generally around a 25-30% chance of retaining hearing, which wasn't enough for me to bank on. So I'm going translab.
I am also struggling with the thought of a lifetime of SSD, as I am only 44 years old. I'm also a special education teacher, so effective communication at my work place is critical. But reading on here about people who learn to acclimate to SSD has helped me realize I will likely do the same. I'm so thankful to have all of these other people's experiences to learn from, while also understanding that every single person's case is unique.
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Hi yes I am struggling with my choice as well. I was convinced of Translab at Duke but after talking to House I am not so sure. They offer 50% chance of saving my partial hearing with Middle Fossa but the I would have to travel to West Coast. Both teams of doctors are fantastic. I go back and forth on my preference. I don't think the outcome will be bad with either approach just a hard call.
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Interesting. House said they recommend middle fossa with a 3.2cm or am I mistaken and you're 3.2mm? Duke told me that's usually only for <1cm (and why I'm not a candidate). 50/50 are definitely odds to think about. Tough decision and I wish you peace deciding and with your decision.
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melissabreaux, I note you mentioned that your tumor is 13 mm.
Do you have many symptoms. Outside the US, that small sized tumor would be recommended for observation!
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Partial Hearing loss is my main symptom. If I want to preserve what hearing I have left then the sooner the better for Middle Fossa. Otherwise, yes watch and wait is a good option.
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Melissa, sounds like your main concern is hearing preservation. What's your current Pure Tone Average (PTA) and Speech Discrimination (SD)?
Why not monitor hearing and have MRIs every 6 months to work out if hearing is deteriorating and there is growth.
At a 50% chance of saving hearing, I'd want to see evidence of continuous hearing deterioration and growth before I would do anything.
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I am scheduled for surgery with Dr. Cunningham and Dr. Zomorodi at Duke on November 28th. My tumor is 6mm X 4mm in the right ear IAC. My ABR and VBRH tests (2/8/2016) were completely normal. I have been W&W for the past 18 months and have had three (6 month interval) MRI’s and hearing test checks. After much research, prayer, and multiple remote consults,
I have decided to schedule middle fossa approach surgery on November 28th.
I wanted to ride the W&W wave as long as I could but this little AN bugger started to affect my quality of life. Even though the tumor hasn't statistically grown, the way it is interacting with my nerves is clearly impacting me more than before. Vertigo, headaches, and ear pressure pain have escalated in recent months causing me to miss work and impacting my general quality of day to day living. Hearing has decreased to about 50% in the affected ear and is likely to continue deteriorating. I am 49 yrs old and prefer a surgical approach over radiation. I plan to private message others who are also considering or scheduled for surgery at Duke.
During the surgery, my main priority (I’m sure this is everyone’s #1 priority) is to remove the tumor in its entirety while preserving the facial nerve (though I know that some irritation may cause temporary side effects). My secondary goal is to preserve the hearing. I believe that, while undesired, I can personally live with SSD (having a brother who is SSD) non- AN related. However, if possible, Dr. Zomorodi will preserve the hearing nerve (given the small tumor size – the key factor will be how sticky the darn tumor is). I know that that preserving my right ear hearing is a statistical anomaly and might be possible but not in any way guaranteed.
I have had positive interaction via the "https://www.dukemychart.org" from both Dr. Cunningham and Dr. Zomorodi (and staff).
Despite the challenges ahead, I am pleased with my choice of surgeons and feel that the positives outweigh the negatives.
Whatever my surgical outcome is, I will persevere and adapt to the new "normal," whatever that may be…..
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I don't know anything about Duke, but Dr. Howard Francis was one of my surgeons when he was at Johns Hopkins and he is both superb technically and has wonderful bedside manner. Hopkins' loss is Duke's gain.
staypoz
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So glad to hear you say that, staypoz. I thought his bedside manner was fine but what I care about is technical skill and precision. I have my preop with him next week!
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Partial Hearing loss is my main symptom. If I want to preserve what hearing I have left then the sooner the better for Middle Fossa. Otherwise, yes watch and wait is a good option.
Sorry, long delay in getting back to the AN website. I’m 5 weeks post-op today and doing great. The results from surgery with Drs Cunningham and Zomorodi have been awesome. Melissa have you decided on Drs and surgery approach. If you want to private message me, I am more than happy to discuss my experience. I thought everyone at Duke was amazing from check in, pre-op and ICU care.
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I had Dr Francis and Dr Zomorodi for translab at Duke on 11/1/17. Both are fantastic. Dr Z removed nearly all of my tumor and kept my facial nerve intact. Dr Francis is helping me deal with some CSF leak and a second surgery this week (we debated last week but tried some more conservative approaches first).
I will tell you that Duke will make an effort to get you out the door quickly. If you feel you aren't ready, advocate for yourself. I had an awful day after the second surgery, needed to be recatheterized, still on IV and had a massive headache that the oxy wasn't touching. They switched up my meds, adding steroids, changing the paid meds and adding a low dose of nerve block. I felt better but it was only about 10-12 hours. I stayed an extra night due to my own advocating to make sure that trajectory continued.
Duke is great but they hand in reports on how quickly they get people out. So just be aware and make sure YOU are ready to go home.