ANA Discussion Forum
Useful Information => Physicians => Topic started by: HolRora on June 14, 2017, 08:32:56 am
Hello to all, and Thank you so much for being here! I have been looking around this site sense January when I was diagnosed with a AN. I was wondering if anyone has any experience with any surgeons in the Springfield Illinois area? I have also been looking into the Chicago area and have found several great suggestions to pursue. I have already seen Dr Devin Amin and Dr Carol Bauer at SIU. They both have seen thousands and work often together. Just looking for anyone that may give some insight. Thank in advance to everyone! I have enjoyed the forum very much and am grateful to have found it!
It's a little longer drive, but I might suggest looking at the university of Iowa. I'm biased because I had a great experience there, but I think objectively they are one of the best in the country. Mostly a surgical center.
Hi HolRora and everyone,
I am in watch and wait status too, and I am also in the Central IL Area as well. I was diagnosed by and I am being followed by Dr. Ryan Porter in Champaign. He is a Neurotologist and does AN Surgery. I don't think there are any other downstate AN Surgeons other than Dr Bauer (SIU) and Dr Porter (Carle).
Right now my intent is GK when it becomes necessary, and I am pretty sure I will go to OSF Peoria at the Illinois Neurological Institute GK Center.
Glad to make acquaintance of another Illinois Member here! :D
So wonderful to meet someone in the area! At the same time, Im very sorry we had to meet under these circumstances. It's unfortunate, but I have met so many wonderful people through all this. I hope to get through it and help others in the future. Thank you both for the info! I had not yet looked into anyone out of state other then to get a second opinion from house and an appointment at Mayo. I do have an appointment with Neurology at OSF. Thinking this may not be necessary anymore so going to call to try neurosurgery. Again, Thank you so much!
Well on an update, I have seen several new surgeon's in the Chicago and St Louis areas. I have now determined that for this surgery, Springfield Illinois doctors are not trustworthy. They really need more schooling and experience before allowing them to operate on an AN. Not only did they mis-measure my tumor on multiple occasions, but they also can't read the MRI. All of the six surgeons I have seen in larger cities have said that if they had just looked at the MRI better it could have saved me six months of issues basically. It's very disappointing and most of all frustrating. I am very thankful to have found wonderful doctors! It is so important for patients to be comfortable with the surgeons they choose. Also ask questions! If they hesitate to offer information move on! As doctors it is their job and responsibility to help patients, but as patients you must advocate for yourself. Doctors are just people as well. I recommend to anyone in this area, please get multiple opinions!! Go to a larger city where they do more of these surgeries! I personally would not let Dr Devin Amin operate on anyone I love. He's bedside manner is beyond rude. He tells you nothing. If you don't ask the right questions and have knowledge you'll leave more confused then when you started. He repeatedly tried to push radiation on me as a treatment. I had to point out even before seeing other surgeons that given size plus location, radiation was a risky option. Many other surgeons agree. It also would not help the symptoms I already had. After three visits, a follow up MRI, and six months of testing he finally agreed that surgery is the best option for my case. At that point he proceeded to tell me how long the surgery was and express his negative opinions. Now that I have seen many other surgeons I am aware that my gutt was right. My favorite comment was "where did he go to medical school?" Doctor Carol Bauer was much better, but she essentially did not do right by me either. I was mislead and lied to on multiple occasions. After a long search I have decided to use Dr John Leonetti and Dr Douglas Anderson out of Chicago. They both were fabulous! I've been calling and waiting for a surgical date from Springfield four weeks, nothing. In that time I've met many other wonderful people. I think it was a sign. I feel very blessed to have a team that operates on several AN'S a week, not 6 a year!
IL17JJ- Please travel outside your area for other opinions. I don't know about you, but I did not feel comfortable with being a guinea pig. I feel as though I am a case to be used for practice. Someone that is healthy, young, and less likely to have complications. Making me an ideal candidate to up surgical numbers. Dr Bauer only deals with six to eight a year. I wanted someone with more experience. I'm not saying she isn't a good surgeon or a nice person, I just had a unpleasant experience . I was also very very pleasantly surprised by the professionalism of other surgeons. Hope this all helps! Wishing best of luck!
Thanks for updating us on your status. I can understand the frustration that you expressed about the difficulty in searching for the BEST treatment options for your situation. I am inspired by your determination and clarity in finding the right Surgeons for your likely operation. I am confident that the choice you indicated is a very good one and my research in Illinois options also led me to look at Loyola and the top notch team of Leonetti and Anderson.
My status is somewhat different from yours in several areas. I am older than you (57), and my tumor is thought to be a PRIMARY Facial Nerve Tumor that is much less common than an Acoustic Neuroma. I have a CT Scan scheduled on 08/01/17 for further evaluation as to see if it is possible to differentiate as to whether it is a Schwannoma or Hemangioma. In addition my Doctor wants to evaluate for other possible pathologies that my MRI indicated on my Right Side as well, that were unclear to the Neuro-Radiologist.
A major obstacle in my ability to seek out second opinions is that I have a fairly restrictive Insurance Carrier. IN Network, I can go to OSF in Peoria, SIU Springfield or possibly to Northwestern Medical Center in Chicago. OUT of Network choices are very cost prohibitive. After I have a clearer picture of my Full Diagnosis I will look within those options. Of course you have already commented on the SIU option and I have taken that to heart.
Please keep us informed as to your progress along the Way, and I wish you the Best.
I also want to thank the entire past and present members of this forum for contributing their collective wisdom. The experiences and observations of this group has proven to be inspiring and an amazing source of much needed information for me.
IL17JJ, would an out of network consultation, not treatment, be a good idea?
Yes, I think it would be a good idea. My "fear" is that I could find my self facing something similar to HOLRORA, but without the ability to ultimately being able to choose the "Best" Surgical option if that becomes the best path to choose.
I am confident about my options on GK at OSF Peoria IL. In general, my current DR has agreed that my age, health, etc supports GK over Surgery if that is my informed choice.
If for whatever reason I am forced to choose Surgery over Radiosurgery, then I would want to find a very experienced Team to do that. It is at that point that I would confronted by the stark realities of my limited choices. My out of network coverage would not be financially feasible.
I hope that my upcoming CT scan gives enough insight into my full diagnosis that I can move forward with at least a second opinion from several sources IN an OUT of network. After reading HolRora's post, I am coming to the realization of the absolute need for digging as deep as possible for answers, and not just assuming that the first opinion is always correct.
This type of dialogue on this forum is so important to opening oneself up to the realities of what we are facing. Thankfully, I feel that I am not alone and isolated in this process.
You are not alone and this is a great place for information from folks who " have been there",,
As to out of network doctors ,,, I have seen folks on here get approval for treatment out of their network. Not sure how they did it, but the insurance company decided the best treatment for the patient was by the requested doctors. So maybe upon appeal you would be able to use a more experienced team,, if you choose to go that route. I think the surgeon's office ( such as at House clinic and I'm sure others) will help get the approval.
I'm just throwing that out there as info,,, not trying to endorse anyone nor any mode of treatment,,,
Good luck with your decisions and consults,,,
As Jane has rightly said, get the active treatment center to talk to your insurance provider. They're experts at it.
Talk to surgeons, radiosurgeons and do some reading on observation. Explore all three treatment options. Your really want to measure twice (or more), cut once.
IL17JJ How was Dr Porter at Carle? I have heard wonderful things about some neurologist at OSF and even had appointments. This was all when the Springfield doctors thought I had MS, Lupus, or some other autoimmune/neurological condition. You are defiantly not alone! If this wonderful site has taught me anything, it's that we have a new family to share in this journey. I pray that I'm making the best choice possible for me, and I still worry some. I do feel much better with this team then the one in Springfield. SIU actually called me this morning, after over a month, and wants to do surgery next week. I am just not comfortable. As I said Dr Bauer was ok. She was very nice, but she really could have explained it better. Perhaps gone over my MRI with me, or even offered to show the MRI's to me, but she did not. The other opinions I got went though all my scans and explained physically every symptom. They did an ABR sense it's into the brainstem and gave me options. Springfield did not give me options and did not explain the surgical route at all. I'm very confident that an option will present before you, as it did me. Insurance is a pain, and I to was limited. Barnes in St.Louis does not take mine, but they let me pay out of pocket for an opinion (consultation). Northwestern was not covered either and they have a fabulous team there. ANsydney is so right about going out of network. For many years our insurance did not cover well in our remote area so they made exceptions. If you find a team you like, let the insurance pros there work their magic. It's worth asking and trying. I only wish my AN was not symptomatic and smaller. Dr Amin (neurosurgeon) repeatedly pushed radiation. Once I saw other surgeons they did not even consider radiation due to my age, size of AN, and location. Then there was the symptoms to consider that will not go away unless it's removed. They explained that it's like heating a grape. It could swell and cause a coma or even death. This was yet another reason why I lost faith in doctors that would continually recommend this course of action. Lastly there was the finger pointing. He said she would be doing it all and, she said he would be doing everything. I loved the way the other surgical teams specifically told which doctor was doing what part of the surgery. If mine was smaller and less symptomatic I would defiantly go with radiation. I was prepared to do it until I researched and got other opinions. I hope this all helps rather then confuse.
You asked about Dr. Ryan Porter at Carle Clinic.
Dr. Porter is my current Doctor and is guiding me through the current phase of Watch and Wait, including MRI & CT Imaging at The Carle Clinic. His credentials are excellent and his communication with me has been very good. He has been at Carle Clinic for 5 years and this is his first position after his Otology, Neurotology and Skull Base Surgery Fellowship at Michigan Ear Institute. He takes the time and explains things very thoroughly. I do trust him.
My situation is very different from yours, I am mildly symptomatic on the left side, I do not have any Brain Stem involvement, and I likely have a small Tumor only affecting the Left Facial Nerve.
I have concentrated on Gamma Knife Radiation as my early on preference and let Dr. Porter know that from the beginning. He explained my options and answered my questions without trying to force a choice on me either way. We agreed that for me right now that Watch and Wait with periodic Scans was a sensible option.
Your posts and comments from others here have convinced me however that One Opinion is not enough, and that is what I am trying to line up right now.
I am so impressed by your getting to the bottom of your Diagnosis and finding Doctors that you trust. I would imagine that taking the next steps and scheduling is the scary part, but as I have reread your post it seems that you are almost there. Stay Strong.
I can not express enough appreciation to you and all all of the participants for sharing on this forum.
Univ of Iowa is a large volume AN center. Dr Bruce Gantz and Dr Marlin Hansen do many out of state patients. Gantz is my dr but many have had Dr Hansen and his fellowship was at House in LA. Maybe another possible idea for you.