Author Topic: Chicago Illinois One year post surgery Loyola Dr Leonetti, Dr Anderson. Positive  (Read 2295 times)

cceekkoo11

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Acoustic neuroma 4.2cm, 28 years old. Surgery in Loyola University hospital Maywood IL, a Chicago suburb in 2015. Surgeons brain part: Dr. Douglas Anderson, ear part: Dr. John Leonetti. One week from the first exam to the actual surgery. Duration of surgery 12 hours. Four days stay in the hospital. No hearing in the left ear. No facial palsy at all, even after the surgery I woke up and I was able to move my face to smile, which is amazing given the size of the tumor. After one year the part of the tumor that was left to save the facial nerve shrunk from 0.6mm to 0.5mm. There was no radiation. I need to do an MRI after another year to keep track of the growth or shrinkage I hope. I will post again, if someone needs an advise or has a question you can write me. They did a combined approach translab and retrosigmoid because of the size, because there could be an obstruction of the view to the actual tumor. They closed the skull with a paste made from my blood and bone dust collected during the drilling, this is to avoid external metal that can cause headache if the muscles grow back into the screws that they put with the other type of closing, but actually here is a solution to that also, some asterisk look alike screws that do not allow the muscle to grow on them. Also they took a fat graft from my belly to put inside the wound, this is also connected with avoiding pain. They did not use radiation after the surgery, they cut the blood supply of the remaining part so that it can not grow and eventually shrink. I have no pain or chronic pain already a year. My balance was fine from the first day because the tumor was at least 10 years old and the vestibular nerve was already destroyed and my brain was adopted to that already. I had only dizziness for 2 months, but it went away. For the hearing I bought the Soundbite device, it really works, it is amazing, but Sonitus Medical seized operation because of Medicaid and Medicare stopped covering the Soundbite. But I am sure that a Cross hearing aid would help you too, or BAHA of course. There are also other good places in Chicago like Northwestern, Rush, Chicago Ear Institute, I am sure that all the surgeons will take good care of you wherever you go, they all have good intentions and a lot of experience. I suggest you do your searching in the forum, this is how I did mine, I suggest you interview a few surgeons, I suggest you ask about protecting the facial nerve, chances of saving hearing, avoiding post operation headaches, closing. Dr Douglas Anderson has done more than 6000 surgeries in his carrier of which more than 1000 acoustic neuromas with Dr Leonetti for the last 25 years, so that fact should tell you something. There are not enough words in this world in which I can explain my gratitude to Dr Anderson and Dr Leonetti and their team at Loyola hospital. Think about every positive word that you know, that is my opinion for their professionalism and experience and the care that you will receive. I will write again after my next MRI in 2016, if you have any question feel free to write me, be aware also that everybody reacts differently to the interference with that tumor. Good luck and may God be with you!
I will send you MRI images before and after surgery if you want.
« Last Edit: February 24, 2015, 02:04:24 pm by cceekkoo11 »

DizzyMamaIL

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Looking forward to your update. I have also consulted  Dr. Anderson at Loyola, but am leaning toward the radiosurgery. How are you at one year post-op?
February 2012 - first doctor visit for vertigo
January 2015 - sudden hearing loss
January 2016 - dx AN 1.1 cm x 2 cm
May 2016 - radiation; June 2016 to present - headaches, vertigo; October 2016 - one episode of facial paralysis

cceekkoo11

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Update Acoustic Neuroma / Vestibular Schwannoma , Dr MD Douglas Anderson Dr MD John Leonetti Chicago Illinois Loyola Maywood
Today is 9 7 2017. It has been almost four years since my surgery. I have completely forgotten about that difficult time in my life (I am saying this because things are tough for you right now, but you also will go on with your life after this storm passes!). Everything is normal. I feel normal. BE CAREFUL WHEN CROSSING STREETS, I ALMOST GOT HIT MULTIPLE TIMES, EVEN NOW AFTER 3 YEARS, YOUR BRAIN IS PLAYING GAMES WITH YOU AND GIVES YOU FALSE FEELING THAT YOU HEAR EVERYWHERE. IF YOU CROSS A ROAD BETWEEN PARKED CARS STOP BETWEEN THE CARS AND LOOK FIRST - YES I talk to you like a child but even if one person stays alive because of that, your reading has been worth. We monitor the residual tumor every year and there is no regrowth so far. I can smile. I know that you are scared and I hope that you will have the same outcome as me! So far I have been contacted by many of you and I have replied to everyone or talked to anyone who wants to talk. I am here for you also.

cgeething

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Hi, I was just recently diagnosed with an Acoustic Neuroma measuring 2.5 cm following complete hearing loss in my left ear. I’ve been referred to Dr. Leonetti, I go to my first appointment this week. I’ve already been told by the ENT that found it that it will be surgically removed. I’m feeling really anxious right now, wondering how quickly things will take place, and how much time I will need to take off work. Seeing that you also went to this doctor, I wondered if you had any info that could possibly prepare me for what he may say??