ANA Discussion Forum
Useful Information => Physicians => Topic started by: palvetty on February 08, 2014, 09:51:40 pm
-
Hi. I met with Dr. Lambert at MUSC and had a free phone consult with Dr. Goddard at House Clinic. Dr. Goddard actually recommended Dr. Lambert as I live in SC. I'm not sure what to do or where to go next for another consulation.... I would love to hear from people who have experience with MUSC.
-
Hi! I had my surgery at MUSC in September 2011, with Dr. Sunil Patel. He is head of neurosurgery there, and I highly recommend both him and MUSC. I initially saw a neurosurgeon here in Greenville, and he strongly advised me to have the surgery done by someone with extensive experience with AN. He recommended Dr. Patel or someone at Duke (head of neurosurgery; can't remember his name). I never went for the Duke consult, because I felt good about MUSC and Dr. Patel. I don't know the MUSC surgeon you were referred to, but I had a very good experience at MUSC. Not gonna sugarcoat it; the surgery was rough. The tumor had tentacles that were not apparent from the MRI, and what was supposed to be a two-hour surgery lasted six hours. Still, Dr. Patel was able to remove 95% of the tumor. The acoustic nerve was sacrificed, and the facial nerve was partially severed, leaving me with right-side hearing loss and facial paralysis (from which I have mostly recovered). Given the size of the tumor (3.0 x 2.5 cm), and the fact that the tentacles wrapped around other nerves and the brain stem, the result could have been much worse. This is exactly why the Greenville surgeon insisted I see a specialist; every case is unique, and there may be surprises once they get in there. Another point is proximity to home. I was able to return home after a five-night stay, but was still very weak and had severe balance issues. Even with a walker, if I had needed to use the bathroom on the way home, with only my husband to help me, public restrooms would have been an issue. So my husband lead-footed it all the way home, and we made the drive in under three hours. It's also nice to be able to make post-op visits in one day; no need to fly or stay overnight unless we just want a little extra time in Charleston. Those are the kind of issues we did not anticipate. I am thankful we have an excellent facility like MUSC relatively close to home. The care there was very good. All the neuro patients are cared for on one floor, so although it was not an ICU, all the nurses specialize in neuro patients, and they took very good care of me and my family. And believe it or not, the food was excellent! So my two main lessons learned: 1) find a specialist in a facility equipped to handle complications, and 2) stay close to home if possible. Sorry for the long reply. I hope this info is helpful to you, and I wish you the very best. If I can help in any way, please don't hesitate to ask. Best wishes!
-
Hi, Hokiegal ~
Congratulations on your successful AN surgery and thank you for registering and posted that very useful information. It's appreciated more than you know.
Jim
-
Thank you, Jim! I can't believe I just discovered this wonderful forum yesterday. I have already learned so much from reading others' posts. Even though I am 2+ years post-op, I feel I am still in recovery mode. And while I am back to work full-time, I still struggle with exhaustion and -- I'm almost afraid to admit it -- memory / concentration issues. So seeing that others have experienced the same issues has already made me feel less alone.
-
Thank you SO MUCH for your comments and detailed info Hokiegal!! I live in the Greenville area and agree I would rather be closer to home if possible. Sounds like it IS POSSIBLE! My tumor is 2.5 cm (left side) and I'm trying to figure out if I want to go the radio surgery route or the translab approach, both of which the doctor at MUSC said were options for me. The doc at House seems to lean strongly toward translab and heavily against radiation. I know I need to make up my own mind, because it's I am comfortable with, within reason, but I'm stuck not knowing how I feel about either option. ugh. Need to make some decisions soon and stop flip flopping as I read various opinions. Glad you had a successful surgery! And thanks again for your helpful insights.
-
Valpal, you are quite welcome! I'm glad that someone may benefit from my experience. You have quite a decision to make. In my case, radiation was not an option, so that was one less variable to consider. I'm sure you will make the right choice for your situation. Please let me know if I can help in any way. Best wishes to you, and please let us know how you are doing!
-
Just in case you are still in the decision process.... Dr Paul Lambert is awesome. He did my removal in 2005 and has been amazing at post op care as well. Dr. Patel was present during my surgery as well. I was initially diagnosed as terminal due to growth rate and pattern. Dr Lambert was successful with surgery and all I lost was my hearing nerve and equilibrium nerve. The other side effects he warned were possible didn't happen.