ANA Discussion Forum
Archive => Archives => Topic started by: frauch on April 03, 2006, 01:51:23 pm
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My fiance has had an AN confirmed by MRI...results just in today. Does anyone know of a neuro in Memphis who has performed any of the microsurgical techniques? If not does anyone know of any physician in the area that has performed stereotactic radiation therapy? She currently retains approximately 40% hearing in the effected ear so the goal clearly would be to retain as much hearing as is possible...THANKS>
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Hi Frauch and welcome to you and your fiance.
I'm not familiar with physicians up your way but am familiar with some of the availabilities in Metro Atlanta.... Emory Univeristy and Kennestone Hopsital may be worth a look.
Wishing you all well and please know... we are ALL in this together!
Phyllis
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Don't know about Memphis, but there is a Dr. Gary Jackson in Nasvhille who is apparently quite renown with An surgery. One of the ENTs we consulted had mentioned him, but we ended up finding an experienced surgeon closer to our home. I think there
are or have been others on this board who have experience with him. I believe the practice is called The Otology Group.
If you scroll though the listings under the physician section, you may find more menitons of him.
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Hi, Frauch.
I would highly recommend Dr. Jackson in Nashville. I will be 6 weeks post op on Wednesday. I had facial weakness for a short time after surgery which began improving very soon after surgery and improved a little every day--all has returned nearly to normal now. I have very little dizziness--started driving alone 2 weeks ago (short trips at first--took a 2 hr. drive across Nashville and back last week). Dr. Jackson was very helpful in answering my questions and suggested I take some time to make my decision and to call him if I had any other questions. He told me I was a good candidate for either mid fossa or translab surgery and offered to put me in touch with a radiologist should I decide to go that route.ÂÂ
I am self-employed and had a meeting with a client at 2 1/2 weeks post op and am now back to work on a part-time basis. It takes me about twice as long to get things done, but I didn't expect to be this far along this soon, so I am not complaining!
Be sure to research, research, research. Know all your options and make the decision that is right for your fiance. I opted for surgery because my AN was small enough that I thought it could be removed with minimal damage to my facial nerve. That was more important to me than my hearing which was almost normal prior to surgery. I could have waited and watched, but just wanted to get it over with--I thought it best to get it out before it had a chance to grow and cause more problems and I feel I made the choice that was right for me. I am very blessed as I am now pretty much feeling just like my old self except for the hearing loss (and diminished energy level--but that is improving too).ÂÂ
I wish the best to you and your fiance. The most difficult part of this journey is deciding which treatment to choose.ÂÂ
Please feel free to contact me if you have any other questions.ÂÂ
Patty
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YEAH Patty!!! Sounds like you are doing marvelous!
Frauch how big his your fiance's AN?
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Hi, Battyprincess.
I must say that I credit a great deal of my speedy recovery to all the laughs you "wenches" have provided! Laughter is truly the best medicine. Thanks a million!
Patty
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You're most welcome Patty
It helps us too...right Laz?? ;)
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Hi there battyprincess,
we don't yet know what size the AN is. I had done research on AN via this website and as soon as her ENT called with the news that the MRI indicated the AN I posted my question. We are going to see the Neuro that her ENT has recommended next Thursday to get more tests and find out exactly what we are dealing with. I don't even know who it is we are seeing but I wanted to find out as much as I could prior to the visit.
She's young (35) and otherwise very healthy...although in looking back we can now see signs that she may have had the AN for 3 - 4 years. The symptoms were just so minor and short in duration that no one ever thought there may be a more serious condition involved.
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Good evening PRussel,
thank you so much for sharing your experience with Dr. Jackson!! It sounds like you had a great outcome! I am very anxious to find out exactly what we are dealing with when we make the initial visit to the Neuro next week. I am definitely going to make contact with Dr. Jackson after our first visit and we know more.
I wish you all the best in your ongoing recovery...sounds like you are almost there!!! :)
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I can look back and no I had symptoms for a lot longer than I complained or sought medical help.
Ask to read the report which can be very enlightening. My doctor told me it was a small begin tumor and showed me a shot on the mri that looked like a pea..when I saw the report I got the truth...begin but big and twisting the brain stem.
Did you request the brochures from ana? They are very informative and give you good examples of surgery and non surgery options and a great list of questions to ask your treating physician.
Keep in mind we are here to help you along your journey...you are now part of a great cyber family!
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Hi, frauch
Glad to help out any way I can. Please let me know if you have any other questions. Feel free to email me off list at prusseL4@bellsouth.net
Patty
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Hey battyprincess,
got the radiologists report back today and to answer your previous question...Connie's AN is (2.1 x 1.6 x 1.5 cm) in size. I am sending the MRI report and films to Dr. Jackson's office in Nashville today and his office said they would set up an appointment for us as soon as he reviews the films. Hopefully in the next 2 - 3 weeks...(thanks again to PRussel for the referral).
Thanks to all the help and information you guys have provided we have the ball rolling!!
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Frauch it is my opinion and I"m not a doctor or a member of the medically community but think she is right on the cusp for all treatment options. It will depend on what the tumor is pressing against etc...Here's hoping for the best. Mine was 2.8CM and I was told at 2.3 was the cut off for radiosurgery techniques but have read on here others with same size tumors opting for that. I had brain stem involvment so figure that was why, time and size were not on my side.
Yeah, good referral, large size tumor to the small side, residual hearing left ....I've got my fingers and toes crossed (that should account for something!) and support...Bad you your fiance has an AN..good that she has that many factors in her favor. (remember this is my opinion and only my opinion) ;D ;D
Keep us posted!!! She's one of us now!! Comes with lots of love, support and unsolicited advice and lots of humor when we can! ;)
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Well all...
Thanks again for all your help and support. The information you have provided has certainly opened a lot of doors and led to a great deal of research. After sending the MRI films to Dr. Jackson's office in Nashville, he contacted Connie this morning and went over what he saw as her best option.
While he did discuss Radiation Therapy he cautioned against it given her age and the fact that it would not eradicate the tumor. Surgical Removal was the recommendation given the potential to retain a significant amount of hearing in the ear. Obviously there are a few tests he would like to perform pre-op so we need to be there a day before surgery and he suggested a hospital stay of 3-5 days post-op. 4 - 6 week recovery time at home after that before returning to work.
Given that we are scheduled to be married June 10 he thought the proceedure could wait until after that but cautioned against waiting more than 3 months from this point. So we shall be married then head to Nashville for surgery...not quite the honeymoon either of us had planned (we actually canceled the trip to Cancun this morning) but we don't want to postpone the surgery any more than we have to. I truly appreciate all the insight and guidance you have provided...I don't know that we could have acted this quickly and desicively without it! We'll keep you posted!
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There are surgeons who treat acoustic neuromas in Memphis at the Semmes-Murphey Clinic located on Union Avenue.
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For those interested...my wife and I just returned from Stanford University Medical Center where she underwent CyberKnife treatment for her AN. We had planned for the surgical approach but after much research and discussions with patients who had either surgery or radiotherapy...it was clear that the only way to preserve her quality of life with no protracted recovery time was via radiation.
I have to say that we were INCREDIBLY IMPRESSED with both the professionalism and knowledge of the staff as well as the facilities and resources available at Stanford. I realize not everyone qualifies for this procedure but I truly believe we made the right choice and had the right team in place. I would given them the HIGHEST recommendation if ever asked...in an age where I have come to expect less and less from my healthcare providers, these guys set the bar high once again.
While we are only a few days out from treatment and are well versed on the potential side effects that could manifest up to several months out...she has experienced not the first one thus far.