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AN at Georgetown
nb of pa
Posted: Thursday, November 20, 2008 6:55 PM
Joined: 11/20/2008
Posts: 9


Has anyone met with or received treatment from the doctors at Georgetown? I am considering choosing this center for my AN (1.4 cm) and would appreciate learning of your experience. It's hard to commit to treatment, as the symptoms aren't that bad for me yet, but I would like to stop the progression of hearing loss that I have. I have read many stories about treatment side effects. While I'm sure most people have very good results, I am concerned. This is my understanding of potential problems in the next few years... Increased tinnitus Hearing loss Facial paralysis Balance/dizziness issues Cognitive problems Malignant changes in tumor Headache Depression Hair loss Have I missed any? How frequently do people receive treatment without experiencing any of these symptoms? When can you expect to be "done" with these potential problems, or can they occur at any time the rest of your life? I will be 50 this year and had hoped not to be feeling 80! I appreciate your input.
nb of pa
radsrus
Posted: Friday, November 21, 2008 3:30 AM
Joined: 10/10/2008
Posts: 4435


First of all ,let me sort your list out a little: 1. Malignant changes. This is a scare tactic from surgeons. The last time I looked there had been 6 AN's that had been reported in all the medical literature as becoming malignant after treatment. Three had had surgery, and three radiosurgery. That is not a real concern. 2. It is possible to have small areas of hair loss, but they are usually temporary. Total hair loss does not occur, and permanent hair loss is unusual. 3. Increased tinnitus would be unusual. More commonly, the tinnitus that is already there just does not go away. Tinnitus usually becomes less noticeable over time, but not always. 4.Hearing loss is a real risk. It occurs in 15-25% of patients treated with fractionated radiosurgery on the CK, probably about 10-15% higher with Gamma Knife. BUt you are already experiencing hearing loss, it is going to get worse if the tumor growth is not stopped, and hearing loss is much more common with any surgical procedure. 5.Facial paralysis does occur, but in only about 1% of patients, and would be very unusual with a tumor the size of yours. FOr what it is worth, we have never seen it with radiosurgery, either Gamma Knife or CyberKnife. 6. Balance/dizziness issues are probably the most common significant problem after treatment. They tend to be worse in people who already have balance problems before treatment, but not exclusively. They tend to go away over time, but we have seen them persist beyond 1 year. In a small percentage of patients (we have seen two), they persist well beyond two years. They can be helped with low dose Valium and vestibular therapy. 7. Headache can occur. It does not appear to be particularly bothersome except in a few individuals. Sometimes it gets worse at 3-6 months when there can be some tumor swelling, and also when there are pressure changes. 8. Depression apparently occurs, but I really don't think it is directly related to the tumor or treatment, but more liely occurs because people think "Oh my God, I have a brain tumor". Their physicians, meanwhile, are thinking "Thank God, they only have an acoustic neuroma". Being a radiation oncologist tends to put a different perspective on things ;-) Hopefully someone who has been treated at Georgetown can relate their experiences to you. It is one of the busiest and best centers in the world.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


nb of pa
Posted: Friday, November 21, 2008 12:57 PM
Joined: 11/20/2008
Posts: 9


Thank you for your prompt response! I your information is very re-assuring.
nb of pa
jaybe
Posted: Sunday, November 23, 2008 8:38 PM
Joined: 10/10/2008
Posts: 70


nb,
I had CK for my AN at Georgetown about 15 months ago.  I was very pleased with the docs and how smoothly the treatments went there.  I really had no side effects from the treatment itself, except for a little bit of a numb feeling on my tongue for awhile.  I had a good response to the radiation, and my tumor seems to be dying now.  It did swell up a lot starting about 3 months after treatment, though, and I did experience many of the side effects you mention; balance problems, hearing loss, increased tinnitus, and headaches.  Thankfully those things were all temporary, except I still have some high-frequency hearing loss.  I can't offer a long-term perspective, but at 15 months I'm happy with my treatment choice.

Good luck with your decision,
JB

nb of pa
Posted: Wednesday, November 26, 2008 5:04 AM
Joined: 11/20/2008
Posts: 9


Thanks for the information. I hope my treatment goes as well a yours. Were you able to continue to work through the "swelling phase" or did you need time off? Did OTC meds alleviate the symptoms, or did you require steroids to continue daily functioning?
nb of pa
russtoo
Posted: Saturday, November 29, 2008 4:06 PM
Joined: 10/10/2008
Posts: 7


"Depression apparently occurs"

   Yes;  It is a learned helplessness due to the acquired morbidities. One with lousy balance/dizziness.oscillopsia, tinnitus and hearing loss generally doesn't feel as optimistic as the Dr. might.
   In other words; One has to be a pt. to fully understand.

radsrus
Posted: Sunday, November 30, 2008 4:57 AM
Joined: 10/10/2008
Posts: 4435


Depression is a lot more complicated than that. It involves not only what has happened to you, but how you respond to those events. It is always difficult for me to see people with almost nothing good in their lives who are as happy as you can imagine, but we see people like that every day. Maybe it is built in, maybe it is a learned response, but for certain it is not invariable. As for having to be a patient, I largely agree with you, but not entirely. To quote Uncle Remus: "There's other ways o' learnin' 'bout the behind feet of a mule than gettin' kicked by 'em, sure as I'm named Remus. And just 'cause these here tales is 'bout critters like Br'er Rabbit an' Br'er Fox, that don't mean they ain't the same like can happen to folks! So them who can't learn from a tale about critters, just ain't got the ears tuned for listenin'. "

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Dr. J
Posted: Sunday, November 30, 2008 5:38 AM
Joined: 10/11/2008
Posts: 1070


That's Oklahoma talk for sure.  Don't hear much of that back East these days, what with rabbits, foxes, and mules. 

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


Sheryl
Posted: Sunday, November 30, 2008 11:50 AM
Joined: 10/11/2008
Posts: 31


Alligators, snakes, and red ants in this part of Florida!!
jaybe
Posted: Sunday, November 30, 2008 10:25 PM
Joined: 10/10/2008
Posts: 70


nb,
I was mostly able to continue normal functioning though I was pretty miserable at times from the swelling.  I was on-and-off prednisone for awhile without much relief, but ultimately went on Decadron (stronger steroid), which alleviated a two-month-long headache in two days.  I should mention that I don't live in the DC area, so I ended up going to a local doc for my follow-ups.  I think my post-treatment could have been managed better, but it's a tough call on prescribing steroids.  I had some unpleasant Decadron side-effects but relief from the headache was amazing.



nb of pa
Posted: Tuesday, December 30, 2008 7:15 AM
Joined: 11/20/2008
Posts: 9


I went ahead with treatments the week before Christmas. The Doctors and staff were wonderful- professional and kind. Despite having to travel, I felt that I was in the right place for me The treatments were easy, and I had plenty of energy. Staying in Georgetown was beautiful- what a great area in DC. I had no shortage of museums, great shops, and restaurants to explore, which kept me busy everyday after my treatments were over. I felt fine through the holidays, and have my fingers crossed- hopefully good tumor control, and retention of some of my hearing on that side...
nb of pa
radsrus
Posted: Wednesday, December 31, 2008 5:16 AM
Joined: 10/10/2008
Posts: 4435


The odds are on your side.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Dr. J
Posted: Wednesday, December 31, 2008 11:43 AM
Joined: 10/11/2008
Posts: 1070


May the New Year bring you good fortune.

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


nb of pa
Posted: Thursday, March 19, 2009 7:29 AM
Joined: 11/20/2008
Posts: 9


Update on my treatment. I have been feeling great. Through February, I felt that my hearing had improved somewhat. I was able to distinguish speech on the phone if I really listened. Then suddenly, it was like someone put a plug in my ear, and ear noise increased. My hearing test dropped from 60% to 0% speech recognition, yet oddly, some of the pure tones improved. Just finishing my steroids, which has given me some improvement, but not fully returned to when I perceived I was. Follow up MRI showed growth/swelling. From the written report... 'the tumor is minimally increased in size along its cisternal portion. Currently measuring 1.4 cm x0.8 cm x0.8 cm in longitudinal, AP and craniocaudad dimensions respectively. "the cisternal portion of the solid tumor measures 0.9cm x 0.7cm (AP x transverse) in comparison to the prior exam, where it measured approximately 0.8 x 0.4cm. The lesion qualitatively looks slightly larger as well." My Docs find the swelling more than usual, but were not particularly alarmed. They did see signs of tumor death when viewing the film, which sounds like a plus to me. I will be following up with another MRI early in May to be sure I'm stabilized. I remain optimistic. Hopefully, my tumor will not continue to grow at this point.

nb of pa
radsrus
Posted: Friday, March 20, 2009 7:46 AM
Joined: 10/10/2008
Posts: 4435


I don't think this is unusual. There are often some bumps in the road in the first 1-2 years.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


nb of pa
Posted: Tuesday, July 28, 2009 5:57 PM
Joined: 11/20/2008
Posts: 9


In case any of you "wait and watchers" are following my post, my follow-up in May showed a stable tumor, signs of tumor death, but no shrinkage yet. I am glad to report that I regained all of my pre-treatment hearing, plus some! I can understand things better on the phone, and feel that I am starting to use that side more for hearing. I go back to Georgetown in December for a one year check. I feel great and am glad to still have retained my hearing so far.

nb of pa
radsrus
Posted: Wednesday, July 29, 2009 4:09 AM
Joined: 10/10/2008
Posts: 4435


Nothing but good news on the AN front today. Congratulations!

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


pbp214
Posted: Wednesday, July 29, 2009 5:03 AM
Joined: 10/10/2008
Posts: 193


nb, congrats on the news!  Sounds like things are right on track and sending wellness wishes your way!  It is my understanding (and docs, pls correct me if I am wrong) that some may see some shrinkage and some don't as the goal of the treatment is to stunt its growth, not to necessarily see shrinkage.

 

I'm thrilled to hear about your hearing preservation (another great result like mine!) and congrats on feeling great! News we truly love to hear!

 

Best wishes for continued wellness,

Phyl



===============================================

1cm Acoustic Neuroma treated by CK at Beth Isreal Deaconess, Boston, MA 1st week of  April 2006


radsrus
Posted: Wednesday, July 29, 2009 7:05 AM
Joined: 10/10/2008
Posts: 4435


The goal of the treatment is to kill the tumor cells. However, since a lot of what you see on scans is not living tissue, there may not be much change on the scans. We don't just "stunt" it.

 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


nb of pa
Posted: Friday, December 11, 2009 7:39 AM
Joined: 11/20/2008
Posts: 9


One year post Ck with a great check-up. The tumor size was unchanged, with increased signs of death. My hearing test was great with 100% voice recognition on both sides! I will admit that I really focused and had to guess at some words, but none the less, an amazing report. I can hear on the phone on that side now, although somewhat buzzy. I am sensing sound from that side again. I guess time will tell if my hearing is stable, but I am very pleased with my choice to precede with treatment. Thanks to all who contribute to this website. The information was very helpful in my decision process.

nb of pa
radsrus
Posted: Saturday, December 12, 2009 3:07 AM
Joined: 10/10/2008
Posts: 4435


Good Report! Glad to hear it.


 

Clinton A. Medbery, III, M.D.
St. Anthony Hospital Cyberknife Center
(405) 272-7311
buddy@swrads.org

Mail to:
Clinton A. Medbery, III, M.D.
Southwest Radiation Oncology
1011 N. Dewey Ave. #101
Oklahoma City, OK 73102

 


Dr. J
Posted: Saturday, December 12, 2009 4:25 AM
Joined: 10/11/2008
Posts: 1070


Thanks for the update.

 

Jerome J. Spunberg, M.D., FACR, FACRO
CyberKnife Center of Palm Beach
jspunberg@radiationoncologyinstitute.com
(561) 799-2828

 

Radiation Oncology Institute
10335 N. Military Trail, Suite C
Palm Beach Gardens, FL 33410
(561) 624-1717


nb of pa
Posted: Wednesday, January 01, 2014 3:40 PM
Joined: 11/20/2008
Posts: 9


At my 5 year check, the tumor is stable in size, balance a little off on that side little, but OK. Best of all, my hearing is still preserved, if not a little better than the last check 2 years ago. I think I have learned to selectively ignore the ringing. Sometimes I make myself listen on the phone on that side for "practice". I wonder if the brain can learn to interpret the less than perfect information it now receives… Anyway, I am so grateful for this forum. I probably would have jumped to surgery and who knows what horrible effects. Instead, I function normally, without daily thoughts about the tumor. Thanks to all who contribute here. nb

nb of pa
 

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