ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: AnnR on March 13, 2011, 10:20:44 am
-
Does anyone out there have any info on Gamma Knife at Jackson, Ms? I would like to know if they have a good record especially since tomorrow's visit with neurosurgeon will be to decide when and start the process to have the GK done in Jackson, Ms. I have a small AN about 10+ at MRI six months ago.
I like many others that I can see seem to get their info from those who have experienced. This is so appreciated so much
-
Hi Ann and welcome. :)
I'm not familiar with GK in Jackson but suggestion would be to inquire to them for patient referrals for AN's/skull-based tumors that they have treated. We (incl the ANA) recommend being treated by those that have experience in AN's so if no one here is familiar with GK in Jackson, maybe check with the GK team for those willing to speak to you that have been treated there.
Again, welcome.
Phyl
-
Thank you for your input. I have learned so much about this topic through the many people on this forum. It has given me info that I probably would not get otherwise. I found out what questions to ask and I did ask my neurosurgeon about his experience. He said that he had been involved with probably 500 GK and 100 for acoustic neuromas. He is a graduate of John Hopkins at Baltimore with a PHD in neuroscience. That is only the first thing. I do feel confident with him and his experience. His practice is in Hattiesburg, Ms but is affiliated with the gamma knife center in Jackson. He will be there along with a physicist and other team members.
Now for a little history....69 years old and good physical shape except for the AN. Diagnosed almost two years ago with 3mm and every six months MRI eventually showed that the AN has grown to about 17mm as of last MRI in Feb. I am no longer on the watch and wait. It's time to do this. I do have extreme tininitis in left ear and have lost to about 40% hearing. My balance problems seem to peek and then get better and maybe it is my body adjusting.
I will continue with this forum and keep posting as this experience continues.
Again, many thanks to the many people that have taken time and care to share with everyone.
-
Day 5 post gamma knife. The gamma knife center is located at the Central Mississipp Medical Center in Jackson, Mississippi. You can search Gamma Knife Mississippi and will take you to Robert R. Smith center. Their website gave me the link to the anausa.org. THis is how I discovered all you helpful people. This is the only facility in Miss. The info on their website provided me with information on l all the steps that would take place from the time I registered that morning untill I left that afternoon. I feel that I was very well prepared for the experience bit I still needed Zanax for the anxiety. That was all I needed. I was treated like the only patient there and after each step that took place from getting the head frame on till finish the removal of the head frame. The nurses called my family to let them know what was happening. This was a very helpful thing for them.
The machine was Leksell Gamma Knife PERFEXION if anyone is interested.
Up till now, I have had only two ibuprofen for a headache as the feeling was coming back at the pin sites. I have a small increase in problem with my balance but not bad. The tenninitis has increased in loudness but I'm ok with it. Overall, I couldn't be better satisfied with the outcome at this point. I know that other things such as headache, more loss of hearing (I now have about a 40% loss), facial problems could occure several months after this.
MRI scheduled again after six months so hopefully, the AN will be shrinking or at the least not growing.
Hopefully, this will be of interest to someone who may be going for the GK and I will continue to post later of my experience.
Hopeful, AnnR
-
Hi Ann;
I am surprised the growth rate of the AN at your age. A high % of ANs slow or stop growing past 55 or so.
Good news if Dr. has done that many Txs; And, I'm glad you are comfortable there and with your decision.
I believe radiological protocols are pretty similar with the exception of one or two Oncologists in the USA.
I'm guessing Dr. used about 13 gy. overall dosage. Old protocalls were closer to 17 gys and there occurred more nerve damage in AN pts.
Did he say what the dosage was?
Best wishes and hang tight, K? Of course you know some days will be more difficult than others.
I hope you had hearing to spare and keep it.
Also; Of course you know any more Xanax becomes easily addictive.
Best wishes. May you be blessed with a good recovery and tumor control!
-
Day 16 post GK
Thank you for your reply and concern. I honestly have to say that I don't remember if the doctors told me about the dosage. My husband was with me and he didn't remember them telling us.
I am still having no problems but I do have a little oddity. A small patch on my scalp about the size of a fifty-cent piece is still numb. It is on the side of the AN between where the two pins went in front and back. It started out about 3"X3" and has gotten down to almost gone. No problems, just odd. Has anyone else experienced that?
The AN that I have is also referred to as a Vestibular Schwanoma. I don't know if it is any different from others with an AN. It was watched for almost two years and it did come out of the area it was contained in. I'm not sure if I am describing it very well but that's the best I can come up with.
The thing that caused us to find it at 3mm was this: Four years ago I had out of nowhere, I had what I call "an extreme spinning episode". Never had it before. I was diagnosed with vertigo. Got over that and had little problem after the initial first month. A few months later I did notice that I would lose by balance fairly easy and I told my family doctor and he considered it to be the vertigo. After my next six month checkup, I told him that I was still noticing this problem and he referred me to the Neurologist who did a MRI. He told me that this small tumor could be the cause of the imbalance and after that, the rest is history. My ENT told me that normally, a patient would come to him with a noticable hearing loss maybe suddenly and that is where the journey would begin. The rapid hearing loss didn't come till last year and the tenninitis got much louder as well as a lot of anxiety. Startle real easy ect. Whatever was going on, I'm just so glad that it worked out that it wasn't any larger when we discovered it.
About the Zanaz, I read a lot on this forum about Zanex and was aware of the side effectos or addictiveness of it. I have never had to take this before and hope I will never have need again. It did the trick for me. The nurse gave me my dose as they were doing their procedures to get me ready for the radiation. I am thankful for it and haven't had any need for it since then.
I don't have anything more to post for now, everything is nicely uneventful but I wake up every morning wondering if this will be the day when side effects will show up. I don't stress over it, just aware that things could happen. I have a wonderful husband who watches over me like an angel...for 50 years.....
Thanks again, AnnR
I
-
I appreciate the posting of your progress. I start my journey this summer after school is out. GK in Dallas with Kutz at UT Southwestern. Thank you for your updates, sometimes people forget that it helps others that haven't gone through it yet.
Also, God Bless your husband of 50 years! What a wonderful support system.
Good luck and again, thank you for posting.
-
Two months post GK
All is well....so far....only thing I notice is I still have some numbness on scalp above left ear which is the side of the AN.....No increase in Tinnitus...no additional hearing loss.....no additional balance problems......so far, uneventful.....THANK GOD!!!......AnnR
-
AnnR, glad to hear you are doing well :)
Just a note, though: Gulfport Memorial Hospital on the Mississippi Coast also has CK. Dr. Kim is in charge of that one and is reportedly very skilled. I know this because my sister is a nurse in the ICU there and originally I planned to there for treatment--but then doctors saw that my right tumor was cystic, so no CK for me :P
Keep us posted on how you are doing!
-
I am now at 14 weeks post GK....everything is still uneventful...can't seem to hear any less...still some scalp numbness..small area on side of AN....I think it may have been due to a nerve possibly damaged when I had the injection for the headframe or possible where the points of the headframe went into the skull...I am no medical person but that's my idea. Tenitis is still about the same except when I am anxious or nervous, it seems louder and I seem to be more aware of it then...it has really not hindered me in any way.
I will see the neurosurgeon in Sept. so I'll be looking forward to hopefully a good report.
Ann
-
Oh yes... thanks for the info about the Mississippi Gulf Coast.....I would have gone there but my neurosurgeon is affilliateds with the hospital at Jackson, Ms....I love the coast....
AnnR
-
I am now at a little over five months post GK...so far...so good....
I had numbness of my scalp for about four months and it has gone away, hearing has gotten a little worse according to hearing test, and tinnitus has not decreased.
There is something new happening and it is my left eyelid has started twitching. The AN was on the left side. Has anyone else experienced this? I will have a MRI and see the neurosurgeon in October.
My experience has been pretty good I think.
Later....AnnR
-
Six month update.......good news.......tumor is dying in the middle and you can see the vast difference between the pre GK and post GK.
He said if the twitching of my eyelid and lip increased or seemed to be a problem to let him know and he would give me some sterois. I don't think it'll be necessary.
I believe that the GK was a great success story and thanks to the doctors and the equipment they used that they hit the tumor right on the mark.
I will post later if there is any change.
AR
-
Ann ~
Congratulations! Thanks for sharing that positive update. We appreciate it.
Jim
-
Ann, I'm new to this site as of today. I live in Mississippi and found out a few weeks ago that I have 2cm AN on left side attached to facial nerve. Only symptons were occasional involuntary facial twitches & tinnitus. Just had first appointment yesterday in Jackson with Dr. House who received special certification from House Ear Institute in CA (no relationship with House Institute; just same name). I'm scheduled for GK in a few weeks on a Friday. I'm learning so much from this site, but it was a God-send to find Jackson, MS experience; I've been so worried. I just don't know what to expect, but I'm so thankful to have found this site; I still have sooo many questions. To all reading this post: I may still be optimistic, but is it wishful thinking that I can have GK on a Friday and return to work the following Monday? (I have more of a desk job in a private office that will allow me to rest if necessary). Emma
-
Hi Emma......the staff at the GK center in Jackson were wonderful as you probably have already read about in my earlier posts.
Returning to work was not an issue for me since I am retired. If I were still working, the GK would not have kept me from returning to a clerical job. I took the advice of many as well as some of the info on the hospital website to take it easy for a few days which I did enjoy that . I took some down time in my hammock out in the back yard.
In My GK experience it would not have interfered with a clerical job. The procedure was done early in the morning and I was discharged by noon. I live in Petal, Ms about 90 miles south from Jackson and during the ride back with my husband, I took a nap. I also took two Ibuprofen that was simply for a dull headache which it the Ibuprofen stopped. My procedure was also done on a Friday.
I think you should stay optimistic and No, I don't think iot is "wishful thinking" on your part.
I hope this is helpful to you and I thank God for this forum.
AnnR
-
Thank you for responding. I'm very apprehensive (just nerves, I think), but the thought of radiation has me spending sleepless nights. I'm worried about swelling, facial paralysis, holes in my forehead from the GK headframe and on and on; already started wearing bangs to cover the holes. No one at work knows what I'm doing, so I hope I can keep it hidden. I was told this week that it's a facial neuroma that's in a small area, so that's why I'm very worried about the swelling and other side effects. I'm continuing to trust God, but the human side stays concerned. Thanks again and my procedure is next Thursday, so say a prayer. Emma
-
Hello Emma.....I can surely tell you about my experience with the little holes. Since my AN was not affecting the facial nerves I can't comment on that.
The holes are so small that anyone else would not know they were there. Please feel assured about that. I don't remember anyone else posting about serious problems with the holes.
I think everyone participating in this forum can relate to your fears and I know that I had them even with the reassurance from everyone.
You will probably have plenty prayers going up for you. Isn't it comforting that even though at times we feel only too human and can't seem to feel the faith that is the time when others can lift you up through prayer. HE knows us well.
Prayers and best thoughts....AnnR
-
Ohhh...Thank You so much. I needed to hear those comforting words this morning. My AN is on the facial nerve, so causing more concern about the future swelling after GK. Will continue to trust that I can do anything through His strength. Thank you again for responding.... experiencing so many ups and downs. Emma
-
Hi Emma,
I've posted that I've had GK on 11/25 in Kobe, Japan! My AN is 2.03 left. Finally had GK after 3 MRI's since exactly last year. I don't have the facial thing.
But do not worry at all. I think everything will be A-OK. You'll have the regular noisy MRI after the anaesthesia shots (whose headachy thing will affect u after it wears off), but that's about it really. The treatment itself is silent - ask your Doc maybe you can take along your favorite music cd! I did and gave it to him as a present later!
No problem at all:you'll be going to work Monday morning for sure is my guess. Just get over the anasthesia discomfort when it wears off:everything else is just fine.
Rest assured: you will be totally in safe and protetective hands. Appreciate everything and everyone in your life. Everything is going to just turn out fine. ;D
MK
-
Emma,
I am in north Mississippi if I can support you in any way.
Susan
-
Hi Emma,
I've posted that I've had GK on 11/25 in Kobe, Japan! My AN is 2.03 left. Finally had GK after 3 MRI's since exactly last year. I don't have the facial thing.
But do not worry at all. I think everything will be A-OK. You'll have the regular noisy MRI after the anaesthesia shots (whose headachy thing will affect u after it wears off), but that's about it really. The treatment itself is silent - ask your Doc maybe you can take along your favorite music cd! I did and gave it to him as a present later!
No problem at all:you'll be going to work Monday morning for sure is my guess. Just get over the anasthesia discomfort when it wears off:everything else is just fine.
Rest assured: you will be totally in safe and protetective hands. Appreciate everything and everyone in your life. Everything is going to just turn out fine. ;D
MK
MK, Thank you for the encouraging words. I will have my treatment this Friday rather than tommorrow. I'm so appreciative of everyone on this site, because it has really helped answer questions that I didn't even know I had or even had thought about. Glad you're doing well and I will post as soon as I can after treatment. Thanks for the tip on the music CD!! Emma
-
Dear Emma,
I didn't get to check posts till now - hope your GK was ok! Were you able to put on your favorite music ? Please post whenever you want to.
This site is so wonderful. There are so many communication levels (skype, facebook, etc.) you can communicate with people on, but here, as we share something so personal and important in life, it makes it deeper and purposeful as we can help each other.
There is one saying from East Asia that I like it says: "When you light a lamp for others, the area around you lights up as well!" (When we try to help others, we are also encouraged when it is of help!) all the best, MK
-
MK, Thank you for following up and yes I burned a CD of my favorite Christian music and it was very helpful and comforting. Below is a copy of my update that I posted in the "Post Treatment" section and have had several replies and continued encouragement. You're right.... this site is wonderful...
Posted 12/18/11....Just a quick note to let everyone know my GK experience this past Friday went extremely well. I will be returning to work in the morning and continue to pray for the healing process. I'm so appreciative of all the advice and sharing of personal experiences on this forum. The pin holes are not noticeable - as many of you can now say "I told you so" I'm only experiencing mild headaches and just a little fatigue. Prior to GK, I was facing "fear of the unknown".... Post GK, it's still "fear of the unknown" but it's with a different attitude. This morning I told my husband that I just don't know what to expect going forward and his reply was "You expect your healing through your faith that has sustained you through good times and bad"... couldn't say it better! Thanks to all for your support and I will continue posting my healing process. Emma
-
Emma,
That's so great to hear! Thanks!
MK