ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: sylviamorris on November 16, 2015, 10:39:01 pm
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In July, I was diagnosed with an AN on the right side. I am from a smaller town where my ENT has only seen three in his career. He didn't think my AN was a GK candidate and referred me to a doctor in San Antonio, Texas. I really knew nothing about AN and I am an avid researcher. I went home and spent days checking out different options for doctors experienced in this tumor. My research led me to MD Anderson Cancer Center in Houston Texas. For those of you who aren't familiar, it is one of the premeir cancer centers in the US. Most doctors don't send AN patients there because it isn't cancer. Well after doing research, I found Dr. DeMonte and Dr. Gidley at MDA and both are experts in this type of condition. Dr. Demonte is the neurosurgeon in charge of the brain and spine clinic at MDA and Dr. Gidley is the ENT surgeon in charge of the head and neck clinic. Dr. DeMonte specializes in tumors of the skull base. If you have been diagnosed, I would highly recommend considering them for you treatment.
OK - a little about me. My husband and I retired 1 1/2 years ago and we full time RV for a lifestyle. I am 60 years old. This was a little bump in my road:-). I called MDA and asked if I could wait until mid August to come to Houston for my first appointments. Since the AN is slow growing they said I could. We had a trip planned to spend the summer in the NW but this appointment only got us to 2 months in Colorado - well worth the wait and a wonderful summer!!!
In August, I had an appointment with Dr. Demonte and he said I was a candidate for either surgery or GK. I just wanted someone to tell me what to do. You know when you go to the doctor and have to have your appendics out, they just tell you what to do. You have it done and hopefully you are DONE and WELL. He was so nice and explained both procedures. When I told him about our lifestyle, traveling and not living in one place, lots of hiking, kayaking, exploring, etc. He said GK could be a great option for the way we live. Surgery has its advantages - it is gone, but you are back in the saddle the same week with GK. He sent me down to talk to Dr. Brown who is the radiology oncologist - another wonderful doctor!!! He was definitely a great proponent of the GK. Then on to see Dr. Gidley who did an audiology test - 60% hearing loss and about 60% word recognition. Both Dr. Brown and Dr. Demonte said Dr. Gidley might be the big proponent of surgery but surprisingly, he wasn't. He was great and said with our lifestyle, GK might be the best option.
So, from there, I took all they said and headed for the mountains of West Texas for two months. We were signed up to Park Host in the Davis Mountains and all the doctors said I could take that time to make a decision. I spent this time reading, researching, reading the forum and praying for an answer. There just wasn't much pushing me for surgery. Not much at all. GK just seemed to be the best for my lifestyle.
So that was the decision. Notified MDA and set up the GK for Nov 16 - TODAY. What a journey. We came on Thursday. I met with the doctors on Friday and had a list of questions. All of which were answered with positive answers. Seems like all my concerns are things they haven't had happen. Seisures - Dr. Demonte said none in his experience. Continued growth - 98 percent or better for success. Complete hearing loss - in my case, cochlear nerve was spared so I have a 60 percent chance to keep my hearing. Balance nerve - should happen slowly and my left side will hopefully take over. He said I will never be "balanced like before AN". Little did he know, I was probably never too balanced :). I was given my orders to be at the hospital on Monday morning bright and early.
I arrived and MDA has valet parking for free for GK and radiation patients. You feel like someone so special at this hospital. I was taken down and was prepped for the head frame. The nurse who takes you back is with you all through the procedure. She was amazing. Dr. Demonte came in and has such great bedside manner. His NP was there too and also wonderful. Dr. Demonte explained everything he was going to do. He did the local anesthetic, which I won't lie, was pretty painful. I had an 11 pound child many years ago. Csection after 24 hours of labor, so nothing is quite like that. I can do anything and it is over quickly. After the anesthetic take effect, he places the frame on with the "screws" - they only penetrate the skin, but hold very tightly. MRI and Cat scan followed and that is painless because you are numbed over your entire head. After they developed my plan - Dr. Brown, Dr. Demonte, and two physisists, which was about an hour, I was taken down for the procedure. You get to go in a very nice room with TV, a comfortable bed to lay on and they bring you a great breakfast while waiting for the procedure to begin.
My procedure took 44 minutes. You are locked into the GK machine and they play whatever music you like - I chose some Kenny G. so I was relaxed and fell asleep. Sometimes I would hear the machine and with my eyes closed, I could see some bright lights, but when I opened my eyes, I saw nothing. They said some people do see this.
I was taken back to the nice room by my same nurse and then was taken care of by two more wonderful staff members. I had to wait about 2 hours to be released and then went back to our hotel.
I felt just fine, but was a little tired from the early dose of Ativan and I slept for a few hours. It is now 1023 in the evening and I went down to the hotel restaurant earlier to eat dinner and ate half a steak, potatoes and asparagus. Nothing is wrong and all went perfect and I decided to write this story.
I realize this is just day one and there are many things left to face over the next 2-18 months. I am just very convinced that I will get through all of these with flying colors!!! I have a great medical team that is available by phone or e-mail immediately. I am schedule for my first follow up MRI in May and just know it is going to be positive.
If you are facing an AN and are looking for a EXPERT team for your treatment, please consider Dr. Demonte, Dr. Gidley and Dr. Brown for your team. Ask for them specifically and make sure that is who you see - although I am sure all the doctors are wonderful. Dr. DeMonte is a skull base expert though.
I will continue to follow up as the days pass. We will be traveling 6 hours home tomorrow if all goes well tonight. I would love to visit with anyone who is facing this tough decision. Just as a quick sidenote, I met a man who was in for GK with me today. Three years ago, he has surgery for his AN and it has grown back to be double the size. He said I was making the best decision for GK as my first line of treatment. He is very positive about this GK procedure on his AN. He also had a menigioma years before his AN and had surgery on that one too.
Contact me if you have any questions. I know this was kind of rambling, but I do have a brain tumor after all!!
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I think having a frame screwed to your head would be like a walk in the park compared to having to listen to Kenny G for 45 minutes ;D
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Hi Sylvia,
Thanks so much for sharing your experience.
I find it comforting to hear that more surgeons are not just recommending surgery.
I know my ENT surgeon was completely against CK and GK and five years later is now discussing it with patients in a balanced way.
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What was it's size?
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The size of my AN was 1.7cm. It hadn't grown any in the four months from initial MRI to my GK procedure.
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I think having a frame screwed to your head would be like a walk in the park compared to having to listen to Kenny G for 45 minutes ;D
I prefer classical music and being in the GK or MRI machine always reminds me of this scene from Soylent Green:
https://www.youtube.com/watch?v=edQNjJZFdLU
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I had CK done on November 6 for a recurrence. I haven't had any side effects as of yet!
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For me, it was Welcome to the machine ;D
https://www.youtube.com/watch?v=lt-udg9zQSE
I think having a frame screwed to your head would be like a walk in the park compared to having to listen to Kenny G for 45 minutes ;D
I prefer classical music and being in the GK or MRI machine always reminds me of this scene from Soylent Green:
https://www.youtube.com/watch?v=edQNjJZFdLU
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For me, it was Welcome to the machine ;D
https://www.youtube.com/watch?v=lt-udg9zQSE
I think having a frame screwed to your head would be like a walk in the park compared to having to listen to Kenny G for 45 minutes ;D
I prefer classical music and being in the GK or MRI machine always reminds me of this scene from Soylent Green:
https://www.youtube.com/watch?v=edQNjJZFdLU
nah, I hear that already ;D
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How are you feeling? Thinking of you, since our procedures were so close!
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I am feeling good. I have a little lightheadness, but for the most part, I am going strong. I am going to balance therapy and the therapist says I am doing good. When I get tired, I just stop and keep my head still, rest for a few minutes and then I am back up and going again. Let me know how you are doing after your treatment.
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I am doing well. I get some weird headaches once in a while, BUT, I always did. They are a little more frequent now. Just bursts of pain and then it goes away. But earlier this week I had a whole head head-ache that was so bad that I woke up with it and asked my husband to get me acetominophen. I didn't even want to get out of bed. That's not like me. Anyway i finally decided on using Aleve for a couple of days and felt better. No Aleve for two days. Still get little bursts but no whole headaches! I have had balance problems since my first surgery so I am used to it! I can still go to exercise class (beginner level boot camp). Sometimes i tip over or wabble, but the teacher is aware of my situation. Looking forward to the holidays! Wishing you the best!
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Three months post radiation treatment. Everything is going OK. I have some weird things that happen every now and then, but for the most part everything is better than I expected. I have had two incidences that I am sure are tumor/radiation related. One day, I lost my hearing completely in my tumor ear. It was immediate - just one minute hearing and the next it was gone. After a few minutes, it returned and over the next day, returned. Hearing is still impaired in that ear, but can at least hear again.
Then one morning I woke up and my eyes felt weird. As I got up, I found that my eyes would not focus. It was like both eyes were going in different directions. I could not bring them back together. This scared me and I was very worried it might be permanent. It would have prevented me from continuing life as normal. I don't think I could have driven like this. I sat down for a few minutes and kept blinking and finally my eyes focused.
I have continued to exercise by walking at least 5 miles every day and sometimes more. I find myself a little off balance and dizzy sometimes and my foot will drag and cause me to stumble every now and then. The light headedness is the part I don't like the most and it isn't all the time. As I have read several times, this is a new normal and just have to get used to the changes.
If you are contemplating treatment, I would definitely recommend radiation over surgery. I go back for my first post treatment MRI in May so more to follow then.
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Glad to hear from you, Sylvia. I can relate to how you must have felt after those two incidents. It temporarily brings the situation to the forefront of your thoughts for a while. Then when you feel better, the thoughts go away (mostly). Tomorrow I go to Montefiore in the Bronx for my 3 month MRI but I won't gt the results until the 29th. I have days of nothing, then days of little bursts of pain. But that's it and I hope it stays that way! Sounds like a wonderful life you've made for yourselves!!!!! Keep it up!
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I am so thankful for these forums as I face this issue. I just wanted to thank you for your post!
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Who are your doctors in San Antonio? I'm from SA and was diagnosed at the ear clinic by Dr. Syms. My surgical consult was Dr. Bogaev. I didn't wait for Syms to decide a course because he thought it was on my facial nerve, so I got right on it and spent 3 months exploring options. Bogaev was my surgical option, though I told him I would go to House if I needed surgery, but everyone agreed, radiation was the best course because of facial nerve involvement. My research suggested GL or CK were good surgical alternatives, and as it turned out, Bogaev trained with a neurologist now at UVA who runs the GK center there. I talked to him and decided that was my choice. I'm now 2 months post zapped.