ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Bobette on July 11, 2012, 08:25:43 pm
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Hello Everyone!
Today was my pre-treatment day at Stanford. I wanted to start my journal here because I have had a lot of worry over how this all would go down. I found out today that my case worker was supposed to provide me with an informational DVD at the time I booked my treatment, but did not.
I am happy to report that so far, all my worry was for nothing. I arrived at Stanford this morning at 7:45 a.m. and reported to the CyberKnife Unit. I was greeted by an RN who explained to me what would transpire today. First she put in an IV line. She explained I would be having a Cat scan and an MRI and this would keep me from having to be stuck twice (which I appreciated). The nurses there were very nice, I found myself laughing and joking with them and talking about the All Star Game.
Next stop - Cat scan and mask making. I have never had a Cat scan and actually did not know I would be having one today. I laid on the table and they placed a bubble wrap type material underneath my head that instantly started shrinking and conforming to the back of my head and actually felt very comfortable. Then out came the material for the mask. I was thinking I would be a Freddy Kruger look-alike, but they showed me a rectangular piece of blue plastic-looking material that had small holes. They wet it and placed it over my face, stretching it down towards the table and affixing it to the table. The plastic turned into a mesh-type material as it stretched, making it very easy to see and breathe (that was my biggest worry, would I be able to breathe well).
The contrast was injected, called Visipaque (147 mil) and then into the tube for a very short Cat scan, about 5 minutes top. After the scan I was shown my mask which had dried -- it made me laugh! I was told I would need to drink at least 6 glasses of water before I drank any other liquid such as soda, ice tea, coffee, etc. in order to get the contrast to flush out of my body.
After that, a nurse escorted me to the Radiology Dept. at the Main Hospital for my MRI. The MRI was also short and sweet (about 20 minutes).
My next stop was to ENT for an audiogram. Found out my hearing loss has gone from moderate to severe. The audiologist said my speech recognition test came out well and that after treatment I may be a candidate for a regular hearing aid.
Next trip to Stanford, Monday afternoon at 4 p.m. I am really looking forward to being a postie. I will update again on Monday.
I feel very happy and joyful and very optimistic!
Bobette
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best wishes,
i for one will be following closely, as i start this journey august 6th, for a five dose treatment course.
so please keep the play by play commentary coming.
aces,
jesse
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If you thought the prep was no big deal, then you are in for a pleasant surprise for the actual treatment. You just lay there for 30 minutes and relax. I think I even dozed on and off...I just went to my "thinking" place. I didn't want any music, as the noise bothers me in a room like that.
I took a camera and had the guy take a picture of me all strapped down with the mask, blanket, etc., so I could show everyone. (makes it look really bad!) LOL! You'll get lots of sympathy...ha/ha. They don't mind taking pics, i think they do it all the time.
Tisha P.S. good luck!
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Bobette-You sound wonderful!
Thanks for the updates on how the cyber is proceeding! I appreciate your sharing as I have had a second MRI and my AN has grown longer from 1.2 (or 1.1 depending on which doctor )to 1.4 these last five months. Because it is growing my two ENT's say it is time to talk about the pros and cons of procedures. I don't know if these teams offer cyberknife. I do know they do all three types of surgery and one does gamma for sure.
Keep up the great work and we'll be following you with prayers and good wishes.
Mil
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Hi Bobette -
Good to see you posting and hear how positive your experience is. You really have been through the worst of things now. I think the shock of the mesh material coming down over my face was the worst for me. Your treatments will be the easy part. Funny that Tisha said she dozed off... I remember thinking my mind was racing but I was actually sleeping when the last treatment was over.
Looking forward to hearing your thoughts when you are done. Nothing but good wishes coming your way.
Mary
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Hi Bobette!
Good to see your positive outlook! It will help those of us that are still deciding whether to go through with this treatment or not. As you know, I went through GK treatment so, it helps to get a CK perspective. Please keep us posted when you can!
Mike
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Well today was D day! (I mean CK day!) ;D
I arrived at the CyberKnife unit; signed some authorization treatment papers and sat down with a woman radiation oncologist. She told me my tumor had grown at its largest point, so it is now 2.3 cm (in just 4 months!). She agreed that I made a good decision to treat and not watch and wait. I was given 4 mg of Decadron (steroid) and another pill that was an anti-nausea pill.
They took me into the CyberKnife room with my family. They all stood there while I laid on the table and was adjusted and fitted with the CyberKnife mask. My SO even took a picture of me lying on the table with the mask on. My I-phone was put in a dock and my music started to play.
Everyone left the room and the process started. The machine takes x-rays during the treatment to check any movement to keep the radiation beams on track. When the x-rays are being taken, the table you are on moves, so I knew when it was taking x-rays. I kept my eyes closed during most of the treatment. The machine was not very loud but I could sense it moving around me. I was able to totally relax and the time flew by. It seemed a few minutes later a technician came in and said I was done.
I am getting ready for bed now, they want me to rest. I feel really good. I don't feel any different than before treatment (other than relieved that I am on my way). One treatment down, two to go!!!
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Way to go Bobette!!!!
First treatment done rest, rest you did a good job today your tumor is being given its death blow! Keep us posted!
Mike
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That's great! It truly is such an easy procedure. Good luck with the remainder! Tisha
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Hi Bobette! Thanks for the update! You are well on your way... expect 2 more days of the same. Best advice for now is to rest all you can. Post to let us know your progress when you can.
Mary
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Carry on. Bobette! Praying for you. Millie
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Hello Everyone!
Just got back from my treatment Day Two. Everything went just like yesterday -- was given the Decadron and the anti-nasea pill and onto the table I went. I was much more relaxed today and counted the songs - 8 in all and then they came in and said I was done. I feel very tired right now, but that's it.
Also wanted to report that I woke up this morning with LOUD tinnitus, but it quieted down a bit after about an hour. I felt great. Went to work on the BART train to San Francisco. The train goes into the Transbay Tube, which is an 8 mile tube under water. When I left the train I felt a little wonky, but stood for a few minutes on the platform and it subsided as quick as it came. Otherwise, a great day!
Tomorrow is my last treatment. I am so excited.
I am very thankful this machine was invented. God Bless you John Adler for your invention! Anyone who is considering an alternative to open surgery, I think this is a good one. I was on a one year watch and wait when I came across Francesco's website. After listening to his interview with Steven Chang at Stanford, I knew I needed to make an appointment and see him and not wait a whole year. The link for his website is here: http://www.myacoustic.org/home.html
Good Nite Eveyone and thank you all for your well wishes.
Bobette
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Bobette,
I am so excited for you that this will be your last day of treatment! I must say your peaceful attitude about treatment is what makes it attractive. Once you have chosen your docs and trust in their judgement there is not much else to do but to Let Go and Let God! I am glad that you will be joining the toastie postie club soon! I wish you rest and healing. Post when you can and drop me a PM when you can.....
Your GK friend,
Mike
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Great news, Bobette! I can't believe you are back to work! Just a question-did the doctors say the wonkiness would lessen, or (dare I hope) go away completely?
You did your homework and found your doctor and the method right for you! We can do this!
Millie
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So Happy to hear that day 2 went so well for you! Two down one to go!
Just rest when your body tells you to ... the relief when you leave the last session is such a wonderful feeling. All there will be left to do is get on with the rest of your life:)
All the best to you -
Mary
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Well, it's a done deal! Had my last treatment at Stanford yesterday. I won't be back there for six more months for a MRI to confirm the death of the tumor. (Toomer -- my last name is Tolmer, so it seemed appropriate).
On day three, everything went just like the previous days -- was given the Decadron and the anti-nasea pill and onto the table I went. I was VERY relaxed and even opened my eyes a few times to see "Dino" (the nickname Stanford uses for the CyberKnife machine) moving around me.
After treatment, I actually went to an outlet store and bought some new shoes! Went home and went to bed. I actually did not sleep well last night, I don't know if it is the build-up of the steroid pills or just my mind racing about all the things I want to accomplish now that treatment is behind me.
This morning I have fullness in my right ear. I woke up feeling very tired, but I am drinking a cup of coffee and starting to come out of the fog. I am planning on going to work and on with my life (thanks Mary for the encouragement!)
Dr. Soltys reminded me when I left yesterday that I have been on steroids for the last 3 days and the steroids are masking any symptoms I might have. (No more steroids.) He said "don't be surprised if you have some symptoms but they are ALL transient and you can call us if you need anything." I will be sure to keep you up to date on my progress.
For any of you considering CyberKnife, I have to say that this seems like a miracle to me. The doctors say 96% chance the tumor will die and the treatments were VERY easy. Now it is healing time. Also Dr. Chang did mention to me that his CyberKnife patients do seem to be impatient about the healing process because the treatments are so easy -- his surgery patients expect ups and downs and a long process of healing and the CyberKnife patients because of the ease of the treatment seem to forget they have a healing process too.
One day at a time, but the outlook is good. :D
Bobette
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Thanks for that insight on the recovery process from cyberknife. I would think that applies to gammaknife surgery too.
Here's to a good strong recovery!
Millie
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Hello Everyone!
Just wanted to give a little update on me following the CyberKnife. I have to say the treatment was very easy - now the recovery part. I was told by Stanford you can work, you can drive, etc. etc. during treatment. After these last couple days I think that is a little optimistic. My humble suggestion is that if you have the benefits at work that would allow you to take some time off, take it. These treatments are easy but I can tell my body is not functioning at 100%. I went to work on Thursday and saw all the work piled up on my desk and immediately started crying. :-[ (Coming down off the steroids?) I also immediately realized that I did not have the energy to make it through the full day. I sat down and told myself I would do what I could that day and then go home. I worked 6 hours and then went straight to bed.
On Friday morning, I knew there was no way I could do all the walking I would need to do to get to work. I was still exhausted, depressed and my head felt sore, especially at my temples. I stayed home all day and watched TV and slept. I did take some Tylenol and it helped with the sore temples.
Today, Saturday, the depression is starting to lift. I am taking it easy today and do want to at least get out in the sunshine, even if it is sitting outside in a chair in the sun and maybe getting a pedicure. That's probably about it for today. I did just take some Tylenol for my slight temple ache.
I feel like you do when you are getting the flu, tired, achy, etc. Nothing horrible. Absolutely no balance issues. I have tinnitus and it has changed to more of a crackling sound. I'm listening to music now. ;D
My best to you all,
Bobette
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Thanks for the update and PM Bobette.
Why do you think your temples are hurting on both sides? Do the beams hit both temple areas? I was under the impression that the beams intersect at the point where the AN is...that side only?
Rest, eat, sleep, feel better......take care.
JW
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Hi Bobbette -
Congrats on completing your treatment. Your return to work sounds similar to mine. I took one week off for treatment etc and then went back to work... first week I lost a day and a half... second week one day... third week I made it through. I have found that coming home from work and taking a nap for about 45 minutes really helps with the fatigue. Do what you can don't push too hard... getting yourself stressed will only cause the symptoms to get more intense. I think I cried quite a bit the first couple of weeks... let yourself feel what you need to feel. I am at 6 weeks now and it is getting better... It really does get better. My ear feels full more often now than before, the tinnitus more apparent and a throbbing on the AN side... I just remind myself that these are just signs that the radiation did what it was supposed to do... now my job is to be patient and let it happen.
Keep reaching out... you aren't alone. Take care.
Mary
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Following your reports, Bobette, and praying for you.
Millie
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Well, one week post-CyberKnife and I am feeling pretty darn good today. I notice day by day my energy seems to be coming back and I am doing better at coping with this LOUD screeching in my head. I bought some new headphones and have been listening to music when I feel the sound is getting a little too loud to cope with.
I have only missed one day of work since the treatment (I don't suggest working if you don't have to). Yesterday I was able to get a fair amount of work done and then went to AT&T Park and watched 3 innings of the SF Giants game before going home and to bed.
My head and temples are no longer sore and I have not taken any Tylenol today. My only real complaint is the tinnitus. I am going to re-read Derek's post on a healthy lifestyle and start incorporating more of these into my life and see if the tinnitus settles down.
I remember going to a AN support group a few months ago and a gentleman walked in with the most beautiful smile and happy countenance. He said he had had CyberKnife two weeks before and felt great! I can see myself there in another week.
Bobette
;D
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Hi, Bobbette ~
Following your Journal and delighted to learn that you're doing so well in so short a time. A real testimony for the efficacy of CyberKnife. May your healing continue apace. :)
Jim
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Hi Bobette
It has been a while since I have been on, I hope you remember me. I have had my ups and downs but overall ok. I was on steroids twice after treatments. The first time may have helped but I do not think the second did. The next thing that stays on your mind is the 6 month MRI and you think about it more as time goes on. I actually stopped signing on ANA to help forget about the wait. The symptoms should settle over time but with some flareups. Be strong, everyone is here to help. Your and my MRIs WILL show necrosis!
Bill
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Happy Tuesday Everyone!
I'm happy to report that things are still going pretty well.
The tinnitus is constant (it was before). It is louder, but it seems like it does simmer down a bit here and there. I may be coping with it better, I am not sure. My hearing seems to be a little worse. My next hearing test is in January when I have the MRI.
My energy levels are okay. I have been going to work every day and getting a fair amount of work done. I am definitely not on my "A game," but still feel like I am useful at work. I work for a law firm and the work definitely does not stop. If we hadn't switched law firms, I would definitely be taking advantage of the short term disability benefits I had (I think 2-3 weeks would have been nice).
Tomorrow it will be two weeks since my last treatment.
@Bill - I'm glad to see you are back on the boards. I totally understand worrying about the next MRI. When I was leaving after my last treatment I said "I hope this works." Judith, one of the radiation oncologists said, "Oh it will work, no doubt about it." When I get discouraged, I think about what she said.
My SO tells me I should stay off these boards and move on, but I don't agree with him -- I have lost some things with this AN - a good deal of my hearing in my right ear, quiet (thanks tinnitus!), energy, and peace of mind. I need the encouragement from others and I want to be an encouragement to others.
We will definitely get good reports at our next MRI.
Bobette
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My SO tells me I should stay off these boards and move on, but I don't agree with him -- I have lost some things with this AN - a good deal of my hearing in my right ear, quiet (thanks tinnitus!), energy, and peace of mind. I need the encouragement from others and I want to be an encouragement to others.
Bobette ~
I admire your attitude and appreciate that you want to encourage others. These forums need folks like you with a willingness to share their stories and offer both understanding and encouragement to AN patients that are fearful, confused and/or just overwhelmed. I look forward to your future postings.
Jim
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Thanks Bobette for the all the updates. I am at decision time and am looking at the Cyberknife. The Doc here trained at Stanford and comes highly recommended. One final look for me is the Proton Therapy. It is close by but does require 30 visits. Does not use photon as the radiation does but uses protons that target the tumor and then the energy rapidly dissipates without affecting surrounding tissue. Have an appointment at their facility and will know more. Back in the research mode and checking this out.
Thanks again and am glad you are doing so well.
Skip
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Thank you for sharing your story, Bobette. I've been following your posts and you are a great help to me. I am glad you're feeling stronger.
When your ears are ringing, remember you are not alone! Rest as much as you can after work.
Millie
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Bobette;
I just want you to thank you for your journal. I had my CK treatment done at Stanford last week, and days before my treatment your journal gave me a great inside about what to expect. You have no idea how much of a help your journal was. I must read it 10 times, even the night before simulation. BTW I counted 6 songs for my treatment, however the mask was a whole ordeal (even with ativan). It made me very anxious, but I played the trick of counting the songs, and the 2nd and 3rd treatment were a little better. Anyway, from NY, Bobette: THANKSSSSSSSSSSS and and the best on your journey.
Dani
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Hello Everyone!
Four weeks out and all is well. I am not experiencing any headaches, still have the tinnitus (but I am coping quite well with it), and still get tired in the early evening. I do have balance issues, but only when I close my eyes, so I keep them open as much as possible (especially while walking!) LOL! Work is okay, I do have one co-worker who is very unsupportive, but I am learning to cope with that also.
@Dani - I am so glad that I have been an encouragement to you. Thank you so much. Please keep in touch and let me know how you are doing. Everyone on this forum is so supportive and encouraging. I am so thankful that this site is here. Wasn't Stanford amazing? They called me last week to check up on me.
@Millie, Mary, JW, Jim, Skip, Bill, Mike D., Jesse, Tisha - What a blessing and encouragement you have been to me, thank you so much. ;D
Had lunch with my former co-worker who also had an AN (we call it tumor talk). She had translab at House 1 1/2 years ago (and was not a candidate for CyberKnife or Gamaknife). She is doing well also. It is so encouraging to talk to others in the same boat.
Hope you are all doing well. ;)
Bobette
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Hello Bobette!
So nice to hear things are going well for you. I haven't been on this site for a while and almost missed your update.
I am almost at 3 months now and have similar issues to yours balance issues, pressure, fatigue and tinnitus. I recently made the decision to switch doctors because I don't think my doctor really listens to what I say. I did the research and actually found a local doctor that did a fellowship at House Ear Institute and everything I hear about him is positive so I will be following up at 3+ months on the 26th with him. I'm anxious to know what the next MRI will bring.
Stay well and be happy and continue looking forward.
Mary
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Hello Everyone!
Well it has been 3 months since my CyberKnife! I am really looking forward to getting my MRI in January to see the damage to this tumor.
Things have been going very well. I still get tired in the early evening but I am pretty active during the day. I still have the constant tinnitus and I sometimes get a feeling of pressure in my right ear. One day last week my right cheek felt numb like I had been to the dentist. I just massaged it a bit over a hour's time and it went away.
As for hearing, my right ear seems pretty useless most of the time. I do find that in noisy rooms my hearing is shot altogether, even though my hearing is normal in my left ear. In church, when they are playing the worship music, I can seem to hear it out of my right ear. It would be wonderful if I can get a hearing aid in the future.
I met a lady who had a malignant brain tumor inbedded deep in her brain. She had Gamma Knife about five years ago and it was totally successful. She is singing the praises of Gamma Knife to anyone who will listen. As soon as I get my good report in January, I will be doing the same for CyberKnife! Stanford has been wonderful.
Hope you all doing well.
Bobette
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Bobette,
Thanks for the report and thank you God for the continued success story. I am in my 2nd week of PT. No not physical therapy, but proton treatments. God is good and all is well.
Skip
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Bobbette ~
Appreciate your very encouraging update. May things continue to go well for you so you can sing your own praises of CyberKnife! :)
Jim
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Thank you so much for the posts here. I just found out that I have to have cyberknife after having surgery 2 years ago to remove my tumor.. I was shocked when the drs told me that the piece they left in there had started to grow after just 2 years... Reading the posts here have really helped me to relax about this. I am really hoping that after cyberknife that I will no longer have facial paralysis and this is it.. the piece of tumor left is less than a cm so I am hoping to have no issues.
THis forum is the best!! It has helped me TREMENDOUSLY over the past 2 years. :)
Keep positive everyone..
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Good luck to you doglvr! I am also shocked to hear this news, I will be praying for you. CyberKnife was a piece of cake. Like I have said in my previous posts - if this is successful (which they tell me it will be) I will feel like I experienced a true miracle.
Just as an update - I am feeling great! My energy is back and there are alot of days I don't even think about my AN at all!
I just attended one of our support group meetings in San Francisco last week and an audiologist gave an outstanding lecture on the hearing options available to us SSD or almost SSD people. I am very encouraged by all of this and am looking forward to seeing what I can do to eliminate the frustration of being in noisy, crowded rooms and not be able to hear anything!
My best wishes to you and everyone here at the forum.
Bobette
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Hi Bobette,
I remember getting to the 6 month mark getting my MRI and expecting to see early signs of death in a darkened blob.
So was quite disappointed to see a significantly bigger blob and no darkening or change whatsoever in its consistancy.
At two years its now shrinking... but still no change in texture.
So what does it all mean?
The experts tell me absolutely nothing, necrosis, no necrosis, swelling, no swelling.
As long as it has reached its maximum size at 2 years, its a successful treatment.
So don't be in anyway disheartened like I was when at 6 months it was bigger and showed no sign of death whatsoever.
As for hearing, you may get lucky.
I had similar problems with noisy environments for many months and greatly diminished hearing.
My hearing was pretty useless post Cyberknife, and had been on a downhill slide for a few months prior.
My hearing improved for 24 months post Cyberknife across all frequencies and almost made it back to my original hearing.
I have since lost some hearing after a bout of sudden hearing loss, but my hearing is still considered within the normal range.
Since the bout of hearing loss in late July my hearing has slowly been returning once again, and is still improving.
So fingers crossed things may improve with your hearing even 27 months out like me.
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Paul, thank you so much for your reply and your encouragement. I am going to print it out and keep it as a reminder of what can happen. They told me my hearing will never come back but I don't believe them. I am already seeing that the tinnitus is starting to get better and I can hear better when that is not raging.
Thank you also for being two years out and continuing to encourage others. Reminds us that even when this AN isn't controlling our lives anymore that we still need to be here helping others that are behind us in this journey.
Please keep in touch.
Bobette
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Hi Bobette,
I had my six month MRI yesterday and after work today went to the post office to overnight the disc. They said Stanford should have it by 12 noon your time tomorrow but not sure when they will get to it and then get back to me. I'm not sure who you have been dealing with but I have been keeping in touch with Laurie Tupper N.P. with Dr. Soltys' office, she has been great. My tinnitis is still strong and have had some periods with my hearing getting bad. During these six months I have tried to forget about what may be ahead if the CK did not work but it is getting to me now because of already being deaf in the Left ear with the AN in my right. I hope I can sleep until I get that call. It would of been nice to of met you when my wife and I came out there last May. I'll let you know what happens.
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Hi Ashman,
Stay positive. Believing with you for a good report. CK did work and you are still on your road to recovery. I do pray that the bumps we encounter on this journey are small and the curves stay smooth.
Skip
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Amen Skip!
I am praying for you Bill. We are all on an uncertain road - but we did have the best doctors you could ask for - Drs. Soltys and Chang. Laurie Tupper has been great too. I wish you could attend our support group meetings at Stanford, lots of very happy post-CyberKnife patients. I'm looking forward to your good report.
Bobette
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Skip and Bobette,
Nothing went as planned. The disc arrived late, Dr. Chang was on vacation, the holiday and Dr. Solty had a situation. I was very stressed waiting to hear something, I kept wondering if there was a problem. I got the call this Monday from Laurie, Dr. Solty confirmed that the AN grew 1 cm which is normal and the center looks dark which hopefully is the beginning of necrosis! I feel a lot better but now need another MRI in six months. She said I will need MRIs every six months for 2 years and then yearly until needed. I know the news is good but it is not over until it is dead. I do though feel very lucky at this point. Thanks for all your support. It appears everything is going as planned for myself and Bobette you came behind me and had the same procedure with the same doctors. I feel you will have the same outcome as I. Please try to stay calm the closer your MRI date gets. I was ok until the day of my MRI, wine helped. Good luck Bobette, I will be thinking of you, keep in touch. ASH
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Ashman,
That is good news after the difficult start. All things will eventually come together for the good, so I believe. I am 1 week out of proton treatment and all is good. I month check up just before Christmas and then on to the road for a full recovery.
Skip
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Dear Post CK AN support helpers, I have just been told of my AN and it affects my hearing, some balance issues, and eyes are dry... I am getting more depressed b/c this has already been a tough -v. tough 7 years and now this.. I have gotten good advice from neuro MD and radio MD Dr Chozick and Dr Shumway respectively at St Francis, in Hartford CT.... it seemed as if they want me to move along with thsi saying my hearing loss if it grow can get worse and won't come back once it is lost. Is that true? Also I have another opinion that said to go where it is convenient b/c cyberknife ck is accurate once it gets planned out??? Dr Cook does AN but is faar for me I have some prior issues and maybe it is the balance so I never want to go alone to drive now I am so different than before I even knew the AN was causing this - I thought it was swimmer's ear or???? I always have had headaches and neck pain for over 10 yrs so I was motrying to sek MRI for that.then this wow - not processing this too well... I hope to get some more answers after mailing out my results w/MRI's to 4 Dr's. hoping they can varify what these 2 have said. Dr. Cook in Lowell,MA said it was not immediate but it doubles in size every 18 months. Mine is sm. 4mmx3mm but is the location that is causing the hearing loss and .. I wonder if ST Francis is as good as Stamford as they have done only 25 of these and have had the CK since 2006 .is that Stamford ,CT? Is CK newer and more improved than Gammaknife? Are the outcomes as successful or are the side effects simular? I am overwhelmed and trying to decide if to go to Yale or Boston but sitting driving kills my neck and back so I hope these MD's can get back to me by phone with their stats I pray they do. Your support Bobbette and everyone so far is a miracle... I taught mind body conection and now wonder how many others have tried mindfulness and all to help keep our minds from being down...this seems like a lifetime vs a fix it diagnosis...so I am in .... Should I watch and wait- does hearing ever come back once it is lost? thought it didn't but thought I read on our forum it came back with someone??? Hoping and praying for answers & strength, Love and healing to all ....Grace
Are the balnce, hearing and facial nerve tests necessary? as if I go to Yale ,Dr. Michaeledis wants allthe tests done befere we meet. Has anyone heard of him as an AN specialist? does anyone get depressed with thsi ? what helps besides this forum?
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Hi Grace, I'm sorry i didn't see your post until now. This forum is a great support and comfort, that is for sure. I found this site also helpful: www.myacoustic.org There is a 2-1/2 hour interview of Dr. Steven Chang of Stanford about Cyberknife. It really helped me make my decision about having CyberKnife.
Life is different since my AN diagnosis, but it is still good. Keep your chin up and get all the information you can.
Bobette
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Hello All,
Yesterday I had my six month checkup at Stanford Hospital. It consisted of a hearing test, 55-minute MRI and meetings with Doctors Chang and Soltys.
My hearing test showed that my hearing levels were unchanged, but my speech recognition is now 40% instead of 80%. The audiologist said that conventional hearing aids would not work for me at this level, but there are other options for me. Dr. Chang was not concerned at all about the hearing change and said my hearing could improve in the next six months. I will have another hearing test in July.
BUT, the great news is -- my MRI showed a black dot in the center of the tumor, and it is slightly smaller than in July!!!!
The doctors said I am on track and they are very happy with the results thus far.
Back to Stanford again in six months. I am VERY happy!
I feel great - I still have tinnitus, but it seems milder these days. My balance seems fine, but I did a "walk the line" test and although I didn't fall, I wonder what a police officer would think. ;)
Bobette
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Hi, Bobbette ~
Thanks for the great six-month update! It's reassuring to learn of how well you're doing in such a short time from your radiation treatment. Many your healing continue at this good pace! :)
Jim
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Bobbette,
That sounds fantastic. So great to hear such good news. I had gamma knife on October 12, 2012, and go back in April. Praying my MRI shows the same thing.
Cindy
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Congratulations Bobbette, may your journey be smooth sailing from here on out. I go back for an MRI in March. Finished Proton in November.
Skip
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Great news, Bobbette! I have GK scheduled in 2 months and I hope it goes as smoothly as yours.
Best wishes,
Petrone
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Congratulations, thats great news.
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I'm happy for you Bobbette. You are lucky to live near Stanford, my cross country trip was well worth it. My speech recognition also dropped, my tinnitus is worse and hearing worse. But really happy I still have hearing in that ear since I'm deaf in my other one. My 12 month MRI will be in May and hope to see more necrosis. The closer it gets to the MRI dates naturally the more it is on ones mind. Good luck with your next six months and hope to see your positive post on your next MRI. Also good luck Skip with your MRI next month.
Ash
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Just want to thank everyone for their posts and willingness to share. Thanks, Bobette, yours have really helped me because my case seems similar. I, too, am going to Dr. Chang and Dr. Soltys--scans are scheduled for Tuesday, April 2, with GK treatments the following three days. I am so ready to get this done so I can start the recovery process! My tumor is 2.1 cm and is actually on the 10th cranial nerve--the vagas nerve instead of on the 8th which is the acoustic. Dr. Chang said it is treated basically the same, though. I don't know how that will influence the side effects that I will have. My major symptom is hearing loss--almost total in the right ear and slight balance issues. But I wish you all continued good luck and will post again when I am a "post-toastie!"
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Hi miparent,
I have been thinking about you. Please let us know how you are doing. Are you from the Bay Area? Maybe we can get together and chat.
Bobette