ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: gary.s on April 16, 2018, 09:31:41 am
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In a couple of hours I begin my first of five sessions of Cyber Knife. I will start my story from the beginning of when things started to go wrong.
We had a family trip in the mountains of Colorado about four years ago. I thought the elevation change was causing my right ear to feel full of pressure and my hearing muffled. When we got back down to sea level, the symptoms did not clear. Once back in Arizona, I saw an ENT to evaluate my symptoms. I was given antibiotics, nasal sprays and told that my allergies were causing the problems. I also started eating raw honey to help with the local desert allergies. I tried various homeopathic remedies and still nothing worked. I was of course concerned and frustrated.
I essentially suffered with a loss of hearing and balance issues until January of 2017, when I decided to see another ENT. My hearing test indicated a possible tumor, and the MRI verified that an acoustic neuroma was present on the right side of my brain. The tumor measured 1.59 cm x 1.40 cm. I was referred to a neurosurgeon at Barrow Neurological Institute in Phoenix, and I decided to Watch and Wait with the approval of my doctor. My next MRI in April of 2017 showed no growth of the tumor. I took another MRI in September of 2017 and still no growth. Over the next six months I started having some facial numbness and a loss of taste on the right side of my tongue. I took my next MRI on March 5, 2018, and the tumor grew to 2.07 cm x 1.70 cm. My neurologist told me that growth of these AN's can occur at anytime. They can remain essentially dormant for long periods of time, even years, and then take off growing again. It is impossible to know how long my AN was stable with no growth prior to my latest MRI.
In a couple of hours I begin my five day adventure with the Cyber Knife machine. I will continue posting as the days go on.
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Wishing you smooth sailing today and from this point onward.
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Thanks notaclone 13,
You have been hanging in there with me. I appreciate it.
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Good luck! Wishing you the very best in your treatment :).
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Just got home after my first cyber knife treatment and it was really quite easy. I was given a 1 mg lorazepam tablet to keep me calm under the mask, since I am quite claustrophobic. All of the doctors arrived, neurologist, radiation oncologist, otolaryngologist, and the physicist. It took them about 15 minutes to check everything out and then the machine started. It went all around my head, finding areas it can penetrate so as to hit the tumor without damaging other tissue. The actual cyber knife radiosurgery took a total of 26 minutes. I felt nothing and things seem quite normal. I do have a slight headache, but that could be from the lorazepam mixed with my own stress. They played music in the room and that was nice. One day at a time.
Gary
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I also developed a slight headache after my third radiation session. My oncologist recommended Advil to reduce inflammation, which worked beautifully. He said if that didn't work, I might have had to be put on steroids, which I definitely did not want. I'm glad your first session went well. The hardest part is to lie absolutely still with that mask on but I found it fascinating to watch the Cyberknife "arm" move around my head and marveled at the advances in medical technology that makes radiotherapy an option for many of us.
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I had my second session of Cyber Knife this morning and it lasted about 40 minutes. I watched the machine go around my head for a while then fell asleep. It will be the same pattern each day, so nothing new to see. Last night I began to feel pressure behind my AN ear and that caused headaches. Woke up this morning with the same feeling. Tylenol did nothing, nurse told me to take Advil. That is helping. I am also getting the sound of a chime in my AN ear since beginning CK. Have to see if that continues. Other than the mask holding down my head and the need to stay still and quiet, it is pretty easy stuff. I will see what tomorrow brings.
Gary
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Hi Gary, that makes it 2 down, 3 to go. Sorry to hear about the headache, but it appears to be a frequent occurence after radiosurgery. Does one advil do the trick, or do you have to take a couple? Nice that you could catch a few zzzs during the process. Beats claustrophobia that's for sure. Thanks for posting each day. Let us know how tonight and tomorrow go.
M.A.
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Had a pretty good sleep last night, only took one advil yesterday to make it through the day and night. A little bit of pressure this morning at the AN location and some pain at the base of my tongue. Another advil should help. i will ask about the tongue issue when I go in for my next treatment this morning. I have had chirping in my AN ear since the first Cyber Knife session, sounds like I have a little bird living in my head. Have to get ready for my next session.
Gary
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Third session of cyber knife is over today. Two more sessions left and it will be over. Another 26 minutes radiation, but spent a total of about 40 minutes under the mask. The doctors have to check the computers and give final okay before the machine starts. Mask is tight on my nose and chin and that is why my tongue has been hurting. I am grinding my teeth and attempting to move my mouth and that is causing muscle strain.
I am off kilter a little when walking, headaches taken care of with advil and tired. All else okay, although my brains do feel spaced out to say the least. No problem eating anything and everything. Stay strong.
Gary
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My fourth session is completed and the radiation is finally catching up to me. Feeling tired and kinda funky in the head. Almost feels like a bad hangover. No real headaches today, just some pressure behind my right ear where the tumor is. Sleeping a lot, which is nice and makes the time go by faster. I cannot sleep on my right side with the AN on the pillow because that causes pain and pressure. So I have to sleep either on my back or on my left side. Other than being spaced out, I am really doing okay. One more session tomorrow and my wife and I can clear out of this hotel and drive home. Looking forward to going home and resting in my own bed.
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Hi Gary! I am so glad things are going well. I'm sorry you got a bit of a headache and have some pressure, but I am sure that will fade once you get home and have a nice rest in your own house. I've been reading your updates and thinking good thoughts for you :). Here's to another successful treatment tomorrow!
I start mine on Monday, and had a whirlwind of appointments with Dr. Chang and Dr. Hancock and then picked up medication - I get a rash when they use the contrast for MRI, so they put me on Prednisone and Benadryl in preparation for the MRI. I also got a CT scan! A first for me. They gave me 1 gram of lorazepam for the CT scan, simulation and MRI. It worked a treat as far as feeling claustrophobic and nervous! So thank you for the tip!
I guess maybe I should create a treatment journal too - I found that of others so helpful in figuring out what to do ;D Wishing you a continued smooth journey!
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Hi Gary,
One more treatment and you are over the big hurdle. Hope things go well tomorrow and that by evening you are safely home and resting in your own bed. Sorry about the discomfort you are having on the AN side. Wondering if they will send you home with medications to combat pain and swelling should it occur. Many have mentioned getting steroids. By tomorrow evening you will officially be a "postie toastie" as they say on the forum. We very much appreciate you sharing your journey with us. Many of us will be following in your footsteps sooner or later.
Hi Gtmochi,
Sounds like they are taking good care of you at Stanford. It is fortunate that you live in California, an oasis of excellent AN treatment. Have you completed both CT scan and MRI? Have they made your mask yet? If so, you have the week-end off to relax and enjoy yourself. Hope things go smoothly on Monday. Did either doctor mention how many Gys you will receive? How is your hearing at this point? Is it still in the normal range? Please keep us in the loop so we can share your CK experience.
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Hi Gary!
I forgot to say very best luck on your treatment tomorrow. It sounds like its taking a toll, but with lots of rest at home you'll be yourself again. The stress of everything plus the actual treatment is a double whammy. Happy trails and best wishes tomorrow!
Hi Notaclone13
They are taking good care of me and I certainly am lucky to be in AN-land as well as Lalaland! I completed my CT Scan and MRI, and they made my mask. I think Dr. Hancock said my treatment would be for 18gy - I will double check! My hearing is pretty good - very mild loss there. Here's hoping I still retain some after all of this. I started a little journal of my own here on the forum - reading others' stories has made such a difference for me, I felt it was right to pay it forward :).
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Just finished my fifth and final Cyber Knife session at Barrow Neurological Institute in Phoenix, AZ. Medical staff was wonderful to me, very sensitive to my needs and concerns, and always asking me how I was doing. My final treatment lasted about 25 minutes and I was done. Decided not to keep my mask, I have a toasted tumor as a reminder of this entire experience. Kinda weird going through this and then they send you on your way. Other than a headache that Advil takes care of and a little foggy in the head, I am feeling quite normal. The nurse did tell me that the effects of the radiation will catch up to me in a few days and I will begin to feel more tired. Time to rest now, it has been a long week.
Gary
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Happy to hear that your tumor is officially toasted and now shrinking into oblivion. Thanks so much for including us on your journey and giving us day to day updates. We will be looking forward to hearing from you in the coming days and weeks and hope to hear that all is going well. I admire you for making the difficult decision to go forward with treatment.
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Two days after my Cyber Knife treatment and I am doing pretty well. Headaches are taken care of with Advil, yesterday I just took two all day. Some throbbing at the AN site, but that only lasts a few seconds each time. Today I am a little disoriented, spaced out from time to time. Also a little dizzy, so it is a day when I am going to rest and hang out. Sleeping has been difficult, feeling tired but my thought patterns are too active to settle down. Hopefully my sleep will improve as the days go on. Just have to take advantage of the good days and rest on the mediocre days. Today is a rest day.
Gary
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Hi Gary,
I am so glad that 2 days out you are doing well! After going though so much, it's hard to get the mind to quiet - but before long you'll be sleeping well. Wishing you continued good recovery and healing!
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Day four after CK and feeling pretty good. Woke up with a headache and the first cup of coffee seemed to take that away. Trying to eat a well balanced breakfast with both protein and carbs. I usually eat too many carbs, so trying to lessen that. When asked about vitamins, my radiologist told me that the most important ones are the antioxidants, A, C and E. So I have been taking these each day. Also walking in the morning to relax and clear my mind. My brain is very stimulated, lots of things going through my head from the distant past to the present. My Neurotology doctor called yesterday to see how I was doing, and said that the over stimulation is the result of CK and it happens to some people. It supposedly only lasts a few days. All in all, I am doing okay.
Gary
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Hi Gary! I am glad things continue to head in an upward direction! Also, thank you for the anti-oxidant tip. I’ll have to make sure I’ve got all that covered! Also, that’s super interesting about the brain being stimulated by the CK. You should write all the thoughts that are coming and going into a journal — a story might bloom (says the writer ;) ) Super happy to hear you are doing well!
Jessica
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Hi Gtmochi,
The brain stimulation is usually happening when I am resting and quiet. Almost like meditation, but my mind is active. It seems to be slowing down today, but yesterday my brain was a constant chatter box. My wife also told me to write things down, but it is difficult for me to remember what I am thinking. So I am just flowing with it and hopefully things will quiet down soon. Felt a little dizzy this afternoon for a couple of hours. Just had to lay down and rest again. I am being active when I am feeling good, but when that tiredness hits, it is time to rest. One day at a time.
Gary
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Hi Gary,
Glad to hear you are feeling mostly good. Sorry about the dizziness. I think it is not unexpected and occurs until your brain learns to depend upon your functional balance nerve and to ignore the bad one. I get these transient dizzy spells when I rush around or change head postitions alot, like when cleaning house. I thought it gave me a pretty good excuse for not cleaning the house, but my hubby isn't buying it. He just says I need to do things more slowly. Hope you continue to feel better everyday. We enjoy your updates so thanks for posting.
M.A.
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Well I finally understand what a "wonky head" feels like after reading posts for the past year. Today I have one and it is not very pleasant. Kinda dizzy, unstable, and spaced out. No headaches or throbbing or pain anywhere, only a wonky feeling. I am just experiencing another day with my newly toasted AN. Hopefully it does not last for too long.
Gary
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Hi Gary,
You are doing great! Being active when you can and resting when you are not - it's good to listen to yourself, and something I need to work on for sure. Every time I am unwell (not even due to the AN) I like to pretend nothing is wrong, and then forge ahead until I make things worse and crash.
Wonky head - maybe I have that at the moment, too! I am not dizzy, but definitely spacey and weird. Like I am on a delay or something. But tomorrow will be better - I am sure it won't last long! This journey seems to have a lot of peaks and valleys.
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Gary, so sorry to hear about the "wonky head" head feeling. Wondering if this might be due to swelling? As I recall your doctor did not give you steroids during treatment. Might not be a bad idea to contact the doctor regarding your symptoms if they do not resolve in the next day or two. Perhaps some steroids are needed.
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One week after CK and feeling pretty normal today. Yesterdays wonkiness is gone and my head is clear. I have been very active and enjoying the beautiful warm weather we are having in the desert. Walking in the morning and in the late afternoon. Not feeling tired today, no headaches or dizziness. I think some of these issues are very transient, and they will come and go as the days go by. So each day will be different, and probably some of these symptoms will re-appear. One day at a time.
Gary
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Gary so glad to hear you are feeling better. Fantastic news that the dizziness and wonky head is gone, glad it was transient. Hopefully from here on out you will feel better everyday and life will return to normal, except of course for those pesky little MRIs we must all submit to on a regular basis. I have seen the Arizona desert in the spring time and it is absolutely beautiful. Enjoy!!
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It has been eleven days since CK and I feel pretty good. Just kinda normal actually, all symptoms have been my regular AN symptoms that have bothered me for years. The only thing that happens is when I get tired, I have to stop and rest. Sometimes I fall asleep for an hour, and other times I just close my eyes and relax. For exercise I have been walking several miles a day, and this has been helping with any balance issues I am feeling. Eating a healthy diet with lots of fruit, vegetables and fish. The support of family and friends has been extremely important for my mental well being. Today is another good day.
Gary
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Great news Gary. I am so glad you are doing well. Please keep posting because it is good to hear about postive post-Cyberknife experiences. Makes it less daunting for those of us considering this treatment route.
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That's terrific, Gary! I am super happy to hear you are feeling good/normal! I'm a few days behind you, and I have to say that my experience has essentially mirrored yours :). I've been trying to eat healthy, too! I think it helps. Now that I think of it, I've been craving fresh fruit like crazy. I usually eat fruit, but man - I can't get enough of it now! I guess the body knows what it needs :).
Also, like you, I am so grateful for the support of friends and family. It really does shore you up and make you feel strong!
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Yesterday started out rough, headache, dizziness, and just not feeling right. By the afternoon, all was good again. These temporary surges of symptoms seem to leave as fast as they come. They are somewhat frightening, but it is important to wait them out and know that everything will be okay. And today things are okay, feeling full of energy and alert. Took a long walk and did not have any dizzy spells at all. So enjoying some of Arizona's final cool days before the desert heat returns. One day at a time, and today is a good day.
Gary
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Hi Gary,
I notice even being in W&W, I have good and bad days and can't figure out what causes the difference. Yesterday I woke up early feeling fantastic, minimal tinnitus, no dizziness. I felt more normal than I have in some time. Some days I can easily do a 30 minute walk with minimal dizziness. But today was horrible, felt wonky headed and semi-dizzy. Also have that weird pressure feeling like my ear needs to pop. It might be due to an stomach upset I had last night which resulted in some dehydration not enough sleep. This morning woke up to loud tinnitus and feeling unsteady. The bad days are really depressing and it is hard not to give up and just lay around all day feeling sorry for oneself. But, as you say one just has to push through it and tell yourself it is going to get better.
Good to hear that you are better today after having a not so good day yesterday. Your positive attitude is an inspiration.
M.A.
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Sorry you are not feeling well Mary Ann. Regardless of where we are at, WW, surgery or radiation, at times it is difficult to cope with AN symptoms. I am fortunate to be retired, so when it hits me, I can just stay at home and rest. No real obligations or commitments, I have cleared my slate so I can deal with whatever is happening. I am not sure how I would handle working and healing from CK at the same time.
Try to get some rest and hopefully you will feel better tomorrow. I had a good day today, maybe yours will be tomorrow.
Gary
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Thanks For the kind words Gary. You are right, later in the day I did start feeling better. One just has to ride it out. I too am retired. I had a few wonky headed days when I was still working, but was abled to get through the day. If dizzy, I took Dramamine which helped but made me drowsy. So I’d drink coffee to counteract it. Kind of a catch 22, but it worked. I didn’t know I had the AN before I retired, but looking back I had symptoms.
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Hi Mary Ann,
I had a variety of symptoms for several years before being diagnosed with the AN. Headaches, vertigo, dizziness, blocked ear, and a loss of hearing that increased with time. I more or less ignored it until the hearing loss caused enough anxiety in me that I went to see an ENT. We just learn to cope with pain and discomfort, especially as we get older. I have become a believer in the one day at a time theme. I seem to have two to three good days and one bad day. So those are pretty good odds after two weeks of CK treatment. And the one bad day is not that bad, I just have to rest my body and brain.
Gary
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I am eighteen days after CK and doing fine. Had a little dizziness the past several days, but it only lasts a few minutes at a time. Sleeping well, eating healthy, getting exercise, resting when needed, and enjoying life. Hopefully this continues and the symptoms remain manageable. All is okay today.
Gary
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Hi Gary, great to hear that you are doing well. Just wondering, did you have any dizziness prior to Cyberknife, or is this something new? Even without treatment I get these temporary dizzy episodes when I exercise too much or race around the house doing various activities. When I sit down and rest, things improve in about 5 minutes. I always keep a chewable Dramamine nearby however, just in case things don’t resolve.
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I have had dizziness and at times vertigo for several years now prior to CK. The vertigo used to be really bad, wipe me out for a day at a time. It has become very rare, so I pray that it does not return. I can handle the dizzy spells, just have to stop and rest. It does go away after a few minutes. Getting a dizzy spell is an old symptom, so no surprise to have it happen over the past few days. Maybe it will be gone tomorrow, we will see.
Gary
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Hi Gary!
That's great the vertigo seems to waning! I still have less face tingling than I did before CK, too. So maybe that's a thing! Maybe we won't have those any more. Fingers crossed! Hope you are well :).
Jessica
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Some of the symptoms we experience are the result of the AN tumor pressing on the facial nerve. I have facial numbness, no taste on the AN side of my tongue, and my lower lip on the AN side feels like pins and needles at times. It is my understanding and hope that once the tumor begins to shrink, the pressure on the facial nerve will be reduced and these symptoms will mostly go away. Like Jessica says, "Fingers crossed."
Gary
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Hi Gary,
Nice to see your posts. Since there may be some swelling post Cyberknife, it would not be unexpected to have continued pressure on the facial nerve and thus persistence or even a temporary increase in symptoms. But as you noted, once tumor shrinkage begins, even if slight, there should be an improvement. I think the pins and needles may be a good sign, because if the nerve was dead, you would have no feeling there at all. Hoping you see shrinkage and increase in feeling and taste very soon.
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Yesterday I had a post op office visit with my neurologist at Barrow Neurological Institute in Phoenix. It has been about 25 days since Cyber Knife, so Dr. Porter wanted to see how I was doing. I was given both cognitive and physical exams to see if anything has changed since CK. The cognitive exam tested my memory, concentration and attention. The physical exam tested my balance, muscle coordination, eye movement, and ability to feel sensations on the AN side of my face. The exam showed that I was stable, and nothing has changed since CK. Also, all of the various symptoms I am having are the same ones I had prior to CK. We did discuss the onset of tiredness, and apparently that is a common side effect of radiation. So far, so good.
Gary
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Hi Gary, I am happy to hear that your symptoms post Cyberknife are no worse than before. Hopefully your next MRI will show a “fried tumor” that is shrinking into oblivion.
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Hi Gary! I am so, so glad to hear that you are well and that your appointment and exam at Barrows showed nothing had changed since CK. That's great and so reassuring! Like M.A., I hope that your next MRI shows that your AN is well on its way to never causing problems again. Also, that is really great that you had a follow up exam with Barrows! What a great protocol.
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Thank you Gtmochi and notaclone 13 for all of your support over the past month. It has helped tremendously having people out there that are watching over me.
I am very fortunate to have my doctors so close to where I live. It makes things very convenient for follow up visits or any issues that may come up. Yesterday I took a one month post CK MRI because my radiologist wanted to establish a baseline study on my tumor. I will see him on Tuesday to discuss the results. This is part of his research project on AN and I am happy to participate if it can help others in the future. I will report back after my office visit next week. Curious to see if any changes have occurred to the tumor in one month.
Gary
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Hi Gary,
That's interesting about the MRI and research project. So glad you are participating and will give us all the scoop on what they are doing and looking at. I spoke to a scientist friend this week who does research on acoustic neuromas. I asked him if he had heard about mifepristone as a potential drug therapy for acoustic neuromas but he was not familiar with Dr. Stankovic's paper. Hope they get the money to do the clinical trial soon. My friend believes that growth of these tumors may be due to more than one faulty pathway. He did mention that they are considered very low grade tumors and thus non-malignant and usually non agressive. Let's hope that is the case for all of ours.
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On Friday, May 18, I had a one month post Cyber Knife MRI done in order to establish a baseline for my AN. Yesterday, I met with the radiologist to discuss the results of the test. Although I was not overly excited about another MRI with contrast, I have been curious to see what is going on in my brain after CK. He showed me the MRI images, and the tumor looks exactly the same in size as it did before radiation. There is no brain swelling, and areas such as the brain stem that could potentially suffer collateral damage from radiation, appear totally normal. Needless to say, I am grateful and relieved.
We also discussed my various symptoms which are essentially the same as they were prior to CK. He was interested if my hearing was better, and I told him that it is still non-functional. Better or worse, it is hard to tell. The doctor was very happy with the way things are going, and he kept telling me that the CK procedure is definitive with 95% of the patients. He said I should go live my life, enjoy the summer and to stop worrying. So that is what I will do.
Gary
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That's great news Gary. I am so happy to hear you are doing well and hopefully can put all this behind you (except for occasional MRIs of course.) Did he mention when you should get your next MRI? I am thinking from here on you can opt to skip the contrast. Did you ask if that would be OK?
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Hi I've been reading all the posts and am so happy for your success with Ck Unfortunately at 3cm, and tumor pressing on the brain stem, Gk or CK is out of the question for me. I am 70 and wish I did not have to cut my head open --but I've decided to do it since tumor has grown. Surgery with Friedman/Schwartz on 6/26 in San Diego. Take care.
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I will take another MRI in six months from now, and I assume it will be with contrast. I think the contrast is necessary, but I can inquire. Whenever I have asked about contrast, the doctors tell me it is essential to see the tumor. I have seen the MRI's with and without, and there is a real difference with the contrast. Since I will want the best images to know how things are going, I won't
disagree with what the doctors want. And yes, Notaclone13, I can put it behind me, until I take my next MRI.
I am sorry to hear that you will require surgery Abetpds. The doctors at San Diego are some of the best, so you are in good hands. There really is nothing we can do when that tumor starts growing. I was in the same place, watch and wait for over one year with nothing happening. Then it started growing real fast and I just had to make a decision to take care of it. The best of luck to you during surgery and in the future.
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It has now been six weeks since my Cyber Knife treatment, and it seems like a faded dream. All of my old symptoms such as non-functional hearing in my AN ear, facial numbness and a lack of taste still exist and have not changed. The only new symptom is a tingling sensation on areas of my scalp where the radiation zapped me. It feels like a sunburn and the skin is very sensitive. I am wearing a hat whenever I go outside, so hopefully that will help.
My hearing loss is a real bummer. Identifying where a sound is coming from is difficult, since I am almost totally deaf on the right side due to my AN. At times I have to turn around 360 degrees to locate a bird chirping or a car driving by. If someone is talking to me on my right side, I only hear a mumbling sound and cannot differentiate any of the words. Foreign accents are a real hassle, they seem to fatigue me real fast. Of course loud restaurants have become something I cannot tolerate, especially if loud noises occur like clanking dishes. I am not really complaining, just trying to deal with my new normal and make the necessary adjustments so I can be a functional AN person.
Gary
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hi Gary,
it's for sure a journey of adjustments. I am bummed about my significant hearing loss too...esp since my hearing was perfect on the an side before CK. I have had a hearing aid fitted and that helps especially in noisy cafes and resteraunts. its still early days,I think it's pretty normal to feel a bit down about some of the effects of this AN and the CK treatment... it takes some time to adjust and find ways to manage the new normal. some things will get better over time...some will just be.
I wish you a successful recovery
Stella
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Thanks for your words of encouragement Stella. Now that I am done with CK treatment and not worried about that anymore, I guess my focus is on dealing with symptoms. The most outstanding symptom for me is the single sided deafness. I am learning to cope with it and adjust to the changes it presents.
I am sorry that you suffered hearing loss after CK. I had very little hearing on the AN side prior to CK, so I did not expect anything different after CK. I will see my neurotology doctor next month to discuss my hearing issues. He was part of my CK team, and I am sure he will recommend a hearing aid for my good ear.
I hope you are doing well Stella, and thanks for wishing me a successful recovery. Be well,
Gary
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Hi Gary,
Though I am not SSD on my AN side, the mild hearing loss I have had has been an adjustment, and I anticipate there will be more of it. It's so crappy (I can't think of a better word! Because that's what it is!) that is what happens to most of us with ANs! I hope that your Neruotology doctor does help, and that in time things become less of a trial hearing-wise.
Stella's encouragement is so lovely! It heartened me too. So thank you for that!
Hope you are both doing well and wish you both a healthful journey!
Jessica
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Hi Jessica,
I think it is inevitable that we will all suffer some kind of hearing loss. The doctors on my team stated that 50% of AN patients will have some hearing loss within five years, and that another 50% of those remaining will have hearing loss at the ten year mark and so on. The outlook is not good for most of us.
I am trying desperately to favor my good ear by wearing ear protection when using power tools, including the vacuum cleaner. After years of loud rock and roll, in addition to many other hearing abuses like chainsaws, it is time to be proactive and take care of my remaining hearing. I agree with you, it is crappy, but we learn to adjust and go on with our lives. I hope you are doing well Jessica, I am at seven weeks post CK and you are at six. Take care,
Gary
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Gary, I had CyberKnife surgery in March, 2017, at Stanford. My AN was originally flagged because of steep hearing loss in my right ear. So, after treatment, I was concerned how much and how rapidly I would lose hearing. Eight months afterward I had a hearing test and was relieved to see that I had not lost much at all. The audiologist emphasized that I still had functional hearing in that ear and would benefit from a hearing aid. I got mine earlier this year, and it has made a big difference. I feel much more confident with it plugged in--I know where sound is coming from. As you know, that's a big deal! While it helps in conversation, a hearing aid does not do much for clarity. So, what was 'wah-wah' without the hearing aid, is now 'WAH-WAH.' Still, I would urge you and others to consider whether an HA would help. I wish you the best in your continuing journey.
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Hi Gary,
I think you are right about losing hearing in some way - when I asked my doctors about it they shared numbers I 100% don't remember (ha!) but the net-net was, there is a good chance of some (if not all) hearing loss...at some point. Sigh. Your info was super helpful and more concrete! Thank you. I have been protecting my good ear too! It's a good idea :).
As for how 6 weeks post CK are looking for me...pretty ok! I mean. I am hedging my bets by saying that ;-). I am superstitious - so saying I'm good makes me nervous I'll jinx myself. But the truth is that I feel as well as I did before CK, and even in December and January (right before diagnosis). I had so few symptoms at that time - I was blissfully unaware of my dumb old AN, and so was not overly concerned about the weird TMJ feelings I was having - I blamed them on a messed-up night guard! For me, it was tinnitus followed shortly thereafter by a full ear that got me to go see an ENT - and then we discovered a slight hearing loss and the cruddy AN. For now, like you, treatment feels like it is ancient history. I am doing my best to move forward and to pretend all is well and sort of ignore any physical symptoms that aren't any worse than what I have already experienced.
I really like JuliaWilson's advice (hello, fellow Stanford patient!)- maybe at the 6 month MRI looking into HAs is a good idea! I know your AN ear is moot, but if you are worried about your other ear, maybe it will be a help :).
I hope you are doing great and continue to have a smooth recovery and good health!
Jessica
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Thanks for posting Juliawilson. It really helps to find out how other folks are dealing with similar issues, especially after CyberKnife. I find that it is becoming more and more necessary to enhance my hearing in some fashion, and hopefully hearing aid/s can help. It sounds from your comments that they are helping you. So once I see the hearing doctor in late July, we can determine what kind of hearing aid would work for me. Thanks for your advice, and the best to you also.
I am doing okay Jessica. Back to hiking, riding a bike, and of course riding horses again. No real balance issues, headaches are minimal and doing my best also to move forward. All is good and things really are just kinda normal, well AN normal anyways. I am glad to hear that you are doing okay. Be well.
Gary
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Hi Gary,
Thanks for your kind understanding. Hearing loss was somewhat anticipated as Dr Chang explained it, still tricky to deal with considering.... but like all these pre and post CK symptoms, "it is what it is" and I'm grateful that the technology was there for me.
Jessica- you're welcome!!, and i am heartened that you and Gary (and many others) share so openly on this forum, it really helps to have people that understand me too.
moving forward successfully with our version of normal ;)
Stella
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I am now two months post Cyber Knife and feeling pretty good. I decided to test myself, so this past week I took a road trip to Sedona, AZ with my wife. Sedona is about 225 miles from where we live, and I wanted to see if I could focus and concentrate when driving that distance. I drove for three hours on some very curving roads with several S curves. I did not get dizzy, or feel a lack of concentration at all. The driving was the same way it has always been, enjoyable and focused.
Now when it came to hiking, I did not do as well. Sedona has very high mountains with some steep hiking trails. If I kept my eyes on the trail, I was fine. If I looked up at the steep cliffs, or down the deep washes when I was in motion, the dizziness hit me. If I stopped moving, I had no problem looking up at the mountain tops. We have hiked in Sedona for many years, and this is the first time I felt dizzy. I figure it is the result of the CK and what is happening to my zapped tumor. So this is something to work on, being in motion and looking up towards the sky. Maybe with practice I can get rid of the dizzy feeling. Regardless, it was a wonderful trip.
Gary
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Hi Gary, so happy to hear you are doing well and are back to taking on some challenging activities. It is amazing you were able to hike those mountain trails just 2 months post radiosurgery, despite the dizziness. Hopefully the dizziness will diminish with time as your brain learns to depend on your one fully functional balance nerve. I notice on my daily walks that I don’t feel too off balance when I am looking down at the path, but when I look up at the horizon it’s a different story. After 30 - 40 minutes of walking, particularly if it is hot and sunny, I am downright dizzy and this is on flat ground. I can’t imagine how I would do on a long hike on mountain terrain. Thank you so much for posting this as it alleviates some of of the fear for those of us that may require Radio-surgery in the future.
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I am hopeful that my functional 8th cranial nerve will provide enough balance in the future that some of the dizziness will go away. Prior to CK I went on a full moon hike in the mountains close to my house, and things did not work out very well. The terrain was rocky, and looking up at all the star formations while hiking was extremely difficult. The darkness caused some sensory deprivation to my vision. With both sight and balance essentially diminished, I was not having a good time. If I stood still, things were kind of okay. The moment I started moving, the world was spinning in darkness. I will have to try another full moon hike in the future and see how things turn out. Have to give my brain some time to adjust and adapt to my new normal.
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It is now a few days past my three month mark post Cyber Knife radiosurgery. In general I am feeling okay, although some symptoms are occurring each day. The ringing in my AN ear comes and goes, although about one week ago it was loud and constant for a few days. During that time, I had one episode of a very loud sound that actually hurt my head. Now the ringing sounds are soft and less frequent, and I can ignore them most of the time. I have been having what I will call mini-dizzy spells. They last for about 10 seconds and occur several times a day. At times they seem to evolve into mini-vertigo spells that also last for several seconds. Nothing terrible, just have to take a deep breath and wait til my head clears. Facial numbness lacks consistency, some days my face almost feels normal and other days it is very numb. I do get a facial pain every now and then, always on my AN side. My tongue has lost its ability to taste most foods and my palate on the AN side has lost some sensation, but this was happening prior to CK. The deafness in my AN ear also seems worse, but a hearing test next week will indicate if I am imagining it or not. I flew to see family last week and was worried about the pressure issue at 30,000 feet. It all was fine and no big deal with take off, flying and landing. All of these symptoms are very tolerable and life is really pretty normal. I will report next week as to how my hearing test went.
Gary
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Thanks for posting Gary. Sorry to hear about the episodes of dizziness. I have them too even though I have not yet had treatment. I have to grab onto something or sit down until it passes. Most of the time they pass after a minute or two but they are scary for sure. They usually come on when I move too fast from one position to another. Hope they resolve for you quickly. Did any of your doctors suggest vestibular rehab to you?
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I am sure my doctors would suggest vestibular rehab if my symptoms were serious enough. At this point in time, they are more of a nuisance than anything else. My radiologist did tell me that various symptoms would be occurring from the tumor swelling during the 3-6 month period after CK. So that is where I am at and things are okay right now. If the symptoms become more bothersome, and hopefully they will not, then I will have to ask my doctors for help. Personally, I am trying to live my life without more and more doctor appointments, and without any additional prescription medications. So I will just tough it out.
Gary
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I am so glad things are pretty normal and ok, Gary! That’s fantastic. Also fantastic that your symptoms are more of a nuisance - that’s where I am too. Like you, I loathe the idea of more appointments or any medications, so I am on the tough-it-out train! The tasting issue though - that’s the worst. I really hope that after the 3-6 month period passes so does that problem! I know you mentioned that it was a problem previous to treatment, but with luck, the dang AN will shrink and voila! Taste!!
I am also super happy to hear that flying was no problem - I am flying to see family on the east coast in a couple months and was debating whether I’d need to avail myself of the mini bar on board... ;D.
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Is the tasting issue on the side of the tongue that the AN is on? I have altered taste on the side of the tongue of my AN. This mainly affects sweet taste. My mind has altered habits so that I chew sweet things on the other side. Also, with time, the altered taste has become less noticeable. I guess I'm getting used to it.
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Hi ANSydney,
Yes, the tasting issue is on my right side which is the AN side. My lower lip and soft upper palate on the AN side are also numb most of the time. I am able to taste certain spices, like chili powder and cinnamon. When I eat sweet things, I get a very bitter after taste which is not pleasant. Salty and bitter foods like olives or pickles have become too strong for my taste buds. I also have a tendency to burn my tongue by eating foods that are too hot out of the oven, probably due to the numbness in my mouth. I have tried to eat only on my left side, but it seems like food just migrates all around my mouth. I love to eat exotic foods, and having taste buds that do not work very well is really a bummer. Not complaining, just a fact.
I have not heard from you in a very long time ANSydney, hope you are doing well.
Gary
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Hi Gary, Overall, particularly considering the size of my tumor, I'm
doping coping well. I haven't had active treatment and my next MRI is late August. I'll post my results. Fingers crossed.
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I wish you the best ANSydney. I know you have been on Watch and Wait for some time now, hopefully the tumor remains stable with no additional growth. Those darn MRI's cause so much anxiety in all of us, but they are necessary. I will keep my fingers crossed for you. Take care.
Gary
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I took a variety of hearing tests and the results were what I was expecting. My AN ear only has 50% word recognition, which means every other word is gibberish. The words I do hear sound like they are coming out of a very broken speaker. My AN ear is essentially non-functional. My good ear is losing the high tones due to my age. So the doctor told me to always wear ear protection and stay away from very loud noises. It was recommended that I wear hearing aids called bicros. The AN ear would wear a microphone type of device that would send the sound to the hearing aid on my good ear. It is all wireless and state of the art. I have seen on this forum that other folks really like the bicros systems. So I will give it a try.
Gary
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Hi Gary,
I'm sorry that the hearing is not so great. I found that my hearing aid has really helped over the last year or so (it's different from a bicros). It took a few weeks of weekly appointments for fine tuning, which was frustrating at the time, but worth the effort in the long run. I hope yours is a smooth journey.
Best of luck getting fitted , I hope it makes a wonderful improvement to your hearing.
be well,
Stella
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Thanks for the encouragement Stella. I am happy that your hearing aid is working for you. I am hopeful that I will have the same experience. My appointment with a hearing center recommended by my doctors is on August 21. I am sure it will take several appointments to get fitted and fine tune the devices. Very excited about improving my hearing.
Gary
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Sorry to hear about the hearing loss Gary. It is something we all dread, but unfortunately it is the usual outcome with Cyberknife. I hope the hearing aid will help. Other than the hearing, I hope you are doing well and not experiencing too much dizziness. Hopefully it is not keeping you from enjoying your usual activities. Thanks for the update.
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Hi notaclone13,
I do not think that hearing loss is a usual outcome of Cyberknife. My hearing was non-functional before radiation therapy, and has only decreased with time as a result of the acoustic neuroma. My team of neurologists told me that 50% of AN patients will lose their hearing in 5 years, and another 50% at the ten year mark and so on. Although there are some surgeries that can potentially save hearing, it is inevitable that a large number of us will lose our hearing. It is a consequence of the disease and not the therapy.
Gary
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Four months have gone by after my five sessions of Cyber Knife radiation. No new symptoms, just more of the same old ones reminding me that they have not gone away. My tinnitus has become very active over the past two weeks. All kinds of different noises happening on the inside of my head. I hear the sound of breaking glass, ringing, buzzing, hissing and clanking. When I am busy, those sounds are easy to ignore. When sitting quietly, my head is like a chatter box. So I try to stay busy.
Yesterday I saw my audiologist and had a trial of the Phonak CROS B hearing aids for my single sided deafness. A microphone type hearing aid was put in my AN ear, and a regular hearing aid was put in my good ear. The CROS B wirelessly transfers the sound from the AN ear to the hearing aid on the good ear. This allows you to hear sounds on the side of your non-hearing ear. It was wonderful to be able to hear and understand words again. We are so lucky to live in a time when such technology exists. I will be purchasing a set next week.
Gary
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Hi Gary!
Same old, same old -- that's great!! I mean. The gamut of sounds not so much. Hopefully it will settle down. That's great that if you stay busy it's easy to ignore. I find that's the same with my tinnitus, which is pretty much the same sound in varying degrees of intensity. I too have noticed a bump in fluctuations - and a couple times last week I got a loud BEEEEP once or twice which was worrying - I didn't want it to stay! So maybe wack-a-doo tinnitus is a thing 4 months in after CK and will pass. Fingers crossed!
The Phonak CROS B sounds lovely. We are super lucky to have access to such great technology! What a relief to receive sounds from the non-hearing ear side. Congrats on on your new hearing aids and on improved hearing because of them.
Continued happy trails!
Jessica
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Hi Gary,
So glad to hear that the hearing aid tech is a positive addition for you!
the background ringing tinnitus is usually always there for me but not that noticeable during the day...Yes the strange tinnitus sounds are challenging to deal with, for me especially at night when its so quiet, the good thing is that the strangest ones usually pass in time...
be well,
Stella
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Hi Gary, so good to hear you are doing well and have found a hearing aid that helps. Sorry to hear about the worsening tinnitus. Hopefully just a passing phase that will diminish with time.
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I am at the five month mark post Cyber Knife radiosurgery. It is quite an adventure, although I would rather be taking a cruise or flying to Paris. My symptoms are not really getting any worse, they are just lingering. Prior to CK my symptoms were mild and did not occur each and every day. At five months, symptoms are present on a daily basis. Tinnitus, facial numbness, lack of taste on the AN side of my tongue, and of course fullness in the AN ear.
The good news is that I purchased a Phonak Audeo B hearing aid for my good ear and a Phonak Cros B which transmits sound wirelessly from the bad ear to the good ear. They are wonderful. I can now hear sound on both sides of my head, although I still cannot locate where sound is coming from. What a difference when having a conversation with a group of people, I can now hear. We are all very lucky to live at a time when these types of devices exist. It is making a significant difference in my social interactions with friends and family. Expensive, but worth it.
Gary
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Hi Gary,
Thanks for the update. I have been wondering how things are going for you. I am sorry that you are having symptoms daily now, but is likely due to the tumor swelling and dying from the radiation. I hate the ear fullness thing, it is so annoying. Have you gotten any relief from the mini-dizzy spells you were having? I know the next few months are likely to be tough, but if the end result is a shrinking tumor, it will all be worth while. i am very happy to hear the hearing aide is working out for you. It is encouraging to know that something helps with SSD as we are all likely to encounter this problem in the future. Take good care of yourself and stay in touch.
M.A.
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Hi notaclone13,
The dizzy spells are less frequent now, maybe a couple a week. I thought I was getting a little bit of vertigo, but that seems to have cleared up. I do find that tiredness creeps in during the afternoon and I usually pass out for an hour on the couch. I am hoping it is just the summer heat causing me to be tired since I spend a lot of time outdoors. All is okay, just dealing with the daily issues and pushing forward.
Gary
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Hi Gary!
I would rather be going on a cruise of to Paris, too ;D! Seems like we're on the same symptom train - nothing new. Although prior to CK my symptoms were every day - and they are still that way. I hope yours settle down and things return to a pre-CK level or less. Especially now that we are almost halfway there!
It is so heartening to read about how much a difference the Phonak Cross hearing aids have made for you! Congratulations! We are indeed lucky to live in a time when stuff like that is available, and I am sure I will end up availing myself of a hearing device - and am just so glad to know that they work great!
Wishing you continued good health!
Jessica
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I am at the six month time zone after CK and feeling okay. Same symptoms going on as month four and five. The most noticeable change is my balance is off kilter again. This is a symptom that goes away for a month or so then shows up again. I have some dizziness issues also, probably associated with being off balance. These are relatively mild symptoms that occur daily. I probably should not put on my roller blades and cruise around the neighborhood.
I am scheduled to take a MRI during the third week of November to see how things are going. Since I took a MRI one month after CK, I am now taking one at month seven. I will see how things are going with my AN. I know there has been a lot of discussion about contrast and the MRI recently. I will comply with my doctor's wishes and have the contrast, but I will also question the use of contrast for future MRI's when I speak to my doctors. All is okay.
Gary
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I had similar symptoms as you. Unsteady balance walking and dizziness at times. It would last a week or more sometimes and usually happened monthly. I climbed poles for a living as a lineman so I was certainly concerned about the balance issues. Oddly, I never had a problem climbing just the unsteady walking. The best thing that helped me was just plain walking. A lot, lot,lot of walking both on flat and uneven ground, kind of a homebrew vestibular therapy. It seemed the more I walked the better my balance was balanced. LOL. Just great therapy. Years later now my balance has improved to the point I don't even think about balance anymore and the dizzy nauseated feeling have gone away. Don't put yourself in harms way but, I'd keep the rollerblades ready for action! Pushing the vestibular system a little farther once in a while might just help more than you realize.
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I have been walking a tremendous amount lately, and I agree with you rupert, it does help. I try to walk on the edge of the curb, forcing myself to stay balanced. If I am not too tired, it works pretty well. If I am tired, I keep falling off the edge. Riding my bike at times is also a challenge, but I am forcing myself to do it and I find that things are improving. When I ride horses my balance seems to be perfect. It could be that I am not noticing being off balance because of the rhythm of the horse. Hard to tell. It just seems that we have to keep pushing ourselves to make our brains compensate for whatever negative impact the tumor has on us.
Gary
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Hi Gary ---such great news on the hearing aid success! I have started exercising more (weights and row machine and walking outside) while I'm waiting for my next MRI and for sure have noticed a difference, overall feeling better and less "wonky head" symptoms. Seems like pushing ourselves forward is a positive thing -who knew ;)
Stella
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Hi Gary!
If you do break out the rollerblades, just be sure to encase yourself in bubble wrap.
What a drag that you are having some dizziness again. But from the sound of it, you are walking tons. Riding always works wonders - I too never feel odd when on a horse. We are lucky to have horses!
Keep riding and be well,
Jessica
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Hi Gary,
Thanks for the update. Sorry you are are plagued with the dizziness. It is a miserable feeling and because one doesn't know when it will occur, it is disruptive to carrying out normal activities. I recently read and posted the link to an old article in the Washington Post about the effectiveness of ginger in preventing vertigo. It was proven to work better than Dramamine in some cases, without the drowsiness. Maybe taking a little ginger would help to ward off the daily dizzies. Hopefully this is just a temporary bump in the road, perhaps triggered by the dying tumor and swelling that occurs after successful treatment. I am betting that next month's MRI will show a darkening tumor that will soon be shrinking.
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Thanks everyone for your ongoing concern and suggestions on how to deal with my various symptoms. I think the best medicine is lots of rest with a good nights sleep, eating healthy foods the majority of the time and lots of exercise. The freak outs really do damage both physically and mentally, so staying calm, centered and mellow has become my goal. If it is yoga, meditation, prayer, or horseback riding, getting in that quiet mellow zone is a great place to be. I am working hard to achieve these goals, although at times the AN anxiety creeps in. Be well everyone and Happy Halloween.
Gary
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Hello everyone! I have just read this thread and I am encouraged about how things will look months from now for me. I am just about a month out of having 5 sessions of SRS at Vandie. An odd thing that I have not expected is my balance is off. The reason I am surprised is that 15 months ago I had Translab surgery and lost my hearing and balance nerve on my AN side. So why the balance would be affected is odd to me. Thanks for all the great info in this thread.
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I do not understamd, did you have surgery and how long after the tumor grew back and then you had cyberknife
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It has now been a little over 7 months since CK radiation. I took my MRI yesterday to see what is going on inside my head. The reason for a seven month MRI is because I took a MRI exactly one month after CK to establish some base line data. Anyways, although I was a nervous wreck, the results were very positive. The tumor is mostly black inside indicating necrosis is occurring. There is shrinkage in the tumor, from 2.07 cm x 1.70 cm in May 2018 to 1.83 cm x 1.62 cm yesterday. As a result of the shrinkage, the tumor has moved away from the brain stem allowing it to resume its original shape. The pressure and stretching on the facial nerve has also been reduced.
My various symptoms are becoming more mild and tolerable. Facial numbness is reduced, I am now able to taste some foods, very few headaches, and those noises in my head from tinnitus have become much more quiet and not as often. Dizziness is gone, but I am still having times when my balance is a problem. This usually occurs at night when I am tired.
All good news, I am very happy and wish the best for everyone.
Gary
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Wow Gary -- so happy for you that you got these excellent results from the latest MRI!
I am amazed to hear that the tumor has shrunk and enough to move away from the brain-stem and resulting in less facial numbness; how awesome is that... Thanks for sharing your great news and wishing you continued good health and happy times ahead.
take good care,
Stella
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Thanks for the good wishes Stella. You have been hanging in there with me for quite some time and I appreciate it very much. I hope you are doing well also.
One of the things my radiologist said on Friday is that fish oil supplements reduce inflammation. I eat salmon at least twice a week and use fish oil supplements about three times a week. Along with other vitamins, this has been my routine for several years now. I have no idea if this has helped me or not, but it is useful information coming from a doctor. Of course eating well, getting lots of rest and exercise always helps the healing process. Happy Holidays Stella.
Gary
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Hi Gary,
Thanks for the update. So happy to hear that the dizziness had subsided and your AN is already shrinking. I know you went through a rather challenging period time after CK, but you toughed it out with minimal complaining. This is fantastic news and hopefully the shrinking will continue and you can put this whole thing behind you except for that nerve racking annual MRI. Hope you have a very Happy and Healthy Holiday.
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Of course, Gary --- I think we are best paced to understand each others roller coasters on this "unplanned for" tumor journey and support from you and others on this site has been very valuable to my peace of mind. As the weeks track along I am doing better most days.....Thanks for the tips on fish oil, salmon is on my menu multiple times a week :).
Good health and positive times ahead;
Stella
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Hi notaclone13,
Thanks for being so supportive over this past year. Just wanted to let you know that I took your advice and started eating candied ginger each day when I felt dizzy, and it really helped. I am amazed how fast acting it has been when I had really bad days. Thank you.
I agree with you Stella, the support from folks on this forum has been comforting and very valuable to my peace of mind also. It is nice to have people around who really understand the symptoms, emotions and anxieties. Good health and Happy Holidays.
Gary
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Hi Gary, so happy to hear the ginger is helping. The clinical trials used ginger capsules, but I think those might be difficult on the stomach. I keep crystallized sugar and Dramamine in my car at all times.
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Hi Gary!
That is such fantastic news!!! I am so very happy for you! What terrific results - and how amazing that the tumor is shrinking as well as easing its pressure on your facial nerve and brainstem. It is all so wonderful - especially when your symptoms are easing up in the bargain, and your dizziness is gone. What a way to kick off the holidays!
Onward and upward!
Jessica
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Thank you Jessica. Yes, it is a great relief and I am happy to enter the New Year with a necrotic tumor. This year has been a long and difficult one, hopefully the next one will be good for all of us. Your ongoing support and sensitivity has been wonderful. Thanks
Gary
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I am at the nine month mark post Cyber Knife Radiosurgery. Time has gone by rapidly, although there were days that I thought would never end. Most of my symptoms such as tinnitus, facial numbness and dizziness have become only occasional reminders of my AN. I have had a couple of instances when my eyes crossed and remained that way for about 10 seconds. Totally freaked me out, although my eyes normalized pretty much instantly. Probably the biggest issue I am dealing with on a daily basis is being off balance. I am riding my bicycle everyday in an attempt to rectify my balance issues. This is helping, as long as I keep my head looking forward. I now wear my helmet just in case.
I know my tumor has caused some damage both physically and emotionally, and that I will never be as I was prior to the AN. Accepting this is probably one of the hardest things for me, but my life is good and things are really okay. Just gotta keep on keeping on.
Gary
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Hi Gary!
I am very glad to hear that most of your symptoms have been only occasional... however, eyes crossing sounds extremely alarming! Isn't it amazing how, in the midst of this, even while freaking out about some wild new AN experience, we think to ourselves, "Well...I guess I'll wait it out." I am very (very!) happy to learn your eyes normalized almost instantly. Riding a bicycle to help with balance sounds like a great idea!
Accepting things (whether emotional or physical) are different now -- isn't that the truth? That is probably my biggest challenge at the the moment, too.
It is so lovely to read your update and learn that you are, all in all, well. Onward and upward! Or at least onward ;-).
Jessica
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Hi Gary!
I hear you; the physical and emotional toll of this journey is very difficult. I appreciate your openness to state this truth here, I think that it helps to acknowledge the difficulties that exist for us and importantly.... what we can do about them.
Great to hear you are bike riding for balance , I am a believer that the brain can eventually rewire and relearn around the damage. That freaky eye issue sounds pretty disturbing, let's hope it was a transient occurrence as part of the healing process.
wishing you well,
Stella
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Thanks for hanging in there with me Jessica and Stella. Your support has been wonderful during these many months of healing from CK. Yes, the freaky eye stuff was freaky, but all is well. I did have an optometry appointment for eye glasses after that happened and my eyes checked out fine. Just another transient interaction of a tumor and a brain. Be well.
Gary
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Hi Gary, glad to hear you are doing well but that cross-eye thing is really freaky. I can imagine how scary that was. Did you ask any of your doctors about it? Hopefully the worst is over now and from here on things will get better. Thanks for posting as we all learn from others experiences.
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No, I did not ask any of my doctors about the eye issue. If it continued to be a problem, I would have contacted my neurologist. So many of our AN symptoms are very transient, so just waiting them out is what I have learned to do. I am essentially ignoring most of my symptoms so that I can just go on with my life. Things are actually really good notaclone13, just some blips once in a while. Hope you are doing well also.
Gary
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You got it, Gary! We're all in this together :). Glad to know that all was well from the optometry appointment. You are right! Eye crossing is just another transitory thing. Wishing you continued healing and happy riding!!
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Ten months have gone by since I had Cyber Knife and life is good. Symptoms are very similar to my nine month report, although I have had two vertigo episodes since then. I found that walking backwards initiated the vertigo, so that is something I need to be careful of. Dizziness has been less, although when walking I am still off kilter. The AN symptoms seem to increase when I am tired and not eating well. So I am trying to get rest, exercise, eat a well balanced diet, and relax.
Most of the time I completely forget about my AN, CK, SSD and all the symptoms associated with my tumor. So life goes on and everything is okay, living my new normal. It is nice to have time between MRI's where you can just forget about the AN and experience some peace of mind. Be well.
Gary
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Hi Gary,
It is so good to hear that 10 months post CK you are doing well and life is resuming in the new "semi-normal" state. Just wondering, you mentioned that walking backward brought on 2 vertigo attacks. How long did each attack last? Was it just a minute or two or longer? I notice that when I walk for a prolonged period of time, I start feeling dizzy. In only one instance did the dizziness evolve into something like vertigo. When I felt the dizziness evolving toward vertigo I took a dramamine and things improved in about 10 minutes. Still, it was rather scary because I was not at home and knew I could not drive until the dizziness resolved. By the way, how would you describe dizziness versus vertigo?
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Hi Mary Ann,
Good questions regarding vertigo. One of the attacks was very mild, lasted a couple of minutes and then went away. I had a headache afterwards that tylenol quieted down. The second vertigo episode was much more serious. The room was spinning, I was nauseated, and I had to sit on the floor immediately. Luckily I was at home so I could just wait it out. It took several house before I could walk around and resume my daily routine. That one required advil and time.
I find the differences between dizziness and vertigo are quite significant. When I get dizzy, I am just light headed and not feeling very stable. Very similar to flying in an airplane and experiencing motion sickness. If I stare at something without moving my eyes, it usually goes away.
With vertigo, the room is spinning and even if I close my eyes, things are still spinning. There is no way to stop it until it stops itself. I am usually very weak afterwards and it takes hours for me to get back to normal. I used to have lots of vertigo issues when I started having AN symptoms several years ago, now they are very rare. Grateful for the rarity. Hope that answers some of your question notaclone13.
Gary
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Gary, that second longer attack must have been pretty scary. I have had attacks like that in the past and they terrify me. You get to wondering if the spinning will ever stop. I hope you never have another.
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Hi Gary,
I am glad that you are doing Ok and that it sounds like you have some ideas for managing that vertigo - "rest, exercise, eat a well balanced diet, and relax" ; is an excellent protocol :). I'm glad its a rarity now and i hope it completely resolves itself for you.
I too have been between MRI's and yes i agree it's so nice to just have some peace of mind for a while...
positive & healthful thoughts
Stella
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I am doing okay Stella, and I hope things are okay for you also. Staying as healthy as possible does have a positive impact on acoustic neuroma symptoms, and that is what I am trying to do. Life is good in the Arizona desert, cool weather, lots of rain, and coyotes everywhere. Be well.
Gary
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Hi Gary,
It is so lovely to learn you are doing well! Your plan for managing symptoms is super - rest, exercise and eating well make such a difference. What a relief that dizziness and vertigo are on the downhill. Except of course, for walking backwards - I hope that all symptoms of that nature peter out soon!
Since we had treatment around the same time, we are on the same MRI schedule - it IS so nice to have some down time in between check ups!
Stay well and enjoy spring!
Jessica
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Thanks for checking in Jessica. Yes, we are both at the ten month mark post Cyber Knife. I am getting to the place where I am accepting my illness and just dealing with it the best I can. It is nice to be on the other side of radiation, with the hopes that each MRI in the future brings good results. I guess the anxiety will always be there, just somewhat tempered as time goes on. I just have to remind myself that acoustic neuromas are not life ending, they are just life changing. Be well.
Gary
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Yesterday I had my 13 month MRI post Cyber Knife radiation. My tumor has essentially remained the same size as it was 6 months ago, but the necrosis has increased. The tumor is actually collapsing in on itself, indicating a greater amount of necrosis as compared to my last MRI. The radiologist was very pleased with the results and he told me to come back in one year for my next MRI. My anxiety level was so elevated at the doctor's office, it has taken over 24 hours for me to grasp how wonderful the news is.
My symptoms have not changed as the tumor is going into its necrotic state. My last hearing test about three weeks ago indicated that I have zero word recognition in my AN ear. My face remains mildly numb from my AN ear down to the corner of my mouth. I have almost no taste on the AN side of my tongue which is a real bummer because I really enjoy eating exotic foods. I seem off kilter at times when walking and hiking, and I do get dizzy if I turn my head too fast. I have tried to identify what triggers the balance and dizziness so I can avoid those situations. I have had some success, but it does not always work. None of these symptoms have gotten any worse after radiation, they just remain the same, except for tinnitus which is now totally gone.
Life is good and I am very pleased with the results of my MRI yesterday. It is what I was hoping for. Peace
Gary
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Great news Gary, thanks for letting us share your Cyberknife journey. The necrosis is a very good sign. Hoping to hear very soon that your brain has adjusted to the new normal and the vertigo is a thing of the past.
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Thanks for your ongoing support Mary Ann. I hope that my experience and the experience of others provides you with confidence that we can whip this thing and continue living our productive lives. Be well.
Gary
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What wonderful news your MRI brought, Gary! Also, it is terrific yoru tinnitus has dissipated. Hopefully now you can unwind and relax a bit. Also, like Notaclone13, I very much hope that before long your brain adjusts and dizziness/vertigo is behind you.
Happy trails!
Jessica
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Thanks Jessica,
It is a great relief to know that things are progressing as they should. In time, I am hopeful that my brain will adjust to my balance issues and dizziness. In the meantime, I am gonna keep pushing forward and dealing with the symptoms when they occur. Be well and thanks for your support and kindness.
Gary
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Hi Gary,
It's good news to see increased necrosis & the tinnitus gone - I'm glad you're keeping positive about the triggers that come ;hopefully they too will dissipate over time. It's a stress inducing diagnosis and treatment to deal with, i hope the 12 month reprieve from attnding an MRI is a stress relief for you ( i was usre happy to hear that at my last consult :))
healthy healing ahead,
Stella
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Yes Stella, a 12 month reprieve is what I need now. Just enough time to relax and get some more healing done. This entire AN experience is anxiety inducing, although it seems like we are all able to work through it. Just have to be strong and keep it together. Nice hearing from you Stella, hope all is well with you also. Be well.
Gary
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When I had a hearing test about a year ago, they found that as a result of my AN, my acoustic reflex was non-functional. The acoustic reflex is the ability of two inner ear muscles to contract, thus reducing incoming sound by at least 20 db. When the acoustic reflex is non-functional, noisy restaurants, parties, laughter, vacuum cleaners, and even the air conditioning systems are at times intolerably loud. I am not sure why the reflex does not work in both ears when my AN is in one ear. They must have some kind of connected circuitry in the brain. There are a lot of scientific articles written on AN's and their impact on the acoustic reflex, in addition to ongoing research. After reading several of these articles, I now have a better understanding of why the world around me sounds so darn loud. Just another condition caused by my AN.
Gary
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It has been about 15 1/2 months post Cyber Knife radiation. All was well until the past week when my palate started hurting. It felt like electrical shocks were running through my face. I thought it was a tooth ache, strep throat, allergies, etc. I woke up Saturday night with pain in my nose, palate, lip and teeth in the upper jaw. The electrical pain was all on the right side, my AN side. Touching my nose lightly sends shock waves through my face. Very discouraging after feeling quite normal for months and months.
After speaking to my extensive team of doctors, both neurologists and ENT's, it has been determined that my trigeminal nerve is inflamed. This nerve has three branches with one of them going to the nose, lips, palate and teeth. When I explained my pain, it was easy for all of my doctors to determine the cause. My tumor could be swelling again which can happen at this point in time after CK, and therefore putting pressure on the trigeminal nerve. I have been referred by Dr. Porter at Barrow to a neurological specialist who deals with trigeminal nerve problems. I was told by Dr. Porter that there is no need for another MRI and that medication will take care of this new symptom. I am now waiting for the appointment to be scheduled with my new doctor. I will be sure to report the results of my doctor's visit.
Gary
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Hi Gary,
I was so happy to see you updated, and then disappointed for you that are now having trigeminal nerve pain. What a drag - and how very, very uncomfortable the electrical shocks sound.
From diagnosis on, I’ve had some tingling and sensations, but not as you have described. However, I can empathize with how uncomfortable and disconcerting they are. Also, how the very sensations themselves cause a flare-up in AN anxiety. They always make be start to fret about what is going on in there. But, your doctors seem to think it's par for the course - so that's a good thing. It’s reassuring to know they see no need for another MRI and that the feelings can be taken care of with medication.
I know things are really unpleasant now, but they will get better! And you will feel more yourself soon.
Wishing you lots of healing,
Jessica
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Thanks Jessica,
This has set me back a few steps, feeling how unfair this entire trip has been. Nothing life threatening, just life changing. It is comforting that the doctors were not alarmed with my new problem, so I can now lower my anxiety level. Regardless, it is a bummer to have another symptom to add to my long list of AN issues. As usual, thanks for your support and good wishes Jessica.
Gary
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Hi Gary,
It sounds very disconcerting to experience that type of electrical pain. Let's hope this trigeminal flare up is short term. So far you have navigated this unfair and life changing trip with courage and care; I hope this new issue passes soon.
take good care
Stella
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Thanks for your kind words of encouragement Stella. I am confident that things will turn out okay. If this becomes another chronic symptom caused by the AN, then I will learn to manage it and cope. I hope all is well with you and that life is good. Be well Stella.
Gary
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Hi Gary,
So sorry to hear that you are encountering this painful side effect. So many of us have benefited from your willingness to share your AN treatment experiences. The determination and positive attitude you have shown when confronting each problem has been inspiring to me and I am sure to many others. I am sending prayers your way and hoping this new unpleasant problem is quickly eliminated with medication and the last setback you will encounter on your AN journey.
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It is just another ride on the anxiety train. When everything is going okay, I guess a wake up call was inevitable. Thanks for your prayers and good wishes Mary Ann. I hope your AN journey is going well and that you are in good health. You have been part of my little journey from the beginning and I appreciate your friendship. I will be okay, just have to settle down and deal with another AN issue. Be well,
Gary
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I have seen two doctors, and consulted with two other doctors and several neurological nurses over the telephone regarding the trigeminal nerve pain. My November 2018 MRI indicated that my AN tumor is pushing against the trigeminal nerve, therefore causing the pain I am experiencing. Hard to know why the pain is occurring now, but it is. Epilepsy medication is usually prescribed, which stops the neurons from randomly firing. As with all medication, side effects occur.
I have decided not to take any medication. I am going to wait it out with the hopes that as the tumor shrinks from radiation, the pain will cease. Now that I know this is not life threatening, I am much more relaxed and willing to deal with it. Just another day with acoustic neuroma issues.
gary.s
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Gary.s -- you are a rock star! I wonder if now that you understand and are relaxing into it, it might even start to get better. I find the facial numbness / twitches / aches get worse when my stress level (ahem, work) grows.
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Hi jami,
Thanks for compliment, although I think we are all AN rock stars. All of us are going through our own little battle and dealing with it the best we can. Stress does make any of the associated symptoms feel worse, and yes, I am feeling better than I did a few weeks ago. Not as anxious or freaked out about the trigeminal nerve pain I feel. Life is really okay, just have to keep being strong. Be well jami.
gary.s
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Hi Gary!
I am glad to hear you're feeling better both physically and mentally - and you really are brave! I hope this episode subsides and and in due time you can look back and know all is well.
Keep being a rock star!
Jessica
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Hi Jessica,
Yes, I am feeling much better, thank you. Instead of being a rock star, maybe it is more fitting to be just another AN warrior. Just gotta keep fighting and not giving up.
I found that vitamin B complex has helped tremendously. Especially B12, which is a key player in the function and development of brain and nerve cells. So I have been eating well, taking lots of vitamins and getting rest. As a result, I am feeling back to my AN normal with just a little residual pain left over from the trigeminal nerve shocks. I don't wish them on anyone. You are a rock star also Jessica.
Gary
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Hi Gary,
I haven't been on here for a little while so just caught up on your progress...
I'm so glad you found an alternative to the meds that works for you :), that nerve pain firing is intense.
I developed shingles earlier this year and of all the nerves the virus resurrected itself via a cranial nerve on the right eye side (opposite to AN) of my face. Felt like intense electric pain firing through my brain - thankfully lasted only a short time - and is OK now.
It's great that your vitamin and stress management tools have brought that nerve back to calm for you ... your strength and resolve to keep managing the hard things is inspiring, be well.
Stella
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Sorry to hear about your shingles Stella. The electrical shocks to the face are something else, especially when added into the rest of our issues. It just seems like it never ends, just another day in our lives. I am doing much better, thanks for your support. I just pray that the trigeminal nerve shocks do not re-appear.
I have known several people who had shingles, not a good thing. I am happy to hear that you are doing okay now. Fall weather is beginning here in the Arizona desert, waiting for the rattle snakes to go away so I can go hiking. All is really okay, knock on wood. Be well and stay healthy Stella.
Gary
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Greetings All,
I was wondering if those who had CK could post their treatment GY dosage values. I’m considering CK for a 2.5cm AN at Kaiser SSF for 3 days, 6 GY each, total 18 GY. Just hoping I could get some values to see if this is in line with others.
Thanks!
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Hi Ionman and welcome! My AN was 1 cm. I had CyberKnife in April 2006. 5 days, six Gy for total of 30 Gy. I had a lot of serviceable hearing. The goal was to save it. They did. The forums are a wealth of information. There are lots of us that have had CyberKnife done. Again, welcome to the forums.
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Hi Phyl!Where have you been? How's Capt Deb? Have you heard from her?
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Hi Phyl,
It’s nice to see you posting on the forum. I have been following your story since I was first diagnosed and came across an inteview if you on YouTube regarding Cyberknife treatment of ANs. I think it fair to say you are a pioneer patient in this treatment approach. Thank you for all the information, personal experience and positivity you have shared with AN patient’s through the years. Just the other day I was wondering how you were doing now many years after your treatment. I know I speak for many in thanking you for your wisdom, enthusiasm and willingness to share.
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What hearing aid did you choose? My hearing is not much affected but I get deep earache and audiologist told me mild hearing loss that I could do with amplification and get used to wearing one...will be trialing options this week.
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I have the Phonak Cros B. My AN ear is not functional with almost no hearing left in it. The Cros B is essentially a microphone that sends any sound on the AN side to the hearing aid in the good ear. So now I can hear sounds on the AN side, although I do not know which direction they are coming from. If you still have functional hearing on the AN side, this setup may be wrong for you.
Lots of decisions to make, and hearing aids are very expensive. Make sure you are really in need of hearing aids at this point in your AN journey. Your hearing will probably change over time, especially as we get older. Hearing aids that can be programmed for changes in your hearing over time is really important.
Best of luck.
Gary