ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Gtmochi on April 19, 2018, 03:45:11 pm
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Hello!
Reading the journey of others within this forum was extremely helpful as I was navigating the dark, deep waters of Acoustic Neuoma World. I am not generally a sharer, but feel it is so important to document for others who may find themselves in my shoes.
But before I do, whoever you are, you WILL be ok. Things seem so bleak and scary at first. You don't know which way to turn. But in the end, you will be ok.
The image of trying to get a difficult horse on a trailer always comes to mind. The horse is scared, he/she wants to run away, but we are behind them urging them forward. The horse tries to duck to the side, but again, we are there. The horse MUST get on the trailer. Sometimes getting them on takes time, but eventually, they settle and go. Until this very moment, I felt like that sad, scared, desperate horse. With my size AN, watch and wait was not a long term solution. I had to get on the surgery trailer or the radiation trailer. I wanted nothing to do with any of it. I just wanted to run screaming.
But I can say with certainty that once you find the treatment that both your heart and head are ok with, move forward, and you will settle a bit. Just like horses do. Before long, most of them are munching hay and calm as we drive along.
Anyway, here goes:
Symptoms that led to diagnosis - tinnitus, full ear. Was ordered an audio gram and MRI. Slight hearing loss on the right.
Diagnosed with a 2.5 x 2.2 x 1.8 AN on my right side February 16, 2018
Chaos and despair ensued
Research soon followed - I scoured forums, Acoustic Neuroma FB pages, medical papers.
From the beginning, Surgery terrified me so much that weeping occurred when I met with every doctor, or even discussed it with family.
I met and spoke with LOTS of doctors: Dr. Slattery and Dr. Lekovik of House Clinic, Dr. Giannatta at USC, Dr. Yang at UCLA, Dr. Fineman out of Pasadena - he's super (I live in LA). I sent MRIs and chatted with Dr. Freidman and Dr. Schwartz at UCSD, Dr. Cunningham at Duke, Dr. Chang at Stanford, and Dr. Sheehan of UVA. All great, kind, AN-experienced doctors!
I received a variety of opinions ranging from either surgery or radiation - dealer's choice, surgery but you are candidate for radiation, or surgery. I was never told surgery was my only option. Those that suggested surgery (but also said I was candidate for radiation) often cited the reasons against radiation as my age, and the tumor size.
This is when treatment choice becomes exceedingly personal. For me, I am not worried about the potential for a malignancy 20 or 30 years down the road. I am 42. Medical advances will occur during that time and with luck all will be well. Also, the chance of malignancy of my actual tumor is SO low - all signs point to it being a typical AN, so I am going with that. I know for others this is terrifying, and I totally respect that, because I feel the same way about complications or issues regarding surgery.
Dr. Chang at Stanford gave a truly unbiased presentation. Only 2 or maybe 3 other doctors did this, and I had determined that whoever was going to help me, it had to be someone who had a deep comfort level with both procedures, and didn't push me either way. I considered staying in LA to work with one of those doctors, but Stanford and Dr. Chang/Dr. Hancock do so many ANs with CyberKnife...I felt strongly it was worth the trouble and expense to travel. Dr. Chang does a lot of surgery, as well as radiation. He said my tumor was amenable to either. The success rate for tumors my size at Stanford, Dr. Chang told me, was about 93%. He defines success as stopping tumor growth without further intervention. He then went on to say that after that, his top priority is preserving facial nerve, balance, and then hearing. Music to my ears. I hope to be one of the lucky who retains hearing, but my biggest priority is stopping the dang thing.
There are of course, drawbacks to CyberKnife, as there are to surgery. But my heart and head said --- CyberKnife at Stanford. So that's what I did. Waiting for the dates to arrive was hard. But here I am at last. In Stanford as I type. And it has been a great experience. Check in, seeing the doctors, getting blood work, simulation, CT scan, MRI - it is all very efficient and organized. Everyone is kind and on time. The facilities are lovely.
We drove up 4/18, met with Dr. Chang and Dr. Hancock
I also had blood work done to check for pregnancy (nope) and kidney function.
4/19 I had my CT scan (for which I took a course of Prednisone and Benadryl for a suspected reaction to Gadolinium). It for sure helped. I don't have a rash. During the CT scan they made me my mask, which looks like a luchador's. Then I had my MRI and was released into the wilds of Palo Alto while I wait for treatment to begin on 4/23. Treatment will be 3 days for 45 minutes. Because of the size of my AN, I will be given Decadron during that time for swelling. I dislike steroids with a passion. I am told this one leaves some folks euphoric, and then once treatment is over they are gloomy the day after because of withdrawal. But it goes away! In any event, it is what it is. Dr. Hancock said he may also give me something for nausea, as my AN is cozy with my brain stem - sometimes the need to get sick is activated (I guess the nerves or whatever that trigger it are right there). Additionally I will take the Ativan to chill me out. That is a lot of drugs, and I don't relish taking them. But it is only for a short while during treatment (heaven willing), and must be done.
So that's that!
We are staying at a LOVELY Air BNB in Menlo Park. It's peaceful, quiet, and allowed both our dogs to come. I wanted them around for comfort. I highly recommend this place - super quiet, lovely, clean, private and updated.
So far we have eaten at Palo Alto Creamery (so, so good), Sultana (take out - Greek - YUM). Today we went to the Ace of Sandwiches fo lunch. Also delicious. This area - Palo Alto - is STUNNING and reminds me of the green hills of Maryland, where I am from originally.
I'll post more as things move forward :)
Wishing everyone on this journey the best!
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Best of luck next week Gtmochi. You will be fine, just have to go through a wild horseback ride. Just relax and the ride will be over before you know it. Be well.
Gary
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Wishing you the the very best !! you are in good hands.
Kind regards,
Stella
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Good luck tomorrow Gtmochi. Be strong and everything will turn out okay.
Gary
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Our thoughts will be with you tomorrow. Hoping all will go smoothly and will be over with before you know it.
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Hi Gary, Notaclone13 and SP! Thank you so much for your kind support. It really means a lot and I am grateful. :)
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Hi everyone,
This morning was my first CyberKnife treatment. I was so scared - not so much of the machine or what was happening today, but more a sort of fear of what lies ahead in the months to come. I wish there were an algorithm to determine which patients encounter rough patches and which sail through! Still, not once did I doubt my choice! In any case,the nurse, radiation guy and Dr. Hancock were super kind, and the treatment itself uneventful despite the significance I had given it in my mind. Right now I’m feeling a little out of it (thanks, Ativan!) but otherwise fine. Randomly, my tinnitus is lower than before, which is interesting. Also, the docs gave me Decadron (steroids) and Zophran (sp) for the nausea that may or may not happen and we’ll never know if it does because Zophran ;D . Other than that, I feel pretty fine. Hope it’s a trend over my next 2 treatments!
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Hi Grmochi,
Glad it went smoothly today. I know how nervous you must be about the coming months and it's totoally understandable. We are all in the same boat. Good to hear the ativan helped with the anxiety. Could be that it is also helping the tinnitus. I have read that benzodiazopines (such as ativan) help with tinnitus. Zofran is also a wonder drug. Thanks for posting and letting us travel along your journey with you. We will stay tuned for tomorrow's update.
M.A.
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Hello Gtmochi,
Good to hear that you are okay today. Things will turn out fine, just have to do the CK thing this week and then you can rest. I found that all the anxiety I had as the week of CK came and went really exhausted me. It has really taken a few days to start mellowing out. I am glad the Ativan is helping calm you so that you can go through this without too much anxiety. Take care this week.
Gary
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Hi Notaclone13,
I did not know that about Ativan! Now I am trying to remember if it helped when I had my MRI and CT scan on Thursday. I am pretty squirrelly in closed-in spaces or when my head is locked down, so I like to avail myself of whatever is available in those situations! I will try and note if the tinnitus is still improved tomorrow before I take Ativan again. Also, my pleasure sharing my AN adventure - like you I found (and continue to find) the information shared on this forum invaluable. I feel it’s important to pay it forward!
Jessica
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Hi Gary,
So far, so good! It really helped to hear how things were going for you! I think you are right - anxiety and stress have been taking such a toll. It’s hard to parse whether I am feeling a little out of gas because of treatment, the medication I’ve taken, or plain old stress! I am loooking forward to when this is behind me and I can get back on the horse :). Hope your own recovery continues being a good one and you are feeling aces in no time!
Jessica
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Hi everyone!
Day two of CK at Stanford went just like the 1st - except no crying on my part ::) . Like the first, this session was 35 minutes. Wally (the CK machine’s name) prowled around my head working his magic. Truly this process is one or two steps removed from that. They give you Ativan, you lay on the platform, the mask is applied, and the machine does its thing as you lay still and placid as a sun bathing cat.
Today felt much the same as yesterday - I paid close attention to different sensations while Wally did his work, but I’d be pressed to say I felt a thing. Maybe some more fullness or heat occasionaly? Could be my Ativan addled mind :). In any case, I was up and out and visiting the Apple Campus (very cool augmented reality display and yummy hot chocolate). Now I sit in our Air BnB’s garden, reading.
I feel a bit out of it - somewhere between dazed and lazy, but it’s hard to say if that’s the treatment or the drugs. The decadron for sure would not let me sleep last night. Every time I’d be about to tip into dreamland my mind would stop me from falling. Very frustrating. That too could also the culprit behind feeling out of sorts.
Anyway, so far, so good. Tomorrow is my last treatment. Afterward, we head back to LA.
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Hi Gtmochi,
I am sure you are feeling dazed and out of it, pretty exhausting week for you. It is almost over, then you can go home and rest. I did not know that Stanford was doing three days in a row, thought it might be MWF instead. This way you get it over with real fast. My five sessions just prolonged the exhaustion, you are almost home free. Try to get some sleep and hang in there. Looking forward to hearing how you are doing when you get back home. Be well.
Gary
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Hi Jessica,
You've made it to third base, and after one more hit you're headed back to home in LA with a toasted, shrinking AN. Hopefully once you are minus the decadron you can get a good night's rest. Maybe they could give you a couple of ativans to take home. That would certainly help you sleep, or at least relax. By the week-end you should feel back to normal and ready to get on with life as usual. Don't forget to pamper yourself for a few days, you deserve it. I admire you for making your decision and jumping in head first (literally). Looking forward to hearing from you tomorrow.
Best,
M.A.
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Hi everyone!
Day three of CyberKnife is over, and everything went smoothly! Afterward, I met with Dr. Chang and Dr. Hancock, who both went over who to contact regarding symptom fluctuation and what to expect in the coming weeks and months. They were extremely nice!
I woke up this morning with a little fullness on my AN side, which they told me was common. Other than that, I haven’t felt much different. However, I will say my hearing has a bit of a broken speaker sound sometimes - it depends on the loudness and tone, I guess. Probably this is my hearing maybe going though something. With luck that weirdness stops, but I know there are no guarantees regarding hearing. As long as the AN is ultimately stops dead in its tracks I am happy.
I took a Benadryl before bed last night, which blessedly blocked the Decadron from keeping me awake, so I woke up feeling more myself. I am so glad this bit is over. Now I am interested in how I’ll feel without Decadron tomorrow. They did not give me any drugs to take home, but I’ve got my CBD oil!
Thank you, Gary and Notaclone13 for your support and well wishes! It means so much. I felt I had to dive in (ha!) head first. Something inside me told me NOW. So I listened :).
Now we’re off to head back to LA! Wishing everyone health!
Jessica
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Well, here I am, two days post CK, and I'm not gonna lie...yesterday was interesting! The doctors cautioned me that the day after my last Decadron I might be blue. But I didn't believe them until I burst into tears at the vet's office (one of our dogs caught an eye infection of some kind while in Palo Alto). Most of the day I felt disconnected, hurty, as if my eyes were on delay, that the skin/muscle on my head where the CK machine had been was rippling, and there was a little pressure or tightness that shifted and moved around my head. Also, I had some weird floaters in my vision. All very odd. Additionally, I gave myself a tension headache in addition to the actual headache that came later in the day. I took some Tylenol, lay down, and felt better by bedtime.
I put in a call to the nurses at Stanford - the floaters were alarming - and it was communicated that that was something not as common and that if it does not go away to let them know. Today they are gone. Thank goodness! A good portion of my issues (the floaters and, a friend told me, the eye delay) were due to one or more of the drugs wearing off. I had been given Ativan prior to each treatment and Decadron + Zofran after each treatment.
If you are reading this and considering CK, know this - I definitely rode a horse yesterday afternoon as well as took my dog to the vet first thing in the morning. You can absolutely function the day after. Just probably not in total comfort, at 100%, or without feeling bizarre.
I have been an avid rider since I was 6 (42 now!). It gives me such joy, and I am loathe to let this AN get the better of me in that department. At the moment I am very lucky in that my balance issues are pretty much zero. Previous to treatment, I had a couple motion sickness moments, but they settled after taking a walk. I have convinced myself that riding has acted as a form of vestibular therapy (I ride about 5x a week) and has staved off further balance issues. As a result, I am determined to continue to ride as much as possible.
Today, my head no longer feels as if it were rippling, the headache has receded (I took 2 Tylenol this morning for a slight headache), and the delay/wonky feeling has abated. If I had to work today, I could probably manage to grit my way though it. But if you can give yourself time off, try to do it! I rode again today, and now plan to relax the afternoon away.
Oh! I forgot to mention - there has been a weird broken speaker thing going on in my AN ear. It makes my voice and some noises sound as if they are shorting out. Yet I can still hear when I put the phone on that side. That was not a thing previous to CK.
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Hi Jessica,
Thanks for posting your update. All this information is definitely good to know for those of us considering Cyberknife. Sounds like you had a kinda weird day yesterday. Happy to hear the weirdness was transitory. It's fantanstic that your balance issues have been minimal. I agree with your thinking that riding has provided a form of vestibular therapy. In my case it is taking a daily walk. Sometimes I am a little off balance when I start, but it seems to get better as I go along. However if I overdo it, I end up feeling dizzy and have to sit down for a while. At any rate, keep posting to let us know how you are doing. With your determination and optimism I am sure you will do fine.
M.A.
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Now that I am 6 days post-CK, I can say so far, so good. After CK, I had all kinds of weird head and body feelings. The first couple days were probably the weirdest. Despite that, I have tried to keep moving. I rode again on Friday (two horses!). This time, I rode by myself - the Thursday after CK I had a seat lesson. This sort of lesson is done while the horse is on a lunge line (loooong rope), and you are riding walk, trot, canter in a circle around the person doing lunging. It’s a bit more controlled, focuses on balance, and was a good place for me to start. Friday, I rode and I was filled with such gratitude that I could still ride....oh how happy I was! I knew that in theory I would be fine, but it’s hard (for me, at least) to accept that. Though optimistic, I like to be conservative in managing my own expectations. Well, I wasn’t 100%, did wake with a smallish headache, and I did need to rest that afternoon, but I felt better than Thursday and Friday it was off to the barn!
I have been tired (Thursday - Sat were the most pronounced) but not too bad. I wasn’t racing around as usual, but for sure mobile.
Saturday and Sunday I went to the gym and was so grateful to find I could still go on the elliptical and rower and hustle…let me qualify this. I dislike the gym. I do not stay more than 30-45 minutes total on the machines. I am not a beast! But I could do the levels I usually do, and was not wiped out after.
That’s been pretty much my experience thus far. I wake up, feel better than I did the day before, and plow ahead. When I say better than I did before, I don’t mean that my AN symptoms are gone - they are still there! But the new ones - the ones that kind of alarmed me - are pretty much gone, and I am left with what I started with. Which is a-ok by me.
I should mention that yesterday as I was driving back from the barn, my eye was twitching! I became worried and messaged the nurses at Stanford (they have this awesome app!) they got back to me quite fast and said that Dr. Chang said eye twitching as I described is not associated with ANs, and is most likely fatigue or stress. I slept hard last night and no twitching today. Also, though my tinnitus waned during and for several days after treatment, but my talkative friend is back! Still a low, manageable noise, but man, I had such high hopes! Also, my face tingling has really gone down. It was not too bad before, but now it’s often barely noticeable. I am waiting for that to come back, too. But so far so good!
Monday it was back to work, and I am happy to report that it was not a challenge due to CK. More because I am lazy after not working for over a week! I got used to being a lady of leisure ;D.
M.A.: You are so right about exercise. Though I am very early in this process, walking, riding, biking, swimming or whatever activity you love, if you are able, keeping at it is a good thing. I hope you are right about my determination and optimism!
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Nice to hear that you are doing well Gtmochi. It sounds like you have been very active and not allowing the effects of CK to stop you. That is wonderful, just gotta keep moving forward. I am glad that even though you are a distance from Stanford, they are responding when you need them. Especially when an unexpected symptom shows up and you become worried. It is so easy to freak out right now. I have been trying not to panic, forcing myself to wait a day or so to see if a symptom settles down and they usually do. Panic and anxiety seem to exasperate things, and that does not help matters. Have to find ways to relax so we can remain calm through this CK adventure. Riding horses sounds like a perfect way to take your mind off of things. Take care and continue feeling better. Your fellow CK traveler,
Gary
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Hi Gary,
I have been trying to be active - mostly I just try to ignore what I am feeling and plow ahead :). Hopefully that will be enough in the coming year. It is SO easy to freak out over every little thing. Funny that you gave yourself a wait and see policy - I instituted one of those on myself the other day! As symptoms evolve and devolve, I tend to freak out too. It's easier said than done, but since the other day I have been trying not to obsess over every change by redirecting my nervous energy elsewhere. Like work or writing, or cleaning or baking (I made amazing blueberry muffins last night!) or sharing too much on the ANA forum ;D.
You take care as well and keep feeling better!
Happy trails!
Jessica
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Hi Gtmochi,
I know the relief of having the treatment finally done...its a roller-coaster of decision making and emotions for sure! It also gets a bit stressful for me when "new" symptoms come up; its a good idea to distract yourself if you can. I also had the advice to think of the intermittent symptoms as the CK doing its thing to treat and halt growth... keep up the positive thinking and activities and best of luck ...cooking is always a good idea :).
Kind regards
Stella
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Hi Stella,
Oh! Your advice is so on point! You are right - I should try to think of the intermittent symptoms as as the CK doing its thing. Thank you SO much!
Jessica
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Hi Gtmochi,
New symptoms can definitely rattle you and cause lots of anxiety. We just have to learn to ride them out, knowing that most of them will go away soon after they appear. This is going to be a long journey, with a very fast learning curve. I like what SP says, that the symptoms indicate the CK is doing its thing. Got to be strong Gtmochi.
Gary
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Well, a little over 2 weeks post CK and all seems to be status quo! Gary is right (thank you for reminding me to keep calm and carry on, Gary!) when he says the symptoms can rattle you and that you just have to ride them out. When I think about it, the symptoms are pretty much those I had before. Just now they have more significance since I've had CK. So really, as everyone who has ever had CK has said before me, the problem is trying not to trip yourself out.
I chatted with a physical therapist friend of mine, and described that weird motion sickness feeling I sometimes experience. She told me that is actually disequilibrium...or dizziness. HA! So all this time I thought I had experienced no dizziness, but I was totally wrong. Anyway, I had a couple spells of that before CK (they never seemed to last too long and always were remedied by going outside for a walk) and I've had a couple since. They seem to happen a little more often. But again, that's possibly because I am aware now. They aways seem to come when I am still and thinking, such as in the evening. After I was diagnosed, I suddenly had face tingling, motion sickness...I was on alert all the time for any symptoms! I believe this is happening now. So I sort of try and pretend I don't have a 2.5 cm AN lurking in my head and that seems to work most of the time ;D.
Physically, I am riding, going to the gym, baking like a fool, and working just as before CK and before diagnosis. I dislike even saying that though, because I don't want to jinx myself! Unless things change, I'll report back in a few weeks time. Also, there's no hair loss outside of the norm, either. Although to be honest I have a lot of hair and it's long. It's difficult for me to tell if I am shedding more than usual ;D.
One more thing -- I feel I should share any supplements I am taking. Though I've no proof they are helping, I do feel good! Here they are:
Green Vibrance (it has Sulforaphane, which miiight inhibit ANs: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5090244/ ). If nothing else it has loads of probiotics.
1 baby aspirin a day because hey -- that has some AN inhibiting studies, too.
CDB tincture at dinner for a restful sleep -- and it has been used to help the brain recover after traumatic brain injuries. So maybe it will help me, too :).
A daily multivitamin.
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Hi Gtmochi,
Sounds like you are doing fine Jessica. I have also been waiting for the bald spots to appear, but my radiologist said it does not happen to everyone. If it does happen, I am sure long hair will conceal it pretty well. It does grow back, so no real worries. Nice to hear that you are being so active and doing all the things you did prior to CK. It is important to resume our lives to the best we can. Hope the coming week is a good one for you.
Gary
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Gtmochi,
Thank you for sharing your 'blow by blow' commentary of CK treatment at Stanford, the explanations were in the right proportions and serve as a great help in prepping anyone deciding to take the treatment. You are an AN warrior!
I am a latecomer to this thread, yet, a multi year watch and waiter, a time in which I too have consulted with a number of specialists, including the folks at Stanford CK.
I second all the positive comments on your fortitude and management of your symptoms, and was highly impressed with your commitment to riding horses. I am similarly connected, though to a road bike, which helps define/improve? my quality of life.
I do have a question regarding the impressive amount of homework you did beforehand: did you visit anyone who specialized in, or investigate, the use of proton therapy to treat ANs?
Hoping each day brings you closer to the best of outcomes.
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Hi Jessica,
your posts are truly inspiring...thanks for the reminders to keep on keeping strong... and for your neat summary on the supplements, very interesting to me.
best of luck on the continued healing journey,
Stella
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Gosh! That's what I get for not turning post notifications on – I missed all your messages!
Gary, thank you for the reassurances about hair loss! I hope it doesn't happen to either of us, but you are right -- it will grow back. Hope you are doing well and that your post-CK journey continues smoothly!
Freelander, Thank you for your well-wishes! I am glad my account CK at Stanford wasn't too crazy – I get a little over-share-y. I can't remember if I said this about Stanford or not, but that place is run so well. I rarely waited for any appointments, you could check in using the Stanford app. After, when I have contacted the nurses, they responded so quickly! One of Dr. Hancock's nurses also contacted me a little over a week after CK to check on me.
I bet road biking DOES define and improve your quality of life as horses do for me. Being without horses would be really, really tough. Throughout all my rough patches (including a bad spiral finger break that ended up causing 3 surgeries, closing a business, etc), I've always kept riding and horses constant. I really believe that it has helped me keep moving forward, and in this case been an immeasurable help in keeping my balance mentally and physically. I am hoping this time is no different – and that road biking continues to do, and does do the same for you if someday you are no longer watching and waiting.
As far as proton therapy, I hadn't really come across it much in my research. Although admittedly I was so honed in on CyberKnife, Gamma Knife or surgery that I didn't have enough bandwidth for proton therapy. Then, when I started speaking with doctors, many sort of dismissed Proton Therapy as a treatment for ANs or didn't mention it at all (and I never asked because the bandwidth problem). But I have to say, my gut response is that it was dismissed because it's a new-for-AN treatment. Wishing you uneventful watching and waiting!
SP, I am glad my supplements were interesting to you, and thank you for your well wishes! Your posts helped me so much before CK and after, as well. Previous to treatment, I would lurk about on this forum, reading everyone's experiences, trying to wrap my head around my AN. Your story was an affirmation and an inspiration. How brave to come to CA all the way from AU! I hope you're healing journey continues to be smooth!
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Hi Jessica,
thank you so much for your kind acknowledgment --I am so glad that my story was in any way helpful to you and the tough journey of navigating an AN and treatment options. I had many, many, people from this forum to help me with my journey too. I read all their posts and reached out via PM, Skype and phone calls... talk about a research project... I've had a few up and downs; and I know the anxiety increases around my yearly MRI check up .. it's coming up in August...I'll post a year 3 update then.
speedy healing to you:)
Stella
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Gtmochi,
Thanks for responding and the kind words. I read about your supplements, I have been taking a full aspirin a day for several years now and uncertain if it has had any slowing effects as the tumor has still grown. On the other hand I am intrigued about the potential of another drug that shows real promise to arrest tumor growth, based on studies done thus far:
https://www.masseyeandear.org/news/press-releases/2018/04/mifepristone-may-halt-growth-of-intracranial-tumor-that-causes-hearing-loss I have an appointment with the lead doctor early next month to find out more, and whether I, a male, would be a candidate if a clinical trial is in the not too distant future.
The doctors I saw at Stanford are the same that SP had for treatment. I didn't have a chance to meet Dr. Hancock and had heard about him via another doc in NYC. I did meet with Drs. Soltys and Chang. You are right about the Stanford Health campus, very impressive, and it is reassuring to hear favorable impressions about the doctors and nurses during a very challenging time in one's life.
I'm also still exploring the possibility of proton therapy, and while historically not used much for AN, a relatively new pencil beam version has shown promising results. It is especially attractive in that the full treatment dose stops at the target and does not pass through healthy tissue and cells as other radiation does as it leaves the body. However, it is puzzling that it needs 25 treatments. I think the CK uses three treatments, after setup, at least according to that Dr. Chang said.
Good health and happy trails!
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Freelander - Thank you for sharing that link! I know Aspirin does not work for everyone, and I have no idea if it works for me, but it certainly makes me feel less powerless ;D! As do the other random things I take that caught my magpie eye. I truly hope that Mifepristone DOES prove to be effective and becomes something we can all try. What a wonderful thing that would be!
Stella, What a research project it is! We are fortunate to have this forum as a way to connect with others. I hope your next MRI is as positive as those before, and wish you a recovery whose trajectory continues to move upwards :)
It's been almost a month since my last CK treatment, and so far, so good. There has been a cycling of symptoms, but all had been there previous to CK. My main issue is managing my own worries about what lies ahead. I have to constantly remind myself that not everyone experiences bad patches of symptoms due to CK. Dr. Chang told me that the success rate for ANs my size is 93%, and that of that 93%, about 30% have symptoms for which patients require intervention. I keep telling myself it is possible to be one of the larger, more fortunate group! But man, it's hard to keep yourself from going into a worry spiral. Nonetheless, I feel generally good and have been doing all the things I did before diagnosis and treatment. For that I am deeply grateful. Anyway, wishing everyone health and happiness! Jessica
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Hi Jessica, happy to hear that you are doing well. Just wondering, did Dr. Chang mention the nature of the problems that 30 % of his Cyberknife encounter? I was kind of shocked to hear 30% have problems that require intervention. I assume that balance issues and facial spasms would be in this category. Just remember, that 70% have no significant problems and tell yourself that you are in the 70%.
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Hi M.A.!
So far, so good :). What I understood Dr. Chang meant by intervention were steroids or things of that nature. He said that many patients never encounter them at all. Yet I had read all about them here and also on the My Acoustic Neuroma blog, and found the reports of increased dizziness, headaches, head/ear fullness, and facial spasms alarming. He also told me that they have no real understanding of why one person's AN swells and another's does not, yet both have positive outcomes. Frustrating! I like knowing every little thing and all the odds of what I am up against so I am ready to fight! Anyway, that number is in the ballpark of what other doctors told me - one said 1/3 of patients with successful outcomes need help with an increase in symptoms. However, those statements may pertain to those whose AN is in the size range of my own. Dr. Chang was clear that his success rate number of 93% at Stanford was specific to my AN size. He said that were it smaller the success rate would be even higher. Imagine that! Wish I had found the stupid thing sooner. That number of people occasionally requiring steroids or anti-nausea medication to help them grit through the tumor responding to CK may also be different for ANs of a smaller stature ;D. You are right! I need to focus on the positive, larger number!
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Well, here I am, just shy of 8 weeks after CK and things seem to be going along just fine (fingers crossed it stays that way!). When I first showed up at the ENT, my symptoms were tinnitus, right side ear fullness and a faint tingling on the right side that I presumed to be TMJ related. If only it were! In short order, it was discovered I had slight hearing loss in my right ear. Right after diagnosis, I had all kinds of symptoms - I attribute the spike in scary stuff to stress! I experienced increased tingling/cold feelings on the AN side, some bouts of motion sickness, ear pain, and tension head-aches. Once I'd calmed down, those did, too - although it took a few weeks!
Anyway, after my treatment at Stanford, the tingling has really subsided - it's barely there. More of a faint, not-very-noticeable cold feeling that comes and goes. Balance seems to be fine - in fact, right before diagnosis I had read that if you can't close your eyes and balance on one foot, it may be an indicator of an AN. To my consternation, I could only do a second or two on one foot with my eyes closed. Post CK, I can hold it for longer - maybe 10 seconds on each foot with my eyes closed. I am not sure this is due to the CK - I really feel stress and exhaustion play a role in exacerbating symptoms. Just like it would in any situation!
Tinnitus - it waxes and wanes, but is always pretty low level. Right after CK it was almost gone. Bliss! Lately it's back to it's quietly hissing self :).
As I type, I feel mostly fine. The past few days I've noticed head-crawly feelings at the AN side on my temple and above my ear, as well as the sensation of something touching my head there. It's not pressure per se - just sensation. It comes an goes, and literally messes with my head - ha! If I think about it too much, I start to tell myself all sorts of things. I worry that this is the beginning of something that will increasingly get worse and result in major discomfort and the need for medication or medical intervention of some kind. I've been so lucky so far - surely something must go awry? But then I remind myself that it could also be just the nerves healing. Or being affected by the CK. Or the AN leaking stuff that's hurting them, or just another round of weird symptoms - after all, I've had similar feelings before. I wish I didn't have to wait until October for an MRI simply because I am DYING to know what lies ahead for me. But it's ok to wait, too. I mean - I was diagnosed February 15, and as I've gotten used to the idea of an AN and sought treatment, I've gotten back to normal. Not spending hours upon hours researching. Sometimes the fact that it exists is pushed to a remote enough corner of my mind that I forget it is even there - usually when I am riding, at the gym, or out at a yummy restaurant ;D.
Hearing - hmmm. Since being tested for hearing in February, I am now aware of its deficits. I can't honestly say if it has stayed the same or gotten a little worse. Probably the latter, since that seems to be the way things go. I for sure can still hear on the AN side and can understand talking on that side as long as there is not a ton of background noise. But it's not perfect. For example, when walking beside a friend talking, I want to have my left ear closest to them. I find I miss a lot or have to try harder to listen otherwise. Also, I have an alarm on my phone that sounds like birds tweeting. Totally slept through it the other day :o. Also, I sometimes have a weird distortion when certain pitches of sound reach my AN ear. Sometimes it is pronounced, sometimes not. I try not to think about it, because it bums me out ;D. I presume it can only indicate deterioration. But you never know!
I am sharing all this in the interest of full disclosure - I was hungry for every stinking detail when researching about my AN and treatment! However, if you're reading this and worried about never being ok again, know that truly, day to day I am good. I have not slowed down at all. I still ride several times a week, go to the gym, go out to restaurants are are noisy, work on my laptop at home, do random yoga poses when I take breaks from sitting and working ( I work from home! Don't worry - I am not doing Down Dog in the middle of an office ;D). When out in noisy places, I just position myself in a good spot at the table so I can hear conversation, or walk with my good ear closest to my companions. I do take CBD tincture in the evening and then Advil when I go to sleep at night if I have a weird head feeling like the one described above. In the morning I have my yucky-tasting Green Vibrance and the baby Aspirin.
Here's hoping that things stay this way all the way through!
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I've enjoyed reading about your journey. I did CyberKnife with Dr. Chang in March, 2017. Other than about a week of headaches--not bad but noticeable--about four months after treatment, I've had no issues and no need for post-treatment steroids. I know it's easier said than done, but try to settle in for the long term. Or, to use your excellent horse analogy, we have a long gallop ahead of us. Enjoy it!
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Hi Julia!
How neat you went to the same doctors almost exactly a year before me! I went in April this year. Thank you so much for sharing your experience and thoughts! It's reassuring to hear from someone who has had no issues after CK... and I can totally get behind a long gallop :). Thanks so much!!
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Hi Gtmochi,
It sounds like you are doing fine as the weeks are passing. I am having weird sensations on the head also, tingling skin, at times burning, and I have lost a little bit of hair. I was expecting this to happen a couple of weeks after CK, but it is occurring now. My doctors told me it will all pass, and the hair will grow back. I thought my tinnitus was completely gone, but then about a week ago it started up again. Not as bad as it was prior to CK, but I still get buzzing sounds. Hearing is something I am struggling with, but figuring out ways to compensate for the loss. Your symptoms sound very similar to mine, and I am confident you can find ways to cope as I have. One day at a time, and hopefully tomorrow will be as good as today, or even better. Be well Jessica.
Gary
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Hi Gary,
Aren't those weird head feelings the worst?? Not because they hurt, but because they are so creepy. Ugh - the tinnitus came back! I know that feeling...just when you think it's gone :'(. I hope it settles down for you! Tinnitus is so annoying -- not only because it's a sound you can't get away from, but also (for me at least) it's a constant reminder that there's something wrong and that the AN exists. So aggravating. The hearing is hard, too - I am glad you are figuring out ways to compensate for the loss. Feel free to share any tricks! It's a hard thing. But I am sure you will be able to cope in the end, and so will I! I know 2 people who are SSD (one is an ex-drummer and the other is a friend who lost it in a freak accident). Both learned to manage and seem just fine. So each time I feel sorry for myself, I think about how SOOOO many people have this problem, and they are all walking around, doing their thing. If they can, so can we! Especially when there are people going through the same thing to whom we can reach out :). Here's hoping things continue upward, and I hope you keep enjoying your summer!
Jessica
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Well, it happened. I had a little episode. It was not fun and at the time quite scary! I was minding my own business, watching The Great British Bakeoff, when I felt a little odd. My tinnitus became more intense, I had a bit of a foggy head, my face tingling roared back. Then I got dizzy. As in I felt I was drunk without the buzz. I stood up - walked around to make sure I wasn’t imagining things. Nope. Dizzy for sure. And the face tingling? It raced up and down the side of my head from crown to jaw like lights on a Tron helmet. Needless to say I was alarmed. Which made everything worse - then I was sure the rippling, nerve feeling on the right was mirrored on the left, then waterfalling on down the front of my face. I thought my hands and feet were falling asleep. There was also a little tiny bit of pressure - as if someone was rhythmically and gently squeezing my head a few times. Kind like you might an orange. Very disconcerting.
Back when I broke my finger (it was a very bad spiral break - my finger pad was facing the wrong way!) we discovered I had Vasovagal syncope. Basically, your body overreacts (to things like blood or emotional distress) and you sort of...well, pass out. It happened to me 3 times the day of the finger break. I was like a Fainting Goat! So when I began to panic about my AN acting like a monster, the same thing happened. I started to feel like I might just pass out in the living room. So my husband hustled me upstairs, gave me three Advil, and lay down beside me. I made myself sleep by telling myself I’d be fine in the morning. And I was.
A little shaken, but ok. Not dizzy and the face tingling had settled, as had my tinnitus. I was scared to go to the gym. What if the same thing happened amongst strangers while on the elliptical? What if it happened while I was driving? But I made myself get dressed, get in my car, and go. Use it or lose it, my mom always says. And it was the best thing for me. By the time I got off the elliptical, I felt strong and more like myself.
I had messaged Dr. Chang’s nurses at Stanford the night before and they answered me first thing. I also called Dr. Hancock’s nurses for good measure. The net-net was that this was part of the process. I was told that if I have that craziness several days in a row, or it gets worse, or even if it begins happening on the regular, I should let them know. But what I experienced was normal within the context of ANs and radiation treatment. I was also told it could happen again…or it might not :-X. In the grand scheme of things, it was scary, but not unendurable. Perhaps this is what they meant about some patients experiencing wacky things, but nothing that needs prescription medication.
Since that day (Thursday night - it’s now Monday) I haven’t had any kind of drama. Except me getting worried and over-anxious every night around the same time (which is receding with each night that passes), my symptoms are back to their quiet selves. I went to the gym on Saturday ran all kinds of errands, baked a pie. Sunday I rode and ran errands. I rode again (two horses this time) this morning. Basically, things are back to my wack-a-doo normal. I am hoping that this is how its goes - little flare-ups from time to time, but mostly all is well. Now that I know it can come and then go, I feel a bit better about riding it out. Well, I say that now, but I am pretty high strung.
When I think back to before that poo-poo experience, I think there were some warning signs - I noticed I was more tired than usual after a couple rides. I also noticed I had a few bouts of burning rather than tingling sensation under the right side of my tongue where I don't normally get them. I had chalked it up to fluctuation and gone about my business. And maybe that's all it was. Or maybe it was the beginning of my flare up. We'll never know!
Anyway, that’s it for now! I just wanted to share my experience - it was quite alarming, and if someone else finds reassurance in my silly posts because they have the same thing, then I am glad. Hopefully I’ll have no need to pop back on this thread and post before the end of July, which for me will mark 4 months post CK.
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Happy Independence Day, there's more to that than Happy Birthday USA!
Thanks for posting Gt. Good to know that your life has bounced back from what was a chaotic few days, and reassuring to know that Dr. Chang's nurses were quick to respond.
Pulling for ya!
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Thanks, Freelander! Happy Independence Day to you, too! I am glad Dr. Chang and Dr. Hancock's nurses were so responsive, too! All's been well after my little incident, so fingers crossed! ;D
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I’m so glad you got through that craziness ok ! One day at a time is all we got ;D
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Thank you, SP! I have been thinking about you - your 3 year (right?) MRI is right around the corner! I am wishing you the very best!
Also, you are so right about one day at a time! It's the same for everyone - even those who don't get told they have an AN. I mean. Life certainly can change in an instant, can't it? Jeeze. Anyway, I really hope you have great news in August!
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Thank you for remembering and your kind encouragement. Yes year 3 MRI will be in a few weeks ... it's always a stressful time for me but thankfully I get a reprieve this year... no Gadolinium required so no needles or injection yiay! I'll post an update with results then.
take good care,
Stella
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Well hey there, 3 month CK anniversary! The 25 of this month marks the beginning of my 4th month post CK…and I am pleased to report all is well. Aside from that one freaky experience I had earlier in the month, things have been well. Better than well in many respects - with the actual treatment behind me now, I’m relaxing into this ride. Its idiosyncrasies are now familiar, and I am spending less time fretting. Occasionally I’ll feel on the cusp of getting worse before getting better, but I suspect many of those moments are generated by focusing too much on reading into what is going on on my face, head or ear and then proceeding to Anxiety Land. The more I keep focused on living and moving forward the better things become. As always, now I’m worried I’ve jinxed myself, but I’ve knocked on wood here in my office so…
I truly think that a big part of my feeling good has to do with staying as active as possible. I know that riding horses and going to the gym are not possible or of interest to everyone, but if you can move, push to do so. Every single time I feel a smidge odd, it’s resolved by the gym, riding, or a walk with my dogs around the block. I actually wish I had worked past my panic during my little episode and gone for a walk (with my husband as a steadying hand). I’m willing to wager I would have felt better. If there is a next time I am not laying down without trying harder to fight!
Another thing that has helped keep me focused on the future and now and is making plans. This month my mom visited, we went to a concert at the Hollywood Bowl, I had a baking class and lesson with a well-known instructor who earned herself medals in the Olympics! For August, I signed up for a couple baking classes and another riding lesson with that trainer . Those exciting things keep my eyes ahead and not inward. I get there, have fun, and on to the next. I space them out so that I can use them as you would monkey bars - to grab one, pivot, and swing to the next. Before I know it, the month is done! That’s important for me, since for whatever reason the 6 month MRI is one I am very eager to hurry up and get here. I realize that it is very likely I’ll be waiting longer for any indication of the treatment’s imapct on my AN, but nonetheless that milestone looms large as a pivotal door to pass through.
My symptoms are pretty much the same as they were before CK. There is some fluctuation in all of them. Tinnitus remains low key and largely ignorable, I've still got vague sensations in my cheek, fullness comes and goes, motion sickness feelings very occasionally...but all of it is manageable, and I honestly can't really point to any one thing that's affecting quality of life. Other than dreading what's to become of my hearing. At this time, the loss (I can still hear with that ear on the phone so I am lucky) has been manageable and navigable. Noisy places can be a little worrisome + tiresome, but I just try to sit in the right spot to hear conversation. It certainly doesn't prevent me from eating out or going to the Hollywood Bowl ;D.
Anyway, assuming all is well for me in the interim, I’ll post back here in a month!
PS: Stella - I can't wait to hear about your great MRI results next month! That's wonderful you don't need the contrast now. I loathe that stuff. I have a mild allergic reaction, so they give me steroids and Benadryl in preparation and it's yucky. In addition to the indignity of a needle!
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Well, nothing too exciting to report at the end of my 4th moth post CK! I am feeling well, and have not had to roll back any of my activities, work, or life.
Certainly I have days in which I get a bit emotional and edgy in response to the symptoms I’ve always had - whether they worsen or fluctuate or not. For the most part, the symptoms are not new - nor are the caused by the CK. They are just there - a constant reminder of my little hijacker.
The only new-after-CK issue I have had has been some twitching under the eye and on the eyelid. Neither are both at once, and neither are all the time. Also, neither are painful. More of a nuisance and just another reminder of the AN. Occasionally I’ll get a sensation of twitching in my chin or eyebrow - neither can be seen when I look in the mirror. If you have long hair, you’ll know what I mean when I say it’s as if a strand needs to be wiped away from that spot - but it’s not there.
So far, I haven’t had a full-on facial spasm - for that I am grateful.
As a precaution, I contacted Stanford about the twitching. The nurse with whom I spoke told me what I already suspected - that it was likely the nerve being irritated by the AN or the treatment. She said if I wanted, they would prescribe steroids. I asked if it would be unwise to simply ride it out, as I planned. I was told that doing so would be fine. Not taking medication is my preference - unless necessary. At this point, the twitches don’t happen every day or all day. They are merely annoying. I choose to assume they are going to stay that way and eventually go away. I also choose to assume that this is just the CK doing its work, and that it is a good thing.
Which brings me to my most salient point. Up till now, I have been fortunate to not encounter any real physically debilitating issues that I know many AN patients have. For that I am grateful, and realize that I am lucky. Thus far, it’s the mental/emotional aspect of this journey that has made it a real test of my grit. Grit I’d quickly run out of if it weren’t for my family, friends, dogs and horses (seriously) cheering me on.
So if you are reading this, wondering if post-CK life will be wretched….I can only tell you that at the close of my 4th month post treatment it’s been no worse than it was before CK - physically. Mentally and emotionally, it’s worlds better than what I (and everyone else with an AN) experienced at diagnosis. Which, as far as I am concerned, is just fine. Of course everyone does not have that experience, and things may change, but so far, so good :).
Hopefully the next time you are subjected to my pseudo-diary will be this time next month!
PS - I forgot to mention my hearing. It seems *about* the same as when diagnosed. It was a mild hearing loss then, and probably still is now. Maybe a touch more loss. But I can understand people when they speak from the AN side (as long as there is not a ton of ambient noise), as well as hear the music coming from my headphones at the gym. Not perfectly, mind you, but hey - I'll take it :).
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Hi Gtmochi,
Well it seems like we are both feeling similar things at this four month time zone. I am having numbness along the right side of my face, especially between my AN ear and the corner of my eye. My right eye is watering a little, and it just feels weird. Hopefully it does not impact my ability to open and close my eye lids. My hair is somewhat long, and I also have the phantom hairs tickling my AN ear. Each time I go to wipe the hair away, it is not there. I have daily ringing in my ear, although I have learned to ignore it. This is just an indication that the tumor is swelling and responding to the radiation.
I am really doing okay and not complaining about all of this. These are just the issues at the four month mark post Cyber Knife radiation. All is well and I am looking forward to cooler weather here in the Arizona desert.
Gary
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Gary! Wow! We are so having a parallel experience! It's pretty incredible. I did not think of the feelings I was having as numbness, but you know, after you've mentioned it, that may be what it is. A little - I can still feel when I brush things on the side of my face (because of course I have to test and make sure all the time) but it for sure feels odd enough that I keep testing to make sure things seem to be working mostly as they should. I so hope it does not impact your ability to close your (or my!) eyelids. It is so scary - the uncertainties regarding what is going to happen next. It's like a roulette of things that can happen that I'd rather not win!
My tinnitus is daily too - but mostly an ignorable sound. Although it sometimes acts up, it usually dies down eventually. Thank goodness!
How reassuring that you think all of these sensations are because the tumor is swelling too!
Anyway, I am super glad you are well!
Jessica
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Hi Jessica,
I really like reading your insightful diary entry, you have a talent for capturing the details of your journey that are often similar to mine . It so good to hear you are keeping as positive as possible. It sure sounds like you have tonnes of grit to be handling this roller coaster journey so well. If you can ride out the variety symptoms & effects of the AN / CK / life in general -- then you are going well. Of course there may be some lifestyle adjustments due to things like hearing decline and wonky head feelings, but if these do not require a medical intervention --- then in my view that's a big plus! Keep well.
@Gary - good to hear you are doing well and keeping positive too! it's heartening to be on this crazy path with positive people.
always moving forward,
Stella
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Hi Stella,
Oh gosh - thank you! I like to write :). I am lucky to have a cheering section that keeps me going in the grit department. I am quite nervous about the hearing decline and wonky head - but not feeling alone and having positive people to chat with here makes everything worlds easier! So thank you for your support, too! Keep fighting the good fight (ha!), and I am really hoping all is aces at your next ophthalmologist appointment :).
Jessica
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Woot! Month 5 post-CK passed by fairly uneventfully. As I mentioned in my last update, there were some eyelid and under eye twitches, as well as some numbness at and around the temple during month 4. All of that was not there before CK and continued through about half of the past month. And then they went away. Occasionally I’ll get what feels like a flicker of the nerve in my lower lip - but it’s not something I can see in the mirror.
As far as I can tell (and have read here on the forum) symptoms are cyclical, waxing and waning as they please. I’ve had quiet periods before - but here’s hoping this one is here to stay! All in all, I feel pretty darn good. I currently have the same symptoms that prompted me to go to the doctor and subsequently get diagnosed: constant tinnitus, a little ear fullness and a little tingling in the corner of my mouth. The ear fullness comes and goes - and seems to have been reduced as of late --- hurray!
The hearing loss we discovered during diagnosis is, of course, still there. I think it’s reduced since then, but I can still use the phone on my AN ear, as well as hear sound in my headphones. For sure certain tones have totally dropped off the radar in that ear, and as far as headphones go I wish I could turn up the volume on one side and not the other. As far as the hearing of voices on that side, it's not as crystal clear as the other, but it functions. Less so in a noisy environment though. There is some distortion with certain pitches and tones, but not all. I suppose I’ll know exactly how much the hearing has been affected thus far when I get the 6 month audiogram in October along with my MRI.
Fingers crossed the next time I update is post-MRI and audiogram in October!
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Hello Gtmochi,
Sounds like you are doing just fine after five months. As each month goes by things seem to be okay with you and kind of consistent. The hearing issue is a real bummer, and I don't think there will be improvement as time goes on. It is great that you can still use a cell phone in the AN ear, that is amazing. I have not been able to do that for several years, so you are fortunate. I know you have to take another MRI next month, mine is for November. That is because I had one taken one month after CK, so the six month mark hits in November for me. Anxiety prone issue, but here's hoping that all is well. Stay strong and keep riding.
Gary
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Hi Jessica,
It's great news!!, so glad things are tracking well...your positive attitude is your best ally!
the hearing loss for sure is a tricky one to navigate, it was a big adjustment for me too, but at overall is usually manageable.
totally agree: "symptoms are cyclical, waxing and waning as they please" : lets vote for more waning :).
I've got my fingers crossed for your MRI & Audio coming up.
Stella
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Hi Gary,
You are right - it’s been pretty consistent so far. I’ve had bobbles and bumps, but for better or for worse I try hard not to focus too much on those.
I agree about the hearing getting better -- that’s definitely not happening. I am lucky I can still hear the phone on that side, but it’s for sure not perfect. When it comes to my upcoming MRI and audiogram, the worry is so real. I am trying to prepare myself for the inevitable, reduced hearing report (relative to my initial audiogram) as well as what may be revealed by the MRI. But more than anything I just want to get it over with and know what is happening to the dang thing instead of torturing myself with scenarios good, alarming, and everywhere in between. Thank goodness for horses - they keep me centered like nothing else! We are fortunate to be able to ride.
It sounds like you are traveling a similar road - ups and downs, but all things considered, a middling one. Here’s hoping things take an upward turn from here!
Jessica
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Hi Stella,
I feel a bit awkward with my uneventful news, to be honest! So many others at this point have had major difficulties. Depending on the day, I either count myself lucky or begin to fret about the other shoe dropping.
The hearing loss for sure is a big source of anxiety, but I have begun to realize that some of that is about grieving its decline. At the outset of this journey, doctors advocating surgery (while also telling me I was a candidate for either) would tell me something along the lines of, “if you are thinking surgery will kill your hearing and CK will save it, you are wrong and will lose it either way.” I would answer fiercely, “If hearing is the price to pay for a successfully radiated AN, that’s a fair trade.” I realize successful treatment and hearing loss are not mutually inclusive, but it was a deal I made with myself at that time. The reality, of course, is that I am sad, angry at the unfairness, and scared of the inevitability. I can do nothing but wait and see how things develop, both with regards to my hearing and what will be revealed by the MRI. I am preaching to the choir, of course! Every AN patient knows what this is like.
That said, it’s reassuring and calming to hear from someone on the other side (like you and Gary) that, though a big adjustment, it’s pretty manageable. And going to be ok. Different, but ok.
I am hoping and wishing for more waning for the both of us! Thank you for the positive thoughts!
Jessica
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For my 6 month MRI and audiogram, I decided I wanted to go back to Stanford, so off we went Monday morning. That afternoon I had my hearing test, in which I learned that my word recognition is at 88% (it was 100% in February). I knew it had declined since my initial testing, and I feel that much or all of the reduction occurred before CK. I remember many moments in March and April in which I became more aware of a hearing loss - mostly when conversation and ambient noise collided. Since CK, I think it’s stayed about the same, or, if it has reduced, it has not been much in the past 6 months. Either way, I was encouraged to get a hearing aid, so I’ll be working on that in short order.
Next was the MRI, about which I met with Dr. Chang and Dr. Hancock on Tuesday. My AN shows no change in size, and a good amount of necrosis in the middle. In many views it seemed 3/4 black. I understand this can change, and it is not indicative of future outcome, but it was nice to see. Both doctors felt things look good and that I was right on track (Dr. Chang said that necrosis is common), which is all we can ask for at this stage.
I asked about contrast next time, and it was explained to me that I can certainly elect not to have contrast, as my AN is large enough to be measured without. However, the doctors can’t see what is going on inside the AN without contrast. So, I plan on sticking with the contrast for now. I want to be able to observe what's happening inside this thing - I know it can evolve as time passes.
Another thing we talked about with the doctors was swelling. My AN has stayed the same size, however, Dr. Chang told me that if a patient has swelling (not everyone does), it generally occurs within the first 18 months. So that could still happen for me. He also mentioned that of those patients that do have swelling, many don’t even notice.
So that’s that. I am cautiously optimistic, and happy to be on track!
As far as current symptoms and such, things continue as they have been — I can work, exercise, and socialize pretty much as I have been. A couple adjustments for any hearing issues (such as keeping my good ear close to the conversation!) but by and large, it’s business as usual for me. And for that I am deeply grateful.
Here’s hoping that my journey to the next milestone in April continues much the same!
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Great news Jessica! Thanks for keeping us in the loop. Too often those with good outcomes drop off the forum, so updates are always appreciated. I hope things continue to go this course with lots of necrosis, no swelling and hopefully some tumor shrinkage very soon.
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Great news Jessica!
I'm really glad you are tracking well... these frequent but necessary milestone checks can be stress inducing, but it sounds like your optimism prevails!! The hearing loss is a challenge to navigate but it's amazing how in our bodies and in our lives can make adjustments to navigate a positive path forward. a hearing aid can certainly assist -- another new path to navigate -- but well worth it!
be well, from your friend south of the equator :)
Stella
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@notaclone13:
Thank you for the cheers! I truly hope things continue as you have said! This forum was such a help to me when first diagnosed and then while navigating treatment choices - I plan to pay it forward and update as I get carried along on this journey :).
@SP
Thank you so much, Stella! These check ups certainly are stressful - I surprised myself with how tense I became in the days leading up…and during. I barely ate!! Which is saying something, because usually nothing comes between me and a meal ;D. Thank you for the words about the hearing loss. It’s really nice to be reminded that it’ll all be fine in the end - even though I am optimistic, sometimes it’s hard work. Which is exactly why it’s lovely to read a reassuring message from my friend south of the equator :) !
Hope you’re well! Sending you positive vibes from LA!
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Hi,
I just wanted to add that your posts are helpful, especially for those of us that may need a radiologic intervention in the future. And your positive outcomes thus far are encouraging. Thank you for posting long after you have completed treatment. My next MRI is next Monday and for the past 3.25 years they have been without contrast, due to the possible damage Gd can have on my kidneys. During that time the AN has doubled (as of April 2018) though still considered relatively small (13mm). Would you please explain what Dr. Chang meant that you can not see what is going on inside the AN without contrast? My understanding of the reason for using Gd is to brighten the tumor so that it is easier to see. My own observation is that is exactly what it does on the image. On the other hand, there doesn't seem to be any built-in transparency on a Gd image to detect anything within the tumor. What am I missing?
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These tumors are very vascular. After a radiation treatment there is damage to this vascular network. The damage (tumor death) can be monitored by changes shown in the contrast dye on the MRI's. As the blood vessels collapse the contrast dye doesn't flow as well through the tumor anymore. That's not saying every MRI would need dye but, after treatment using the dye periodically helps the doc see how the treatment is progressing.
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Hi Freelander!
I am glad these posts are helpful. Rupert is totally right! My doctors were saying the contrast is important in context of CK or any radiation treatment. Using it post-treatment reveals if the necrosis is increasing, decreasing, or has evolved into a dead/stopped tumor. I have read that when it is dead/stopped it can turn white again - a different sort of white, I expect, then a tumor that is still enhancing (I believe that is the word). So, as Rupert stated, the contrast is helpful in monitoring the radiation's effect on the tumor post-radiation :).
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Rupert and Gtmochi, your responses about the vascular system within the tumor being destroyed, hence, less flow and signal changes from the contrast MRI, sound reasonable. At the same time, if the size of the tumor post-treatment remains the same or regresses, both of which can be detected without Gd, that may be sufficient evidence of tumor necrosis. If a contrast MRI showed no discernable brightness or color change in the treated tumor, and no tumor growth, I wonder that the expert recommendation would be. Hopefully, one safely crosses that bridge if encountered. In my personal situation, the less Gd in my body the better. Thanks for answering the question, and continue to give us the mid term post-treatment updates.
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The main objective of radiation treatment is to stop the AN from growing. If it actually shrinks the tumor, all the better. While seeing necrosis after radiation may be somewhat reassuring, it does not necessarily guarantee there won’t be future growth. I recall seeing at least one example on this forum where a tumor that showed a dark center after radiation ended up growing again. The radiation oncologists want the contrast agent no doubt to see how accurate the procedure has been at targeting the tumor. If they see a darkening, they know the radiation has hit the target and that is always a good thing to know. But in the long run, the only true indication that the radiation has been effective is that the tumor ceases to grow. That can be determined without contrast and in cases where kidney health is an issue, no doctor would argue against skipping the Gd.
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Hi Gtmochi,
I am really happy for you that the latest MRI results are positive and show necrosis of the tumor. You cannot ask for a better doctor appointment. Your reduction in hearing is a bummer, although you are more fortunate than most of us with 80% word recognition. Protect what you have left. The contrast issue is a real problem, so each of us has to find our direction and go with it. Since it is so soon post Cyber Knife, it seems to make sense to agree with the doctors and take MRI's with contrast. Maybe in the future as time goes on, contrast can be eliminated from the MRI's. So far so good Jessica.
Gary
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Rupert and Gtmochi, your responses about the vascular system within the tumor being destroyed, hence, less flow and signal changes from the contrast MRI, sound reasonable. At the same time, if the size of the tumor post-treatment remains the same or regresses, both of which can be detected without Gd, that may be sufficient evidence of tumor necrosis. If a contrast MRI showed no discernable brightness or color change in the treated tumor, and no tumor growth, I wonder that the expert recommendation would be. Hopefully, one safely crosses that bridge if encountered. In my personal situation, the less Gd in my body the better. Thanks for answering the question, and continue to give us the mid term post-treatment updates.
I think it's important to remember that surgeons like Dr. Chang are not just looking at some dark spots and measurements. They have immense training and experience and their analysis is highly complicated. How many people get to look at every slice of their MRI on a 6 foot screen? There's just more to it than what we see with our untrained eyes. I think most people handle the dye well and don't have problems. of course if you have kidney issues that is a special case and something that should be discussed at length with you doctors.
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@Gary - You are are right - it's important to stay focused on the positive! Everything being on track as far as the doctors are concerned is a very good thing. The hearing loss for sure is a drag, but somehow the test results put my mind at ease. Knowing is SO much better than not knowing and worrying and guessing what is happening! I am thinking that for now, in my personal case, the risk contrast presents is worth knowing what is happening within the AN. Plus, it is what the doctors preferred for the time being. I am hoping that after a while the AN is stabilized/frozen and contrast is something that can be set aside. :)
@Rupert - Yes! While we might have some knowledge, the doctors have spent a good part of their lives studying, operating, and working with these ANs - the perceive much more going on in an MRI than I ever could! :)
@notaclone - It's true that necrosis does not always indicate a positive outcome, however, it is reassuring because, as you said, it is evidence of the radiation hitting its mark. Also, according to Dr. Chang, necrosis is fairly common. This is one case where I am happy to track with the majority! Additionally, I have read that the necrosis can evolve to appear white on the MRI to indicate that the AN is no longer enhancing. If this occurs in the future, I would like that to be evidenced in the MRI. So in mu case, I'll stick to contrast for now, Of course it makes complete sense that in Freelander or anyone else at risk to the dye should not use contrast! :)
I will for sure keep posting updates. When I began posting initially, I felt once a month for the first year would be helpful. I was so grateful to others before me for having done the same!
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It's been just over 7 months since CyberKnife...and as far as symptoms go, things are pretty quiet. Tinnitus is still there (constant) but generally sticks to its usual noise level, which is usually pretty ignorable. Still some face sensation, but less than it has been, and it seems to restrict itself to the area near the bottom right corner of my face near the mouth or under the tongue. Sometimes it's not even noticeable. I have not had any dizziness (that I can tell) or fatigue (that I can attribute to the AN), and hearing seems about the same as it was when I was tested a month ago. Also, I have not really had any twitching - I hope I've left that well behind me! In any event, things at this time are about the same or slightly better!
If things continue as they have been, I'll wait a little longer between posts to update. Perhaps every two months instead of every month. At least until my 1 year MRI in April :).
Wishing everyone good health and happy holidays,
Jessica
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This is great news Jessica. Please do keep on posting because it is always good to hear about people that are doing well after radiosurgery. I am happy to hear that you have not had any issues with dizziness and fatigue. Wishing you and yours a healthy and happy Holiday season.
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Hi Gtmochi,
It sounds like you are doing fine and I am very happy for you. The symptoms you describe are tolerable, just have to ignore them and keep on moving forward. Stay healthy, happy and strong. As my doctor keeps telling me, "Just go live your life."
Gary
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Hi Jessica,
It's good to hear from you and that you are doing well.
Your descriptions of "ignorable" and "not even noticeable" are joyous words to describe any AN symptoms.
best of health and happiness with each forward step,
Stella :)
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Hi everyone! Thank you all for your positivity and support! I am sorry I did not reply sooner - you know how the holidays are ;-). I so appreciate your reassurance and support, and count myself very lucky to have come across this forum and connected with such kind people.
Notaclone13, I will definitely keep posting! A happy holiday season to you and yours as well :)
Gary, the advice your doctor gives you is so great, and important to remember.
Stella, You are very right! They are quite joyous indeed :).
Wishing you all lots of health and happiness as the holiday season is winding up and the year is winding down :).
Jessica
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9 months have gone by since CyberKnife at Stanford, and things appear to be holding steady.
Tinnitus is still around, but currently seems to be less. It went through a period in which it became more insistent, but now, to my relief, it has died down a bit. I’d say the tinnitus is, relatively speaking, the most bothersome of my symptoms. It also happens to be what brought me to the ENT in the first place!
There’s still some facial tingling - it’s mostly just in the right corner of my mouth, a little on my right tongue and occasionally at my temple/hairline adjacent to my R ear. Sometimes it’s not even there. I love when it is not there.
There is intermittent ear fullness. Sometimes I'm aware of it, sometimes I'm not. Either I am used to it, or it's actually improving. No way to know for sure!
The hearing loss seems to be the same from when I was last tested. That’s been not amazing, but I work from home, and so do not have to deal with the challenges of a noisy workplace that many face. Mostly it’s just irritating. When I do run into issues, I tell whomever I am interacting with that my right ear is not great at doing its job, and that if I look clueless or don’t respond, chances are I did not catch what was said. When I go out, I try to position myself in the best spot, and if the ambient noise makes it hard to understand, I chat with those nearest to me. I’ve not yet got a hearing aid - but I plan to!
Thus far, I am truly fortunate to have not had any real balance or vertigo problems to speak of - I still ride horses 4-5x a week, go to the gym, do yoga to stretch at night. For Christmas, I got a Bosu ball. I get on that when my Apple Watch informs me that it is time to stand up, or on the phone - ha!
While this advice is not applicable for everyone - so many with AN’s are struck with awful balance issues - my two PT friends (one of which works with those with vestibular issues) told me it’s best to “lean in” when challenged. So, for example, if you feel a bit dizzy when you turn, do it again (carefully! With help if needed!). Basically make yourself do the uncomfortable - within safety and reason, of course. I’ve not needed vestibular therapy, but I think it would be huge for anyone with dizziness or balance issues. When I shattered my finger (twice in 6 months!) and then had 3 (!) surgeries, I went to PT. I could have found the exercises online, but being with a professional made me feel safer and in a program tailored to my specific issue. I had such PTSD about hurting my hand I was too scared to do anything with it, and it was quite reassuring to have someone guide me through exercises. I am very glad for those sessions, and that my insurance covered them.
The thing I have noticed about my symptoms overall is that they are capricious - receding so much and for such a long period that I take it as a sign things are going swimmingly. Then they come back to visit and I get a bit down, wondering if maybe the stupid thing is waking up. This despite evidence to the contrary - I’ve read growth and symptoms are not really linked. That worry is fleeting, though - the further out I get from CK, the more able I am to move on and keep living the dream (ha!).
That emotional aspect - the toll this whole process has taken - is perhaps the most difficult. I am not the same person I was before diagnosis - I (along with all of you) have been through, and are going through, something. Kind of like any traumatic event (job loss, divorce, what have you), it has left its mark. But also in positive ways - understanding and frame of reference when people around me find themselves dealing with a scary diagnosis enables me to be even more empathetic. I’ve always been a happy person, but I appreciate every single moment in my life more. The AN has also given me an injection of motivation. I find myself even more focused and fierce about achieving goals - I’ve been reminded that life is short. That I have been the lucky recipient of a non-deathly diagnosis, and that the outcome of its treatment thus far has been barely life-altering (so grateful for that, too). I do honor and mourn that I’ve got an AN. That it’s made me have weird face feelings and is taking my right hearing (here’s to hoping some sticks around for the duration), as well as something of an emotional burden in terms of the CK"s efficacy. All of that is not amazing, but man... am I grateful that last February 15 I wasn’t diagnosed with something so much worse. I am grateful to be able to look toward the future and know it unfurls before me with a story as yet unwritten.
My next MRI and hearing tests are scheduled for the end of April - I am looking forward to seeing what-all is happening in that noggin of mine. I am hoping and praying for continued positive results.
Once again, I seem to have written a novel. So, if you’ve made it this far, I apologize and thank you! I’ll update again in 2 months, and then of course after my 1 year MRI. Fingers crossed :).
Wishing health and positive outcomes to all!
Jessica
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Hi Jessica !
Yes I made to the end ;D. I think its inspiring and maybe (?) a bit cathartic to get thoughts and feelings out by writing. What you wrote resonates a lot with me on many levels. Thank you for sharing where you are at and for keeping the optimistic perspective on this journey. It reminds me to do the same when things get a bit tough.
I am hoping and praying with you for continued positive results in April and beyond.
moving forward with hope for the good things,
Stella
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Hi Jessica,
I also made it to the end of your post. Your words really ring true with the way I feel emotionally and physically. I know we are a week apart in our CK radiation experience, so our symptoms and anxieties are running parallel to each other. We hit the nine month mark together, and I am also grateful that things are going as well as they could for both of us. Just have to keep dealing with things as they come up, and give them time to fade away. Hopefully our tumors are also fading away. Be well,
Gary
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Hi Stella and Gary!
I am so impressed that you guys made it through my crazy long post ;D.
You are right about writing things out being cathartic, Stella. I hadn't realized I had so much to say when I set out to write that post - but out it came. Staying optimistic is not always easy - but on the less great days, knowing I am not the only one going through all of this is such a comfort. Thank you for always sharing your journey!
Gary, our symptoms definitely run parallel to each other, we are AN wingmen! You are right — dealing with things as they come and then letting them pass is exactly what we have to do. I have to work harder to remember that.
I am so glad I found this forum and made the connections I have! It has been such a huge help to have support from my AN friends :).
Wishing you both well!
Jessica
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It’s now just about 11 months post CK for me, and so far, so good!
Tinnitus, hearing loss, and face feelings are all pretty much the same. I still remain very lucky to not have any problems with balance or vertigo. Once or twice I’ve gotten a slight headache - but I can’t say for sure that the AN is to blame. It could be anything: allergies, stress, being tired, not drinking enough water, how dry it has been here in LA...in any event, the slight headache has away with some Tylenol/Advil, so I can’t complain.
The other day I finally went and saw a doctor about a hearing aid, and am really looking forward to trying one out. Not only because it will help with hearing, but while there I discovered that in some cases, the hearing aid can help make the tinnitus go away as it fills the space where the brain misses sound. My tinnitus is not that loud, but still, having it diminish would be a welcome relief.
It’s hard to believe that almost a year has passed since CyberKnife at Stanford, and that my 12 month MRI is just around the corner. I am both eager and anxious to know what is happening in my noggin. However, thus far I am feeling very well, staying active, and largely live my day to day life without really thinking about my AN.
After my MRI and doctor visits at Stanford at the end of April I’ll post an update.
Good health to all!
Jessica
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Good luck Jessica!!!! So glad to hear you are feeling well; it's the best feeling to just live life and not think about the AN that's hitching a ride...
thinking the best for you,
Stella
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Thank you, Stella!! It really IS the best feeling to move forward with little to no thought (mostly - sometimes it gets the better of me!) of my interloper. We give so much bandwidth to these suckers and they take their toll elsewhere. It's nice to just be. Anyway, here's to hoping that this season of relative content continues for both of us :).
Warmly,
Jessica
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Hi Jessica,
It's so good to hear you are doing well at 11 months post-CK. Thank you for continuing to post because it is always uplifting to hear that life can be somewhat normal after radiation treatment. It gives those of us still in W&W hope that should we need treatment in the future, there can be a good outcome. Hoping to hear that your 1 year MRI shows the best possible outcome.
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Thanks for sharing your journey with us. Now, nearly a year down the road, are you still feeling great? I hear you can get headaches. Also, how's your hearing on the AN side?
Blessings,
Donna
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Eleven months and counting Jessica. The time has totally cruised by so fast, it is amazing. The early months after CK are definitely hard because you just don't know what is gonna happen. But all is well and life goes on. Be well and best of luck on your next MRI.
Gary
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Hi Notaclone!
Yes! Life post CK can be totally normal! Thus far I have been so fortunate in that respect. I actually have felt a bit guilty at times about that.
When I was diagnosed, reading outcomes was so important to me - both the smooth and challenging. I promised myself that come what may (and especially if things went well), I’d update so that some other newly diagnosed or W&W person would have another first-hand account. Thank you so much for being so supportive!
Hi Alabamadonna!
Yes! Thus far I am doing great. I have not missed a day of work or doing any of the things I love (like riding horses) due to the AN.
Previous to CK, I rarely got headaches - maybe 1-3 times a year, and they were always so minor I didn't reach for the Advil. During the first couple weeks post-CK I had some weird pressure-y feelings (like when you gently squeeze an orange) that went away with Tylenol or Advil. After that, headaches did not present for me. But you are right - headaches can be caused by the AN for sure! I just am not sure about mine - one I had the day after having 2 glasses of Sangria >:D and a night at a noisy restaurant (so maybe the noise and me concentrating to hear conversation is the cause?) , and the other after a particularly dry, windy day spent outside.
Hearing seems to be the same. When tested last, I had 88% word recognition. I get tested at Stanford next month, but things seem about the same. At least, I don't find myself saying "what?" more often ;D.
Hi Gary!
YES! 11 months about c-o-u-n-t-i-n-g. They have really blown by! You are right - for most of us post CK, the first few months we are biting our nails, worrying about every sensation. But life stops for no one, so we are left with no choice but to stop fixating and jump right back into the fray, come what may. Then boom! 12 month MRI arrives. Best of luck with your MRI , too! I am looking forward to hearing good news :).
Wishing you all good health :)
Jessica
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It’s hard to believe that a year has passed since I underwent CyberKnife at Stanford. Back then, I was so scared and worried about all the symptoms I might encounter after treatment as well as my future outcome. I was fairly jumping out of my skin on the drive up to Stanford!
Now, all of a sudden, here I am on the other side.
I had my one year MRI, hearing test, and follow-up appointments with Drs. Chang and Hancock at Stanford the end of last week.
MRI Results:
When I met with Dr. Chang and Dr. Hancock, they both said my AN shrank! Additionally, it still had a fair amount of necrosis - but less of it than in October.
While meeting with Dr. Chang, he measured my October MRI versus my most recent. He said that in October, my AN measured approx. 27x27x29 and now in April it measures 25x23x25. Word.
When we went for my follow up in October, I was so relieved to learn the doctors were happy with my outcome thus far that I did not ask Dr. Chang to measure - he had told me no change in size, which was good enough for me! Now I see his measurements differ from what the radiologist reports have stated. I guess these things really do vary by the person doing the measuring! In any event, I am going to stick with Dr. Chang’s measurements, as he is the only constant - I don’t get the same radiologist every time.
Needless to say, I am so relieved and grateful. I realize there are years of check ups to go, but so far, so good :).
Hearing test: The tonal average (that little grid thing) has stayed the same. But my word recognition has gone down a little. I hadn’t even noticed! Nonetheless, I hope and pray my hearing keeps still. Along those lines, about 2 weeks ago I got a hearing aid! It is an Oticon (thank you, insurance!!). It is very small and hardly noticeable. I am still in the adjustment stage, but it is already a help -- especially in noisy environments.
Side note about the MRI: Due to my being late (buying a dress! HA!) and the Ativan not ordered, I decided to grit out the MRI sans Ativan. I was successful in that I didn’t leap screaming from the machine. But oh boy did I want to. So - for anyone out there wondering if the Ativan really helps, yes, yes it does. I will never, ever do that again. Ever.
Symptoms:
In my case, I have been a part of the majority of post-CK patients about which Drs. Chang and Hancock told me, which are those do not have an increase in symptoms that require medication or assistance of any kind.
I have not required medication of any kind (other than occasional Advil/Tylenol). I did have some little blips - but nothing lasted long or was life-affecting. I have been able to remain as active as ever. I am grateful to have had a fairly uneventful post-CK experience, and wish everyone reading the same.
Follow up: Dr. Chang said he usually does every 6 months in the first year, and then once a year after that (and then at some interval the time between MRIs becomes longer but to be honest I don’t remember!). So my next MRI will be April 2020. I have elected to do another hearing test in the fall with my audiologist here in LA - just to check on things, as there was a change in voice recognition.
I will 100% share my results April next year. Having this forum to rely on for information and support is invaluable. Certainly I will continue to avail myself of everyone's information and experience, as well as offer my own. So if I can help in any way, please DM/post any time :).
Wishing everyone well,
Jessica
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Hi Jessica,
Thanks for posting. All of us that have followed you on your Cyberknife journey are delighted at your good outcome. It is always uplifting to hear that the process can work well with a minimum of side-effects. I hope you retain your hearing and continue to have smooth sailing from this point onward.
M.A.
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Hi Jessica,
Well done-- you got though this particularly stressful time of testing !! Your news is so positive; it's so great that 12 months has passed and you get through your day without thinking about this AN -- shrinking away !! I'm glad that you're feeling so well and staying active ; it sounds like you have a positive self routine going. Welcome to the hearing aid club; it took me a few weeks to adjust, I hope you're benefits from having it continue.
take good care and wishing you ongoing positivity ;D,
Stella
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Wonderful news Gtmochi, I am really happy for you. You can go live your life and not worry about that pesky little tumor. Nothing much you can do about the hearing loss, hopefully it does not get worse as time goes on. Hearing aids are a wonderful device, they really help make things more normal for many of us. Be well Jessica and stay strong.
Gary
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Thank you, SP, Gary, and Notaclone for your cheers, well wishes, and positive vibes. It really means a lot! I am very grateful for the support I found on this forum.
SP and Gary, thanks for your warm welcome to the hearing aid club. The adjustment really does take time - for some reason I expected it to be like putting on a new pair of glasses 8). But despite not running on all cylinders yet, it is really making a difference. I was very much inspired by your wonderful posts - they gave me the reassurance I needed to stop being a big baby and just go and get one.
SP, I may not have mentioned before, but your account of your own AN experience also gave me courage regarding CK. I am very grateful that you shared your journey here. When I was diagnosed and hysterical because I thought I would not have any choices, your posts gave me hope and encouraged me to consult a variety of doctors. So thank you very, very much for that.
Wishing you all the very best health and sunny spring days (well, autumn for you, SP ;D)!
Jessica
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Hi Jessica,
Thank you for such your heartfelt message. I am more than glad that the story of my (also highly stressful) journey was helpful in any way. You have great resilience and one step at a time is the only way right? :).
I also thought i would put the hearing aid on and off i go -- but it was not that way -- I needed around 4 weekly adjustments to get it close to right --- it's worth the improvement to social situations and most people don't even notice its there.
take good care in sunny LA (still sunny but getting colder in Syd),
Stella
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Hello
I just started on the forum and was drawn to your experience because of Stanford. I hope you’re feeling great now so many months later.
I was diagnosed in 2017 and chose to watching for a year before my 2nd MRI. Sadly it grew and so did my hearing loss and balance issues. Dr. recommended treatment very soon. I debated the micro surgery for about 1 day and knew I couldn’t handle it.
Yesterday I consulted the Neurosurgeon about CK and it was truly the best day in months. He painted a very positive picture for preserving the beautiful little shred of hearing I have in my left ear and said there’s very little chance of facial paralysis! He didn’t think my balance would improve though which I’m learning in PT to cope with.
I’m curious why you had I believe 3 CK treatments as UCSF is only saying I need one, and a follow up with anMRI in a year. Was your AN considered large?
Also I have wanted to seek a second opinion at Stanford believing they are the “state of the art” for the procedure. My UCSF Dr. even recommended Dr. Chang! Do you have any thoughts you can add to your Stanford treatment? I sure would appreciate any knowledge you can share.
Bev
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Hi there, Bev!
I am so sorry I've been slow to respond - I didn't get notified that you had commented!
So far, I am feeling pretty great. Nothing new to speak of on the symptom front - my face tingling comes and goes but I've accepted it as a nuisance, as it hasn't gotten worse. My tinnitus has been pretty low-key too. At least it hasn't spiked at all! Hearing...sometimes I trip myself out, thinking it has gotten worse. Then I decide it's the same. I was planning on going for a hearing test in October (I am not due till my next MRI in April) but it's way easier to move on when you are not constantly worrying about the next test, so I might ditch the October hearing test plan :).
I am also not a fan of surgery - previous to treatment, the very thought literally made me faint and sick. When I decided to move forward with CK, I could suddenly breath again. So I know it was the right choice for me. It's interesting that your doctor didn't think you'd get your balance back - I've always thought the PT is what helped your brain rely on the vestibular nerve on the non-AN side! Either way, I am glad to learn you are learning to cope. I hope you have it all sorted out in no time!
I did have 3 CK treatments - when meeting with Dr. Chang, the notion of 1 never came up. I can't remember with 100% clarity, but I believe Dr. Chang felt that spreading out the treatments reduces nerve irritation? I could be totally incorrect there, though. I also believe that how many treatment days has something to do with the size of the AN - I am not sure what the over and under is there, though.
It's always good to get a few opinions. As for thoughts I can offer regarding my treatment at Stanford...hmm. Overall it was smooth, professional, and really painless. Other than the emotional angst, of course. I found Dr. Chang and Dr. Hancock, their nurses and technicians to be really great - willing to answer questions and quite kind. I am really glad I brought music for the treatment, though. They choices they had available were soothing (Japanese chimes and jazz which I normally enjoy), but made me really weepy. I was already feeling like I wanted to cry, and that stuff just made it worse! Listening to upbeat music like Beck and Phoenix made me feel less existential dread and the whole treatment seem to go faster. Post-treatment I was quite on edge, worried that any minute something bad could happen. Were I to go back in time, I might ask the doctors a little more about what to expect after in terns of sensations. But honestly, I think I would have been on edge no matter their answers. So I settled for checking in with nurses periodically. Over time, I settled down :).
I am happy to answer any questions about my experience -- so if you have any, fire away!
Best,
Jessica
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Jessica,
I just read this entire thread. I so appreciate all of your comments. I am early in my journey but so much of whim going through is the same as what you describe. The size of my AN is just a bit smaller. I have very slight 10% hearing loss. The though surgery frightens me. My first official consult with doctors and they recommended surgery. I really want to go see the team at Stanford for a second opinion. I really feel like CK is the path for me.
Did you contact them (Stanford) for an appointment or did you get a referral?
I don’t want this drag on any longer than necessary but I also do not want to feel pressured to make a decision that I don’t feel comfortable with.
Anyway, thank you for giving me hope that Cyberknife will work for me. I don’t know if it will or not but I’m hopeful.
Thanks
Alex
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Hi Alex,
I am so glad all my posts helped you in some way! Right now - the beginning of your journey - is the hardest. I swear! The unknown is pretty scary when it comes to our health and future.
First, know that no matter what you choose, you are making the right choice for you. If you're like me, you spent hours (HOURS!) combing through and poring over posts on this forum. And one common theme you'll find is that most have to evaluate their choices, parse truth from bias, and decide for themselves.
Speak with doctors who focus on surgery, doctors who focus on both, and those that focus on CK/GK. Do not speak only with one doctor or hospital group. The recommendations you get will likely vary with the disciplines practiced. Heck, the size they measure your AN to be will vary to a degree, too! They all have their own methods. I know you don't want to let this drag on -- neither did I! But it's worth speaking to a few doctors. It'll wind up giving you peace of mind regarding how to proceed, and the knowledge you gather will give you confidence. My process didn't take long. I was diagnosed on February 13, and I think I scheduled my CK by mid-March.
What I am trying to say is, for sure speak to Dr. Chang or someone similar. I didn't get a referral for all but one of the doctors with whom I consulted. I just researched and contacted them on my own. Many consult via phone - you send them your MRI and that's that. Back when I reached out to Dr. Chang (which I did through his email that I found on the Stanford site somewhere) he emailed me right back! I sent him my AN size, and he got back to me with his success rates for that size AN.
From there, you can book a consult - he'll only consult in person. Or you can book a consult followed by CK. Which is what I did! I figured if something happened that alarmed me or backed me off of CK, I'd cancel and go home. But I met Dr. Chang and Dr. Hancock and I was a-ok with them and their data!
Things will be ok, Alex. One thing I repeated to myself over and over during the beginning was "this time next year, this will have passed." and it did. And I am ok. And you will be, too!
Please feel free to DM or message me any time. I am also more than happy to chat on the phone!
Warmly,
Jessica
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Hi Jessica,
Thank you so much for posting your CK experience. It has been so helpful for people like myself who just underwent radiation therapy. I had Gamma Knife in NY at Columbia - Gamma Knife is the technology employed by doctors here, but I have heard that treatment outcomes are fairly similar for either method CK or GK. I am unfortunately in the rare group that has had surgery, regrowth, and now radiation. When i was first diagnosed in may 2018 (at 36 weeks pregnant!) measurements were around 3cm and I was told I was not a great candidate for radiation. I went ahead with microsurgery 5 weeks post partum and had a bit of a rocky aftermath , but overall was fine. Lost hearing in my right ear, but was able to walk unassisted 10 days post surgery. And back to my normal working out 3 months post. 1.5 year later, my symptoms increased (facial numbness and severe dry eye), so i had an unscheduled MRI, revealing rapid growth from my previous MRI, and 2.5cm in (2.1x2.5x1.7) measurement. This time my doctor told me I was a candidate for radiation, and it would be the better approach rather than another surgery (i presume this is in order to save my facial nerve). I had gamma knife just about 5 months ago, and have experienced a whole host of symptoms. I was on decadron for 10 days about 1 month after due to extreme light headedness, and radiating tingliness, as well as overwhelming fatigue. The steroids helped, and 2 months went by where I was totally fine. Walking 6-7 miles daily, and just trying to manage the best I could, although with very severe anxiety. At exactly the 4 month mark, i developed a facial twitch, most cumbersome in my upper eyelid. It's been 3 weeks and its driving me nuts! the lip, eyebrow and cheek is not as pronounced, but the eye is very irritating. I took 2 rounds of medrol dosepack, and am taking Gabapentin 600mg daily (2x a day). Nothing really seems to be helping, and I am wondering how long yours lasted? Wondering if I should be pursuing any botox type treatments etc which I have heard can help or just try to wait it out till after scan. It is reassuring to read your twitch was transient and not permanent. I am 6 weeks away from my 6 month post GK checkup, and I am very anxious and nervous about the initial results. But it was helpful to read you had a similar sized tumor and have had great success. Many thanks for chronicling your journey, and I will be sure to pay it forward and chronicle mine post this 1st scan.
very best,
Sara
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Wow-- 5 years went by fast and slow. It's been a long time since I updated last!
This last MRI showed that my AN was stable and had even gotten smaller!
In April 2018, when I had CK at Stanford, my AN measured 2.5 x 2.5 x 2.6.
As of September 2023, it measures 19.9 x 23.3 x 23.6
So now I don't get a scan for three years! I can hardly believe it.
Previous to my appointment, I was 100% convinced it had grown. While I didn't experience any new symptoms, such as dizziness or imbalance, my facial feelings had become more intense and regular. My right under-eye had started twitching sporadically (maybe once every few weeks). I was sure I felt a weird ear sensation.
But I was dead wrong. I cannot stress enough how positive I was that Dr. Chang would give me bad news. I told my husband I felt it in my bones!! Wrong, girl.
So, if anyone out there is in the same spot -- take heart. Experiencing an uptick in existing symptoms does not necessarily mean your AN has grown.
Below are all the measurements from treatment to my most recent. I'm sharing because I know that information was so helpful to me when I was deciding what to do or experiencing weird feelings and having anxiety about my dang AN.
2/2018 (diagnosis) 2.5 x 2.2 x 1.8
4/2018 (at treatment): 2.3 x 2.5 x 2.5
10/2018: 2.5 x 2.6
4/26/2019: 23 x 25
10/2019: 2.5 x 2.7
4/30/2020: 2.5 x 27
10/8/20: 2.3 x 2.7
3/18/22: 2.2 x 24
9/2022: 19.9 x 23.6
As you can see, there was a period in which one of the measurements -- the medial-- seemed to get a little bigger. Nonetheless, Dr. Chang and Dr. Hancock believed my AN was stable, but it was something they were watching. So that was fun to deal with. I did a lot of meditating and trying not to think about it! Also, you'll see there's definitely a spread in the measurements -- that was, of course, during the worst of COVID, and I got my MRIs at home instead of in Palo Alto. Sometimes (I'm told) the head placement and machine make it hard to compare apples to apples - I think that may be part of the thought process behind the margin of error as far as regrowth goes.
I had a hearing test in October, and it's remained the same as it was for my last two tests. At first, I had a steep decline, but now it seems to have leveled off. My hearing aid is a help, and I feel very fortunate to have hearing in my AN ear. Certainly, that could change, but I will enjoy it while I can!
I am still riding horses 4-5 times a week, lifting weights, and doing everything I like to do. I feel really good and very grateful to have a positive outcome.
So if whoever is reading this is me five years ago, bleary-eyed at 3 a.m., obsessively mining this forum and the FB page, it will be okay. Or at least your worries will be different from this exact moment. You'll be on the other side of whatever dragon you're facing now. It might be a new dragon, or it might be rainbows and unicorns. But at least you won't be where you are right now.
That was something I'd tell myself all the time. I'd say to myself, 'In six months, this period of time will be behind you. You might not be where you want to be, but you won't be here, freaking out about what to do." My little mantra changed with the situation, but it helped me to think that whatever anxiety I was experiencing would soon pass. Maybe it will be replaced by another thing to worry about, but at least it wouldn't be the same dang thing.
This is much longer than I intended, but there you have it.
I wanted to share my positive story and maybe make someone out there feel more at ease. I'll check back in three years at my net MRI!
Until then, good fortune and health to everyone!
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Thanks for sharing. I am three weeks post CK and feel great. My hearing is worse but the docs said it would get batter over time.
Thank you for confirming.
Dan
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Hi Jessica!!
It's great to hear from you and thank you for sharing your latest news, it was really heartening to read -- it's wonderful you are doing well !
It's definitely great not to have the worry of an MRI for 3 years :D
my best,
Stella
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So happy to hear your news! My own uptick of symptoms turned out to be TMJ - having to use a night splint which I dont like at all. My AN also shrank a bit more with March MRI this year- but then I got Covid so I do feel a bit anxious if that made a difference- wont know tho till next year. Your good news gives us all hope!
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Hi Stella!
Thank you! And it was so wonderful to read your last update ( better late than never!) and it's so great to hear you're doing so well. I am looking forward to no MRIs for a while, that's for sure!
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Hi, Michelle!
Thank you! You know, my audiologist suggested the same thing - that TMJ could be to blame. I have a night guard/splint (I call it my bitey - lol) but maybe I'm working my jaw more these days. As for COVID, I've had it a few times (yay, me). The first was at the beginning of the pandemic (pre-vaccine), and the other, I think, after I got the second booster. In between, I had an MRI, and it was one of those no-changers. I will say that while COVID was having its way with me, my tinnitus and facial feelings went up. All of this is to say -- I had a similar experience, but in the end, COVID didn't affect the growth/shrinking at all. I hope that sets your heart at ease a bit, especially since your AN has already gotten a bit smaller :)
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Hi, Dan!
That's great you're feeling so good post-CK. I hope your hearing does stabilize -- it's a bit scary at first as it declines, but we adjust :)