ANA Discussion Forum
Treatment Options => Radiation / Radiosurgery => Topic started by: Petrone on June 25, 2013, 08:44:55 pm
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Hi All,
I had shared with you that I had GK 10 weeks ago (tomorrow) for my 1.8 cm left side AN. Anyway, for the first 7-8 weeks, I had zero side-effects, but about 2-3 weeks ago I began noticing a fairly sharp decline in my AN side hearing (I'm guessing down to 30-40% from the 50-60% range on my last audio exam in October 2012). Also, more head-fullness, and more tinnitus the past few weeks. I've also been feeling more off-balance and wonky whenever I'm walking or jogging (nothing while seated/driving/sleeping [not at the same time, of course. ;)]).
I'm trying to be optimistic that these effects might be signs that the radiation is doing what it's supposed to be doing (perhaps, a bit sooner than expected) and the pressure (compression) on my hearing and balance nerves is causing these various side-effects. I called my MD to ask about getting a hearing-aid to help me with word recognition around the office, etc., but they want to wait - presumably because my hearing could get worse, before it gets any better.
I realize that we all respond differently to these procedures, but I am wondering if anyone has had similar experiences after GK or CK at the 8-10 week mark, or later? Was there improvement after the initial set-back? Any thoughts are appreciated.
Best regards,
Petrone
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This is the first day so I don't have any input but will keep you posted if I do. Keep us posted on your symptons
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Thanks DT,
It's nothing I can't handle, but I shared these experiences in the interest of the raising awareness about possible post-GK side-effects. We all respond differently to these procedures and you may not experience anything like what I have described above. But, if you do, don't be alarmed. It's all part of the healing process.
My best, Petrone
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Hi Petrone-
My post has details on my spasms; but I also get dizzy with elevated heart rate; consult your GK doc, as they may want to prescribe something. Since my facial spasms started, I have a weekly call with the PA in my doc's office to review my symptoms and how the last week went.
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its day three after GK and I could only report I have headaches and still sore. I was expecting headaches the prescription helps for now. I will continue to post.
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My SRS treatment was about 8 weeks ago and the tinnitus is louder, hearing in the AN ear down and I am so fatigued and having issues with short term memory and balance. I am getting hearing aids next week, the audiologist recommends Phonak which has the capability to do CROS if it becomes necessary.
Because I work as a medical professional, I will be taking a medical leave for the next few months to hopefully work on these issues.
Good luck to you!
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Hi Petrone-
I think my hearing had diminished on the AN side too; the tinnitus changes, sometimes more noticeable. Dr. Lunsford wants me to go back to ENT for audio test before I get the MRI, hearing was down to 40% prior to GK, so not expecting much. To me, if I cant hear with ear buds or the phone in that ear, its not useable. But it is what it is, I just don't dwell on what I cant do.
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Question for anyone who has complete SSD,
Does tinnitus continue when you lose ALL hearing on your AN side? (Maybe this is a bit like the age old question: if a tree falls in the forest, but there's no one there to hear it, does it make a sound? ;) ) My AN side hearing dropped after GK from about 50-60% down to 10-20%, but my tinnitus on that side is now that much louder. Since my AN side hearing is all-but-useless now, I'm wondering if the consolation of eventually going all the way down to 0% hearing on that side will be relief from the tinnitus?
Thanks,
Petrone
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Unfortunately, I have been told by my doctors that the tinnitus does not go away. :(
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Question for anyone who has complete SSD,
Does tinnitus continue when you lose ALL hearing on your AN side? (Maybe this is a bit like the age old question: if a tree falls in the forest, but there's no one there to hear it, does it make a sound? ;) ) My AN side hearing dropped after GK from about 50-60% down to 10-20%, but my tinnitus on that side is now that much louder. Since my AN side hearing is all-but-useless now, I'm wondering if the consolation of eventually going all the way down to 0% hearing on that side will be relief from the tinnitus?
Hi, Petrone ~
Unfortunately, no. Tinnitus (I think of it as static) is not directly related to hearing ability. Many people with diminished hearing suffer from some level of tinnitus. The precise origin of tinnitus is somewhat complicated (associated with the way the brain processes sound - or the lack of it). I regret to be the bearer of bad news but to the best of my knowledge there is no real 'cure'. If anyone discovers a cure, let me know because I'm SSD and also suffer with (a mild case of) tinnitus.
Jim
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Alas, as Jim notes, tinnitus is not related to the hearing but rather the brain. Because something's going on in the AN ear, the brain is wondering where the former sounds are--so it sends its out (the tinnitus) to communicate with. Once it's triggered, it's hard to turn it "off." Allegedly, the brain could decide it doesn't need to send out the signal (the tinnitus) any more and just stop it but it gets to decide that on its own. ???
Hang in there. White noise can help at night!
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My audiologist just programmed in tinnitus masking (white noise) into my hearing aids and I'm giving it a try for a few weeks. It may be a placebo effect, but I do think it helps a tiny bit. I can still hear the constant high pitched tinnitus, but I think the white noise is distracting my brain. The Phonak Audeo-Q has the capability for multiple programs so she did masking with hearing aid, and just masking (for at night). I'm still in my trial period, so will have her play around with any options that might help with the infernal, maddening ringing!
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Hi;
Thought to mention I agree with what you say, but, some of tinnitus originates in the cochlea if the auditory nerve is still intact. This is because the cochlea, fluid and ciliary hair is still functioning. That's how/why Auds measure sound impulse of Ota Acoustic Emissions.
Alas, as Jim notes, tinnitus is not related to the hearing but rather the brain. Because something's going on in the AN ear, the brain is wondering where the former sounds are--so it sends its out (the tinnitus) to communicate with. Once it's triggered, it's hard to turn it "off." Allegedly, the brain could decide it doesn't need to send out the signal (the tinnitus) any more and just stop it but it gets to decide that on its own. ???
Hang in there. White noise can help at night!
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Hi all,
I almost hesitate to post good news because I don't want to jinx myself, but after about 2 months of very bad post-GK side effects (stabbing headaches, nearly constant dizziness, shrieking/squealing tinnitus, daily facial twinges/tremors), I've been feeling much better the last 3-4 days. I know 3-4 days is not a long time to measure progress, but it feels almost like I've come through something.
Then, this afternoon I felt a deep, dull ache behind my ear for a minute or two, and then I felt a sensation deep inside my AN side ear canal, almost like something "popped." I had noticed less dizziness the last couple of days, but after that "pop" I felt almost no dizziness at all for the first time in about two months. That clearer feeling overall has continued into this evening. I went for a jog tonight and that brought back a little dizziness and also amped up the tinnitus, but all of my post-GK symptoms seem to get temporarily worse whenever I exert myself physically.
I hope this "popping" feeling I experienced today and this sudden feeling of clarity are signs of better things to come.
Petrone
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Its two months after GK and I'm feeling better. At times I get very fatigued but I'm fighting through it. Back at work and back at the gym. I already set up my 6 month MRI and follow up and hope for good news. Doing research and asking questions really helped shaped my decision in the procedure and I think I made the best one for me. I'll keep posting.
Dian
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Hello Dian and Petrone-
Glad to see you are doing well!
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Hi all,
I have a rather interesting Gamma Knife experience to share. On April 17, 2013, I had GK for a tumor that had shown recent growth to 1.8 cm. The first two months were uneventful. No symptoms or side effects. However, for most of June and July, I experienced severe dizziness and balance issues pretty much 24/7. I also had a two week period during which I had crushing headaches. I called them ice-pick headaches because of the sharp, stabbing pains that started just behind my ear and then shot through the nerves throughout the AN side of my head. (See earlier posts in this thread.) I contacted my radiologist about these symptoms in late June, and frankly, he was of little help. He offered to put me on steroids, but I declined because I just didn't like what I'd read about them. The radiologist did have me in for an impromptu MRI around the time my side effects were at their worst. He told me the results showed the tumor was responding, but I never saw that July MRI. Until today.
Fortunately, all of my post-GK side effects began to subside in early August. No more dizziness. No balance issues. No piercing headaches. My AN side hearing has declined to almost nothing now, but I can live with that. I have a Phonak-Cross, which I only use as needed for the occasional restaurant outing or movie.
Today I went in for my 6-month post-GK MRI. And the interesting thing is that I saw not only today’s MRI, but also for the very first time, the impromptu one taken at the 3-month peak of my GK side effects. Wow! Let me try to describe these images.
My tumor originally had the shape of a piece of candy corn. It appeared wide and flat on one end, tapering to a smaller narrower tip on the other end. But when I saw the 3-month MRI, it looked completely different. Instead of the smooth contours I was used to seeing, it was all splayed and puffy, like a piece of cooked popcorn. (Sorry about all the snack-food imagery) Also, the expansion filled into what had been a narrow space between the tumor and my brain stem. My MD measured its size then at about 2.2cm. He commented that this was a surprisingly rapid response to the radiation. He called me a “rapid responder,” briefly enjoying his pun with a slight grin. He also said that the swelling would explain the dizziness and severe headaches I had experienced during the summer months.
Onto the good news. Today’s MRI showed that my tumor has already returned to its normal candy corn shape. All of the splaying and swelling are completely gone. However, it is now slightly smaller than it was pre-GK at about 1.7cm. My MD was very encouraged by these results. So, by having had the impromptu MRI at 3 months post-GK, I may have had a rare glimpse at how these tumors might respond to radiation. Obviously, we’re all different and our tumors may all respond differently too. I also realize that this does not mean that my GK is a complete success, but I’m more hopeful now than I’ve been in a while.
Be well,
Petrone
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Petrone: Applause and here's to Hope and Faith! Glad you're doing better and thanks for providing us more insight into our possible experiences.
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Hi Petrone-I think I'm having a similar experience to yours. My GK was 5/7/13 and everything was fine until Aug.28-woke up with severe dizziness & vomiting-ended up in ER as I get easily dehydrated. My doc gave me a week of steroids & I got a little better but still very off balance & foggy headed...so he ordered an MRI & a VNG test. The Mri showed pretty significant swelling and the VNG showed 70% loss of vestibular function in my AN ear...so now I'm getting vestibular therapy & hoping my brain can be retrained to live with it...good days & bad days...
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Hang in there Jeanne! Be patient - this too will pass. My biggest fear during my worst post-GK side effects was that what I was experiencing was my "new normal," but now all of my post-GK side effects have subsided. I hope the side effects you're experiencing now will pass soon also. Peace, Petrone
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Petrone: Applause and here's to Hope and Faith! Glad you're doing better and thanks for providing us more insight into our possible experiences.
Thanks Patrick! I hope your facial spasms continue to subside too. You've handled these temporary setbacks with courage, aplomb, and a bit of humor, which always helps. Please keep us posted as you continue in your recovery and healing.
All the best, Petrone
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Hi Petr5one (and Patrick and Jeanne and Dian)-
As you know, I had my GK in January and spasms started two months later.
Dr. Lunsford, my local ENT and neurologist all said this would be temporary.
I believed them and my ordeal w/spasms has hopefully been put behind me. Since mid August, I had one mild spasm on Sept. 15th. No twitching, dizziness, or anything else.
Keep the faith, all will be well for us all!
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Wow - your symptoms sounded almost identical to mine! Good to hear that they eventually subsided.
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Hi ampeep,
Hang in there and take it one day at a time. Try not to be discouraged if you experience temporary setbacks (headaches, dizziness, fatigue, etc.) in the coming months. My biggest fear during 3-months of fairly severe post-GK side effects was that what I was experiencing might be my "new normal." Fortunately, all of my post-GK problems gradually subsided. My 1-year post-GK MRI earlier this month showed no growth. I'm completely back to my old self now and more determined than ever to live life to the fullest!
I wish you all the best! (PM me with any questions if I can help in any way.)
Petrone
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Hi Petrone,
You had side effects for 3 months? So far, it's been 1 day for me but it sure feels like a lot longer. I now know what you mean by ice-pick headaches!
Really appreciate your encouragement & sharing of your experiences. You're an inspiration & I will try to be like you. Good to that you're back to your old self and doing well after a year.
Thanks, Keith