ANA Discussion Forum
Post-Treatment => Post-Treatment => Topic started by: MinhVietNam on December 20, 2011, 12:49:16 am
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Hi everybody, in 2009 I was diagnosed right AN and had CK in October 2009 in my country. I recovered one year later that and my right ear still good (I can only hear on right side). But recently (five or four months ago) sometime I lost hearing in right ear (fluctuating hearing loss) so I met my Doctor and take MRI, the MRI show nothing in my right ear (the tumor seems disappeared). But it become worse now. I can only hear people say but can’t understand. I visit ETN and they told me that my acoustic nerve is damaged by CK that cause hearing loss. Have anyone get this problem like me? I’m very upset now. (My English is not good, sorry if I get any mistake).
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Nobody can help me? :(
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Hi there,
I've not had CK. I'm waiting and watching. However I have read that radiation can have a delayed reaction that can impact hearing. You might want to take a look that this thread. Tumbleweed had great success with his CK and he took a bunch of supplements to support his recovery.
http://www.anausa.org/smf/index.php?topic=16205.0
Hope this helps.
Best,
Lisa M
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Thank LisaM. I have read this topic and many other topics there. I find some great information but I really can't find anybody like me. However I hope I will be as lucky as all you.
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Though I'm not expert and certainly not a doctor, I know that swelling is a big issue with CK and other radiation treatments. I'm taking turmeric everyday which is a natural steroid of sorts. Is you doctor giving you steroids? If your hearing is going this is often what is prescribed It's tricky to get the turmeric to absorb into the body. Let me know if this is of interest and I'll PM you some more info.
Take Care.
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Ọh, I know turmeric is a very good natural medicine but i don't know it is a natural steroid of sorts. My doctor giving me a short course of steroid (dexamethason) but I know it has many side effects if keep use in a long period. So can you tell me how to use turmeric daily?
Thank you.
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Though I'm not expert and certainly not a doctor, I know that swelling is a big issue with CK and other radiation treatments.
Just an addendum to the comment Lisa has shared (thanks Lisa!) and no, I am no dr either but..... post-radiation edema/swelling can (not always, but can) occur and radiation teams monitor closely via patient-related (verbalized) post-treat symptom and MRI's to see if it is occurring. If yes, usually/easily controlable with steroids (ie: Decadron, Prednisone, Medrol Dosepak, etc) to help keep it from occurring/enhancing.
Personally, I ran into enhanced symptoms post-CK between 3-9 mos possibly due to post-CK edema..... I reported this to my CK team (the key for all post-radiation patients... keeping their teams up to date and not brushing off anything that may be going on)... they put me on short term steroids and then, all was fine.
I can now report, pushing 6 yrs later, for me.... all is well. As we note here all the time, "individual results may vary."
Hope this helps.
Phyl
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First, take the steroids now. They can hopefully get the inflammation down and restore your hearing. Have you tried acupuncture? I did a a 3 month treatment of acupuncture, 3 times a week with about 30 needles in me and with as much electricity as I could stand going into the needles. You need to find a very talented acupuncturist. I had two bouts of hearing loss last spring and my hearing came back and has been more stable since taking curcumin (concentrated turmeric) everyday. It's worth trying acupuncture, it certainly can't hurt.
Here's some info about how to get curcumin/turmeric into your body for maximum absorption:
BTW... if you want to get really serious about taking curcumin and reservatrol check out the 2 links below:
http://www.pdazzler.com/archives/1005
http://www.youtube.com/watch?v=SeU--wadrMY
This is from a site for cancer patients. It seems that both reservatrol and curcumin have a hard time getting absorbed into the system and binding the curcumin/reservatrol to lecithin apparently makes a huge difference.
Here is a link to the entire thread I originally posted in:
http://www.anausa.org/smf/index.php?topic=16106.msg979734509#msg979734509
Here is some more info about turmeric and treatment for cancer patients, again describing how it is best absorbed by the body so it can do its work:
http://margaret.healthblogs.org/tag/turmeric/
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Thank ppearl214. I was treated with CK 25 months ago, in the period of first 4 months I also underwent some side effects of swelling but things gradually got better, my hearing returned. I thought CK worked right. But 4 months recently I loss hearing again, my MRI test last month show no sign of the tumor (I don’t know why because I know the AN tumor usually stable or slight reduce it’s size after treat with CK after 2 years ???) and some doctors told me that my acoustic nerve is damaged by CK that cause hearing loss, may be I will be permanent deafness! :(. I am so worry and sad. I think you are right: "individual results may vary" and I will keep update my status..
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LisaM, thanks you a lot. I am taking steroids now but it seems no effect. Acupuncture may be a good idea for me, I haven’t ever tried it and my wife also think me should try so I will find a good acupuncturist as soon as possible. I have read all the pages that you send to me, it’s petty hard for me to make Combination Liposomal now so at lest I will draught a cup of mixed powder turmeric with honey everyday. I believe it will help me.
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yes, try the acupuncture as soon as possible... Turmeric used in cooking is very different from curcumin. Go to a health food store and get curcumin capsules. You need to ingest curcumin with a fat (oil, butter, etc. ) and black pepper and it needs to be heated. I eat mine in oatmeal every morning with an egg. I know of a woman from this forum who lost her hearing prior to surgery for 3 months and then it returned just before her surgery. Good luck to you. I sincerely hope your hearing returns.
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How many fractions were you treated with?
"I was diagnosed with right AN 25 months ago (my tumor's volume is 757,38 mm3) and be treated with CK (1800/2307.89 cGy; Collimator 03 mm)"
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I was treated with 4 fractions on 4 consecutive days. My doctor said he wanted 4 fractions instead 3 fractions to got better hearing preserve.
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I was treated with 4 fractions on 4 consecutive days. My doctor said he wanted 4 fractions instead 3 fractions to got better hearing preserve.
Was told the same by my CK team. I had 5 fractions and had 96% speech recognition at time of treatment. Due to this being told to me... and performed as such, to this day (pushing 6 yrs later), I still have 96% speech recognition as of my last hearing test. As we all know around here, "individual results may vary" but from talking to others, it has become a "standard" that fractionation of treatment for those that do have a high % of hearing levels is recommended in the hopes of saving serviceable hearing.
Phyl
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Hi LisaM, ppearl214, PaulW ... everyone else. I am very glad now. My hearing has gradually came back to me for more than one week. Althought my balance still isn't good but my world is really brighter sice hearing inproved.
I still eat curcumin, pratice yoga and acupuncture. I also stop use Steroid for a week because I don't want abuse this drug. After 3 months lost hearing, now any kind of sound that I can hear all make me feel so happy.
Thank LisaM, ppearl214, PaulW all you helped me, hope that I will get more improvement. Good luck for all you.
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Great news! So happy to hear your good news. Hopefully your hearing will continue to improve! Keep us posted.
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Hi everybody.
2 weeks after stopping medication, my hearing is fine but from third week my hearing loss, tinnitus, loss of balance, they all come back. I used steroids back again in a week, these symptoms improve again. I know the dangers of steroids and do not want to abuse this drug too much. Does anyone know any other way to control the symptoms?
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So sorry to hear your news... are you still taking the curcumin and doing acupuncture? Are you under any stress (besides the stress from thinking about the AN!)? How's your sleep?
I've just discovered another supplement called Honokiol that is being studied in South Korea, it is supposed to be very good for post radiation to help with healing and may possibly help with swelling.
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I still taking Curcumin everyday because I think it will help in longtime but I just stop doing acupuncture. I don't think stress make my symptoms comeback, I still sleep well.
I am trying to find another way to help my hearing and my friend told me to use Gac oil which extracted from Gac plants in VietNam. My friend is an pharmacist and she believe Gac oil is good for post radiation. I don't really expect much but I am trying. Please tell me if you have any good news about post treatment studying.
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I am in a yoga teacher training all weekend... I will send healing thoughts your way. Next week I will write again when I have more time.
Here are two yoga exercises to try:
http://www.youtube.com/watch?v=uwiZ0LbECwQ
This is for balancing the brain. It should be done for 10 minutes each day
http://www.youtube.com/watch?v=zedVvFEh1ck
This is good for clearing things. Start off with 3 minutes and build your way up to 5 and then if you can 10 minutes
I know it might seem strange, but you've got nothing to lose by trying it. Don't give up!
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Hi MinhVietNam. How are you doing? The steroids, the medication you've been taking, work to reduce inflammation (or swelling). The curcumin also works on inflammation but you may want to up your dose. I think the steroids work because you take a high dose of them and everything in your head shrinks.
In addition to taking curcumin, I am on an anti-inflammatory diet. No wheat, no dairy, no sugar. I also regularly drink red wine which works as an anit-inflammatory and a blood thinner. I also take reservatrol which is derived from red wine. Something seems to be working because I had an MRI last week and the AN has reduced in size. I went from 1.4 x 1.7 x 1.8 to 1.3 x 1.3 x 1.6 since last July.
I too took steroids for sudden hearing loss in the beginning of all this last May and felt so awful from the medication I vowed to find another way. I started acupuncture and the diet without wheat, dairy or sugar last May. Then starting taking curcumin & reservatrol and also tried to drink at least 64 ounces of water per day. More recently I have started taking Honokiol and doing a daily practice of Kundalini yoga. The yoga has quieted my tinnitus significantly. Fingers crossed your hearing resolves. Sending healing thoughts to you.
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Hi LisaM. using of steroids make me gain weight, personality changes, increased blood pressure ... I have sent emails asking Dr. Medbery and he advised me not to continue to use steroids if necessary it could be replaced by Ibuprofen .. Currently I almost stopped my steroid so my hearing is fluctuating and balance is same. Sometime my hearing is good enough to listen to music but sometime I can't understand what is my wife talking.
I have also read the research on anti-inflammatory properties of curcumin, perhaps like you said I would try increasing the dose. Today, I start to practice Yoga like yoga video as you refer, at least it will help me relax.
I still go to work every day and have to face the challenges brought by the symptoms, I also hope I can get over things like you. Thank LisaM.
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MinhVietNam - hope you are feeling better!
LisaM - My husband had recently a symptom flare up at 8M after his CK and had to take steriods as well. It was really awful. His symptoms are still not back to the pre-flare up levels. He is on the anty inflamatory diet and begun taking curcumin suplements. I was wondering where do you buy Honokiol?
Best regards,
Anna
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Hi akaltz.
About steroids. First time I used Prednisolon but it seems doesn't work, after that I was told to use Dexamethasome, it works, all my symptoms gone after 3 days. Dexamethasome is 7 times stronger than Prednisolon.
I am not a doctor so you may consult with your doctor.
After stop using Dexa all my symptom is back, but I don't want to use it anymore, it is a dangerous medicine.
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akaltz - I buy my honokiol from econugenics.com. The honokiol is supposed to be very good at promoting healthy tissue post radiation and it "may" help reduction of Vestibular Schwannomas, this is being studied in South Korea.
Dr. Isaac Eliaz in Santa Rosa, CA works with Honokiol and cancer patients. His company is econugenics, he imports the product from Japan. It's not cheap!
Here is a link to the product:
http://honokiolextract.com/
MinhVietNam - is anything better? Are you hearing some days and not on others? I think I may have told you that a woman on this forum lost her hearing for 3 months after taking steroids and she thought it was gone for good... only to have it return just before her surgery. These nerves are so unpredictable! What kind of work do you do?
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Hi Lisa, my hearing change many times during one day, most of daytime I can't understand any conversation but sometime I suddenly hear better and understand what people are talking. I can't explain why!
My hearing get worse since I stop using steroid and I have many problems in my work. I am an engineer, I work for VietNam Electric Group. AN really change my life because I can only hear on AN ear, I lost hearing on other ear on surgery 6 years ago.
Next week I will have some important meetings, an appointment with my doctor so I have to take steroid now, I need to hear better although I afraid of using this medicine.
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You have a job that sounds stressful. Losing your hearing is stressful. My guess is you do have stress in your life. We all do to some degree. My thinking is that the stress hormone cortisol causes inflammation and my strategy is to reduce inflammation. To reduce inflammation, try upping your curcumin, put an ice pack on your head, take holy basil, pectin is also good for reducing inflammation. I don't eat wheat or dairy. This is an anti-inflammatory diet. Stay completely away from sugar!
When I was first diagnosed with the AN, I had sudden hearing loss twice. My hearing was gone for a about 5 days both times. The first time I didn't do anything and my hearing returned (I did stop wearing earplugs to bed). The second time I took steroids, that was almost a year ago.
Today I woke up with a very full feeling in my ear and tinnitus. I took my daughter to an amusement park yesterday and rode a ride that went around in circles at a very rapid speed. I think that these cranial nerves are so sensitive that the slightest thing can impact them. Spinning around in circles must have put pressure on my hearing nerve.
Last May I did acupuncture 3 times a week for 3 months. It was expensive, both monetarily and time wise. The acupuncturists put about 30 needles in me with as much electrical current as I could stand. At the end of the 3 months the AN did not shrink, it was the same size. I was disappointed but I felt better than I had in years. I stopped doing the acupuncture except for a treatment here and there (now I am resuming treatments at once a week). The acupuncturists were the ones who got me thinking about working on inflammation and I think that the acupuncture had a delayed effect as the acupuncture works the meridian system. Can you go to an acupuncturist everyday for a week or two? You've got to fight for these nerves! I don't know if any of this will work, but trying is certainly not going to hurt! The fact that you still have hearing that comes and goes means something. Sending you healing thoughts. Drink at least 64 ounces of water per day!
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Hi LisaM and MinhVietNam,
Thank you for your suggestions! My husband is done with steroids but still not feeling as well as beore the symptoms flare up. He is going to acupuncture once a week and taking tons of suplemnts. I didn't relaize that you have to take curcumin with oil and heated. He may have to try that and also upping his dose, his job is very stressful :(.
Hope all is well!
Anna
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Hi Minh,
This is just a theory of mine but it might be worth testing.
It is known that taking steroids brings your hearing back...
If you suffer from Sudden Hearing Loss, from causes other than AN, Steroid treatment, Hyperbaric treatment are known to save hearing.
What isnt clearly understood yet is the mechanism involved in hearing preservation for AN's. Why it works for some and not for others, and why it seems to work so well so quickly, and why things get worse so quickly for some when you stop taking them.
One mechanism that maybe at play here, is one of the side effects of steroids which is increased blood pressure.
As your blood pressure increases more blood flows to the nerves and cochlear, may improve hearing.
Quite often the blood vessel to the cochlear is squashed by the AN in the Internal Auditory Canal.
If your blood pressure is higher it maybe enough to push past the restriction in the IAC and supply the cochlear and nerves with blood again.
Then when your blood pressure drops, blood supply to the cochlear and nerves drop and you hearing gets worse.
So my theory is, that when you take steroids, one of the mechanisms at play is that the increased blood pressure helps blood flow to the cochlear. When you stop taking steroids your blood pressure falls and your hearing diminishes again.
So How can we test this theory safely?
Maybe worth getting a blood pressure monitor...
Blood pressure is naturally low first thing in the morning and while you are asleep..
If the theory has merit, you hearing would be poor first thing in the morning and improve when your blood pressure reaches the point where it pushes past the restriction.
The best way to safely raise your blood pressure, to test the theory, is through excercise.
If you excercise for 30+ Minutes, does your hearing improve temporarily?
If yes then maybe there are safer options to slightly raising your blood pressure, other than taking steroids.
My thoughts are with you.
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Hey Minh! How are you? Please update us on your hearing!
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Hi Lisa, PaulW .. I am sorry because I can't update my hearing status for along time. I am having a hard time, my work, my health all are not good.
Do as you and Paul told me, I am trying do yoga and excercise at least 30 minutes a day. I found a very famous acupuncturist and I have been treating for 1 month, 7 times a week. I also still eat curcumin and Gac oil
My hearing returned to me 3 weeks ago and stayed for 2 weeks, in that time I was very glad and hoped it will be better, but after one night I woke up and I found that I could not hear any thing even loudly sound.
Now I am using steroid again because it is long time since I stop used this medicine and I think it will be ok if I use it for a short time.
Thank all you for your helps, I will update my hearing.
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Sorry to hear you are having a rough time. You are putting up a good fight for your hearing. Fingers crossed it comes back AGAIN! Please keep us posted when you can. I sincerely send you positive thoughts of healing and hearing!
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My hearing still very bad. Steroid didn't work much in this time, it only help me hear better on 3-4 days and stopped. Now I think I should accept the fact that my hearing won't get better.
In all cases we have to live and still find the best way to go, me too. I know Cyberknife saved my life and I never feel regret for my choice.
I have to admit that I underwent terrible time, could not accept loss all hearing, some night I couldn't sleep, cried and asked myself why.
But now, things seem better. My family, my friends always help me, encouraging me to face up a new life, without sound.
I don't hope my hearing return, but who know, one day when I wake up I will able to hear people talking :). Good luck to all you.
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MinhVietNam, just yesterday I thought of you and wondered how you are. Good to hear from you. You are very lucky to have friends and family that love you. This struggle is difficult, but it sounds like you have reached the other side of it. Best of luck to you. Enjoy life. If something changes please let us know. Blessings to you.
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Hi everyone, that is long time since my last post. I have good news that my hearing is coming back again. Its really great.
It is still fluctuating, I still cannot hear all things people say but I can understand if you talk to me in close distance. I am happy now but I afraid that I will lost hearing again because in past many time it came and gone.
However, I believe that I won't loss hearing permanently. It also may be a good news for all people who treated with Cyber Knife, we should be more positive.
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Hooray for you! So happy for your good news!
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Thank you very much Lisa. You helped me with Curcumin information. How are you Lisa?
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So far so good... I will have my next MRI in October. My hearing is still with me. Tinnitus comes and goes and seems to be aggravated by stress which is so hard to avoid in our modern world. I'm taking the curcumin and honokiol along with my other supplements, meditating as much as I can. Are you still taking curcumin?
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I am glad to hear that from you, I believe you will get a good result of MRI test. I am taking Curcumin daily with high dose and avoid everything that is sweet. Stress is really make ANA's symptoms worse and I have to change my work, less pressure than previous time.
I hope to continue to hear good news from you.