Acupuncture - UPDATE

fishmanpa
fishmanpa Member Posts: 1,227 Member
edited January 2015 in Head and Neck Cancer #1

Hellow fellow boardies,

I don't post much nor frequent the boards and I do apologize. I posted my reasons and I'm sure you understand. That being said I have a question.

Has anyone tried acupunture to help alleviate post treatment symptoms? At my last appointment, my surgeon recommended it for saliva producton and chronic neck and shoulder pain. I've read posts on the boards and see some positive and some negative. I found someone fairly local and I have an appointment after the New Year. He's a 2X cancer survivor (colon and another I can't recall) and I felt quite comfortable speaking with him. He's certified and has been practicing acupuncture for over 20 years and has treated head and neck patients with success. He's currently treating a H&N patient. I've researched him and the reviews are quite good. He suggested traditional needle therapy but also does laser. He feels needle therapy, specifically a combination of traditional and auricular would be very beneficial. I've given him permission to review my medical records and the first visit will be mostly orientation and review with an initial treatment. 

Thing is, it's out of my pocket and it's not cheap! I need to do something though. My saliva is maybe 60% of what it was. Not terrible but it makes eating difficult. The pain is the biggest issue. It's so fatiguing to be in pain basically 24/7. It's a 3-4 out of ten all the time. It even incorporates itself into my dreams. I take 50-150mg of Tramadol daily as well as ibuprofen. That keeps it manageable but dang... ya know? 

So any insight would be appreciated. 

Thanks in advance for your thoughts and opinions.

Positive thoughts and prayers

"T"

 

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Comments

  • hwt
    hwt Member Posts: 2,328 Member
    #2
    T

    Sorry to hear about the pain. I haven't tried accupunture nor do I know anyone that has. Short of the expense, I can't think of any reason not to give it a try. I know it wouldn't be a first choice but a light dose of hydrocodone might give relief.

    If you try it, let us know how the accupunture goes.

    Good luck

    Candi

     

  • MarineE5
    MarineE5 Member Posts: 1,030 Member
    #3
    Hi T

    I am glad to read that you have around 60% saliva. I have zero saliva and did try acupuncture. A Military friend of mine had tonsil cancer, had issues with saliva and did a couple of sessions and had his saliva restored. He did have to sip some water during the night, but no longer needed to carry a water bottle everywhere he went during the day.

    I tried it and the Doctor I saw told me that if I didn't have saliva by the 6th session, I probably wouldn't get it back. After the first treatment, I had a runny nose for 2 days but no saliva. After the 6th treatment, still nothing, so I went for one more to be sure. It didn't work for me, but worked for my Military friend, go figure. I do have to mention, he was only a year or two out from treatments and I was roughly 4 years out at the time. So that could have played a big part in my results.

    I have also read on this board or another that a person got their saliva back around the 6 year mark, it just started working again for them. I had hopes that I might be so lucky, but have not been. All is good though. I do my flouride treatments daily, and sip water and use the Biotene mouth spray, etc to get by.

    Give it a try, yes, the treatments are not cheap. My first treatment was $150 and the following treatments were $75 every 2 weeks.  I hope you have success.

    My Best to You and Everyone Here

  • cureitall66
    cureitall66 Member Posts: 913
    #4
    The pain..

    Hi "T",

    Is the pain primarily neck, shoulder, arm pain? The reason I ask is because "K" had that type of pain months after tx and his regular physician ran some tests to be sure it wasn't anything major and then treated him for nerve pain. This was by putting him on an antidepressent drug called amitriptyline HCL 50 mg (generic) that works with the nerves. He noticed a huge difference within a few weeks. Worth checking into if you can get a doctor to work with you.

    Good luck and nice to hear from you.

    Hang in there!

    "C"

  • Bart T
    Bart T Member Posts: 62 Member
    #5
    A LITTLE HELP - I THINK

    I tried acupuncture for lack of saliva and it seemed to have worked a little, but I still have far below normal saliva. Other than a little damage to the wallet, I don’t think it can do any harm, so it’s worth a try.

    I received my treatment at the intergrative medicine department of Sloan Kettering in New York. They did tell me that there are acupuncturists with special training in treating lymhedoma and lack of saliva from head and neck radiation. If you are going to try it, you should seek out such a person. I know they do give referrals to acupuncturists with this specialized training outside the New York area, and you might try giving them a call and asking if they could give you a referral in your area. The number of the intergrative medicine department is 646-888-0800.

    It was surprisingly painless and relaxing, and interestingly most of the needles were in my lower arms and lower legs with a couple in the ears (yes I did say painless and relaxing).

     

    Good luck. 

  • Guzzle
    Guzzle Member Posts: 710
    #6
    Bart T said:

    A LITTLE HELP - I THINK

    I tried acupuncture for lack of saliva and it seemed to have worked a little, but I still have far below normal saliva. Other than a little damage to the wallet, I don’t think it can do any harm, so it’s worth a try.

    I received my treatment at the intergrative medicine department of Sloan Kettering in New York. They did tell me that there are acupuncturists with special training in treating lymhedoma and lack of saliva from head and neck radiation. If you are going to try it, you should seek out such a person. I know they do give referrals to acupuncturists with this specialized training outside the New York area, and you might try giving them a call and asking if they could give you a referral in your area. The number of the intergrative medicine department is 646-888-0800.

    It was surprisingly painless and relaxing, and interestingly most of the needles were in my lower arms and lower legs with a couple in the ears (yes I did say painless and relaxing).

     

    Good luck. 

    Expense

    T. Ive recently been to a UK centre which provided me with complimentary therapies free but my saliva is near normal 6 months out. My question is for a practise with few overheads why does this person charge so much?

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #7
    cureitall66 said:

    The pain..

    Hi "T",

    Is the pain primarily neck, shoulder, arm pain? The reason I ask is because "K" had that type of pain months after tx and his regular physician ran some tests to be sure it wasn't anything major and then treated him for nerve pain. This was by putting him on an antidepressent drug called amitriptyline HCL 50 mg (generic) that works with the nerves. He noticed a huge difference within a few weeks. Worth checking into if you can get a doctor to work with you.

    Good luck and nice to hear from you.

    Hang in there!

    "C"

    Gabapentin

    Hi "C",

    It's neck, shoulder and back pain (left side). I believe it's worsened due to compensating in posture etc. I've been on Gabapentin since treatment for neuropathy in my feet. It helps keep the "stabbies" away but does little for the neck/shoulder/back pain. Massage helps as does OTC heat rubs. I have a neck/shoulder heating pad that helps too but overall the pain is always there. In addition, I take Tramadol daily. It's just fatiguing is all and grates on my spirit a bit at times. The saliva? For the most part I do Ok. But eating is and has been "chew, chew, sip, swallow". I don't go anywhere without my water bottle.

    The acupunturist I'm seeing has experience in treating H&N so we'll see but it is expensive with the first appointment running $155 and subsequent visits $95. It's worth an initial investment to see is it makes a difference. 

    Positive thoughts and prayers

    "T"

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #8
    Bart T said:

    A LITTLE HELP - I THINK

    I tried acupuncture for lack of saliva and it seemed to have worked a little, but I still have far below normal saliva. Other than a little damage to the wallet, I don’t think it can do any harm, so it’s worth a try.

    I received my treatment at the intergrative medicine department of Sloan Kettering in New York. They did tell me that there are acupuncturists with special training in treating lymhedoma and lack of saliva from head and neck radiation. If you are going to try it, you should seek out such a person. I know they do give referrals to acupuncturists with this specialized training outside the New York area, and you might try giving them a call and asking if they could give you a referral in your area. The number of the intergrative medicine department is 646-888-0800.

    It was surprisingly painless and relaxing, and interestingly most of the needles were in my lower arms and lower legs with a couple in the ears (yes I did say painless and relaxing).

     

    Good luck. 

    Thanks!

    I've found someone local to me in VA that has experience with H&N patients so we'll see. 

    Positive thoughts and prayers

    "T"

     

  • cid817
    cid817 Member Posts: 58
    #9
    Hope it works for you. 

    Hope it works for you.  Interested to hear your results.  My hubby went to one and after about 5 visits, decided it wasn't working for him.  You say you're in Virginia; can you tell me where?  We are in Fredericksburg, Virginia. 

    Cindy

  • jim and i
    jim and i Member Posts: 1,788 Member
    #10
    So sorry you are in pain all

    So sorry you are in pain all the time. I have no experience with the saliva/accupuncture but I do know several people who had it for pain and great success. I would try it. I know how you feel with the pain 24/7 even if it is not high level pain. I suffer with lowerback and hip from a fall. Family and friends can't quite grasp how tiring and depressing it can be so I usually don't say anything. Jim was the only one that understood. I pray this works for you.

    Debbie

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #11
    cid817 said:

    Hope it works for you. 

    Hope it works for you.  Interested to hear your results.  My hubby went to one and after about 5 visits, decided it wasn't working for him.  You say you're in Virginia; can you tell me where?  We are in Fredericksburg, Virginia. 

    Cindy

    Fro Ro

    I'm in Front Royal :) The accupuncturist is in The Plains.

    Positive thoughts and prayers

    "T"

  • MrsBD
    MrsBD Member Posts: 615 Member
    #12
    Acupuncture to Preserve Salivary Gland Function

    It is definitely worth a try. I had acupuncture during the time I was having chemo and radiation, not after. During the first session, I felt saliva flow under my tongue. I was really a skeptic before that happened. Acupuncture also relieved the nausea. Two months after treatment, I would say my saliva is 95%. During the night I use a humidifier and keep water  nearby. My acupuncturist uses a protocol developed by MD Anderson cancer center in Texas. I hope it will help you!

  • avisemi
    avisemi Member Posts: 172
    #13
    fishmanpa said:

    Fro Ro

    I'm in Front Royal :) The accupuncturist is in The Plains.

    Positive thoughts and prayers

    "T"

    I'm in the DC area. Would you

    I'm in the DC area. Would you mind sharing the person's info? I'll try to find someone closer to us but i like that this person has experience with H&N

    I wish you good luck and that this does work for you.

    thanks,

    Avisemi

  • Bunnymom
    Bunnymom Member Posts: 212 Member
    #14
    Acupuncture

    thanks to your post, I did some research to see if I could find someone in my area who treats HNC patients with acupuncture. I found someone who is currently treating 2 oncology referred patients from a large teaching hospital. He sent me some research that is very encouraging. One from NIH and one from MD Anderson. I had treatment to only one side but I definitely have about a 50% reduction in saliva. I also have nerve pain in my tongue on the untreated side. Doctor referred me to pain management but heck, if I can get relief without the drugs, I'm all for it. He charges $100 for evaluation and $75 for each session thereafter. In hope acupuncture works for you. Please keep us posted as to your progress and results. 

  • Moki
    Moki Member Posts: 53
    #15
    Acupuncture

    I have done 3 sessions of acupuncture to help with my dry mouth and throat and it is helping a lot! For my neck and back pain, due primarly bone misalignment and muscle compensation, I am doing chiropractor and clinical massages: I have done 4 sessions and I am much more flexible and relaxed in that area.

    Acupuncture help if it is not related to bone issues.

    Hope you will get benefits

     

    Monica

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #16
    Moki said:

    Acupuncture

    I have done 3 sessions of acupuncture to help with my dry mouth and throat and it is helping a lot! For my neck and back pain, due primarly bone misalignment and muscle compensation, I am doing chiropractor and clinical massages: I have done 4 sessions and I am much more flexible and relaxed in that area.

    Acupuncture help if it is not related to bone issues.

    Hope you will get benefits

     

    Monica

    Thank you!

    Thanks for the info BMom and Monica,

    I'm encouraged at the very least and hopeful at best that the treatment will offer something beyond where I'm at now. This therapist has had cancer himself and has treated a couple of H&N patients with success. He gave me the contact info an indeed, it's encouraging. I've sent my medicaton list and he has access to my medical testing. I see him in early January and he feels that he can at the very least reduce the pain. That's HUGE! It's so fatiguing to battle the chronic pain, so even a small percentage of relief would be welcome.

    I'll keep you all informed of the results.

    Positive thoughts and prayers

    "T"

     

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #17
    UPDATE

    I posted this in response to another thread on the subject but here it is again...

     

    I had my first session last Tuesday. He asked a lot of questions both from a medical and psychological standpoint, explained the basics and did the first treatment. He said the first few treatments would be basically "tuning up" my body, getting things in line etc. He used 7 needles. one at the base of my sternum, one on each side of my stomach, one on each thigh and one on each foot where the ankle meets the leg. Felt no pain at all. I was on a table relaxed and he left the room. Next thing I knew he was back in the room and I had been there for 30 minutes! I was out!

    I can honestly say, I feel better! I went in there having not taken any pain meds for two days (wanted nothing to mask anything). I was in extreme pain and spasms in my neck and walked out relaxed and pain free. In fact, I've only taken 4 Tramadol since the treatment and 2 doses of ibuprofen. Normally, I'm taking 50-150mg of Tramadol a day and at least one dose of ibuprofen. Also, I realized I wasn't having a sip of water with every bite of food. Call me crazy, but I think this is going to help!

    I have an appointment on the 27th for the next tune up. I will add that this therapist treats many cancer patients and is a survivor himself. I'll keep you all posted. It's not cheap (insurance doesn't cover it) but worth every penny if it makes a positive difference.

    Positive thoughts and prayers.

    "T"

  • wmc
    wmc Member Posts: 1,804
    #18
    fishmanpa said:

    UPDATE

    I posted this in response to another thread on the subject but here it is again...

     

    I had my first session last Tuesday. He asked a lot of questions both from a medical and psychological standpoint, explained the basics and did the first treatment. He said the first few treatments would be basically "tuning up" my body, getting things in line etc. He used 7 needles. one at the base of my sternum, one on each side of my stomach, one on each thigh and one on each foot where the ankle meets the leg. Felt no pain at all. I was on a table relaxed and he left the room. Next thing I knew he was back in the room and I had been there for 30 minutes! I was out!

    I can honestly say, I feel better! I went in there having not taken any pain meds for two days (wanted nothing to mask anything). I was in extreme pain and spasms in my neck and walked out relaxed and pain free. In fact, I've only taken 4 Tramadol since the treatment and 2 doses of ibuprofen. Normally, I'm taking 50-150mg of Tramadol a day and at least one dose of ibuprofen. Also, I realized I wasn't having a sip of water with every bite of food. Call me crazy, but I think this is going to help!

    I have an appointment on the 27th for the next tune up. I will add that this therapist treats many cancer patients and is a survivor himself. I'll keep you all posted. It's not cheap (insurance doesn't cover it) but worth every penny if it makes a positive difference.

    Positive thoughts and prayers.

    "T"

    That's good to hear "T"

    I hope this keeps doing so good and even better with less pain and more saliva is a plus as well.

    Bill

  • Moki
    Moki Member Posts: 53
    #19
    fishmanpa said:

    UPDATE

    I posted this in response to another thread on the subject but here it is again...

     

    I had my first session last Tuesday. He asked a lot of questions both from a medical and psychological standpoint, explained the basics and did the first treatment. He said the first few treatments would be basically "tuning up" my body, getting things in line etc. He used 7 needles. one at the base of my sternum, one on each side of my stomach, one on each thigh and one on each foot where the ankle meets the leg. Felt no pain at all. I was on a table relaxed and he left the room. Next thing I knew he was back in the room and I had been there for 30 minutes! I was out!

    I can honestly say, I feel better! I went in there having not taken any pain meds for two days (wanted nothing to mask anything). I was in extreme pain and spasms in my neck and walked out relaxed and pain free. In fact, I've only taken 4 Tramadol since the treatment and 2 doses of ibuprofen. Normally, I'm taking 50-150mg of Tramadol a day and at least one dose of ibuprofen. Also, I realized I wasn't having a sip of water with every bite of food. Call me crazy, but I think this is going to help!

    I have an appointment on the 27th for the next tune up. I will add that this therapist treats many cancer patients and is a survivor himself. I'll keep you all posted. It's not cheap (insurance doesn't cover it) but worth every penny if it makes a positive difference.

    Positive thoughts and prayers.

    "T"

    So happy for you

    Yuppie!!!!! I am very happy to hear it is working. You will feel better and better Smile

  • donfoo
    donfoo Member Posts: 1,771 Member
    #20
    fishmanpa said:

    UPDATE

    I posted this in response to another thread on the subject but here it is again...

     

    I had my first session last Tuesday. He asked a lot of questions both from a medical and psychological standpoint, explained the basics and did the first treatment. He said the first few treatments would be basically "tuning up" my body, getting things in line etc. He used 7 needles. one at the base of my sternum, one on each side of my stomach, one on each thigh and one on each foot where the ankle meets the leg. Felt no pain at all. I was on a table relaxed and he left the room. Next thing I knew he was back in the room and I had been there for 30 minutes! I was out!

    I can honestly say, I feel better! I went in there having not taken any pain meds for two days (wanted nothing to mask anything). I was in extreme pain and spasms in my neck and walked out relaxed and pain free. In fact, I've only taken 4 Tramadol since the treatment and 2 doses of ibuprofen. Normally, I'm taking 50-150mg of Tramadol a day and at least one dose of ibuprofen. Also, I realized I wasn't having a sip of water with every bite of food. Call me crazy, but I think this is going to help!

    I have an appointment on the 27th for the next tune up. I will add that this therapist treats many cancer patients and is a survivor himself. I'll keep you all posted. It's not cheap (insurance doesn't cover it) but worth every penny if it makes a positive difference.

    Positive thoughts and prayers.

    "T"

    Fantastic!

    That is trilling news to hear. So glad it helped. Looking forward to future reports, hoping at least as dramatic effects.

  • Purplemountain
    Purplemountain Member Posts: 119
    #21
    Acupuncturist

    Hi Everyone.

    I have been a way for a while now.  It has been a little over a year since I finished my treatment for NPC.

    I would like to chime in regard to Acupuncture treatment for side effects of the treatment.

     

    First I would like to reveal that I am a licensed Acupuncturist and Chiropractor in the sate of CA.

    I have not treated anyone with nead/neck cancer side effects beside myself.

     

    Ironically, just prior to my diagnosis, I attended MD Anderson seminar for Acupuncturist regarding to complimentary treatment for cancers.

    So what I say is my personal experience as a patient and practitioner of myself.

    I find utilizing acupuncture treatment (needles) improved my symptoms post chemo and radiations treatment. ( I had 3 chemos and 33 radiation daily)

    The saliva has improved from a dried desert especially at night to able eat and swallow food such as burritos, hamburgers, lasagna, noodle soups...etc...still need tiny sip of water to help flush down with each bite.

    Occasional headaches were taken care immediately with acupuncture as they come.

    The swallowing has improve as measured from type of solid food I can ingest.  ( I was unable to swallow at all including my own saliva or water for that matter.  I had feeding tube in the course of the conventional treatment but it caused more pain to my stomach.  I had/insisted the doctor take it out after 1 month during the treatment.)

    Neck weakness is slowly gaining strength.  I was unable to turn left or right when atempt to make turn while driving.  Had to move my entrie body just to look.  I tell people that I am a wobble head figure glued to dashboard.  

    Chiropractic adjustments have help with the neck in term of stiffness and sorenss.  The soreness is from the joints (vertebras) not moving due to the weak neck muscles.  These muscles have been shrunk and shriveled up like beef jerky in my experience.  The adjustment help to loosen up the joint.  It is similar to having bed sore. Agressive massage such as trigger point therapy or / and deep tissue help with with the neck muscles in term of soften and stretching them out.

    I prescribe and take raw Chinese herbs to tie all the treatments together.  Of course this procedure would depend on one ability to swallow since it is in tea form.  

    There were other symptoms such as mucous formation that wake me up every hour during sleep.  I had to get up and spit them out otherwise I would drown in it.  

    Since I am getting better and gaining weight back, I have the energy to come back to this website and be relevant.  

    The members here have guided me through from their experiences of the treatment.  I was going through the unknown and all of you have alleviated some of my fear when I started treatment.  I thank you everyone and if I can be of help to you, I would gladly return the favor.  

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