Acupuncture for Eagle's? Thoughts and Experiences?

General
1

Greetings.

I've got a confirmed diagnosis of Eagle's on both sides. It causes the typical pain in the neck, head, right shoulder, right lower jaw, sometimes even in my hand. The right side has more pain than the left.

For a while I was engaging in risky behavior including oral and smoking drug use. Even smoking marijuana would exacerbate the condition because the negative pressure in my face and throat severely worsened my condition. I have learned that I cannot do anything involving inhaling hard, not using my face or diaphragm. The next day or two I pay for it dearly.

Years ago, when I stopped doing the risky things, I got a little relief. I learned also a lot of other things about Eagle's over the years:

1) when I yawn, I must do so in proper sitting-up position, with perfect posture or else i pay for it.

2) I cannot inhale hard through anything.

3) certain positions and pressures of the tongue cause the pain to worsen. unfortunately, the tongue is a very strong muscle.

4) i cannot eat hard candy the way i used to, with the suction in my mouth. I can't maintain any suction in my mouth at all ever again.

5) a cortisone injection relieved the pain by about 50%. avoiding negative pressure in my mouth has made the pain stable. it doesn't get worse as long as i remember not to do anything like that.

6) never push the tongue down and back using the tongue muscles. never push hard against the roof of your mouth with your tongue.

7) i cannot hold my head up at any angle while lying down or sitting back. It has to be neutral, centered, and relaxed.

8) posture makes all the difference, all the time.

9) sometimes I can hear the blood in my artery, "goosh, goosh, goosh." I wonder, is this a sign that I'm starting to deal with compression?

I am getting more and more experienced with Eagle's, knowing my new boundaries etc. I find that if I make it much worse it will start to feel like a disability, which concerns me. The pain is pretty minor, but annoying and distracting enough to where it may harm my ability to do my job and it may affect my parenting on the worst days.

What I really want to know: how successful have you been with an acupuncturist? Is this a treatment worth pursuing? I don't believe I'm in danger of e.g. stroke, but the pain is frustrating. And I can only sleep in a very small number of different positions. I'd like to be able to have a better time getting to sleep.

Thanks everyone for your advice / experience / suggestions,

- fuzz

2

Hi Fuzz,

Disclaimer: Not sure I have ES but I have something with similar symptoms. I think there is a muscle component to whatever is wrong with me and maybe this impacted my acupuncture experience.

Acupuncture did not help any of my symptoms. It caused my face and neck muscles to contract or spasm and I spent 30 minutes laying in a darkened room crying from the pain. The doctor also put a needle between my right thumb and pointer finger and I had trouble using the mouse for a couple of days afterward and leg muscle pain from the spasms the needles caused there. The doctor was Chinese with a medical (D.O.) degree and trained in acupuncture in China.

Even though I had a bad experience, it must work for some people or it would not be so popular. If you do try it, I suggest asking what you should do if you experience pain after the doctor leaves the room, like an emergency button. I tried to sit up but that caused more muscles spasms, I tried calling out but there was music playing and no one came back to help me. So I tried to lay still and relax as much as possible until the torture was over.

I am still glad I tried it because it might have helped. At this point I would try just about anything in the hopes that I could be even partially pain free. I can't sleep on my side, look to the side out of a car window, talk for more than a few minutes, lift objects above shoulder level, or play very long on the computer without symptoms ramping up. If acupuncture could help that, it would be worth trying. Unfortunately, it didn't work for me.

Best of luck to you.

Elsie

3

Hi Fuzz,

Acupuncture did not work for me or hurt me. I found that trigger point dry needling done by my physical therapist was more beneficial. But it did not last long for me due to multiple issues. But I would give that a try too if acupuncture does not work for you. The link below for more information on the subject.

I also have a massage therapist who does myofacial release/deep tissue massage. That is amazingly painful and does not last long either these days. But I still go to him when $$ permits it hurts so good and last longer than the needles.

http://en.wikipedia.org/wiki/Dry_needling

Hope you can find some relief either way

4

Hi Fuzz,
I’m a RN, BSN. I’ve had so many Acupuncture TX’s before my C-Spine Surgery for pain control. I just lucked out with this incredible group of Women Acupuncturists. They had a nice light touch and hit all the right spots! I found that they were helping me keep my sanity. It really worked for me! I’ve started going back now as now they just need to focus on the ES. So sorry you all had such a bad experience! I always get my call bell in case I have a problem. The needles distract pain signals going to the brain as well as increasing blood circulation to take away toxins. It’s very important not to move after the needles have been placed! Tell them to turn the music down & turn off the lights. I swear I fall asleep every time! It hurts like a bitch when they place the needles! After a bit you don’t feel them. I was able to work out a nice deal with them as I was going for Acupuncture twice a week and a special Therapeutic Massage once a week. So they gave me special pricing! Check for other Acupuncturists near you and give it one more try? I’m also a MM patient. I only partake when I’m feeling so lousy and those herbs help so much. I guess some modalities work for some and not others? I just don’t know if you gave Acupuncture a good chance? Sometimes you gotta try another practitioner? Look up Certified Acupuncturists in your area. There are some great points in the ear for pain. The point in between your thumb and forefinger is a great spot for head pain. Look for smaller gauge needles and a lighter touch. Feel better and know we are here for support! Take care all of you!

5

Hello Fuzz,

Acupuncture did not help any of my symptoms of eagles. However, I did find relief with my C-5 - C7 herniated discs and lower spine problems. Every person is different and maybe you should give it a try. However, it may take several treatments before you feel any results. I wish you all the luck in looking for a pain treatment other than medication for your eagles. Take care.

6

Dear Fuzz & Viper Bone,
As VB said Acupuncture is cumulative. The longer you receive TX’s the more benefits you reap. Good point VB.

7

Dear Fuzz,

In June of this year I was diagnosed with bilateral ES. On 8/9/13 I had my left styloid surgically removed. Before the diagnosis I tried acupuncture which only exacerbated my symptoms. I had suspected ES and approached it with a neurologist a couple of years before I tried the acupuncture and had I known it was truly Eagles I never would have done the acupuncture! Maybe had I known I had ES and the acupuncturist was educated in the syndrome and its profound changes on the body would I do it. I’m actually considering it as an alternative for pain management in the interim until I have my right styloid surgery in 4 to 6 months, maybe.

But in my honest opinion, after dealing with the pain of ES for 20 years and having elongated styloids basically since the age of 10, (I’m 43 now) my best option is having them surgically removed as opposed to trying to ‘manage’ the pain from keeping them in. That’s just my opinion. It’s only been 11 days since the 1st spike (styloid) has been gone and already I have the energy back that I had as a teenager! I literally don’t feel like I’m in my 70’s when I wake up in the morning like I used to in my teens because I have circulation back in my carotid and jugular!!!

Sincerely,
Amy Blue

8

Amy,

WOW! I'm amazed at what I hear. I'm so afraid of surgery since when I was 22 a real arrogant SOB removed my tonsils resulting in some loss of function.

So far, do you notice any loss of function after removing the syloid? Is there any risk of loss of function? I'm having trouble visualizing what these ligaments do.

When the cortisone was injected a few weeks ago, the ENT placed droplets in all spots surrounding the right ligament. What was truly interesting was that I didn't get the sense of ligament, i.e. flexible-but-not-stretchy. I got the sense she was pushing around a hard plastic tube, which as I said verified the diagnosis of ES. I have noticed loss of energy, but have always attributed it to:

- lack of enough exercise

- my two daughters being hard to keep up with

- having kids makes it hard to get enough sleep

I have also noticed myself 'dumbing down' including an overall mental slowdown and random left-right reversals. I'm significantly interested, having heard your testimonial to the changes since surgery. I am a healthy weight for my height and all other vitals strong, but over the past decade or so I have noticed a decrease in mental / cognitive performance. It doesn't help that it's confused by child-rearing and all the life changes associated with that (five years ago we became parents for the first time, then again three years ago).

Do they have a way to measure comparative blood flow past the site of ES? I would be interested to see if my brain's running at full throttle these days.

Thanks so much for your info,

- fuzz

9

i am new to this.. and reading this, as i have ES and see a surgeon Sept 5. Amy, did your CT or other test show the jugular and cartoid being affected or did the surgeon find when he did surgery?

AmyBlue said:

Dear Fuzz,

In June of this year I was diagnosed with bilateral ES. On 8/9/13 I had my left styloid surgically removed. Before the diagnosis I tried acupuncture which only exacerbated my symptoms. I had suspected ES and approached it with a neurologist a couple of years before I tried the acupuncture and had I known it was truly Eagles I never would have done the acupuncture! Maybe had I known I had ES and the acupuncturist was educated in the syndrome and its profound changes on the body would I do it. I'm actually considering it as an alternative for pain management in the interim until I have my right styloid surgery in 4 to 6 months, maybe.

But in my honest opinion, after dealing with the pain of ES for 20 years and having elongated styloids basically since the age of 10, (I'm 43 now) my best option is having them surgically removed as opposed to trying to 'manage' the pain from keeping them in. That's just my opinion. It's only been 11 days since the 1st spike (styloid) has been gone and already I have the energy back that I had as a teenager! I literally don't feel like I'm in my 70's when I wake up in the morning like I used to in my teens because I have circulation back in my carotid and jugular!!!!!

Sincerely,
Amy Blue
10

I have ES and find that acupuncture works great, helps keep my symptoms calm.

11

I tried acupuncture and it didn't do anything for my pain.

From everything I've read, the only cure for Eagles and the resulting pain is surgery to remove the styloid. And it's best to get the whole styloid removed, not just part of it.