Acupuncture

[mthteach]

Has anyone ever done this for pain. My husband is having pain that never stops. We have gone to every doctor for this. The neurologist is giving him Tylenol 3 and other narcotics to ease the pain. He has had PSP for at least 2 years. He has almost stopped eating. He has lost 50 pounds. He has almost stopped talking. It is hard for him to get it out, and shallow, that we do not understand him. The ENT did a cat scan and looked down his throat and can not find anything. HELP!! I have discussed this on here before. The research doctor in Birmingham said that most people with PSP do not have throat pain. It has been so draining for him. Thank you for any advice on acupuncture that you can give.

[4mydad]

It's so hard to see someone you love go through this horrible disease

Is his pain in his throat? Or all over in general?

My dad tried acupunture for his back pain, when he was still able to drive himself to appointments. He said it helped a bit. If acupuncture is an option for your husband, why not give it a go...

Wishing you strength and comfort,

C

[abirke]

My first experience wiht an acupuncturist is when the 20 yr old "dr of dentistry" decided to do a root canal on me. The fact that this was not the doctor who assessed my needs should have been the first clue to turn around and leave........but i did not...

I was suffering too much from my tooth and needed relief.

The boy took about three hours to complete the procedure. never having had a root canal , I figured the length was normal. Then it was over. And if I had not felt pain before that poor excuse for dental relief I was now blinding pain. I asked with bloody cloth hanging out of my mouth can you give me something for the pain. As we walked into the waiting room the boy-doctor yelled out "someone give her some more Novocaine'' uuhhhg... I just paid my debt and was going to take myself to the hospital. I was going into shock and somehow stopped at this other doctors office. She rushed me into her a room, put me on a bed, called her husband an er dr, and asked if I have ever had acupuncture! No I cried but i'll take anything....she began applying the painless needles into my face and in about a half an hour the pain was totally gone!

Totally gone was the months of an aching tooth. Totally gone was the last three hours of the most excruciating moments of my life. Totally gone was the constant strain from squinting eyes...I felt GOOD! Refreshed like I had slept all night...a long deep lovely sleep. And what was even more amazing I did not have a seizure for 4 months after her miraculousness! Prior to that day, I had one seizure a month since I was 21 yrs old. I was about 40 at this time. "What? I think this helped my seizures!" it cost me about a hundred bucks with out ins. Unfortunately, I could not afford this again and though my seizures started up I never had that tooth pain again....oh and the root canal? yah it took me $2000 of my own money and 2000 of insurance to fix the dental debauchle (sp)...should have sued

So does it work YES! like all drs., acupuncturists differ in ability but try, it try it....what are ya gonna lose...

good luck,

AVB

[Amilazy]

Hi mthteach, my wife Margaret has had PSP for over 4 yrs. luckily she does not have pain, but I have had acupuncture for lower back pain and it worked at the time. A warning make sure the acupuncturist is qualified and recommended by someone you trust like your GP.

What I am writing for is the weight lose. This is a symptom of PSP, loss of swallow reflex which leads to coughing and choking which takes more energy from the patient than the food they can get down. Also can indicate possible aspiration of food into the lungs which can lead to major complications. Which may present as a sore throat there is usually nothing wrong with the throat though.

My wife lost her swallow reflex about Christmas time she lost about 28 lbs up to Mar. The coughing and choking got so much that meals took over an hour even with puréed food. She was so tired. The GP referred us to the dietician and nutrition team in local hospital. They recommended putting in a tube to provide indirect feeding. Margaret agreed and had a nasal gastric tube fitted (this was difficult but the nutrition nurses were very kind) and 6 weeks later a RIG (similar to a PEG). She has all her food, water and medication provided through the tube. Her coughing and choking stopped immediately though returns if her saliva thickens. Her weight loss stopped and her weight has increased slightly to a healthy weight. She is no longer as tired and looks better.

Hope this helps best wishes and good luck Tim

[Hidden]

My wife, luckily, does not have very much pain but she hardly eats anything at all - some days nothing at all just liquid and also has difficulty speaking, getting the words out and often just whispers. Her main problem is that one hand and arm is locked rigid so is totally unusable. - The joys of old age!

[abirke]

Mthteach,

I do believe in acupuncture, however what AMILAZY said should be considered. It may be the atrophying of the "swallow muscle " that may be causing the pain. losing wt pain in throat may all be reduced by using PEG or RIG. This may be another option....something to consider...I wrote about me and a tooth, when we must talk about those with PSP.....

AVB

[mthteach in reply to abirke]

Do you really think that a PEG tube would stop the pain. He has already lost 50 pounds. He hardly eats now. I keep telling him he has to eat more. I am about ready to go over next to him and feed him.

We are at the end our rope. He has done CT scans, etc... Now he is on harsh drugs for the pain.

[abirke in reply to mthteach]

One day I know everything the next I know nothing . Please tell me what a PEG or RIG is I assumed it was a feeding tube. Can he tell you where the pain is located...does he have a fever or lean to one side as of to get away from the pain.....Your need is urgent do the drs or physical therapist look for location of pain? I'm sorry that I assumed too much....I just reread you have had CT scans done nothing there? Others here have recommended acupuncture....now that IS worth a try...Good luck, Mthteach...

AVB

[Christine47]

I don't know what sort of pain or where your husband suffers from. I use acupressure on my husband (diagnosed in 2013). He has had trouble with his lower back, with sciatica, and to relieve his neck stiffness. Also, it will relax him and allows him to sleep. It is not as deep as acupuncture, of course, but I can do it and it gives him relief. It was a bit of a hassle to get him to acupuncture appointments, as you might imagine. I would say it is worth a try, but know it will take more than one treatment. And to reiterate what someone else mentioned, but sure to find a good, qualified practitioner. Hope this helps.

[Kelly55]

My mum has lost the use of her right arm (guessing it's PSP linked) and was in constant pain with shoulder and arm. Had a few sessions of acupuncture and I couldn't believe the difference in how often she complained about pain! Stopped clutching her arm all the time too. Really seemed to make a big difference. But the lady was mums physio at the hospice and she put two needles in that really hurt mum so she didn't want to go back, these were on the sternum and top of foot so I think sensitive areas. The pain unfortunately has begun to come back (6 months on) and a different physio who is spinal specialist recommended a more experienced acupuncturist or a course of acupressure, no needles involved. Definitely worth a try I think!! Chronic pain is terrible. Mum thankfully can still eat and talk and walk a bit but we are seeing dietitian soon about the PEG as apparently it's better to put it in sooner than later. Mum also has oramorph prescribed for real bad pain days to help sleep. Hope you find some relief x