Symptoms -  Hip trouble, falls (307 views) Notify me whenever anyone posts in this discussion.Subscribe
From: Sally (SARABOWLDEN) DelphiPlus Member Icon5/24/08 2:50 AM 
To: All  (1 of 41) 

B.J has been in touch asking about how things are and I thought I should update everyone.

First my Dad is home after open heart surgery andd 5 weeks in the hospital. The 4th week he was in I had to take my mother in with pneumonia and exhaustion. He's back to driving, but has had some falls, probably because he's not using the cane they gave him. He probably had Polio as well, one leg is an inch and a half shorter than the other. He's also just a stubborn as the rest of us PPSers'!

I've been having more and more pain and mobility issues with my right hip,which is a problem as my right leg has always been the stronger of the two. I finally got down to Pittsbugh to be assessed by the same Doc who did my mother's minimally invasive hip replacement about 3 years ago. I qualified and will have the surgery done on June 20th. Unlike most hip replacements, I will be allowed full motion and weight bearing right after surgery. Most of his patients go home in a day or two with a pain pump still attached to the hip nerves. I'll probably be in a couple of days longer, but probably no more than a week. My neice is going to stay at my place for a few days when I get home.

I'll try to keep you all posted!


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From: Bigcrusher DelphiPlus Member Icon Posted by host5/28/08 12:39 PM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (2 of 41) 
 1256.2 in reply to 1256.1 

Hi Sally,
Boy do you have your hands full. Glad that your Father is coming along fine. Sorry about the upcoming surgery on your hip. It is hard to understand of being able to put your full weight on it in just a few days. Boy have they come along with these procedure's. Also it is very loving for your niece staying with you while you recuperate. Your one tuff gal.



From: twobjumps5/29/08 10:48 AM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (3 of 41) 
 1256.3 in reply to 1256.1 
Good Morning Sally -
I am so glad things are looking up and you have a surgery date. I am excited for you - being without pain in your hip will be wonderful. Sometimes I think we get so used to feeling bum that we forget how it feels to not be in pain. You go girl - I will keep you in my thoughts and prayers.
Also delighted that your folks are doing better.

From: Bigcrusher DelphiPlus Member Icon Posted by host7/2/08 4:27 PM 
To: Sally (SARABOWLDEN) DelphiPlus Member Icon  (4 of 41) 
 1256.4 in reply to 1256.3 

Hi Sally,
When you are ready from having your operation, could you let me know what was going on with your hip's, to get you to have an operation? The reason why I ask is that i have had more than my share of hip pain constantly. It came on to me approx. 30 days ago and has just gotten worse. Even with my medication, it does not help with the pain I get out of my hip's. Anything that you could inform me about wii be much appreciated. Hope you are doing fine, would like to know how you and your family are doing. You have been in my thought's.



From: gerrysdolls7/20/08 7:25 PM 
To: Bigcrusher DelphiPlus Member Icon  (5 of 41) 
 1256.5 in reply to 1256.4 

A new voice weighing in!

I have had PPS for a very long time but it is only in the last 10 years or so that it has really been bothering me. A new thing for me has been hip pain. I went to my doctor about six weeks ago and he said that what I have is typical of PPS and gave me a shot of cortisone (and boy did that hurt!). Can't really say that it helped much. I really need to go back and have him look at it again. I'm lucky that he is knowledgeable about PPS.

I am also considering a motorized wheelchair. I currently walk with either a cane, or more frequently with a walker as the cane puts too much strain on my hip. You have to think of a wheelchair as preserving your ability to walk, rather than taking away your ability to walk.

I'll fill in my history at another posting.



From: VerleenS7/22/08 1:19 PM 
To: gerrysdolls  (6 of 41) 
 1256.6 in reply to 1256.5 
Gerry and Dave, I am new here and hope I'm not stepping on toes by jumping in here. I had horrible hip and shoulder pain back in 2005 and 2006. I was taking fentanyl and oxycontin and these did not completely control the pain. The pain was so bad that I went into a pain induced coma and was hospitalized. I came out of the coma after the IV morphine took affect. I also did not want to take these narcotics long term. During my internet research on pain, I came across NST therapy (also called Bowen therapy) for pain. I researched it some more and found a master practioner 4 hrs from me. Its based on asian energy meridians. At the time, I was dependent on others for bathing, dressing and driving. During the ride there, I moaned in pain after every slight bump in the road. The therapist worked on me (sort of like a massage) for 2 hrs. At the end, I was relatively pain free, except when I tried to use my shoulders. I went for 4 weekly treatments. The result was dramatic. A few months later, I had an EFT session with a very gifted person. After that session, I could drive again and use my shoulder. I still had some residual, but tolerable, pain in my shoulder, hips, elbows and knees. While visiting in Dallas, Texas we read an article in the newspaper therapy about cold laser therapy for pain. My husband researched it and bought a cold laser machine. After about a month of treatments, nearly all my pain was gone and has remained gone - now going on 2 years. The most profound reduction in pain came from the NST therapy. I have had the most success with alternative, asian based medicine. Verleen

From: Bigcrusher DelphiPlus Member Icon Posted by host7/24/08 11:44 AM 
To: gerrysdolls  (7 of 41) 
 1256.7 in reply to 1256.5 

Hi Gerry,
Sorry for not getting back to you sooner, I was down with a bad chest cold. A motorized wheelchair will help from reducing the pain in your hips. Shots generally does not help with the pain from PPS. My two Neurologists many years ago told me and I quote "there is nothing in the medical world that can help you". They went onto that they send all the PPS patient's to a Pain Clinic which they deal in reducing the pain to where you can stand it and have a somewhat normal life. They use a scale of 1 to 10 and they want you on the level 5. It took years for them to find the correct medicine's to get me of the level 5 and I myself would have to realize what would trigger a spike of pain on the level meter. You actually have to learn how to share your body with PPS. You also have to learn to listen to your body and what it is telling you, when you do something that increases your pain level for approx. 3 days. We call that a trigger, and we also have slide's when your symptom's start to get worse and hopefully your PPS,let's you body come back up to the approx. level of 5. You do not have to do anything to have a slide, it just happens. Hopefully you will come back up to where you were before you started the slide.

I have very serious pain in my hips, I do have medication's to ease the pain. The only thing one can do is to try to relax until some of the pain eases. You should also find out if you did something that created this extra pain in your hips. This is only if you did not have such a level of pain before, and you have had this constant pain in your hip's for sometime now. If it came upon you and it has remained with you, you should ask you Doctor to file the paper's for a motorized wheelchair. If it is a come and go pain, try to find out if it is something you are doing and not realizing that you are helping in creating this pain. It sounds like that your Doctor really cares for you and is trying everything in the book to help. He must realize that your nerves and muscles are deteriorating slowly, and there is nothing your Doctor can do about it. It is totally up to you, like I advise to people to take a nap in the early afternoon whether you need one or not. This is to give your body a rest, and give you some energy to spend with your loved ones and friends. You are 100% correct in what you state about a wheelchair. If you are going someplace where you will be moving around a lot, a wheelchair will come in handy of protecting yourself of more hip pain and other pain that you have in your body. I am glad that you stopped in, you are a automatic member, if you decide to be. Sounds like you have a lot of information to share with the other member's. Everything we use pertaining to PPS comes from our own experiences with PPS. We had nobody to help us out with any type of info. so we started this forum to help out ones who have walked on this bumpy road we have been on and to help ones who want to make it easier for themselves. Hope to hear from you again, I must apologize again for not being here earlier my chest cold would not let up until today.



From: Bigcrusher DelphiPlus Member Icon Posted by host7/24/08 12:21 PM 
To: VerleenS  (8 of 41) 
 1256.8 in reply to 1256.6 

Hi Verleen,
Welcome to our forum, I must apologize for not being on sooner I had a terrible chest cold that took me down. I must state a few tings about the treatment that you are having good results with pain. I say anything that helps with pain is alright in my book. But you have to realize, your nerves and muscles are deteriorating in your body. When I went for my third EMG, it took two days to finish because of all the secondary nerve's that took over for the ones destroyed, it was totally different road map for the Neurologist. I myself am very curious about this system of lowering your pain level. I have never heard of this before. At what age did you have Polio? Also could you please inform me of where all of you pain you were having, before you had this procedure? We are all classified as chronic pain patient's and the only way to help us was medication's that was solely for us chronic pain sufferer's and other's with other ailment's that create pain. I am interested in this procedure and would think the other member's would be also. I have been put through the wringer with new ways for helping one with pain, other's have too. All of them have failed except for the pain medication's. Just a few of them were, nerve blocks, cottle blocks, injections, tens unit, low level of exercise, etc. Nothing really did not work, what I say is how can you do anything which is deteriorating. These are the nerve's and muscle's where the secondary nerves that took over for the ones that were damaged or destroyed from Polio, and now they are being destroyed. We all found out that you can not build up, something that is deteriorating as we write this message? The Neurologist who performed the EMG, told me that many of my nerves are completely destroyed, and she had to search for the ones that took over for the destroyed ones, and she stated she will be lucky if she did. This is why my EMG took two days to complete. The old saying is "if you do not use them, you will lose them" or saying is "if you use them, you will lose them". We stay with low level exercise, like house chore's etc., to keep somewhat limber. If we over use our bodies, we get real serious pain from that and hopefully it subsides in three days or more. I am interested in this procedure, exactly what it does you did not say so could you please fill me in? Welcome to our forum, it is your's to if you decide it to be, or to visit anytime. Hope to hear from you.



From: VerleenS7/24/08 1:18 PM 
To: Bigcrusher DelphiPlus Member Icon  (9 of 41) 
 1256.9 in reply to 1256.8 

Hi Dave. I posted something about myself in another part of the forum. As for my pain and the NST therapy, I had intolerable, debilating pain in my shoulders, hips, knees and elbow. I had secondary pain in my muscles. The worst pain was in my shoulders. Even fentanyl (extremely powerful narcotic) and oxycontin did not remove the pain. I slipped into a coma because of the pain. I was diagnosed at the PPS clinic (Drs. Bruno and Zimmerman) with severe bursitis, but it didn't bother me unless I moved a wrong way. The severe pain was not like bursitis. I had it all the time, even when still. I couldn't sleep and sat in a chair all night. This went on for 3 mos. I was seriously thinking about suicide. The doctors told me that they were not going to give me any more narcotics when my current bottle finished. So I quit taking them immediately. Why continue when I wasn't going to get more and I didn't like taking them anyways. I then started my desparate search for pain solutions. I came upon NST and found a practioner 4 hrs from me. It was absolutely profound what happened in those 2 hrs. I came to her in constant, excruciating pain and left nearly pain free. When I came to her, I couldn't move my arm at all. I left able to move my arm much more, until I hit the adhesions in my shoulder.

I went back to her again when I was having some chronic pain in my arms and shoulders. Again, it resolved it. Now, you asked what it does. I assume you want me to describe the procedure? You wear lose-fitting comfortable clothes. You lay on a table/bed. The therapist proceeds with a gentle massage that will include your entire body from head to foot. In a certain way and it isn't like what you get with a massage at a spa. The NST massage works on your energy points and stimulates your lymphatic system. I'm not sure exactly how it works, except that is was extremely effective. She said most of her patients come to her as a last resort and are profoundly ill.

As for whether it would help you or others, it may depend on what's wrong. I don't know. The practioner that I saw treats all sorts of people with a variety of medical issues, who leave her with their pain gone or reduced, or other symptoms alleviated. Here are some links.

As for the cold laser therapy, I still use it when I have pain somewhere. This method stimulates the body to heal itself. It takes longer than the NST. The method I recommend first is the NST therapy.

Like you, doctors tried drugs and PT to help with pain. These did nothing. Well the narcotics did reduce it, but I didn't want to take them too long and the doctors weren't going to keep giving them to me. Acupuncture didn't work either. Neither did steroid shots. I never had to go the pain block route thankfully.

As for my neurological condition, I have had 5 EMGs, all of which showed more progression. The PPS clinic in NJ wrote a script to have a local physiatrist (Rehab medicine doctor) do my second EMG (2001). This doctor felt my DX of PPS was wrong. He said he hasn't seen neuron loss and damage like this except in patients with ALS. He has seen patients with PPS, but none have the loss that he saw with me. He said most muscles had maybe a handful of neurons left out of the hundred or so each muscle has. He felt I had ALS. Well I don't because I'm still

When I had the first EMG back in 1991 or 92, the news was devastating to me. The doctor tested muscles/nerves all over my body. He said he couldn't find on muscle with even 50% of the neurons remaining. He said most has much less than 50%. I also had quite a few muscles that were completely paralyzed. I have found the least helpful doctors were neurologist. In fact they did things that were more adverse than helpful. I will take a PPS trained, knowledgeable physiatrist any time. Dr. Zimmerman, who works for/with Dr. Bruno is a physiatrist.

Yes, I get pain and often its my own fault. I do something physical that I shouldn't and need to rest for 2-3 days, just like you. I try to tell my brain that when I do this, I could be causing permanent damage. I keep saying it to myself with the hopes that it sinks If I didn't answer your questions, please let me know with some specifics.


From: Sally (SARABOWLDEN) DelphiPlus Member Icon Posted by host7/25/08 12:22 AM 
To: Bigcrusher DelphiPlus Member Icon  (10 of 41) 
 1256.10 in reply to 1256.4 

Dave and everyone else with arthritic hip pain--a common finding in PPS folks, usually in the stronger leg. I'm now five weeks out, I'm having little or no pain and have stopped using my cane. I strongly recommend the minimally invasive hip surgery. Check out for and explanation and a list of trained surgeons. Also, Googling "minimally invasive hip surgery" brings up a lot of medical centers who do it.



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