intrathecal pain pumps/ nerve affected?

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momtofourangels
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Date Joined Apr 2010
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   Posted 2/27/2011 1:55 AM (GMT -6)   
I know that the moderators here ask you to look back and look for the past discussions on pain pumps. I pushed the search button and put in pain pumps and a lot came up but I wanted to read the latest ones that there are. Would you all that have a pain pump mind sharing what it's been like for you to have your's or any pages that I might go to to get information on them. I didn't know whether to look at Medtronic or not since they have recalled a couple of their's and i didn't know the reason for the recall.

The reason I'm asking i did a search on Google for them and the first page didn't have much of anything except some old ones where people had talked a little about them. There just wasn't much information. I was just thinking about the pain pumps tonight and i was going to gather up information and see if I would be interested in asking my doctor about getting one.

Do you all think I would be happy with one? I've thought about them before but I didn't do much research. I'm just worn out physically and mentally right now. I've had pains that I haven't had in the past. My hips have osteoarthritis and the left one has bursitis in it. They have hurt plenty of times, but tonight my left left betweeen my hip and knee has been hurting. My husband said it could be a pinched nerve, but I question that. Or could he be right? I don't know.

I know you all are not doctors, but what do you think about my thigh hurting? Does that sound like a nerve being affected? I appreciate you all's advice and support. Love you all my sweet friends.]

Big soft hugs,

Loretta

momtofourangels
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   Posted 2/27/2011 5:03 PM (GMT -6)   
How come nobody hasn't replied?

desert
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Date Joined Feb 2011
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   Posted 2/27/2011 7:39 PM (GMT -6)   
Don't worry 9yrschronicpain. This is a great group of people and I'm sure someone will be able to give you some info. It's just a question of when someone who has the correct information is online. I cannot speak to the pain pumps. I've never dealt with one of those.

Nerve pain is something I've experienced though. I can only tell you about my own experience. Nerve pain has a particular quality to it. Some people describe it as electric or burning or achy. What I experience I think White Beard hit it pretty well when he said it feels like bashing your funny bone. It can be constant or spiky or both. When my doctors started to suspect nerve issues, they sent me off for nerve conduction studies which involved a few needles and what I call the mini-tazer. It's really not bad and lets a doctor search for nerve issues pretty effectively.

Like you said, I'm not a doctor and unfortunately don't have enough info to even make a guess of my own as to your thigh pain being nerve related or not. One thing you could do is search 'nerve chart' on Google and see if your pain matches the regions you see there. I would ask your doctor though, next time you see them (unless it's severe enough to get you to go in sooner).

I hope you feel better and that everything works out for you.

-Jeff

momtofourangels
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   Posted 2/28/2011 12:37 AM (GMT -6)   
Thank you Jeff. I wasn't worried. I've been a member for quite a while, but just recently came back, so I know the older members.

What I was experiencing wasn't prickly or anything like that. It did feel like someone had hit me with a hammer or something. I'm not having the pain right now, so I'm hoping it has stopped.

I appreciate your reply.

Loretta

Chutz
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Date Joined Jan 2005
Total Posts : 9249
   Posted 2/28/2011 12:39 AM (GMT -6)   
Hi Loretta,

I'm sorry you haven't gotten an answer you've been looking for yet but it's the weekend and often people aren't online as much as they are during the week. Please refresh my memory as well as inform others....what is the origin of your chronic pain?

I happen to have a collapsing disk right where L5/S1 are and it pinches a nerve that goes down my legs. The pains go down the back of my legs and often the shooting pain ends at my toes. Not a fun jolt. But, I did some searching on thigh pain and here are some links and some quotes about it. I hope something in here is helpful.

Chutz

One site talked about sciatica as the cause of thigh pain. Here's a bit from their site and a link:

....'sciatica' means that there is inflammation of the sciatic nerve.... The sciatic nerve exits the lower part of the spinal cord (lumbosacral region), passes behind the hip joint, and runs down the back of the thigh. ..........

What are the signs and symptoms of sciatica?
As stated above, sciatica can cause both sensory and muscular abnormalities in the legs and thighs. Common symptoms of sciatica include:

o A cramping sensation of the thigh
o Shooting pains from the buttock, down the leg
o Tingling, or pins-and-needles sensations in the legs and thighs
o A burning sensation in the thigh

orthopedics.about.com/cs/backpain/a/sciatica.htm

~~~~~~~~~

www.buzzle.com/articles/sharp-thigh-pain.html

www.medtronic.com/our-therapies/drug-pumps/

www.fda.gov/MedicalDevices/Safety/RecallsCorrectionsRemovals/ListofRecalls/ucm243634.htm

This last one is about a new recall just out for one of the Medtronic devices. The search results for pain pumps are littered with lawyers trying to do everything from inform to terrorize people using pain pumps. Just read carefully and if you have any questions please call your doctor who implanted your pump or whoever you've been talking to about a possible implant.
Moderator on the Fibromyalgia and Chronic Pain forums
~*~*~*~*~*~*~
Daily Donnybrook: Fibromyalgia, Insulin Dependent Diabetes. Ulcerative Colitis, Rare form of Dermatitis, Collapsed Disk, Osteoarthritis (especially in right hand and neck) and a couple of other adjunct agitations.

"Gravitation is not responsible for people falling in love." Albert Einstein

straydog
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Date Joined Feb 2003
Total Posts : 16787
   Posted 2/28/2011 1:04 AM (GMT -6)   
Hi 9Years I have a pump and I am very happy with it. I really do not know what you are wanting to know about pumps, can you be more specific. You must go thru a trial & psych eval prior to the actual implant. When the trial is done you will know immediately if it is going to work for you. Medtronic does have a great website with a lot of good info. Yes, there are recalls, mine is on a recall but my pump did not cause me any problems so we left it in. And the recall did not mean that all pumps were defective either. None of these devices are glitch free.

I will answer any question I can.
Moderator Chronic Pain Forum

Post Edited (straydog) : 2/27/2011 11:33:26 PM (GMT-7)


momtofourangels
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Date Joined Apr 2010
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   Posted 2/28/2011 1:21 AM (GMT -6)   
Thank you Chutz. I forgot that people aren't on on the weekend like they are during the week. I have a compression fracture in my thoracic spine where I fell on frozen ground in March 2001. I have spinal stenosis, degenerative disc disease, bone spurs, and osteoarthrits in my spine. I also have osteoarthrits and bursitis in my left hip and osteoarthritis in my right hip. I guess I should write all this down because I could hardly remember what all I do have. I'm really forgetful.

love and hugs
Loretta

It's been about two years i think since i've had an MRI. I'm wondering if I should ask my dr. to refer me for one.

mrsm123
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Date Joined Dec 2007
Total Posts : 1235
   Posted 3/1/2011 1:32 AM (GMT -6)   
Loretta,
I think that the best suggestion to give you would be to first visit your orthopedic or neurological spine surgeon and get that thigh pain evaluated. You might want to consider lesser invasive options than a pain pump since I can't recall whether or not you have tried a spinal cord stimulator or what other methods of pain relief that you have tried. A TENS unit or a change in your medications, injections? Any of those modalities usually should come before a pain pump is considered.
Another MRI might be suggested since you said it has been two years or more since the last one you had.
Before you go down the road to implantable pain treatments, you really should explore surgical or lesser invasive options and modalities.
Sandi

Retired Mom
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Date Joined Feb 2010
Total Posts : 1753
   Posted 3/1/2011 7:19 AM (GMT -6)   
Hi 9,

I have been trying to do better by responding to so many posts, but I just don't know anything about pumps. I probably need to find out though because things are getting so much worse lately and I'm getting really depressed about it...not to mention the stomach isn't holding out very well with all the pain meds.

I'm sorry I didn't take the time to at least post some encouragement. I always enjoy your posts. Sorry for the delay. I was busy with some little girls this weekend and I got behind then too.

Good luck my friend. Please keep us posted and let us know what you find out. All the older stuff is interesting, but I've done some reading lately about the medtronics that wasn't so great. I think is was a gov't reasearch project. Please bing or google it and see if you can find it and I will too.
Failed fusion L5-S1, Pituatary damage, HGH Def, Fibro, Bladder surgery failure, Nissen Failure, GERD, OCPD, GAD, MDD, CTS (Bilateral Surgery completed), CFS, TMJ, Migraines, Vit D, A, Magnesium deficiency, Pre-glaucomic (sp?), HBP, Idiopatic Reactive Hypoglycemia, Edema, too many Drug/Food allergies, sensitivites, and current meds to list.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 3/2/2011 6:35 PM (GMT -6)   
Hi 9 Years, most people that have the pumps implanted are ones that are at the end of the road, meaning there is nothing out there that can relieve their pain, procedures and injections that did not help lower the pain and no medication left to do the same.

I have had my pump since June 2005 and it has been a long rocky road to get to where I am at today with it. My PM dr that had the pump implanted was not qualified enough to be handling pump patients. He was grossly under educated on how these pumps are designed to work, or how to make them work at their peak performance and the same with the medications used in the pumps. In other words, your dr can either make your pump a success or a failure. He quit PM and went back into anesthesiology and found another pump dr willing to take his 45 patients on. That was a blessing in disguise as our new dr has over a decade of experience with pumps and knows them like the back of her hand. She is a retired neurosurgeon and she use to implant her own pumps before retiring from surgery.

Now, my life is much better thanks to having a dr that knows what she is doing. Oh, I still have pain because we will never be pain free unless we experience a miracle of some sort. The pain is more tolerable than it was before. I am given medication for BT pain and you do get BT pain with a pump. If a dr ever tries to tell you there is no BT pain with a pump, run as fast as you can from that dr. It can take up to a year to get your pump working at its peak. You are started out on the lowest dose of meds and slowly increased till the dr can find your magic dosage. The key to a successful pain pump is a dr that knows how they work and knows how to make them work.

My next pump will not be a Medtronics pump. It is going to be a pump made by Codman. The pumps runs off of a gas within the pump, not by a battery. You do not have to replace the Codman pumps like the battery operated Medtronics pump and I really like the idea of no more unless the unit were to fail.

If I were you, I would visit Medtronics website and look and see if your condition is listed as to something a pump may help. I think they have the best website for finding out general information on how pumps work and such. My pain is from the L5/S1level from DJD and problems with my facet joints. My pump only covers pain in my lower back only. For instance, a little over a year ago, I fell and broke my arm and the pump did nothing for the pain and I had to use oral medication for that problem.

The pumps come with their set of problems. To me the the biggest problem with having a pump is if you want to switch PM drs, its not easy. First you have to find a dr that is willing to accept a pump patient and that is hard to find. Most drs will not take a pump patient unless he is the dr that ordered the pump to be put in. I do not know if it is liability issues or what but changing drs is a real problem. Another problem is it limits you on having MRI's because they are done with magnets and those can mess up the settings on the pump. Medtronics has a particular MRI machine that can be used with their units from what I have read.

Good luck on whatever you decide to do. If you have any more questions just post them.
Moderator Chronic Pain Forum

momtofourangels
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Date Joined Apr 2010
Total Posts : 2265
   Posted 3/3/2011 4:13 AM (GMT -6)   
Thank you for all the good information Straydog. I was here and I remember when You were going thru all the crazy stuff with your pump. The dr. giving up pain management and you having to find another dr. to handle your pump. Thank God you got that straightened out and your pain is much better. It's good that you can have break thru meds with your pump meds.

I'm just curious, what meds are in your pump and what meds do you use for breakthrough.

I think I'll check out the Medtronic website and see if my problem is covered with the pump.

I'm just gathering information at this point, but thanks for the information that you provided and tell me your story.

Take care and I hope you're having a good night's sleep.

I sure didn't know that you broke your arm. How did that happen? That must have happened while I was gone from the forum. How is your arm doing? Is there any residual pain from it?

Well I'll go for now.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

straydog
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Date Joined Feb 2003
Total Posts : 16787
   Posted 3/3/2011 3:01 PM (GMT -6)   
9 Years, my prior PM dr the one that left is the one that found my current PM dr. He referred all of his pump patients to her, otherwise we would have probably ended up with no dr to care for us. When he announced he was leaving I assumed one of the other drs at the clinic would take over my care and that is when I learned from him other drs do not like to take a pump patient on that already has a pump. That was something that was never discussed with me prior to the pump being put in.

I have Dilaudid, Fentanyl, Bupivicane & Clonodine in my pump. My BT medication is Dilaudid. I am an oxygen patient and had been off of it a while and got to low, that is what caused me to fall when I broke my arm. Dumb move on my part, lol. Yes, I had a lot of problems this past winter when it got cold with it and was really surprised at how much pain I having with it. Due to my age the orthopedic said when it was healed it was as good as it was going to get. I really felt like it could have healed better than it did. I can't lift much more than an empty coffee cup with my left hand, I have no strength it in. I did go to physical therapy and did a lot of home exercises in addition to what they showed me. Their PT group was not a good one as far as I am concerned. Basically all they did was hand me sheets of papers with exercises to do. I had a different person every time I went who knew nothing about my arm. I quit going because I knew how expensive they were and I was really the one doing it all at home. Medicare has a limit on what they will pay for PT per year and I was at the limit. Had they been a good facility I would have stayed and finished out but that was not the case.

Do you have an appt scheduled to see your dr about the leg pain? Take care.
Moderator Chronic Pain Forum

momtofourangels
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Date Joined Apr 2010
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   Posted 3/3/2011 10:23 PM (GMT -6)   
hi Straydog

I'm sorry that you don't have better strength in your hand. That physical therapy clinic doesn't sound like a very good one. I thought they are supposed to do exercises with you and it looks like you would have had the same therapist at every appointment. It sounds like you got the short end of the deal. I hate that your arm didn't heal better. Did your dr. say why it didn't heal better?

I stepped off the bed a few years ago and fractured my right foot and ankle. Crazy me didn't go to the er or anything. I waited and got an appointment with my pcp. He did an xray and said that it was fractured. I wasn't surprised because it hurt like the dickens. I was walking around with my cane. He ordered me crutches and a support thing but I never went to get a cast on it. I do have problems with it, but not like I thought I would. In a few weeks, he sent me to a foot dr. and the dr. said it was healed. My ankle is hurting tonight but it usually doesn't bother me much. I guess I'm really lucky that I didn't end up with a half healed ankle and foot.

I haven't made an appointment with my dr. for the pain in my thigh yet. I had one with her yesterday, but my medicaid transportation never picked me up, so I had to call and cancel and make another appointment. The appointment was for my annual exam. I was going to talk to her about it at that appointment. Now my appointment is March 18. I don't know whether to wait til that appointment or call and see if I can get in with the PM dr. The PM dr. has my pcp prescribing my pain meds after she got me stable, so I don't know whether she'll see me or what. I'm really confused about it. Do you think I should call and see if I can see the PM dr? I don't know what to do. My back was doing rather good painwise when she started letting my pcp prescribe my pain meds and now it hurts worse than it did. I guess I should call and see if I can see the PM dr.

I hope you're having a low pain night and that you'll get good sleep.

Take care.l

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

straydog
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Date Joined Feb 2003
Total Posts : 16787
   Posted 3/4/2011 2:29 PM (GMT -6)   
If I am remembering correctly, didn't the PM dr say he was very busy and this is why he did not take you on as a patient, instead opted to work with your PCP on pain meds? I may be totally wrong on this so correct if I am, lol. Some days the memory is not so good. If it were me I would call and make an appt with my PCP that way if she/he feels you need to see a specialist a referral can be made. Not only that but this dr knows your history better than the PM dr. Thats too bad your ride fell thru on you, I hope you called them and let them know they dropped the ball on that deal.

The PT facility was the pits as far as I was concerned. I did tell my orthopedic about how you never saw the same therapists and every time you had to sit and go over what happened and what you did the day before when you come in for PT. I told him I felt like I spent way too much time repeating myself to people rather than the time being spent on helping my arm. I told him I was use to always having the same person every time you went and this never happened there, it was like they had people that were constantly filling in from the hospital, which most of them worked at the hospital rather than there. I got a card in the mail the other day from the orthopedic, he has moved his office. I was referred to him by the ER dr and I really liked this dr. I have kept his new address in the event I need him again which I hope I don't, lol.

I hope you can get something going on so you can find out about this new pain.

The ortho said the bone that I broke is not the typical bone that gets broken in a break in the arm. Boy, thats a tongue twister. My age is another factor, I was 56 when I did this not exactly a spring chick, but not totally over the hill either.
Moderator Chronic Pain Forum

momtofourangels
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Date Joined Apr 2010
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   Posted 3/4/2011 3:20 PM (GMT -6)   
The name of the place that the PM dr. works is called RehabNY. I called there because I couldn't find another PM that took medicaid. The dr. told me when she got me on the right amount of meds and I was stabilized that she would ask my pcp to take over and prescribe my pain meds. I decided to go there and give it a chance because she was the only PM dr. that I could find at that point that would take medicaid. It's been working out ok until now when my back decides to hurt worse and my thigh decides to chime in too.

I did call my transportation and told them that the driver didn't show up. They said they were sorry for that happening.

Now I'm sitting here wondering if my pcp would see me before the appointment because I had to rescedule. I guess I won't know until I give them a call.

Being 55 years old isn't that old. It looks like you would have still healed ok. I hope you can get more strength in your arm. I know that must be really hard not being able to use that hand very good. How do you get things done with your hand being so weak? I guess I'll change subjects because I'm sure it's pretty depressing.

I hope you are having a low pain day. Take care.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

straydog
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Date Joined Feb 2003
Total Posts : 16787
   Posted 3/5/2011 6:21 PM (GMT -6)   
9Years, I did get some strength back in not just my hand but the entire arm. The day they took my cast off, I was shocked at how much pain I was having within minutes of the caste being removed. I was not aware this would happen. I was put in a brace as soon as the caste came off. Then I saw how the skin was just hanging off of my upper arm and nearly lost it, lol. In 6 weeks I had lost the muscle in my upper arm and that skin hanging looked like the arm of a 90 year old woman, lol. I have since built nearly all of the muscle back up in the upper arm. I had broken the other arm when I was a kid and did not have none of the problems I experienced this time around, and it was just more proof that as we age it is harder to bounce back from certain things and sometimes we don't bounce back at 100%.

I have carpal tunnel syndrome and ulnar nerve entrapment in both arms. Because the nerves have been damaged for so long, it is not unusual to not have good strength in the hands and arms. Like most things, you just deal with. I use scissors now to open packages with, no more trying to tear them open. I let the husband take lids off of stuff for me, sometimes I just have to be a little more creative.

Have a good weekend.
Moderator Chronic Pain Forum

momtofourangels
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Date Joined Apr 2010
Total Posts : 2265
   Posted 3/5/2011 9:45 PM (GMT -6)   
wow. i didn't realize you had those in both arms. it's good that you got strength back and have learned to do things the best that you can. i bet it was a real shock to have your skin hanging down like that when they took the caste off. Do you still wear the brace or has it been long enough that you no longer need it? I bet the carpal tunnel syndrome is really painful in itself without having the ulnar nerve entrapment too. I hope you're having a low pain night and that you have a good weekend.

It's raining here and my back has been screaming at me all day. It's supposed to start snowing sometime tonight and snow all day tomorrow and tomorrow night, so I don't know when I'll get some relief. I bought something new tonight to try on my back and see if it will help. It's called IcyHot patch. I sure hope that it helps. I think I need my Fentanyl patch increased, but I'm scared to ask my dr. to increase it because I'm afraid she won't want to. I had good success with the patch at 50 mcg. up until about 2 or 3 weeks ago. I guess I need to ask my dr. about increasing it but i'm afraid she won't want to. I have Oxycodone for breakthrough pain but I can't tell that I even feel any relief when i take those.

Well, i'll go for now. Take care.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 16787
   Posted 3/6/2011 7:26 PM (GMT -6)   
Shocked was not the word for hit my mind when I saw the skin hanging there like that, lol. But, it was further proof to me that you just have to keep on keeping on when you start getting older. One of the key things to building the arm up with that skin was using one pound cans and doing exercises with those. It does not sound like much but it was at first because of the weakness but it works great at rebuilding.

Yes, I do still wear my brace from time to time especially when it starts aching. When it got really cold here this past winter I wore it a lot and whenever I use my hands a lot I wear it. Different things aggravate it. After the break, I developed a ganglion cyst in that hand right at the wrist area and some times that thing will just thump. I am not real interested in having it removed because they tend to come right back. Everyone tells me to take a heavy book and slam it and that will break the cyst up but I will not since its the one I broke. Yes, I do know of people that have done this to get rid of the cysts, lol. Sounds barbaric but it can work.

I am in Tx and we get very little snow, mainly ice storms. But, we are having spring weather, here the daffodils are in full bloom with flowers. My perrenial flowers are all coming up and I am working in my flower beds getting them cleaned up. I do not do the cold well at all.

How long have you been on the 50mcg in the patch? If you have not been on that dose very long your dr may not increase it just yet. If you have been on it awhile, then you need to let her know that it is not handling your pain. If you don't tell your dr then they think all is well when it isn't.

I tried IcyHot years ago but it just burned my skin up. It was not the patches either just the creme stuff. I use Tiger Balm, have for years, it seems to work well for me. I did see here not long ago they have also come out with the patches but I have no idea if they work or not. It works well for muscular problems. When I am working in my yard I use it alot because I use muscles that I haven't in a long time, lol. My old massage therapist is the one that introduced me to Tiger Balm.

Take care and you may want to let your dr know you are not doing well.
Moderator Chronic Pain Forum

momtofourangels
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Date Joined Apr 2010
Total Posts : 2265
   Posted 3/7/2011 2:20 AM (GMT -6)   
You lucky duck you. I would love to come to your house and see the flowers. This is the first time we've had a deck (live in an apartment). I can't wait until it's warm enough to start planting one of those long things that you put up on the part that goes up the side of the deck. I've been wanting outdoor flowers for so long and now i finally get to have them. I just can't wait. I sure wish it would hury up and warm up so that I could at least get started a little. I'm sick of this cold weather. It seems to be on a loller coaster the last couple of weeks. A couple of days will be cold, then two or three will be warmer say mid to upper thirties to mid fourties, then cold again for a few days. and then it starts over again. I used to didn't care because we didn't have a balcony. We lived in a basement apartment, but now I wish it would warm up so I can open the sliding glass door and let the fresh air in. I love the snow, but I'm totally sick of it now. This winter has been so weird all over the country, hasn't it? The arctic air usually comes into the midwest and into the great lakes, but this year it went all the way to the coast a few times.

I know you guys had snow storms and ice. Yikes. I know you hope that it over and done with.

Yes, I need to let my dr. know that I'm not doing well. I just to have to get my butt on the phone and tell her. I'm not used to doing good things for myself, I guess. When I lived with my father he emotionally abused me and I went thru a lot of him tell me things that weren't true. It was horrible. Now I have a hard time doing things for myself when I need to. I guess I have to gain some strength and do it. :(

I hope you're doing as good as you can under the circumstances. I wish we all could get together and form a chat on yahoo messenger or somewhere that we could chat with each other. I know we have the chats here, but it's just not the same to me.

Well, i'll let you go. You take care my friend.

love and hugs
Loretta
Dx: osteoarthritis, bursitis in left hip, Osteoarthrits in right hip, compression fracture in thoracic spine due to falling on frozen ground March 2001 , ddd, spinal stenosis, bone spurs, osteoarthritis in spine, osteoarthritis in both knees
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