Showing posts with label lumbar pain. Show all posts
Showing posts with label lumbar pain. Show all posts

Monday, May 23, 2016

Brand New Clnical Trial for Those with Lumbar Lower Back Pain!

Brand New Clinical Trial starting sponsored by Cure Click for Lower Lumbar Back Pain


New Clinical Trial Medication Out for Lumbar/Lower Back Pain! Maybe an alternative to your current medications or maybe an alternative to surgery! Be Sure to Check It Out!


http://curec.lk/1XNLqKo


#LowBackPain



Saturday, May 9, 2015

Second Guessing Your Autoimmune Disease(s), Is there a "real remission" to some of AI's - Sjogren's, Lupus, RA, and more...

As I have waded MANY times through the entire "list" of autoimmune illnesses, diseases, syndromes and disorders, again I go back to the spot where I have to wonder: #1. Is my diagnosis correct? #2. Is there another 1, 2, 3 and so forth of AI's that I have, and if so are they being "managed" by the other medications I am on? #3. Are my entire entourage of physicians correct and have they done the proper testing, given me the right medications to help me gain me "control" over further degeneration, more pain, and one day truly feel like I have possible remission? Is there even anything such as "true remission" on some and/or all of the AI's? Is "this" (whatever stand in time I feel I am "at my best as far as being symptomatic) and I will just go onto endure all that is not alleviated as far as pain, future health issues, more pain, and less of a way to fight these illnesses? Does the medications that I am on now, or the ones I had been on, and other types of treatments, therapy, surgeries, and so forth truly mean my "health future" maybe "brighter"? Or I am, along with my physicians and so on, really making a true difference in how I am effected in the long haul of the future?

I KNOW for myself, and I will say probably the majority of patients, caretakers, spouses, families and friends ALL have these thoughts go through their minds. If like myself, this happens quite frequently; especially if you feel you have not made much progress in getting symptoms, fatigue, inflammation, pain, and others where you feel you have reached a comfortable level of relief. As any pain specialist, or probably any type of physician will tell you, there is ONLY so MUCH that can be done. For some, like those with Multiple Sclerosis (MS), it appears there are many more available treatments, more doctors that are familiar with the disease, and you hear fairly frequently of MS patients going into remission, and some for years.

Yet, as far as RA, Lupus, Sjogren's, Raynauds, Diabetes 1, Pernicious Anemia, Addison's Disease, Still's Disease, and the others, not so much. Usually those of us especially with "multiple" AI's never seem to feel as if the diseases are under control. We may feel that way for a week, or even a month or two, yet for me, each and every morning I put a foot to the floor, the RA pain is there. Now some days are better than others. We also know for a fact, weather, stress, jobs, family, and what we do, all have an effect on just how much "relief" we have from one day to the next. Brain Fog is one of those that rather than feel as if I maybe moving forward, I seem to be regressing further into the fog. Month after month I can tell by the way I do things on a daily basis, that the "fogginess" of Lupus, RA, Sjogren's, and such tends to get worse, not better. I am making many more lists, I must go through and reread paperwork over and over again. At times, even seeing something online, I can't recall it, or I walk into a room, and can't remember why I am there in the first place! I tend to leave things "half done", only later to come back and see, "Oh, I didn't finish making the bed", or I never watered all of my plants... possibly Mom asks me to look something up, and if I do NOT write it down, it's as good as gone by the time I leave her house and drive a whole 6 or so blocks to my home. Of course, there are many more little "things" that either I do, or don't do.. and I realize it is due to the Lupus Fog...

As far as the 2nd guessing, I am quite sure I have probably took my symptoms, as they come up, and now several new ones are popping up, and go all the way back to "square one" to research the entire ordeal. Do I really have Lupus, RA, Sjogrens' Raynauds.... and so forth... OR do I have Myasthenia Gravis, some type of "regional pain disorder, compression fractures in my lower back causing severe pain in my hips and legs. Maybe I have a hip that is totally worn out or getting that way. Much like my knees, I've had one hip give me "the blues" on several occasions. Enough that it sent me to my Orthopedic Surgeon so he could put a huge needle full of corticosteroid in it. Usually, that would work. My knees, shoulders and elbows were much the same way. I would have a huge bout with my shoulder or elbow, or knee and I would go in, get an injection into the joint, and I may do well for a day, week, month or years! OR like my knees and shoulder did, after so many injections over the years, and several arthroscopic surgeries on them, I had to have both knees totally replaced, as well as my right shoulder. My elbow has had surgery and has screws in it, and I know it has torn loose and really needs a "scope". I fear though it would be just like my knees and shoulder, the doctors does a scope, and he sees it is totally worn out, totally degenerated.. so "fixing" it is impossible. So, like my knees and shoulder, I went for years, as long as I could stand it, and the injections helped, then I had them completely replaced. You reach a place that you know there is no way you can put up with the severe pain, the loss of range of motion, the weakness, the inflammation... so you make your choice.

I've never regretted ANY of my joint surgeries. Each and every one, from the scopes, until the total replacements, gave me the relief, more strength, better use, no inflammation, and was a great deal better, than not having them replaced.

But, any type of joint surgery, even with the arthroscopic ones, there is never a guarantee you will be "better".... it could mean it may not help at all, OR you have complications, or possibly it feels worse. Now, once you have a TKR (total knee (joint) replacement) that does provide relief, stability, range of motion etc.

But, with the scopic types of surgery, as incredible as they are... and also as incredible as our CT scans, and MRI's are.... NEVER did ANY of them give my doctors the "real story" in my joints. Once they "opened" the joint up, then is when they discovered my joints were totally gone, in no way able to be repaired or "patched" up. I've had my Orthopedic surgeon tell me that over and over again. As good as our tests are, sometimes they do not give the big picture.

My neck was a prime example. I went for YEARS with severe neck pain. I was not able to turn my head very much, or bend it forward or backward. I constantly had severe pain in my shoulders, especially my right shoulder and shoulder blade. I went through numerous tests, from the MRI's, the CT Scans with the dye, regular X-rays, and even a couple more tests to check for nerve damage... EMG's and so forth. They found some nerve issues, both in my legs, and down my arms, yet I jumped from one specialist to the other, with every test, every scan, all of the tests they done as far my nerves.... yet it took me forever and a day to finally CONVINCE a very astute, very stubborn and head headed, yet the very BEST SPECIALIST in the area of not only joints, joint surgery and replacements, BUT he also knew spinal surgery, better than any other doctor I can remember.

After FINALLY getting him to do the "reverse shoulder replacement" on my right shoulder, the first 8 weeks I was truly amazed......


It was not long after that, my shoulder blade on that side, began to feel as if it were burning. Of course I had the shoulder totally replaced, so the "searing" pain (unless something happened like an infection) should not be giving me problems.

Again, back to the same Orthopedic Surgeon, who just DESPISES "educated patients". He just think HE is the "master" over all things "ortho" and we as "layman" don't know "crap"...

I've told my own story over and over about his horrid "bedside NO manner"... as before when I went in to tell him what was happening, he swore that the pain should not be coming from my neck. Well, I totally knew unless like I said there was an infection in the joint replacement, OR the huge bundle of nerves that run right along in that area, and out to the shoulders, shoulder blades, arms, and so on had something wrong. Which "could be" but was not likely.

Again, we go through a special "scan" of my neck. It comes back with C-3 through C-4, C-5 and C-6 having issues. Exactly how much, well from the pain I was having and looking at the CT scan with contrast, showing "bulging, and a few other issues, the 4 level "replace 2 discs" and fuse the other 2, is what was decided. He was set even with my shoulder, that if he got actually into the "joint" (right shoulder) and he didn't see nearly enough damage then he would "repair" it and not replace. But, all cards on the table, said "reverse replacement". So, the "new shoulder" was waiting for me before the surgery. Sure enough, after being able to "see" the severe damage, there was no question a reserve total shoulder replaced.

Albeit the same with my cervical spine. There was a great deal more damage "inside" that the scan didn't pick up, which meant he (and I) were right on with the "replacement/fusion) discectomy. By the time I came out of the anesthesia, I already knew I was 100% BETTER!  Even though it was the quickest surgeries for me, as far as very little pain, etc after surgery, it was 6-8 weeks before I could do much of anything but walk. Which kind of was "bad". Because it "felt" so much better, I had to be careful and watch myself. It was a miracle.

Later he came in to tell me what he found etc, and that I actually was pretty "right on" with my own "diagnosis"... thus that kind of helped for the both of us as far as NOT feeling like he needed to make me feel crappy just because I do my "homework".

Now of course is a totally different type of problem. Not one that is easy to face, nor easy to diagnose, and also one that many, MANY times said "I WOULD NEVER" have my lower spine operated on. Due to ALL of the bad things, from online, from people you see and know... it was something I never wanted to even have to give thought to. Well, here I am once again wondering what will have to be done in this case.

So, that is why I am questioning EVERY diagnosis, every thing I have read, researched, been told, by both other patients and doctors also... whether remotely that I even want to have the "discograph" or whatever they call it. Yet, even sitting here now, I feel that "pain" that is so very familiar. If I sit for a while, it begins that burning in my lower back, butt, and down my legs. I still feel like my hips are a part of the puzzle, but he insists my hips aren't causing this kind of pain. Of course he takes an X-ray, that basically says the same thing that the CT Scan I had about 6 weeks ago says, thus this stupid invasive "discogram" will probably also show the same... The TESI (Transforminal Epidural Steroid Injections) worked for a few days, thus that "tells them" that are hitting the mark. That is "a part" of this. Yet, I am still convinced my hips are also a part of it also.

So, the "gram" is set up at the end of May around the 27th. Everything else going on left me with no choice but to make it a couple of weeks off. First of all, again I will have to have my son drive me. I can't drive after having it done. And Jim can't drive and no way my Mom could drive in Dallas. She does well to drive to the market and back in Ennis!

So, I am now kind of "fed up" with all of it. My hopes are the pain will cease and desist, so I can go on and enjoy my summer, and not be down with a freaking major surgery.

Plus who the hell is going to take care of me, and the house, etc??? Jim can't do a lot of things as it is, and no way would I have some stranger coming in to help us, while I recover.

So, there are lots and lots of things to consider, before jumping head first into this quagmire of tests and surgery!












 























Friday, April 24, 2015

When the Physicians Allow You to Hurt Like Hell - and play this "hurry up and wait" Ordeal - Intractable Pain....

I did not finish this BEFORE leaving the page yesterday, so everything I wrote after this initial post was lost. I had asked if anyone had one of these "discograms".... and if so was it as bad as what I am reading? It just seems like this is not a test to take lightly. Plus you may end up in worse pain than you already are. I went to my Orthopedic surgeon this week. He was the one that actually put my new right shoulder in and then done my 4 level neck surgery about two years ago. As awesome of a SURGEON AND DOCTOR as he is, he "patient repoire" SUCKS!! He "hates" an educated patient. I had written before that him and I have gotten into it, before he did my neck surgery. I had given him my own thoughts after doing a great deal of research, even on the "reverse shoulder replacement" and he just didn't appreciate "me" a layman, even attempting to let him know my thoughts on the situation. He basically told me I was "stupid".... and later on, after the surgeries were done and MOST OF WHAT I SAID, was TRUE about my situation, he had in his own weird way had to 'APOLOGIZE" for making it sound like I was stupid. I never got a total I am sorry, or apology, but in his own way, he kind of smoothed everything over. Anyway now I've found more information on "sacroiliitis.... that sounds also more like what is going on with me and my very lower back, almost at my tailbone, and then into both hips and traveling at times down to my knees.... I just did some research on it, after a doctor in CA had "tweeted" me about what I posted about my lower back and hip pain... I found out this issue often is looked over, and the doctors "miss" that this is the issue, and blame it on a lumbar spine thing instead. Well, as I've told both doctors now, I feel I have two issues.... maybe my very lowest lumbar vertebra and my S-1 -S-2 have issues.... BUT there is something going on with my hips themselves, or another issue causing the severe hip pain. He had the audacity to tell me that the severe pain I was having in my hips, no way could be caused by bursitis... or the like... which is bull... I KNOW I've had hip bursitis several times and it hurts like hell!!! Now here I sit, in fact I just tried the very "test" this doctor said to try in order to see if this is possibly this sacroiliitis or not. And both sides put me almost in a scream to try and "test" to see if that is the cause. So, now here I am NOT gotten any relief and in fact, I am WORSE TODAY!!! And I don't see my pain doctor until next Thursday. I am in tears with severe pain. It matters not if I sit, stand, walk... right now the sitting is the worst. But, if I go out and walk a bit, then it also hits me like a razor sharp ball of fire into my very low buttocks, and hips, then down the sides of both legs.... I cannot take much more of this crap.... I am almost to the place of intractable pain again..... Why is it, no matter how badly we hurt, it is always this "hurry up and wait" game with physicians????
I've done enough research through out all of my chronic illness and pain issues now for so many years, I could almost be a doctor myself... or a pretty good researcher....

Yet, this is beginning to be the end of how much I can take. I realize ANY of us are in all types of pain. Often we are in such an overload of it, we would do just about any and everything to stop it.

What do you do? We know that going to an ER with "chronic pain' is just about like peeing out of the back of a moving truck bed. We know that most of our physicians, want to do a billion dollars worth of tests, scans, injections, treatments, and all or none may work or not work. I have said over and over again, that no matter where they have ever done "CT Scans", or MRi's, EMG's, EEG's.... all types of nerve tests... blood work. and yes there is some thing that show up. Yet, only when a surgeon FINALLY GOES IN - that is when they see JUST HOW BADLY MY JOINTS ARE SCREWED UP!

I've been told that by several of my physicians over the years. So, again, I will repeat, since it is worth repeating, TESTS DO NOT ALWAYS mean they are TRUE AND CORRECT! Tests are usually as good as the person doing them, and then whomever does the reading of them...

A very good example just happened to me this week. I had a CT can about 4 weeks ago, on my lumbar spine. It did show some problems in my lumbar spine, and although not just HUGE issues, my pain doctor said it could be enough to cause the pain I am having.

I go to my Orthopedic Surgeon this week. He was "supposed" to have a copy of the CT Scan. Somehow, between me going into that building, and seeing him in his office, my CT Scan results suddenly disappeared. I KNOW it was there with the paperwork I brought in. I saw it, and I said it twice or three times... his office somewhere lost it, put it in another chart or something. BUT, He did DO regular X-Rays on my lower lumbar spine and hips. He could tell me MORE by regular X-rays about my lumbar spine, and so forth THAN THE CT SCAN EVEN WAS SHOWING... and He had NOT even seen the scan. So, that just goes to show, with a simple couple of X-rays, a physician that KNOWS what he is looking for, can sometimes find something before ordering other very expensive, more invasive tests! I thought he had been reading the CT Scan. Then he mentioned about possibly having one done. I said well I just had one 4 weeks ago and I brought it in with the rest of that paperwork. Of course NO he had not seen it, but it did see the problems. He began to tell me that due to the extreme amount of pain I was in, there was no way that my hips could cause the pain. I say BULL! When I was this bad before, my hips were injected into the bursa with corticosteroid and it worked, two times at least. 

Anyway, it went on to prove to me, in all honesty, when a proper physician sees some tests such as this plain X-Ray.... they can go by that and what the patient says, rather than order $1,000.00's of dollars worth of tests, that if not read correctly would not show how bad it really was.

So, I have tried just about any and everything to "keep my mind" off the pain... between baking, writing, doing emails, reading and so on... nothing is helping. Here it is Friday afternoon, and I have another week to put up with this mess.....

Could I scream????!!!!! YOU BET I COULD!!!!!!!!!