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#1
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I'm frustrated. As all get out.
I'm still "too young for back surgery" - I'm 30. To give some back story to this, I have: - L4-L5 herniation - Facet Joint Degeneration - Sciatica - Numbness/Weakness (usually mild) in legs and hips, sometimes even hands I'm starting to suspect I may have a second ruptured disc, because my arms are now going to numb randomly too. I've been in pain my WHOLE LIFE literally due to my back...I was born with mild kyphoscoliosis. I literally have a bone in my lower spine that you can hear crack across the room if I move wrong and it hurts like the devil. I'm also a recovered pain pill addict, but I'll be completely honest - for the first time in two years I'm considering pain medication and I don't want to. I feel as if everyone is ignoring what I'm saying - that I'm losing the last of my youth to my back. Am I overreacting? I haven't gone into this lightly. I'm tired, don't want to become an opiate addict all over again, and want to have as much mobility as I can for the rest of my slowly slipping away youth. Am I being reasonable? |
#2
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Let me tell you a few things about spinal surgery. First, spinal surgery ONLY fixes the mechanical things. It does NOT relieve pain. Most of the time you're left with the same pain or worse! So do NOT expect your pain to be relieved after surgery. You will STILL need to be on pain medication.
Secondly, after surgery whether it's fusion or not, the levels above and below the surgery site WILL FAIL, because they have to take on more of the load. That means that somewhere down the road you will need MORE surgery. ![]() There have been recent studies that have shown that people who have had physical therapy have gotten the same results as those who have had fusion!!! Now I don't know about you, but I'd sure rather have physical therapy than go thru a long, painful surgical procedure, that entails a LONG recovery period!!! I have had 2 OPEN surgeries that kept me from going back to work full-time for 6 MONTHS!!! I went back to work part-time after 4 months, and that was painful. I was on my feet all day, which didn't help. When you have spinal surgery, you DO have to give up some things that you used to do. Your doctor will give you restrictions based on what your prior activities were. For instance, I can no longer ski. (obviously) I am not supposed to vacuum or rake leaves. I cannot lift anything over 5 lbs -- although I do. You have to sometimes in life. ![]() Before you even THINK about surgery, you would need to get AT LEAST 2 other opinions from other doctors. I'm not sure you'd find a surgeon to operate on you with your current problem. Personally I think physical therapy is the best option for you. And I think you'd probably find A lot of RELIEF from therapy. So as for a referral to physical therapy -- especially POOL therapy. I'm sure you'll get some relief. God bless and please take care. Hugs, Lee ![]()
__________________
The truth shall set you free but first it will make you miserable..........................................Garfield |
![]() MandiePoo
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#3
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I was reading your post and the reply below and felt i may be able to help by giving another perspective.
First off pain medications are not the answer. They may help in the short term with pain but I'm sure as a recovering addict you are aware of the overwhelming negatives of being on pain meds. One that you may not know is that more recent evidence demonstrates that long term Opiod use cant actually increase your pain. Back surgery is performed too often in our society. There are times when it is appropriate ( more to come) but too often it is used in attempt to relieve pain. What Science and Evidence has shown and what our society has yet to accept is that pain is an output from your brain and not an input from your back. I need you to understand that I am not saying that you are making this pain up or that you are "crazy". Your back sends a "message" to your brain saying that something is going on and your brain decides whether it is painful or not. When pain becomes more chronic you don't necessarily even need those "messages" as you start to associate certain activities or positions with the same pain. When they do the back surgery they only address what is going on with your back. That is why back surgery can be ineffective in treating chronic pain. There are some instances when surgery is appropriate for back pain, but in my opinion much less that what it is currently practiced. You mentioned that you have weakness. There are different kinds of weakness. Most times general weakness in your legs and hips is due to inactivity or possibly secondary to the psychological/ emotional effects of pain. If the weakness is more specific to a certain muscle group, is consistent, is getting progressively weaker and is correlated with the level of your herniation ( your physician/surgeon should be able to tell you this) then surgery may be indicated to prevent permanent nerve damage and muscle atrophy. As a health-care professional I think it is unprofessional and irresponsible to give you specific advice for your condition on an internet message board. But I hope giving you some general information will help . Stay active, breathe ( there is a great response in the post about the pregnant woman a couple threads down regarding breathing and mindfullness), get multiple opinions ( ex. primary care, surgeon, physiatrist) do GOOD research not just googling and most important love life because no matter what you are going through you are still HERE and that means anything is possible. sorry for the long response but I don't know if I will be back here |
![]() MandiePoo
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![]() MandiePoo
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#4
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The only reason I consented to back surgery was because I had to preschool boys and I was dependent on crutches to move around. The herniation of my L4/L5 was very severe. I had excruciating nerve compression in my leg. It really was unbearable.
I had my first back surgery when I was 34. My second at 34 and a half. All the surgery did for me, was trim the herniation so my sciatic nerve wasn't compressed. I still have pain in my back every day. I still take painkillers on occasions. On a good day I can mop the floor. On a bad day I'm unable to move without discomfort. Think very carefully and try other avenues first. Lose weight if you need to. Strengthen your core muscles and walk everywhere. |
![]() MandiePoo
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![]() MandiePoo
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#5
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Listen to Leed he is giving you sound advice. I broke my back L4 and L5 .. surgery was suggested but the long term success rate was not guaranteed. Pain medication helps but is only temporary and can really screw you up. Best advice: Physical therapy to strenghten what you have to attain as much comfort as possible. Its amazing how much we can take. Good luck.
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![]() MandiePoo
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![]() Flooded, MandiePoo
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#6
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Thank you everyone for tolerating my angry demand
![]() Sorry so long to respond. I think that you are all right...I'm just frustrated lately and demanding answers where perhaps there are no easy answers. It's frustrating to have these days where I have difficulty walking/loss of feeling in my legs. The weakness is more prominent in one leg than the other - I know this because when I was evaluated by neurosurgeon he discovered it - its normally not severe. There is definitely some nerve compression I think, because I get "patches" of skin in my legs that lose feeling - specific areas (like the side of the top of my thigh, for example, on one leg.) I also have fibromyalgia/M.E., and at points they questioned if I may have MS, but I think we've been long enough since that "episode" to say that I almost certainly don't. I think that sometimes I have so many health issues going on, that when my back also causes issues it is to the point where I'm thinking "ANOTHER thing to struggle through? Ugh, no, this can be fixed with surgery....I want the damn thing fixed." I believe there is validity to the idea that some of it is psychological. That's something I should really look into. Perhaps I am attacking this altogether from the wrong angle. Maybe the biggest issue here is that (legitamitely, before I EVER took an opiate drug) I did not have much success with non-narcotics - some, but really not much - and I fear going back to how sick I was five years ago - with both severe back issues post-pregnancy and fibromyalgia first showing up. I fear getting to the point where someone has to help me to the bathroom and that loss of doing things for myself. Maybe that fear is causing a need or desire to "get the surgery" in desperation to prevent a relapse like that - but if we are being honest, surgery won't fix it all, as you have all said. Maybe what I need to do is address the desperation for a result, and go back to figuring out how to live within my requirements. For what its worth, this summer I did fantastic - and that may be some of the issue. Heck I eve went hiking a few times, swimming, etc, was outside every day...and then in Sept I started having a rough time again. I know one thing for certain - I am NOT willing to take opiates unless the situation is dire. In severe pain instances, I have worked out a codeine management plan with my doctor where I can pick up only a couple of days worth of medication at a time, and an extremely low dose (15mg, but with no apap as I have liver issues too) - but I've only taken advantage of it probably twice in a year and a half because it terrifies me. I can't ever ever ever ever ever go bck to where I was addicted to dilaudid. I'm just NOT willing too -not when I have gained so much success in my life away from it. Thank you, VERY much, to all of you, for the gentle reminder that sometimes the fast way is not the best way. <3 ![]() ![]() ![]() ![]() |
![]() shortandcute
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#7
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Many drugs are NOT filtered by the liver. So check into these. For instance, the opiates to NOT "damage" the liver like the "Tylenol" does. Continued intake of Tylenol or high doses of it WILL damage the liver, whereas long-term or high doses or opiates will not.
So that is a good option should you need it, and I hope you will not. I wish you the best, MandiePoo. God bless. Hugs, Lee
__________________
The truth shall set you free but first it will make you miserable..........................................Garfield |
![]() MandiePoo
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![]() MandiePoo
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#8
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Quote:
In my opinion ( again only my opinion) the more you can learn about your opponent the better prepared you are to defeat them.I will try to post more info for you later |
![]() MandiePoo
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![]() MandiePoo
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#9
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You are young, but that also means many more years of pain. Back surgery can be a tricky thing. It can make a bad situation worse. Before you make up your mind, get several opinions and options. You only have one spine, and side effects from surgery can be just as devestating. As annoying and frustrating as it is, checking out as many surgeons as your insurance or pocket book will allow is in your best interest. Even if you have back surgery, there will be recovery time and physical therapy that won't be pleasant. If you find a Dr. you feel is the one for you, see if you can talk to some of that Dr.s patients. First hand opinions can go a long way towards giving you the truth. Good luck. Sam2 |
![]() MandiePoo
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![]() MandiePoo
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#10
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Chrain ~ BEING a recovering PAIN PILL ADDICT myself as well as a recovering alcoholic, I myself am taking opiates with the knowledge and support of my doctor, and I'm doing it successfully, and I've NEVER taken more than prescribed. If you have enough clean time under your belt, you CAN take them and be HONEST about it. I know MANY people in the AA and NA programs who, due to intractable pain, have HAD to resort to opiates -- what else are we supposed to do?? Live in AGONY? Is that what YOU think we should do???
I don't think just because we're in recovery, we need to suffer in agony!! I did that long enough until my SPONSOR told me I was JEOPARDIZING my program!! So what would be YOUR prescription for someone living in agony, Chrain? By the way, I've had EVERYTHING done to me that a pain management clinic can do, including the spinal cord stimulator, which did NOT work.
__________________
The truth shall set you free but first it will make you miserable..........................................Garfield |
![]() MandiePoo, ShaggyChic_1201
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![]() MandiePoo, shortandcute
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#11
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Thanks for your input, everyone
![]() Just as reference - opiates, for me - are an EMERGENCY option for me EXTREMELY infrequently. As I mentioned before, I do have a low-dose codeine plan in place for the times where it's just not sensible, OR healthy to continue in that much pain (the last time I was in that much pain I also had to have my blood pressure medicated as it shot up from the stress - another issue I've had). But opiates on a regular basis are simply not an option at this time for me - I was an IV drug user. And a bad one - I almost died twice - all of this occurred due to me meeting a man when I was in a vulnerable space - and him turning out to also be an IV drug user. I started with pain pills and it severely escalated through reasons that were my own fault, and also for the prementioned reason - and also because my doctor ramped me up to 30mg of dilaudid a day in four months (which is insane, in ANY regard). That's another story for another time - but I just wanted to clarify that in an emergency - yes, I will take opiates - but the situation needs to be extremely controlled. Preferably, I pick up a single dose at a time or see my doc for an injection at the hospital she works at - the less time the drugs spend in my hands, the better. As a gesture of honesty - mostly I use marijuana to resolve pain. This is because I can quite literally pick marijuana up and drop it at a moments notice - and also because when I smoke too much marijuana I literally feel sick lol. I'm in the process of getting my card with my doctor AND counselor agreement right now ![]() In effect - both of you are right ![]() ![]() I have started doing morning mindfulness meditation again to calm myself - and no improvement yet but I plan to give it time. I have another doctors appointment next week - they are planning on doing an MRI, and more XRAYS - and now I have to have an ultrasound because I have a hard lump in my upper left abdomen ( could be spleen she thought, I thought maybe kidney as I've had issues with it before). Just a lot going on. |
#12
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#13
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One bit on mediation and mindfulness. You don't have to necessarily take time out to do it. You can also perform mindful exercises during normal daily and activity such as eating, exercising or even reading a message board. Focus on all that is going on to make these activities possible and enjoyable. Appreciate how amazing your body and mind actually are and all the little things that need to happen in order to perform that simplest task. It can be very beneficial for your system to become just as (if not more) sensitive to positive stimuluses as it has become sensitive to those negative stimuluses. -Chrain |
![]() MandiePoo
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![]() MandiePoo
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#14
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Chrain -- I appreciate that. I know it was probably difficult for you to say.
![]() I've been in chronic severe intractable pain for the last 27 years (yeah, you read that right) and there have been times I wanted to "off" myself, but I don't believe in that. It's only been in the last 3 months that my new doc found a combo of meds that has relieved the pain to where I have SOME semblance of comfort. No other doctor was willing to work as hard as this one. There ARE those of us who HAVE to resort to long-term use of opiates as there is no other option available anymore. Surgery is no option for me, as heads of Neurosurgery in 3 large hospitals will not touch me. The stimulator didn't work, and I cannot have the morphine pump because I'm too small. So there you have it. I'm grateful there ARE medications that allow me some kind of normalcy albeit limited. Again, thank you Chrain. God bless. Lee ![]()
__________________
The truth shall set you free but first it will make you miserable..........................................Garfield |
#15
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Hello Leed ,
Seems we cross paths again !I can not believe how much we have in common ! In responce to your responce to the first person who posted about back surgery I am and can't offer any advice since everybodys situation, although similar, is unique. I will just share alittle about my expierience with back surgery. I also had a spinal fusion @ the L-4,L-5 level about 12 yr's ago. I had severe stenosis and the 2 discs were herniated. The result was about 80 % success, BUT , a re-injury put me out of commission ,( I have to leave out much here ).By the way, screws were inserted where the discs were ( they were called cages ). Anyhow fast forward 12 yrs. To this day I have never had a pain free day. I'm on pain killers for the past 12 yrs, plus many years before, and I have to say that if it wasn't for the pills I would not be here today. Also they predicted correctly that in about 10 yrs my l-3 wpould go due to taking all the pressure. There is so much more but it would take a book to tell it all. To anyone considering back surgery, be carefull ! Till next post, regards, cb ![]() |
#16
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It's true, Blue. When you have spinal surgery, usually you end up having to have more somewhere on down the line.
![]() I did a LOT of research, and found that a good share of the time, this is what happens! I had my first surgery in 1987 and my 2nd in 1995. Then I had the spinal cord stimulator implanted in 2000 -- it didn't work, so they took it out 6 months later. That left me with scar tissue in the thoracic area that bugs me to this day. NOW research is showing that people who have fusions/back surgeries have the SAME RESULTS as people who have just physical therapy!!!! Can you believe that??? All these surgeries for nothing when they COULD just be doing physical therapy?? But these doctors are pushing for surgeries??!!! Why? Because of the BIG MONEY. Good grief. It's pretty bad when medicine is being run like a large corporation -- just for the money. I guess it's always been like that, but it seems it's more "in you face" now. And it's making me sick. ![]()
__________________
The truth shall set you free but first it will make you miserable..........................................Garfield |
#17
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You know, this thing can get messy at times. I just want to add one thing that I have found out about opiates or whatever. Leed you and I have almost exactly the same history. Since I've had this awful, debilitating back pain the pain medicine I take is heavy duty and it barely gives me any relief. It does just what it should do, and that is help allieviate some of the pain. I have yet in 12 yrs gotten " high ". To do that I would have to take so much I would OD. |
#18
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Blue, I don't think either you or I COULD OD, since we've built up a tolerance, and because we use it just for PAIN. I'm just like my Dad, and it takes about 4 times as much medication to even put me to sleep, and THEN I wake up DURING SURGERY!! I woke up on the table when they were operating on my spine TWICE -- and they'd given me curare so I couldn't move -- and I was of course face-down, so they couldn't see my eyes were wide open. The anesthesiologist evidently wasn't paying attention -- I heard them all talking about what they did that weekend , I laughing & joking, yadayadayada, and I kept trying & trying to MOVE something -- this went on for I don't know HOW long, until I finally managed to move my little finger -- then all HE@# broke loose, and the anesthesiologist hollered "SHE'S AWAKE" -- and Ii heard things banging, & people moving all over the place, LOL -- he finally gave me more happy stuff & put me back to sleep -- but if that wasn't scary! That happened for the 2nd spine surgery, even after i'd told them it happened the first time!
Then I had oral surgery and had to be put out -- and darn near killed the surgeon when I awoke during the surgery -- I was reacting to the anesthesia, and got violent! LOL He put me back out, but when it was over, he said he gave me enough for 4 BIG guys. So see? We need more juice than most people. I'm sure you're just like that from the sounds of it. Have you have woke up during surgery? I curious!!!
__________________
The truth shall set you free but first it will make you miserable..........................................Garfield |
#19
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Here is a video that gives a nice overview of pain. I figured It would be a good place to start.
-Chrain |
#20
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Don't get caught up in some of the medical terms and his Australian accent. Pay attention to the overall point.
-Chrain |
#21
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Quote:
And MandiPoo, you have done nothing wrong. It's hard when you are in pain like that, and also can be hard to figure the right way to go. You want the pain to go away and it's hard to think clearly when you are in that much pain. I don't know much about back surgery, so I don't really have any good advice for you; but hang in there, and I hope you will find a good solution and SOON. ![]()
__________________
"Sometimes you have to hit rock bottom before you can see the top." -Wildflower http://missracgel.wixsite.com/bearhugs |
#22
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Thank you, everyone.
I've slipped even further down unfortunately. I woke the other morning unable to stand fully erect - my lower back on fire/spasming. Ended up for the first time in my life in the ER due to back pain ![]() At the ER, was RX'd Arthrotec(NSAID) and Flexeril(muscle relaxant). But two days later I am still unable to stand or straighten or even walk on my own, so back to my own doc tomorrow. This is *by far* the worst my back pain has EVER been. To the point where I've almost passed out a couple of times. Im also getting weakness in my legs and patches of numbness, so something is pinched...and pain all the way down both legs. It's weird because usually it's just one leg. Wish me luck tomorro! I'll update you all on what I find out. |
![]() ShaggyChic_1201, shortandcute
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