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    Old 05-02-2008, 08:33 PM   #16
    ms_west
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    Re: Prayer for Strength

    [QUOTE=lfoster21;3555179]As far as Post-lami. syndrome and failed back syndrome...both are listed on my medical report from my pain management dr. even though they really seem to be the same thing. The only difference is that if a person did not have a lami., they would just have the 1 title. I don't really know why they have to say I have both, since both have the same symptoms. :[/QUOTE]


    Today I got both of them too. I guess we now have a 2 for one special!!

    Gotta keep the humor because right now I am so exhausted mentally and physically. A little confused and angry at my surgeon too that did this to me!

    Last edited by ms_west; 05-02-2008 at 08:33 PM.

     
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    Old 05-02-2008, 08:53 PM   #17
    ms_west
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    Re: Prayer for Strength

    [QUOTE=cherir;3555184]Pepper, this is EXACTLY what was wrong with me after my second surgery. That surgeon did a fusion without hardware, declared me fused and sent me on my way.

    [COLOR="Red"]I was never declared fused but I was told that there was fusion there and he added bmp to make it stronger.

    [/COLOR]
    The pain got so bad I was literally suicidal.

    [COLOR="red"]I can relate to this. I have really been struggling and must admit if it wasn't for Moldova I would have not made it thru these past few months. I have struggled with posting because I did not want to depress anyone and I did not think anyone could relate to what I was going thru. And all along you were here. I am sorry you went thru this too! [/COLOR]

    Finally got up the nerve to go for another consult (after 2 failed surgeries) and found out I was NOT fused, that my vertebrae were shearing and shifting, causing massive instability and massive pain. I walked weird, as I'm sure you do now, because one side of my spine was not right.

    [COLOR="red"]This does sound like me. I have had 3 surgeries on this level. Laminectomy, fusion, revision. And it looks like a 5th one is in my cards. Did you use a cane too?? I do walk strange. My hubby says I look like a bent over grandma who is drunk.

    I have been scared to see another surgeon and hearing Failed Back Syndrome. Today has given me hope but I still saw that Failed Back Syndrome. Ughhhhhhh[/COLOR]

    My 3rd surgery fused me, that is all great, I just have too much ongoing nerve damage.

    [COLOR="red"]This is what the surgeon eluded to today. That if this is truly a non-fusion and proven by the CT scan, the nerves will probably never recover completely. However, he strongly wants me in my pool ASAP. He said it is going to hurt like heck but they have to be stretched out. No swimming just stretching.[/COLOR]

    If that is what is wrong with you, this is an acute situation that must be fixed before you end up in a wheelchair. Just imagine what your spine could do with the wrong move. I hope you really really watch what you do until you find out more!!!

    [COLOR="red"]Today he told me that he does not want me doing any bending period including squatting. My husband sat the children down tonight (10 and 12) and told them how proud he is of them and all that they have done around the house but they were going to have to work even harder. And if they catch me doing something like trying to sweep, they need to take the broom out of my hand and say let me do that for you. I guess I really had not thought of it this way.[/COLOR]

    I think my nerve pain is like your doctor said - my pain receptors are screwed. I failed my EMG with acute and chronic S1 nerve damage, but passed the nerve conduction studies.

    [COLOR="red"]My GP talked to a neurologist and they said that the emg test would be to painful for me at this point. He did not recommend it at all. I don't completely understand why.[/COLOR]

    I will keep praying you find out what is wrong. On the CT Mylegram, just get yourself completely relaxed and almost meditate through it. With all the pain you are in, your body won't likely enjoy the needle procedure. If you are lucky, they will give you versed. My doc didn't believe in it, so I went au natural and thought I'd have a nervous breakdown worrying about it. When it came time for the procedure, I was nearly hysterical and the doctor who performed the procedure was phenomenal, totally understood my anxiety and talked me gently through it. (It hurt also because I could not lay on my stomach on a bed, let alone a hard exam table, but I made it.)
    [COLOR="red"]I actually had one in Sept/November of last year. I was sore but truly the procedure was not that bad compared to what I have been thru.

    That is interesting about laying on bed. I am finding this torture lately. I can't lay on either side, my back or stomach. I am sleeping in a recliner. Just last week I tried to sleep in the bed but I could not get back onto the other side to get out of bed. I had to scream for someone to help me. There was nothing to grab on to help me turn. [/COLOR]

    ( (HUGS ) ) and prayers your way!![/QUOTE]

    [COLOR="red"]Thank you so much for sharing this with me. You have given me hope.

    Right now I am so confused and scared about if I have another surgery am I messing my nerves up further? Did anyone address this with you?

    Also how many levels do you have involved in this? [/COLOR]

    Last edited by ms_west; 05-02-2008 at 08:55 PM.

     
    Old 05-02-2008, 09:40 PM   #18
    cherish1
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    Re: Prayer for Strength

    I just have one level - L5-S1. The details of my case were that during my 2nd "successful per the doctor" surgery, one of my facet joints must have broken off, because it wasn't there for simple xrays, let alone the CT mylegram. If you envision the spinal vertebra, the facet joints keep the spine from rotating too far, etc. Missing one lets the spine just move all it wants from that area.

    The EMG was very painful and I really hope I don't have to do another one. Thankfully, it didn't last long. (You do know they put needles in your nerves and send electic shock to see how your nerves react? Can you imagine that right now!!! Ack!!) What should feel slightly painful to a normal person does not to those of us with whacked out nerves.

    I understand you worrying about further nerve damage with a 5th surgery. You may have some. But if they confirm that you are walking around with a moving spine, a wheelchair may end up your home with a simple car wreck, a simple fall, etc. So scary and dangerous. I believe God allows us to experience this horrific pain to protect us, because it sure keeps us from doing much of anything.

    When I had my 'moving spine", laying down killed me. Absolutely killed me. I lived in my recliner, otherwise known as my "nest". When you have free movement (such as in a bed), when you go to turn even slightly, your "free" side doesn't move with you. Scary, isn't it? Meanwhile, it pinches and crushes your nerves, causing all this lovely pain.

    I was so depressed my husband removed all car keys and any ability I had to leave the house. I think he truly believed if I could drive I would drive myself into the lake or something like that. I definitely considered it. The unrelenting pain, neverending torture was almost more than I could bear. I prayed and prayed, but friends stopped visiting because all I did was cry, no one knew what to do, and I was so isolated. I have the most sensitive husband and he just ached for me. I praise God that I found my final neurosurgeon when I did. A former sunday school teacher actually had to call me and give me a "christian lecture" about going for another opinion because I was so unwilling. I just didn't want to go through anymore, and I am sure you understand that. But she asked me what kind of mother was I lately? How about what kind of wife? And shouldn't I do everything I could possibly do, even if it meant facing a great fear (of surgery, more pain, more failure)? It was what I needed (granted, after I stopped crying 3 days later! lol)

    But, the good news for you is that something definable is likely wrong, and that in itself is a blessing!! With me, the "suicidal" pain is gone. It truly is. I just have nerve pain ongoing, but nothing like I had. I will be going for a trial SCS because I do not tolerate Lyrica, Neurontin or Cymbalta, and frankly, some of those meds scare me anyway.

    I am praying it works for me, as like you, I am used to "doing" and have much trouble being so sedentary. However, I will do now what I must to maintain what health I have left so my poor husband (who definitely did not sign up for any of this 21 years ago!) can still have some kind of wife and mother for his boys. I hate seeing him feeling so helpless. I hate the sad look in his eyes when he comes home to find a swiffered floor but a wife aching more than usual in her nest because she got up and tried to do some housework. God is doing a number on me regarding patience and I am slowly getting there.

    ( (HUGS) ) and prayers.
    __________________
    1/09 Spinal Cord Stimulator, ANS/St. Jude Eon Mini
    11/07 - acute & chronic S1 nerve root irritation
    12/21/06 -360 PLIF L5-S1 w/inst.
    3/21/06 - L5-S1 fusion w/o inst.
    12/21/05 - Lam/Disc. L5-S1.

     
    Old 05-02-2008, 09:50 PM   #19
    cherish1
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    Re: Prayer for Strength

    Ohhhh, and one more thing I forgot to rant about. What the heck is with both us having doctors who send us on our way, with us thinking about all the tests we must further endure with someone else if we move forward. Only to find out that our new doctor can tell what is wrong with simple xrays????? (To then be confirmed with further testing). But what is wrong with us is so obvious that simply xrays can show it? AGH!!!!!!!!!!!!!!!!!
    __________________
    1/09 Spinal Cord Stimulator, ANS/St. Jude Eon Mini
    11/07 - acute & chronic S1 nerve root irritation
    12/21/06 -360 PLIF L5-S1 w/inst.
    3/21/06 - L5-S1 fusion w/o inst.
    12/21/05 - Lam/Disc. L5-S1.

     
    Old 05-02-2008, 10:01 PM   #20
    kyma3
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    Re: Prayer for Strength

    Pepper I am so sorry that you have been in so much pain but it sounds like you have a good doctor who will get to the bottom of all your problems. I want you to know that you will be in my prayers and also everyone else on this board that also has on going problems after their surgery or surgeries.

    take care
    Linda

     
    Old 05-02-2008, 10:18 PM   #21
    ms_west
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    Re: Prayer for Strength

    Cherir, I am sitting her bawling my eyes out. Our cases and experiences are so similiar. The raw emotions you tell are exactly, exactly what I am going thru right now and have been struggling thru these last few months. Years. And to top it off the swiftering/recliner picture I am homeschooling my children!!

    Truthfully, you have helped me more than you will ever know tonight. I am feeling a fleck of hope and once this myleogram is done and I have everything confirmed I am going to be :

     
    Old 05-03-2008, 06:49 PM   #22
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    Re: Prayer for Strength

    Oh my DDP friend.....you have been through h*ll and back the past few days. I hope the pain has relented a little at least. Have you heard when your myleogram is? I know you understand when I say I actually hope they find something that is correctable. That seems a better option then to find nothing or nothing that can be repaired. Feel better my friend, you are in my prayers.

    Deb

     
    Old 05-04-2008, 02:08 PM   #23
    Sage48
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    Re: Prayer for Strength

    aw Diet...I didn't get to the puter on Fri...am just home and wanted to check the posts... I always include you in my prayers... I hope that you are a "bit" better today. So sorry about the diagnosis..want something that will help ease your pain..

    Leslie

     
    Old 05-04-2008, 05:40 PM   #24
    ms_west
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    Re: Prayer for Strength

    I am so thankful for this board because when I really needed you, you came to my aide and I appreciate it more than I can say. This is the beauty of this board. One can come forward and cry on everyones shoulder and get an overwhelming amount of love and support. Thank you Jesus for healthboards!!

    Physically and Mentally I am doing better. My meds are kicking in and now relieving the pain which they were not coming close to last week. I know that if this doctors opinion or diagnosis is proven thru the mylegram that the pain of last week was well worth it because we may finally be getting down to the bottom of everything.

    Again thank you for being there and I pray that today you are having a low pain day. No pain would be even better.

    Luv ya, Pepper

     
    Old 05-04-2008, 05:47 PM   #25
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    Re: Prayer for Strength

    That is a great attitude Pepper! As long as the pain leads you and your doctor to a solution it is all worthwhile. I am so glad you are getting some much needed relief. It has been a beautiful weekend here....I hope you were able to enjoy it at least a little. Keep us posted my friend and I will continue to pray for you.

    Deb

     
    Old 05-05-2008, 06:07 AM   #26
    ms_west
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    Re: Prayer for Strength

    My CT mylegram has been scheduled for next Monday so thankfully I don't have to wait to long to get down to the bottom of things. I just had this test done last October and I remember that it is painful but if it gets the answers we need it will be worth it.

    I am trying so hard to be positive. Last night, I had a few moments were I started to panic about everything and I had to actually slow my breathing down to calm down. I guess this is natural.

    Pain wise I am doing better but still hurting which is to be expected. I am definitely better than last week.

    Take care and I will update you when I find out the results.

    God Bless each and everyone of you and may you have a low pain day today.

     
    Old 05-05-2008, 06:43 AM   #27
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    Re: Prayer for Strength

    [QUOTE=123dietdrpepper;3557414]

    God Bless each and everyone of you and may you have a low pain day today.[/QUOTE]

    Amen, and back atcha!

    Hang in there, sweetie. A day at a time, an hour at a time when necessary.

    We're here.....
    Emily

     
    Old 05-05-2008, 05:16 PM   #28
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    Thumbs up Re: Prayer for Strength

    Glad to hear it's only a week away and at least you know what to expect of the test..The unknown is sometimes the worst.

    I hope you are continuing the deep breathing and happy to hear the pain has lessened a bit...

    Hang in there and continue w/ your great attitude and positive thoughts.. We're all pulling for you and happy you found a Dr. to help you get to the bottom of it..


     
    Old 05-06-2008, 04:48 AM   #29
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    Re: Prayer for Strength

    So glad that your meds. are kicking in and helping you out of pain.. Have been thinking of you...and reading posts in both backpain & PM sections, just to keep up with you. Hope you have a good day..rest well...

    Leslie

     
    Old 05-06-2008, 02:35 PM   #30
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    Re: Prayer for Strength

    Hey, Diet. I read your whole story. It's longer and more sordid than mine, but I feel like I've kind of mirrored you somewhat. I don't feel totally right offering advice to someone who has been through more, has been married longer and has children when I don't, but... please keep your chin up!

    Hope is so important as we go on our life's journey. If there is anything I've learned as I've struggled with my situation with my back is that I've got to make peace with my self, my body, my God, my family, my neighbors, the hard-backed chairs in restaurants, and so on. And I've got to have hope for bright moments and be ready to enjoy them when they come. I don't get to pick how and when they come. Just believe that they will.

    I used to run 13 miles every Sunday. Well, I don't know if I'll ever do that again. But, I'm pretty sure that I'll be able to walk 3 miles again. I'm darned determined that I will. And when I do, I'm going to be pleased and thrilled to move my legs and breathe so much fresh air.

    These tests you're going to have stink, but they'll be overwith in due time. Don't spend too much time focusing on how bad they are. Focus on the prize, if you can. I want you to know that I still believe that you can feel better. I always have believed that.

    BIG, GENTLE, HOPEFUL HUGS TO YOU!!!
    - Margaret

     
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