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ms_west 05-02-2008 12:30 AM

Prayer for Strength
I won't repeat my story but on the pain mgmt board I have a thread entitled, "Please Pray.....". The last 72 hours have been h*ll for me due to extreme pain levels.

What I need from you is even more prayers for strength. This morning, Friday, at 8:30, I have an emergency consult with the head of a spinal dept for a 2nd opinion on my case. I am scared to death that I might recieve the dreaded reiteration of Failed Back Syndrome. Yesterday I did receieve a second opinoion of sorts from my gp of Post Laminectomy Syndrome, which I researched and is basically the same diagnosis of Failed Back Syndrome. However, he is a gp so what the heck does he know, right?

While you are saying a prayer, please pray that my pain levels calm down soon.

Thanks and I love you guys.

Nikirae 05-02-2008 02:09 AM

Re: Prayer for Strength
Oh Pepper I feel so bad for you!! I was thinking about you all day yesterday and never even thought to check the pain mgt section for some reason. I don't visit the boards that often anymore but always think about you, you have always been so kind and hate to hear you are having such awful pain issues.

Sadly I got the Post Laminectomy Syndrome on my second opinion as well, like they think that term is going to make it better then the phrase Failed Back Syndrome :confused:

Will continue to keep you in my prayers. :angel: You are truely blessed to have such a caring doctor as well, and I will pray that he and the new spine doc can get you some relief.

(((HUGS))) Niki

scooterdude 05-02-2008 05:26 AM

Re: Prayer for Strength
Pepper, I will definately keep you in my prayers. I hope and pray that you get some relief soon, and I sure hope you get some positive news today.
Take Care,:angel:

BlueAtlas 05-02-2008 06:03 AM

Re: Prayer for Strength
Pepper, I'm praying for you, and I'm sure lots of others will be, too. Please let us know what you find out as soon as you can. The waiting can be almost harder than the news itself!

Hang in there, sweetie. Take a deep breath, try to relax, read something interesting to your kids, try not to dwell on the appt. One step at a time...

Love ya, Pepper!

Baybreeze 05-02-2008 07:17 AM

Re: Prayer for Strength
Pepper, I will also keep you in my prayers :angel: . I haven't been on much all week, so I still have to go read your post on the pain boards, but I pray that you can have strength to get through your appointment and that you will get a different opinion this time! I've also had alot of pain all week and am started to feel defeated myself, all due to a bunch of different things. So maybe we can pray for other.

Frosty6 05-02-2008 11:50 AM

Re: Prayer for Strength
Diet, sending lots of ((((((())))))))) and prayers your way!


Moldova 05-02-2008 12:09 PM

Re: Prayer for Strength
I amhere for you - pray for you to get better!:angel:

ms_west 05-02-2008 12:55 PM

Re: Prayer for Strength
Sorry everyone for not responding earlier. I came home and had to go take a nap to recover from everything. I have so many mixed feelings and questions so I hope this all makes sense. Feel free to ask anything if it does not make sense.

First off the terms Post Laminectomy and Failed Back Syndrome are two catch all terms that mean basically you continue to have pain after surgery and/or surgery did not work. I have post laminectomy syndrome and failed back syndrome. Some surgeries are correctable and some are not correctable.

The surgeon first examined me and then said, he felt my pain receptors have been damaged from multiple surgeries. It does not mean that I don't have pain because I do. It means that my pain receptors (nerves) has become overly sensitized. If I stubb my toe, it would proabably hurt me a little more than the average person because my nerves have been manipulated so much that they sense pain and overreact so to speak and then I need more medication to relieve the pain. Hopefully this makes sense.

He said before I go into depth more, I want an xray done then we will talk. He sent me over for flexion xrays and when I came back, he put them on the wall and kept starring at them. Then he looked at me and said, walk across to the other side of the room from me. I want to watch you walk. Then he said, come over here to this massive white board and said lean up against. He drew the outline of my body. Then drew a line down the center with a ruler. My entire body tilts to the left. Then he took me over to the xrays and see your spine. Everything is tilted to the left. Hmmmm......on the left is my hardware - I have no hardware on the right it was removed last November. It appears something is pulling my body to the left. Is it hardware or muscles ?? I have begun having upper back pain so we just found the cause of it, I am not walking straight and the spine is curving to the left so it makes perfect sense.

Then he said, look at this and showed me bones in the upper back, it is fused. He shows me this grayish/white color. Now he said look at L5/S1 that was fused in Feb. 2007 - there is no white/grayish color. Last November, my lovely surgeon ;), took out the hardware on the right because he thought it was irritating the sciatica nerve. I was supposedly fused enough and he added additional bmp for support. Hmmmm......... ???

Before everyone comes down on my old surgeon, sometimes it is hard to see fusion from an xray, so we have ordered a CT mylegram (GREAT! :() to verify if there is fusion or not. YIKES. If it shows no fusion, then we probably know why I have bad back pain. I have a non-union but I only have left side hardware not right.

He stated that with BMP, you should see fusion growth in 4 months.

So does anyone have an idea why I am having pain???

I won't leave you guessing until tomorrow -- I am having motion/movement of the vertebrae because I am not fused and I don't have hardware on both sides to stabilize everything.

The surgeons theory or thoughts at this stage are: when I slid the meal into the oven, my vertebrae being unstable probably moved and pinched a nerve giving me the electric shock and increased pain. Now my nerve has to settle back down again.

What does this mean? If the CT confirms this, then I have to go back to the surgery room for another fusion - Round # 5. :mad:

But on the flip side this is really good news, there is hope that my problems can be solved and hopefully I won't have a lifetime of chronic pain. He is telling me that I have a chance in his eyes to get better but because of all the surgery, I will always have some pain because of nerve damage but not as much as I am currently experiencing.

Now if the CT comes back and shows fusion, then they are going to have one messed up Diet on their hands. That will mean that this doctors theory is completely off and I for some reason I am crooked and we need to find out the cause. for my pain, I am a little better. Down from a 9/10 to 7/8. Mentally, I am wiped out.

I am waiting for a scheduler to call me on the date and time of the CT.

Thank you for all your support.

Round1 05-02-2008 02:55 PM

Re: Prayer for Strength
Gosh Diet,,,,,,,,,,, I am wiped reading it not to mind how you are feeling.....
It really is a wait and see, Fused or not fused,,,,,,

I can relate to what he is saying about feeling pain more than others. My pain management guy asked if I feel pain more than others..... I just looked at him and felt like saying how do I know how much pain they feel !! but knew what he meant.... he said that my nerve ends were over sensitive, and i would feel pain more than a "normal" person. He said it was like losing an arm but still feeling the pain in the arm.

You said your body is going to the left when you walk...... Is that just since the other day? or is it because of the pain you are in, that you find this side easier? or is it you just go that way? If you are using a cane/crutch/walker do you normally lean to the left with it aswell, sorry I am just thinking as I am typing..... just wondering did you always go to the left unknown to yourself.

Sorry I know you are not able for all the questions, I just find the walking to one side interesting as I tend to favour one side more than the other. Diet there are alot of answers really and I can see where you are coming from with a postive outcome...... but yet again its a waiting game. You must be mentally and physcially worn out from all of this.... please God they will able to orgainse the CT Mylegram soon, and get this sorted, and not keep you hanging on. Diet all I can say is you are in my thoughts and prayers. This maybe the answer.

ms_west 05-02-2008 03:44 PM

Re: Prayer for Strength
Thank you Round1. It is so wild. I feel like I am in a dream.

My hubby says that he has noticed it since the fusion done in Feb 2007. Since the surgery in November 2007 it has gotten worse. I personally had not noticed it. Hubby says I walk hunched over when the pain is high too.

I use the cane everywhere but home unless the pain is really high. Hubby says I do it 24/7 with and without the cane.

Baybreeze 05-02-2008 05:07 PM

Re: Prayer for Strength
I have read about that before, regarding pain & becoming oversensitive to it. I think when one has chronic pain, your nerves get overstimulated over time; and if it keeps going on, it can change something in the way yours nerves react. So the nerves get overactive (too stimulated), and increase the pain transmission to your spinal cord and brain. And that can make your pain feel even worse, or things that don't usually cause alot of pain can become more painful.

Also, the leaning sidewards and/or forwards makes alot of sense to me, because I do it myself. It's like your body has something automatic to try to adjust and put yourself in the least painful position. I know it does not stop the pain, but the body tried to get itself in the best position. However, when that happens, you are out of alignment, which can cause even more problems in places you never hurt before. Ahh, it's all such a viscious cycle!

I hope this heightened flare up calms down for you soon and that you are able to get it under some control with your meds. You sound extremely lucky in the doctor that you have. All doctors should be that way, he really sounds great and it seems like he really cares alot about his patients.

ms_west 05-02-2008 06:43 PM

Re: Prayer for Strength
I believe that is exactly what he was trying to say Baybreeze. It was hard to put into words and I had so much thrown at me that I did not understand it completely. To be honest, I was thinking gosh he is going to say this is in my head. Thank you for explaining it.

lfoster21 05-02-2008 07:42 PM

Re: Prayer for Strength
Wow, what a day! I am glad that you are getting some answers and some hope, though. My Dr. said a lot of what yours has said. As for the nerves being more Dr. said that since I already have Fibromyalgia, he was prepared for the extra sensitivity and that on top of that, he mentioned that those who have multiple surgeries where nerves are messed with, there is additional reasoning for this heightened sensitivity. Not only does the pain hurt more than it would another person, but can also last longer than the recovery time of others.

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;). When I 1st went to see my PM, I was so happy when he Dx. me with it. Not because I wanted pain from that point on...but because someone finally put a name to what was going on in my body.

It's interesting about you leaning to the left. The appnt. must have givne you some relief that there was a reason for what you were feeling. Please let us know when you go in for the CT and we will all be praying for you.

Best of luck and I pray you are sleeping right now and not reading this until the morning:D

Hug and prayers comming your way,

cherish1 05-02-2008 07:46 PM

Re: Prayer for Strength
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. The pain got so bad I was literally suicidal. 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.

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

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.

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.)

( (HUGS ) ) and prayers your way!!

music47 05-02-2008 08:08 PM

Re: Prayer for Strength

I am so sorry you are suffering in severe pain:( I am praying for strength for you. :angel:

Hugs Nadine

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