Time for an update I guess

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mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 3/30/2009 8:50 PM (GMT -7)   
 It's been awhile since I last updated anything on me so here goes.  I have CES, after my first fusion surgery, I developed it as a post op complication. My surgeon unfortunately for me, missed it....calling it post op swelling....Anyway, after 17 months, I finally found out what was causing my ongoing deterioration, and my bladder and bowel issues. rolleyes sad   I was NOT a happy camper, as you can imagine, especially since I had been telling my surgeon that something was seriously wrong, and it wasn't post op swelling. nono  
I wound up having to have a revision of the fusion since it never did fuse, along with having to have two other levels decompressed as well  ( L3-4 and L5-S1) original site of fusion was L4-5..to try to save what was left of my ability to walk, sit and stand up for any length of time. I still can't stand on my own for more than 5 minutes without my legs giving out. It was a mess in there, and my 2nd surgeon also discovered that I have arachnoiditis on top of the CES, and the nerves at L5-S1 were like tissue paper...no hope of recovering any of those nerves.
Anyway, I was prescribed a motorized wheelchair, a manual one as well and a scooter to help me get around, and to add to my ever declining ability to get around.
I have been relegated to PM , like everyone else and it has been a battle to find meds that work okay....not great, but okay. They at least , on most days allow me to get out of bed , and sit around my house, but not a whole lot more than that. My PM is a good guy and he does try to help. Anyway, to get to my latest news....at my appointment last month, my hips are really painful on top of the back and nerve pain....I was having one of those days where my ability to walk was not at  it's best and I was literally taking baby steps to get anywhere because my legs just wouldn't cooperate that day. When I tried to stand up, my legs repeatedly gave out, almost knocking my poor PM over right along with me. I usually am able to just lean up against something for a few minutes until it passes (whatever it is) and then stand and walk......not that day. Each time I tried to stand up or take a step, I nearly fell over, and almost knocked the PM over . smhair confused   I was getting scared because normally, it is bad, but not quite as bad as it was that day. My PM was worried, went and got their wheelchair since I didn't bring mine that day, and he told me that I was to use my wheelchair or my walker, but not my 5 prong cane , he was  sending me for a new MRI and he increased my pain meds ......I could tell he was worried...I don't think I've ever seen that look before.
Anyway, I am now waiting to get the new MRI....I am a little worried about what else might be going wrong now....It took two and a half weeks to get the approval from my insurance for the MRI, but we finally got it....
I hope that it is just an exacerbation of my normal problems, but don't really think so.....my decline continues , some days are worse than others but I am finding that if I try to increase my walking , my legs just won't work....they won't hold me up and they won't make the steps that I want them to make....so who knows.....anyway, I read every day, and post when I think that I might be able to help someone else......
I figured it was time to catch up with what's been going on with me.....I hope to get the MRI done sometime this week or early next week. My PM wants to see me as soon as the MRI is done....which means that he wants the report asap....I hope it's not bad news. I don't want to have to go down the surgery route again........my first two trips down that road have not turned out well....
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/30/2009 10:26 PM (GMT -7)   
Sandi,
Thanks so much for updating us. Mostly I see you post to others, very helpfully I might add, but rarely about yourself. Maybe you need to do a little more of that (maybe you're a little like me? LOL)?

I'm so sorry to hear things are deteriorating for you, but I hope whatever it is gets picked up now so maybe you can see what your options are. Do you think the problem is your legs weakening, and that some kind of PT for strengthening would help? I know with nerve damage, it's not easy to figure out, and to get the strength to do any motor exercises.

Please keep us informed about the new MRI. And know I'll be thinking of you.

((((((((((((Sandi)))))))))))))))))))

PaLady

Jules22871
Regular Member


Date Joined Jan 2006
Total Posts : 142
   Posted 3/30/2009 11:42 PM (GMT -7)   
I am so sorry to hear that you are going thru so much. I don't know what to say excpet I hope things even out for you and they get better. You have my best wishes!
Thirteen surgeries from motorcycle wreck. Reconstructed right pelvis, DJD left hip, trochanteric bursitis left hip, screws in knee, metal plates on right pelvis, spinal fusion to reattach right pelvis, metal plates right tibia and fibula, metal plates needs replaced on tibia, cannot walk without crutches, drop foot, nerve damage and pain, HTN, tachycardia, delayed sleep phase syndrome, PTSD, chronic atelactesis
Wonderful husband, 3 awesome children that are grown but still take care of me. Two dogs, Buddy- Cardigan Welsh Corgi/Borner Collie mic, Crash- Yorkie, 1 psychotic cat, Precious, 1 anti-social cat, Prissy.


Pete trips again!
Veteran Member


Date Joined Nov 2006
Total Posts : 1899
   Posted 3/31/2009 1:12 AM (GMT -7)   
Sandi,
I'm so sorry to hear all the bad news, you are one brave Lady dealing with so much! I complain about my silly little problems and then read about someone like you and can't imagine what you must be going through. Like PA said, I think you should post about yourself more often to help others like me put things into perspective so we can be thankful for what we do have and to know that things could be a LOT worse. My Mom always would tell me when I was young and I would see someone with Polio or some ailment, "There by the Grace of God goes I" It always stuck w/ me. Thank you for opening my eyes w/ your couragius post. As usual, sorry about my spelling!
Please keep the faith,
Your Friend,
Pete
56 years old, Surgury, Radical Prostatectomy 8/20/03, PSA 6.6, Gleason 3 + 3 = 6, Adenocarcinoma extent (moderate) Stage & Margin:T2NOMX, No Metastases, Organ Confined, bone scan: Neg. 3 1/2 years of depression after surgery prior to Hypogonadizm DX, Testosterone Theropy> new 2/6/09> 400mg injections every 2weeks . 56 and so glad to still be here to see my two sons grow up to be fine young men. They are both serving in the US Navy, one on the aircraft carrier USS John Stennis in port in Japan and the other on a Gator Freighter USS Bataan stationed in Norfolk, Va. I am one proud PaPa! 


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 3/31/2009 8:59 AM (GMT -7)   
Hi PA Lady ,
Thanks for your reply. It may just be that the nerves just aren't working. The 2nd surgeon said that they were severely compressed and the ones at L5-S1 were like tissue paper, so I don't know what to think. 
I know that it gets harder and harder to stand and to walk, and that some days are pretty darn bad. I try to use the cane, rather than the wheelchairs simply because I don't want to loose what little bit of ability that I still have....if that makes sense???
I've been sent to PT at least 4 times since my first surgery and if anything , it has made the problems worse, rather than given any improvement. The nerves in my back rebell with a simple TENS unit...they do not like it at all.
Yes, I probably am a bit like you, I don't see much reason to complain, afterall, nothing is going to change how I am now, so I may as well learn to live with it, as best that I can...but there are days that I get worried about how I am going to be 5 years from now, or 10.....
I can't imagine honestly and am not sure that I want to.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 3/31/2009 9:00 AM (GMT -7)   

Thanks Still.....I will hope for the best and prepare for something less. It's all that I can do at this point. Nothing would surprise me. 

Sandi


PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 3/31/2009 9:04 AM (GMT -7)   

Hi Pete,

How are you feeling? Is some of the pain relenting? I sure hope so. I'm glad that your surgery is over, but please make sure that you do exactly as the doctor tells you to. You don't want to do anything that is going to make your surgery not turn out well....

As for me having it worse than someone else. I don't view it that way. I think that each of us has our own horrors to deal with here. My pain is no worse than yours or PA Lady's or anyone else's. We might all have different conditions to deal with, but it all effects our lives and those we love, and who love us.

We all have to do the best that we can each day and take it one day at a time. I think that we all do that here and on the days that things are not going so well, we lean on one another. That's what makes this place so special and so important.

And what spelling issues? You spell quite well my friend. You shouldn't worry so much.....

Sandi


PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/31/2009 9:48 AM (GMT -7)   
Sandi
will keep you in my thoughts and prayers and hope things will start getting
better for you...
{{{{{{{{{{{{{{{{{{{{{{{{{{{{{Sandi}}}}}}}}}}}}}}}}}}}}}}}}}
Keep us posted
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc, Fibromyalgia, Gerd, Enlarged Pituitary Gland
******** "We could never learn to be brave and patient if there were only joy in the world" from Helen Keller *********

********>^..^<********>^..^<********>^..^<********


White Beard
Forum Moderator


Date Joined Feb 2009
Total Posts : 3610
   Posted 3/31/2009 10:03 AM (GMT -7)   
Hi Sandi

WOW! You really have had a rough time of it! You know I read your post, and I feel an over riding need to say something, to express my concern, the wish or disire that things weren't as bad for you as they are, some thing profound, to say something that could make you better, but I know,....that nothing I can say... will do that,.... nor will it help your condition!
I do wish you only the Best Sandi, and I do Hope, your condition improves and gets better!

Good Luck to You!

White Beard
 

I'm Retired USAF, went back to school and became an RN, and now am on ful disalbility!

Degenerative Disc (affecting mostly the thorasic disc but all levels involved), C6/7 laminectomy/diskectomy& fusion, Osteoarthritis, Ulcerative colitis, Chronic Pain, Fibromyalgia, Complex Sleep Apnea, and host of other things to spice up my life!(NOT!)

Medications: Oxycontin, Percocet, Baclofen, Sulfasalazine, Metoprolol, Folic Acid, Supplemental O2 at 3lpm with VPAP Adapt SV


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 3/31/2009 11:29 AM (GMT -7)   
Sandi,
You're making perfect sense, just thought I'd let you know!

The 5 to 10 year thing? Oh. yea, I hear ya, lady. Loud and clear. I look out the window and wonder...then I become like Scarlet O'Hara.

I'll think about it tomorrow.

Hugs,

PaLady

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 3/31/2009 3:09 PM (GMT -7)   
Hi Sandi,

Boy, you are having a time with things right now. Hopefully you can get your MRI scheduled soon to see whats going on or if anything new has cropped up. I sure hope all turns out well. Just too much on your plate as it is. I can understand not wanting the surgery route again, you have been thru such extensive surgery already. Just wanted to pop by and let you know I am thinking about you.....

Susie


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/31/2009 9:01 PM (GMT -7)   
Hi Sandi,

I'm so sorry to hear that things have not been going well for you! Like Palady mentioned, I've seen you post in reply to others, but not often about yourself. You have been through so much. I can't even imagine what you must be going through now! I hope that the increase in meds brings you some more relief & that the MRI will get to the bottom of these new problems! Keep leaning on us! We won't let you fall!

big hugs,
Skeye

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/2/2009 5:10 AM (GMT -7)   
Thanks Chartreux,
I hope they get better too. I am tired of things as they are now , that's for sure. I've had enough decline to last me a lifetime. I will let you all know what the MRI says once I get it. The funny thing is that I have gotten pretty good at picking out stuff on them....maybe too good.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/2/2009 5:12 AM (GMT -7)   
Thank you for the good wishes WhiteBeard and welcome , by the way....I missed doing that when you first posted .
No one has to say anything profound or wise, just being heard and knowing that you are sometimes is enough . Thank you for listening and hearing me .
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/2/2009 5:15 AM (GMT -7)   
PA Lady,
I always did like Scarlett, maybe I will be her third, since you are already her second.....LOL
It is scary to think about what's to come. I always thought that sooner or later, things would "level" off, if you know what I mean.....no more deterioration, no more improvement.... I haven't had much in the way of improvement, if at all, but sure have had my share of deterioration. It's hard to believe that I am here, three years later as of the 30th of March..funnily enough , the same day I started this thread. I didn't even realize it was my "anniversary"....
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/2/2009 5:18 AM (GMT -7)   
Thanks Stray,
You're right, I do feel that I have more than enough on my plate. It's been a rough couple of days again....hopefully, the weather will ease up some and so will the pain levels. They tried to convince me to go the scs route at one point, before I found out what was really going on, and then the pain pump. I kind of look at it like this though, I have a lot of years left to have to live with this mess that was created of me.....so I need to have something available down the line, should the pain meds not work anymore, and since I continue to have problems, I really need to have some available options.....so for now, I am waiting on the scs and the pain pump.....at least, if things keep going as they have, I will have two more options available down the road.....
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/2/2009 5:21 AM (GMT -7)   
Hi Skeye,
Like I said to PA Lady , there really isn't much use in my complaining, it's not going to change anything and I tend to save it for the really "big" stuff.....LOL or my family. I like to try to help, when I can and I have learned an awful lot in dealing with this mess, so if I can help someone else, at least I have accomplished something for the day....if that makes sense??
I've been lucky in that my doctors are pretty good, minus the 1st surgeon of course....so they do try to do the right thing by me... in fact, they pushed the issues about the wheelchairs because I am so stubborn and don't want to loose what I have......it's not much, but somedays it lets me stand for a little while anyway. I don't know how well I would react to loosing my ability to do that permanently.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 4/2/2009 10:29 AM (GMT -7)   
Aw Sandi, you need a break. Yes, I understand the need to know there are still more options out there available for down the road. Its a mixed bag it seems. I have not heard of many success stories with the pump for nerve pain. The SCS is just one of those things its a real toss up on whether it will work. But thats ok, cause everyone if different with their pain. Please let us know how you are doing. Hugs, Susie


Pamela Neckpain
Veteran Member


Date Joined May 2008
Total Posts : 1821
   Posted 4/2/2009 10:54 AM (GMT -7)   
Sandi,

I hope you're feeling better soon. You have been through enough.
I know the feeling of being afraid of the MRI and what it might tell.
I had one not too long ago, and it did show something but it wasn't
total devastation as i imagined. I feel much better now that I know
part of my story. I'm not quite through but the rest will come in time.

Keep posting. The people here are great, aren't they? You get the
feeling that every single one of them is with you and kind of guiding
you through the difficult days.

I've read your diagnoses. You are a brave strong lady.

Be Well,
Pamela
MEDICAL CONDITIONS

Osteoarthritis all levels of spine right down to Coccyx,Spondilytis,Myofascial Pain
Fibromyalgia,Bulging Discs,Spinal Stenosis,Scoliosis,Osteopenia,Chronic Constipation
Carpel Tunel Syndrome, Attention Deficit Disorder,
Depression & Anxiety

Methadone for Pain, Xanax for Anxiety, and more, of course.


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/3/2009 3:19 PM (GMT -7)   
Stray,
They actually tried to push me into the scs awhile back, so I agreed to go for a consult , with the understanding that if I still was not happy with what they had to say that I would not go ahead with it. They always seem to try to push the, but it's only a trial and if you don't like how it feels, then you don't have to go through with it...and then if you do go for the trial, they try to push you into it anyway. It says on their websites that if you don't get a 50% reduction in pain, then you are not a candidate, but I read over and over, how doctors try to push patients into it, who are getting as little as 20% of their pain relieved by telling them that it will be better once the permanent leads are implanted. Garbage! And others who have been told if they don't go ahead with the permanent , then they won't get their pain meds anymore....that's not ethical in the first place and secondly, no patient should be forced into something that they are not comfortable with.
I tried a TENS unit a short time after my first surgery and it literally dropped me to the floor. My nerves do NOT like those things anywhere near them it seems. I also have lots of pain when they do those EMG's and NCV studies too, so I think it is because of the damage to all of those nerves and they just react badly to any kind of stim....another reason that I don't think that scs is for me...but anyway, as I said, I want to know that I do have another option down the road....even if it is not scs.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/3/2009 3:21 PM (GMT -7)   
Thank you Pamela. You're going through your own hell right now too. I've been known to print off a list of friends and taken it with me to appointments, especially ones that I knew were not going to be good news. It's nice to know that you have someone who cares and listens.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 4/3/2009 3:34 PM (GMT -7)   
Sandi,
I think so much gets pushed on us for the wrong reasons...probably mostly related to money, and what makes it easier for someone ELSE, not necessarily what relieves our pain, or helps make our lives a tad easier. No sense going on about that. You get what I mean!

As far as EMG's, I think there's no need for torture tactics as long as those machines are available. Don't know why the military doesn't use them.

PaLady

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 4/4/2009 6:45 PM (GMT -7)   
Hi PA Lady,
I agree with you. As patients, as much as we are told that we have final say so, I have read too many times about patients being told that if they don't do the injections or the scs trial, or this test or that test, that their doctor will no longer prescribe meds or whatever....it's sad and ridiculous that we have to tolerate that type of "treatment".
I hate EMG's....I have never had one that has not resulted in extreme pain, even though I know that most people do not have pain with them. For some reason, with me , they do cause that electrical burning pain to sear through the roof when they are done.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.

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