Can't do this anymore
 

In April 2005 an incompetent neurosugeon put a pedicle screw through my L4 nerve while attempting an L4-S1 fusion that not only did not fuse but the hardware was put in in such a strange manner that it came loose and was removed in January 2006.

I cannot stand or walk much anymore due to the extreme pain and disabilty.

I've been on Methadone, Lyrica and Cymbalta combined. Although I had some relief I wanted to die everyday.

Now I'm off meds and I can't do the pain.

My husband and I just celbrated our 20th anniversary. It's time I set both of us free from this nightmare.

I can't do with the meds and I can't do it without the.


God Bless You Guys. Pam

Oh...Pam!!!
 

Pam...please don't do what you are suggesting. My stomache turned when I read your thread. You really MUST go to the ER and tell them exactly what you just told us!!! You really need to shop for another doctor! Don't give up on relief. I promise...there IS relief for you out there. You have just been under the thumb of an inept doctor. Go right now for help!!!

You are definately in my prayers........love.....sally

Dear Pam

I am so very sorry to hear of this severe pain you are suffering and how desperate you feel

PLEASE do go to the ER if you are feeling this way and let them try to help



Pam, it is so special that you and your husband have had these 20years together. He loves you. Dont leave him. It would be a worse nightmare for him to lose you.

We are here for you Pam.
If you need to meet in the chat room just let us know
Many of also are available on Instant Messengers

We care Pam

(((((((Pam)))))))))))

I also have two numbers that you can call to talk to people who will understand

National Hopeline Network

1-800-273-8255

and

1-800-784-2433

Pam,

Please don't give up hope on finding help for your injury.
Have you looked for other doctors to get an evaluation and some suggested options?

Please check in so we can help with more suggestions and give you support while you search for help.

((((((Pam)))))),

I hope to 7734 you're not suggesting what I think you're suggesting :(

Please -- NO!! Call 1-800-suicide.

You need to be going to a neurologist and a pain management specialist at a teaching hospital.

I'll just bet that they could probably do a radio frequency lesioning to get rid of the nerve that's causing the pain.

I used to get lumbar spinal epidurals. They did absolutely nothing. I got the radio frequency lesioning done. Still nothing. Then I got the epidural done again -- over 18 months of total pain relief :D It's now starting to come back at about 20 months. I really think the the nerves re-routed after the RFL and the new nerves were in a position that was easier to get to.

Have you tried Cymbalta or Effexor XR yet?? Both of them are unbelievable for the nerve pain. I have neuropathy in my hands and feet and forearms and forelegs (??) from a blood condition. I could not stand even holding my cane before I started taking the Cymbalta. Most of the pain is gone now. I can function. I can hold my cane.

Please, sugar. Don't give up hope.

Make a plan:
First -- one of the drugs that I mentioned.
Next -- make an appointment with a SENIOR neurologist and pain management specialist (not a needle jockey) at a teaching hospital near you.
Next -- hold on to us http://chocolate-moose.p5.org.uk/MINIS/grouphug-d.gif and we'll go from there.

BIG HUGS. I'm good at doing research. If you want me to find a top-notch doctor in your area, send me a private message.

Barb

(((((pam))))))

don't give up. i know you are in severe pain. keep looking for answers. different rx's. different combinations.

reaching out here to us is the best thing. let us help. we might be able to help you do research to find you some relief.

is there anywhere close where you can do water therapy? even a health club with a heated pool where you can float or do water walking?

you have people here who care.

the survivors of suicide forum has many wonderful members. doesn't mean that you have to have tried...or have lost somebody to post there. they have understanding on how it feels to get to such a low point and how to struggle out of it.

talk to your husband pam. trust me, he won't feel better off without you.

keep posting pam. we are here for you.

Email me please
 

Hi Pam. I was wondering if you would email me. I had a very similar experience. The doctor was doing a laminectomy on L3/L4 and cut the 'dura' which exposed the nerve. It was exposed for 2 weeks before they had to do another surgery to correct the problem. However, I still cannot stand or walk for more than 5 minutes. I was on methadone, morphine, and now oxycontin and percocet with all the lovely side affects. I think we can both empathize with each other and get each other through this. It always helps to know you are not alone. Please, write me, k?

Maryanne mroesler2@aol.com

Pam,

I hope you are feeling better today.... I did send word out to a few of the members that have been on BT longer than me and might know you. This is a difficult time of the year for everyone with the holiday season quickly approaching. It causes those without pain stress, so those of us with chronic pain feel the pain of this season 100 times more. Please check in and let us know that you are okay today and were just feeling a little down and in a lot of pain last night...

Gloria

If anybody hears...
 

If anybody hears from Pam, please let me know. I am sick at heart.

sally

still trying
 

thanks everyone,

I am still trying to hang on. I have an appt with an orthapaedic surgeon in Denver on Jan 5th. I hope I can make it that long.

None of the meds ever really helped me. The surgeon who took out my hardware in January also tore my Dura.

My stepdaughter took her life Christmas of 2003. I try so hard not to quit but I am so tired.

I will try to talk to you individually when I can manage it. Pam

((((((Pam)))))),

Too much pain and too much heartache for one person to have to cope with :(

I wish we could all take turns holding you until some of the pain and some of the heartache lets up http://chocolate-moose.p5.org.uk/MINIS/grouphug-d.gif

I know how hard it is to lose a family member to suicide. My Brother killed himself 40 years ago last October 24th :( It's the hardest thing I've ever had to go through. I wish -- I wish -- society would teach kids how to cope with life. I wish everyone knew that suicide never solves problems. It just transfers them to the survivors.

Pam, I know some of the 7734 that you're in now. Not "exactly" -- but similar.

Would it help for you to connect up with a bunch of us -- sort of like a "helping hand" chain?? -- my instant messaging is active. I'm sure there are others that would be willing to help you through this too.

Pam, please hang on tight to all of us. There's a better way than what you've been thinking lately. Do you have someone in your "real life" that you can have 'soul conversations' with?? If you don't -- it might be a good idea to hook up short-term with a psychiatrist who can help you until you get your balance back.

No one knows how much 'disruption' suicide causes to EVERYONE around -- fellow students, co-workers, spouses, relatives, friends. It rains hell down on everyone. It affects everyone. It makes suicide "an option" for everyone that's been even remotely affected by it.

I read a book once -- it explained "Jewish Therapy" -->> tea and talking until the pain and hopelessness that you feel become just experiences that you share with your fellow human beings. That's what you need to do, sugar, talk this all OUT -- get it out of your system -->> so it doesn't hurt so much, so you can work on it, so you can cope with it.

Bless you, Pam. BIG HUGS. Send me an instant message -- ANY TIME you want to talk.

Barb

Thank you for checking in - the RSD forum is worried about you also.

Did you request to be called earlier if any cancellations or opening came up? {I just learned about doing that for urgent situations}

((((Pam))))
I am so relieved to see you here, tho so sorry for the pain you suffer.

please know that there are many people here who really care about you.
I do hope you will find a docotr who can prescribe the right med to help you with this pain

more gentle (((((hugs)))))

Hey, Dodrill...
 

Hey, Dodrill. I have been worried sick about you. I can't say that i have the same pain that you have, but I have pain that is usually about 9 on the pain scale...cry-worthy. My pain is also progressive. Recently, I found a doc who has finally found something that helps me a lot, and I am so thankful. Pain really causes depression...and as you know, depression causes the pain to be worse. Please don't ever give up. It is a matter of finding the right doc. If the ones you have are not doing anything for you...move on to others until you find relief. Many say that we should not shop doctors, but if I had not, I would still be in h***. Do not let them make you think that you have to put up with it. I had a doc one time who told me that I would just have to get use to it. Needless to say, I flipped. Depression does not say enough to what that doc did to me.

You are too sweet to have to put up with the pain like that. Nobody cares about our pain as much as we do. Learn to fight again. Fight for what you know is real. Find the right doc. We would surely miss you. We certainly could use another good friend.

Your friend.....sally

Please Pam talk to us~
 

Pam, I don't know you, but most on this forum know spinal pain and will listen anytime you feel like talking. Please call that doctor back up, and explain the severe pain you are in.

This happen to me in September and I called mine up and told his nurse I couldn't take the pain two weeks longer. They got me in less than a week. They already knew my problem and even the doctor called me to have me tell him exactlly what the pain was like. I had second degree burns on my back where the heating pad had burned my back. I just couldn't take it either. My husband had passed away in July and that pain was fresh too. I did let them know that this wasn't emotional but severe pain. I kept loosing the skin on my back where the burn was, and it was close to the surgery place.

Talk to us anytime. I don't sleep well and you probably don't either. You can PM any of us if you don't want it on the forum. We will understand.
Blessings,
Billie

Dodrill...please check back in from time to time...
 

Dodrill, please check in with us from time to time. You are on our minds, and care. Just let us know if anything changes...or...if you ever feel that way again.

Your friend.....sally

Hi Pam,
I don't know how I missed this thread but only found it tonight, or should I say this morning. I stay in so much pain I can't sleep, so I'm up and down all night.
Please try and hang on hon. When a person is in so much pain, and can't get relief, they can't think straight , they become depressed and then it starts to become unbearable. You feel like you are in this hole and can't get out. You're just so tired of the pain, you want it to end. Then you start to think of ways to end it. Should I take a bunch of pills? Should I use a gun? Pam, I have been there. I've been there several times. But, something deep inside kept telling me no. You can fight this. You have to. You must. Think of your husband. He is going through the pain of losing your daughter. You don't want him to go through it again and lose you. He may not make it if he doesn't have you. Twenty years is something to be proud of. You, two, must have something special to be together after all these years. Think of him and what it would do to him.
There are alot of us here that know your pain. We feel it, we feel for you. If you will let us, we will get you through this. It will get better, I promise. Wait until you see the OS. The 5th may seem like a lifetime away, but it isn't really. Keep hanging on. You can do this. We will help you.
Please, keep posting and let us know how you are doing.
We really care,
Linda

Thanks Everyone
 

I am still trying to hang in there. The doc I'm supposed to see in Denver won't be available until my Jan 5th appointment. I keep telling myself I can last until then.

My husband says if my mood doesn't improve and I remain suicidal he is going to drag me somewhere for help.

I'm so weary of all this and I'm sure you guys are weary of your pain as well. I wish I was noble and brave but I just don't seem to have it in me anymore.

Your posts have helped so much. Thank you. I will post again when I am able to sit up a while.

Does your back get weak and hurt more if you lie down a lot? I think that's what may be happening as well.

Thanks again, Pam

((((((Pam)))))),

http://chocolate-moose.p5.org.uk/MIN...bears-mini.gif

I wish you weren't suffering so much. Make sure you tell that doctor that you'll take a cancellation appointment. There's bound to be cancellations with the holidays and vacations and the flu.

I remember the horrible pain that I was in from a subway accident over 25 years ago. I had to stay in bed a month. If I hadn't had my cat, Fluffy, I would have lost my mind -- he slept with me all day and night. If you're laying down a lot, try laying on your side and pulling your legs up into the fetal position -- it opens up the spine.

When I was going through that whole period, the orthopedist told me that you lose a lot of muscle mass and strength when you stay in bed for a week. They actually do not recommend that much bed-rest anymore.

There are other positions that take the stress off the back without your having to go to bed -- sit in a well-padded Boston rocker and put your feet up high, like on the bed or the armrests of the sofa. Sit on the sofa with bed pillows behind your back and your feet on top of bed pillows on the coffee table. Sometimes laying on the floor on your side in a "sun patch" with your bed pillow helps. (I got this one from my cats. They seems so relaxed when they're laying in the sun patch, especially in the Winter, I figured I try it. It's so warm and inviting -- it feels good!)


Try different chairs and sofas and beds in your house -- sometimes just a little change will help. I used to take a nap in my son's bed when he was in elementary school.

Hang on tight, Pam. You'll get through this. We and your husband will help you. The offer to write if you need to is ALWAYS open.

BIG HUGS.

Barb

I'm awake Pam~
 

I went shopping yesterday and my knee throbs when I turn in bed. I wish now I had of got up and seen your post. I too have had many surgeries on my back, and know pain well.

Barb is right, sometimes you don't have to be in bed to get comfortable. Have you ever had a back brace? I couldn't function without one. Also a heating pad or a cold pack will help. One or the other, just be careful you don't get burned with the heating pad. I have done that too! Do you have pain pills that give you any relief? I get some relief from Alieve also which is over the counter.

I will pray for you Pam, with all my heart. Hang in there and keep talking to us. It is just 23 more days now. I hope you do call and tell them you are in severe pain and would take any available date open. Did you consider going to the emergency at the nearest hospital? There is help available, if you will let them know. You are suffering enough to go to the hospital NOW. That's what they are there for. If you can't stand it tell your husband to take you. I'm sure he would.
K
Kind Regards,
Billie

Pam,
I send you a PM...don't know if you got it. What I wanted to tell you that since you said you were going to a surgeon in Denver, that I know of a good pain management doctor in Boulder. I sent via PM his name and website if you wanted to check it out. When I was referred there, I got in to see the doctor within a few days. Actually, I saw the neurosurgeon there within a few days for my initial appointment as well. Send me a PM if you want any more info. Take care of yourself.

Kay

Hello Everyone
 

Thanks again for your posts.

We made it back to Denver tonight. My back and RSD are miserable after the long ride but at least we made it.

Dec. 26th was the 3rd anniversary of our daughters suicide and we got through that again.

I see the spinal surgeon on Friday. I don't hold out a lot of hope for much help but I will go anyway. Other Doc's have said nothing could be done.

I hope all of you will have a great new year. I still find myself hoping I won't be here for another one but I got this far so who knows?

I appreciate the PM's I received as well. You are super people. Pam

Pam,
I was glad to see you posting again...sorry that you've had to endure so much. Keep pushing for a doctor to help...there is relief out there! If the doctor you see this week doesn't have an answer, ask him or her for a recommendation for someone else to see. Take your husband to the appointment, and make sure the doctor knows how much pain you are really in, and how it's affected your quality of life.

Everyone here is sending you best wishes and hope for help.

Kay

Hi Pam~
 

I'm so glad to hear your still hanging in there! Please don't give up hope. It has been so hard on you and you have already been threw so much. We all still care and encourage you to write when you need someone to talk to. There will be a doctor that will help help you. I have a poster on my wall that say's: LORD HELP ME TO HANG IN THERE!

Ask for help when you need it, and yes, take your hubby along with you. You need each other so much. We are here for you.
Hugs,
Billie
http://i79.photobucket.com/albums/j1...0ab84d1ccr.gif

Pam,
I hope the snow didn't keep you from getting to your doctor's appointment. I'm near the foothills not too far from Denver and we've got 10 inches of snow now. On top of the ice that's left from the last 2 storms, driving is awful!

Let us know how things went. And take care!

Kay

Anyone heard from Pam? Just wondering if she's OK and if her appt was helpful.

Sorry, I haven't heard a thing. I've been wondering too! I really care too.:hug:
Billie

Hi! I'm new here
 

Hello everyone! I want to start by saying I am so very sorry for your pain. I was searching for answers - anything - that might help my husband and found your site. He too suffers from severe, dibilitating pain and your posts seemed somehow comforting. Please don't take that wrong - I just mean that we aren't alone. None of our friends understand that we can't go out for an evening like we used to and most of them have just stopped calling or coming around. It's been 4 yrs since he was rear-ended at a high speed. He had surgery to repair a bulging disk. It worked for a few days then a fragment broke off and wedged next to the nerve. They re-operated but by that time he had nerve damage. Now he has spinal stenosis due to extreme inflamation of the nerve root, scarring, more bulging of the disks and let's not forget a spinal benign tumor. I can't remember what it's called. It's just something that grows sometimes when there's a trauma.

He tried medicine after medicine. Then we had a medtronic spinal implant put in. It's similar to a tens unit but is implanted. It has reduced his pain 50% and worked great for over a year. He went from being able to not function to doing well enought that he was almost ready to go back to work. Then the scarring around the nerve root got worse and he's miserable again. Now they are talking about a fusion to help with the stenosis.

Pam, this part is for you - Please don't even think about it! My husband has said the same thing and I had to somehow make him understand how much I loved him and what he meant to me and how a large part of me would cease to exist if anything happened to him. He thought he was a burden to me and my life would be better without him. NO WAY! He is my life - he and our children. We are now looking at any information we can get. We are checking out new clinical trials going on around the world that might help. I don't know what is causing your pain but DO NOT GIVE UP. There is something out there - someone that can help you.

I know this is a novel and I hope I didn't tread into a personal matter. You all know each other and I'm new here.

Resa,
 

I have had all your husbands problems. Don't give up hope. I have had 6 spinal surgeries including the Medtronics Implant. He probably needs spinal fusion. I have had stenosis too. I also have the nerve damage. I was operated on in September and I am so much better. What keeps happening is I continue to grow a lot of scare tissue and in time it bothers my nerves and has to be removed again. I also had to have my implant taken out in Sept. Mine done no good from day one. I am glad your husband got some relief.

This last surgery has done a world of good. I can't say yet about the scare tissue at this sight tho. Time will tell. never give up hope. I have been fused from L 2 threw S 1. Someone else on here has had the growth you are taking about. I haven't. Hang in there and trust your DR. If not, get a new one.
____________
Fancylady:hug:

Hello Everyone
 

Hi

I haven't posted because I really don't know anything yet. I certainly appreciate your concern. Thank you so much.

My appointment with the Dr. didn't amount to much. He wants me to have an MRI and return to see him. I am scheduled for Jan 31st to do both. It's taken a long time due to my insurance certification for the procedure running out before they had me on the schedule and then they tried to schedule me at night when there isn't a doctor available. I have RSD in both arms so I need a butterfly needle for the conrast dye and a dr. insert it.

I am feeling better mentally than before. Now that I am totally off pain meds my mind isn't in such a mess. The pain is about the same as it was when I was taking all that junk.

I'm using self hypnosis and learning about meditation for chronic pain. We don't have RX insurance and my meds cost $8,500.00 last year alone. We make too much for any assistance. I spent so much time researching to find a low cost plan but to no avail.

Again, thank you so much for your concern and I will post after I get my results.

Pam

Dear Pam~
 

Thanks Pam, we have worried so much. Hang in there, we care.It is standard procedure to get an MRI. Mine didn't hurt at the time, but afterwards I was sore for about three days. Its nothing compaired to the pain your going threw now. I'll pray for you.:hug:
_____
Billie:)

Pam,
So glad to see you've posted again. I hope your MRI shows something the doctor can help you with. And that's very impressive to be all off pain meds, although I do understand in that sometimes the side effects are worse than the benefits. We'll keep you in our thoughts!

Kay

Fancylady - thanks for your reply. 6 surgeries! Wow! Husband's had 3 plus the medtronics. Yesterday they were going to do a discogram to see if the disks were the problem but they decided against it at the last minute. the Docs didn't want to cause him that much more pain for just a test - afraid it might cause his heart arteries to spasm from the pain. They injected the nerve with ladicaine (spelling???) and said between the last 2 injections and this one they had pinpointed with relative certainty the problem. We go see the surgeon for fusion consultation.

Did it help you a lot? I sure hope so.

Hi Resa~
 

Yes, the surgery did help a lot. I do know the sooner you get up the better off you will be. I always get up the the day they do surgery anymore. I have had two Discograms and had one before this last surgery. It wasn't to painful when they done it, but that night they made me stay in a hotel and see my surgeon the next day. He knew I would be in pain, but he didn't tell me. I don't have any heart problems tho. I was in pain all night and had my girlfriends with me. One couldn't sleep at all because of me carrying on so much. I don't why the pain, but it did hurt. both times. Good luck with the surgery. Going in with a positive attidude helps also.
__________
Fancylady:)

MRI results
 

Hi everyone,

I finally had MRI yesterday. As usual I had a problem show up. I have a fluid build up at L4 and L5. I had it in April and my surgeon aspirated it. But it has returned. I am having it aspirated again on Monday. I need to get another MRI in 4 months and if it returns I will need yet another surgery. That will make 6 surgeries since 2002. I'm so discouraged. I so want to be through with doctors, injections, pain meds, and most of all surgeries.

Thanks so much for all your support. I am so weary of all this crap.

Pam

Dearest Pam~
 

I understand, but please don't give up hope. I have had six back surgeries and the 6 th one has worked or go to another surgeon. Everytime they say another one I think, oh no, I can't go threw this another time because it is so painful. Thank God I went threw it again last September, for I am a walking mircle. I don't have hardly any pain now. I can't even remember when I had a pain pill last. Guessing maybe in October, for I helped paint a country home. Hang in there PAM, your day is coming! Praise God I can feel it!:hug:
________
Fancylady:)

Edit to add: I will continue to pray for you.:hug:

Pam-

I know exactly what you are going through. I had a bad 3 level ACDF (c4/5/6/7) done by a quack. I spent 8 days in the ICU after the surgery trying to survive. My recovery was compounded with the fact that my father was in a nursing home dying from a brain tumor at the same time I was in the hospital. I prayed every night to die.

My prayers are never answered, but I somehow made it out. It took 2 years to recover, but in the mean time, I leaned on my physiatrist, and he immediately got me some antidepressants to help with my mood. Please see one of your doctors to help you here.

I don't have the problem with affording meds thanks to insurance, but I've got a couple of sites that you might want to look into to see if you can get your meds at a reduced cost or possibly free.

http://www.rxassist.org/Default.cfm
www.needymeds.com

Take a look at them, register and see if they might help.

Make sure you get a 3rd, 4th, and 5th Neurosurgeon opinion before you decide to do anything drastic. Make sure you've tried everything before you take that step.

joe

Hope things work out well for you Pam, I have been thinking of you since i first read about you when i joined last week. I was glad to hear someone mention the discogram. I had one a month ago. One neuro said my mri showed no problems...so i went to another for a second opinion. He said the mri showed 2 bad discs C5-6 and C6-7 but wanted a discogram. the procedure wasn't too bad, but after...:eek: ...I was laid up for 4 days...the ache was bad, but the shooting pains were unbearable. it showed both discs were very bad indeed, and i go for acdf on feb. 28th. He says i can go back to work in 2-3 weeks, because he is going to use a "ton of metal"...I am a printer (hence the cute name) and do heavy lifting and much arm movement.
Thanks for listening, Dave

P.S. I am not a sports fan, but since it is superbowl weekend..here goes...

GO (insert name of team of your choice here)!!!!:)

Pam,
Sorry to hear you're feeling down about the MRI results. I hope getting the fluid removed eases some of your pain. If it comes back, what kind of surgery is the doctor suggesting? I know I've only had a couple of surgeries, and I wouldn't want to rush into another, but if I had hope that it might help, I'd go for it. We're all here to support you, and hope that things get better in the near future. Keep up your spirits, and if you can get some help with feeling depressed, that would be good too.

Take care,

Kay

You are Amazing!
 

I just have to say that you are the most amazing people I have seen. You are going thru so much but yet you are so supportive and kind and helpful. From my heart, thank you so much.

Fancy Lady - thank you for sharing that your last surgery worked. Everytime my husband has surgery I think "this is it", but it hasn't been. I was down about fusion surgery, but you have given us hope. Thank you.

Resa