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degenerative spinal disease,Failed back syndome (lumbar w discetomy,Radiculopathy,cervical spodylosis,fusion C5&6, titaniem rod,screws and plate ,Degenerative disc disease

Started by rene on 09/02/2012 10:05pm

I recently posted my blog , which is quite long, u can read my issue under that blog headed ITS been one year since my last blog,home my new info helps.

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Hi, Rene, I'm new to the community. Can you tell me how I can find your long ITS blog? How do I do a search? I have had 2 cervical fusions following brutal ruptures. 90% of my pain disappeared. Other than slightly limited neck mobility, I'm in decent shape.

Unfortunately, I just had a disectomy on my L-5, S-1. I'm now in the Failed Back Syndrome category. Unlike my cervical surgeries, where I had immediate relief, my lumbar surgery cause my pain level to double. I'm just now doing research into what the next step is. So far it's just pain management. I can't put any weight on my right leg and narcotic pain meds barely touch it. It has been suggested that I have a spinal stimulator implanted, but I was hoping for something to address the cause. Any words of wisdom would be appreciated!

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Hi Randy it has 14 hits , just click on blog w my pic on it, ( not this one) start at top n scroll down n youll find it. it the blog squares last sentece says who wrote it...anyway. your surgeriies r similir to mine, I too hav back failed syndrome, thats why wr always in pain, not a day in over 2 yrs 4 me. And not working is just as worse, feel like a fish in fishbowl....only go out to doc apts,,,WHOOPIE..I am an orthopedic nurse for 12yrs. FBS is basically a label they give surgeries that fixed the structure but will always have pain,some r lucky...comes from smoking too, and Im a smoker, if my 1st surgeon would have stressed that to me being a nurse i would have listened knowing this would b such a painful life. but we neeed to say it could b worse,,,could b cancer n children die so,,I try to b positive,but it hurts nsuck and we get so angry,so I def hear ya my friend..any ?s, will b happy to help if I can. goodnight Rene....and what caused youre issue?

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rene, sorry, i must be a moron. still can't find your other longer blog.

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To ALL,,, IM cooked, fried, tired of not receiving the correct Pain managemnt, docs sayin im deppressed n its causing the pain..Well Its NOT in our heads where in pain..When are these docs going to stick to their OATH, to help those,,and stop playin the $ asspect or their worry of there licence,( Yet we have the documentaion ) and they verbally achknowledge the pain but wont address it...Trust me when I say its a game,,I know the system ,( Im A Nurse)..I read everyone screaming for help and where getting knowhere n their getting richer. All I ask of them is to b comfortable,, not druged up, We All want our lives back..The surgeries work n some dont,,,some get help w the injections n some dont,,Implants n so forth.If those of us who have tried everything, spent thousands,,and if the onlything but oral meds work ,thats where we hit the dead end, Mine says Heres a month of Percacets, 7.5/325 n not to exceed 5 per dayn n thats ALL, and they expect us to function n not b depressed..R They kidding? Sorry, having a bad week,,Rene :( :(

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Its two yrs. now I"m not to sure on all the hight teck words ,but They replaced 4 discs with the newest teck stuff in my neck.Also the two very bottom discs were fused together so they just lelf them. then they took out 4 more and added rods and plates,so i have missing vertabra in my back with rods and screws,the 4 artif, in my neck is also with plates and screws.My spine was so smashed down have lost most nerve in my legs and feet.oh yah im diabetic.My sholder hurts alot with my elbo.
Im on disablity and in not muh longer i will be on Medicare. then maybe i can get some real pain
control.As these lower tabs at 6 a day arent helping much.I just wanted to talk to somebody about it.
Pain day after day is getting so hard to live with,Sometimes i have bad thoughts about living.
If any body feels the same i would be happy to talk on here or e-mail.THANKS

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BIGNAP, please start a new thread or discussion. It would be a lot better not living through our bad lives of Pain. But we have kids and lovedones that need us real bad. Will all die soon enough. I was a big money maker. Now `i`m going for free serves. Never would I think pain could be so bad. The money part is nothing. I`d love to have one week pain free. That would be a gift, Just try and try to get better. I`m had/having 3 surgeries this year to help pain. I hope this SCS helps that go`s in on the 11th helps me. I`m 51 can`t work have a 9 yr old. I will never give up. I know how you feel though. Sam

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Big niap, I have to answer that question honestly and say YES, I and many others feel like giving up,I try so hard to dig deep into my heart and pray for the strenghth to get these thoughts out of my head as u too r feeling,,but im still here...I find hope from this site only, from hearing that im not alone w these thoughts, but I still keep chugging along. Its normal to feel this way, we go from having normal lifes to BAM,,its all changed,both financially and mentally.Dont give in to that awful demon that rides on our shoulders daily....As far as your healing,,being a diabetic makes it even a longer process,unfortunatly,,Hang in there,,as I will do the same.There has to b a rainbow somewhere for us. Ur not alone. Rene :)

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Wow, someone voiced my thoughts and it wasn't me!

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Hi ontheotherhand,,Isnt it sad what we all are thinking,,I do hope and pray noone falls deep enough to actually do it. If it wasnt for my grown daughters,that I look so forward in the planning of their weddings and future grandchildren, I think that demon would have won already.Society needs to be made more aware of these dibilitations we r going through, maybe then the docs would be more helpful w/ the medicines we depend on to just get out of bed.Instead we suffer because of their mistakes they have made in the past by writing those scripts to those whom did not warrent them. I see it on the news everyday how the FDA is cracking down on them,and for that we suffer and have these horrible thoughts. I pray for us all,,,,Rene :)

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Very touching, real life shares. We all know those dark thoughts in the middle of the night as we try to hold on.

PAIN MANAGEMENT QUESTION;

My Pain Management clinic just "dismissed" me for going to too many doctors over time for pain meds. All legit. The last two doc's were from the hospital, the one before that was my knee surgeon and my neurosurgeon.. I also tossed my dilaudid and oxycontin that I was presecribed post op when I got home from the hospital after my surgery. BIG MISTAKE. I'm a long term recovering alcoholic/addict and I didn't want them around the house. I take percocet. So I'm still in pain, my surgeon won't help and new pain management clinics won't take me because I was dismissed.

Any ideas? I'm running out!

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Thanks Rene,Its true now i have someone to talk with and its so very helpfull.
Im still trying to get a pic on here? Thanks everyone i now have alot more to look forward to.

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Morning Bigniap,,Glad to hav helped,, the "Demon" will always B there, so Im just checkin in on U to see if u have been able (at times) to tell him to go away, and ur not gonna ruin my day today..Thats what I try to do,,expecially on the weekends,I battle him during the week bcause im alone N everyone is at work,but comes the weekend when the family is home,I kick his A__,N shooo him away. Do U have a spouse n kids? What meds R u on? Maybe I can help U there w/ some suggestions. I cant find ur blog so I can keep in contact w/u more frequently. Feel better, Rene :)

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Hi Rene,

It has been a whirlwind trying to get back on here to post. But I am.. Finally. I am glad that you are hanging in there! I too am struggling with the thoughts of how long can this lifestyle of pain go on...
I am telling myself I only have to get through today. My anxiety is increasing with each passing day as surgery day inches closer. I have been using the heck out of my iPad these days. I found some meditation for pain and anxiety in searching podcasts. They are helpful for me and I am working on getting things set so I can use these tools during recovery. Have you ever tried using a meditative type program? Or alternative type relaxation music when you are having a bad day? It has been helping me "reset" my mind so feeling good overpowers the pain. I find that it is a full time job with lousy pay to keep my thoughts positive and pain tolerable.
I'm hoping you are getting some relief these days. Let me know how you are and hopefully I won't do anything or say anything that gets me kicked out again!

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Good morning Rene & family. Im doing alot better now.Thanks.
I was oxy for about 2 years,but my child-a girl was stealing them and was got the best of for a while.
Back to lowertab @ six a day is worthless.Im waitting for medicare next feb so i can aford to now go back to them.
It was very nice to see your hello and checking up on me.Thank you & your family. Back at you later.
Tom.

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Hi Tom, I cant find ur blog, u need to start a new one so I can keep tabs on u,haha. Sorry to hear of the oxy situation w/ ur daughter,Kids will b kids and unfortunatly some dont make it by exploring,,I hope shes OK. All I can say is growing up in the 80s during the Club scene,The things we did I dont know how we survived. Sad , how many we hear of today that dont make it..Why is it wisdom comes when we are older when its the youth that need the wisdom to learn how precious life is and dabling can cost U your life...Anyway , sounds like ur in a better frame of mind and im very happy to hear it. Stay well and we"ll chat again,,goodnight, Rene

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Hi Rene!
Thanks for writing me yesterday. :) you are the first one. I was so excited. I will post more tomorrow.I have all of my MRI info so it'll make more sense in chronological order and in medical terms. I'm so sorry! I accidentally pressed a sign next to the box. If you like the response. I pressed like but the box says : -1????i loved your response. So sweet. Pleas sleep writing me and don't hold it against me - please. My fingernails are long and I keep erasing the stuff I type. So I'm keeping this short. I thin you are great and very brave.
It's awful how they give you painkillers and make you feel guilty or like you just want them. No one just wants them. I hate the fact I need pain meds. It is what it is. But they make you feel like you have to beg for it, or you're not doing enough exercise,etc. That's how my current insurance company is. You are a strong woman. I can't wait to read your story. You are right. We have a lot of similarities. Hang in there. It's good to know you have a friend who understands what you are going through.
Norskigirl

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Hi again!
I feel silly. I'm so new at this. I can't find your original blog so I can read your story and I can't find it. Can anyone help me please?
Thank you!
Norskigirl

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Hello, Everyone,
Thought I'd jump in and just share a bit as it's 4 am and I'm on my first cup of coffee, just praying for the meds to kick in. I've been taking ambien a bit lately. Sleep is bliss. As I had mentioned in another post, after my lumber surgery my pain doubled and all heck broke lose. You know the drill. Just your whole LIFE seems to be falling apart. I then had a from the side epidural, which actually took about 25% of the pain away. A huge step. I've decided to go through two more. (Hoping to dodge the meningitis along the way) What I've learned is that inflammation is such a huge contributing factor to pain. My nerve had been so compressed and beaten up it's only natural it's yelling back at me.

RENE--I took your advice and tried flexeril. It helps a bit but make my heart race. It's feels like I'm on steroids. But it's better than the pain. Thank your for your advice. It's clear you're a pro with all of this.

One last thing...It just astounds me that this state of life exists. The medical community has invested so much in trying to correct the architecture of spines the resulting effects go to the wayside. I mean, my Doctor spoke to me ONCE after my surgery--when I was half under!! He just disappeared. But then I read about war vets coming back home all shot up and realize my pain is probably nothing compared to theirs. Ooops---I THOUGHT I learned not to think about this stuff too much at 4 am!
Randy

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I though I was the only 4 a.m. coffee drinker!
Randy,
Do you mean you don't have any pain management? I understand what you were trying to avoid when you threw all meds away, I have done the same thing. I have also drank to help the pain meds work a bit better...it actually worked too. I'm sure most have done some things we shouldn't have just to get some relief. Most people don't understand what the words "chronic pain" mean, the extent it effects your whole life, your very being. I try to explain to people, but it really is a case of "walking a mile in these shoes" type of thing, as are most things in life.
Have you tried the Butrans patch? I use them sometimes and they really work for me.
Hoping you find some relief soon,
Janet

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Hi Rene. Can you tell me where the blog is?
I hope you and your family are well.NIAP.

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Hi NIAP, u hav to scroll or hit next page till u can find ur blog. The family is good ,thanx 4 asking, wish I was doing good,,I had a bad day. went to consult w/ a new Pain management doc,, to only get dissapointed by my treatment. Usual story,,never getting the correct pain management and to B told ,and Im quoting him " you dp know how the FDA is crackingdown on the distrabutionof pain meds",,,,OK so WE have to suffer due to this,,we have the documentation that warrents them,its not my fault U docs were perscribing to all the toothless wonders for no reason and now we have to suffer due to it.Then why do u call yourselves Pain Management doctors,,,its more like heres 2 Tylenols and let me bill u 200.00 for NOTHING.Im so fed up with this..NY is the hardest state (LONG ISLAND) to receive the proper care im finding. Hows it by U? ...I have a feeling this is gonna B a long night 4 me,,I forget what its like to sleep more than 4 hours, As everyone else is sleeping in this house, I just want to Bang Pots and wake them all up and say if I have to suffer ur gonna suffer w/me, especially Hubby. Im married to a very large (not fat) European Italian w/ no compassion, all he says is U know how hard my job is im tired,,well u know what, im tired too, can U atleast show me some attention,,youd think after 26yrs Id B use to it,,( NOT ). I think im just cranky since this whole sh--t started, its going to B 2yrs and ive had enough!!!!!! We all have,,we all just want our lives back, instead we all just get worse and more cranky.2morrow is my daughters 25th bday,We have a big dinner planned, I might as well go start cooking maybe it will get my mind of this crap,,cooking is my therapy,She asked for a big fish dinner, Im expecting 18 people 4 dinner. She wants spaghetti n clams, shrimp,chix cutlets,broccoli Rabbi stuffed clams, fried calamari and all the fixins,,so thats what im gonna do now, start preping, maybe Ill get out of this funk...ALL ARE WELCOME,lol RENE :)

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Rene,
I'm coming to your house! I ate chicken n dumplings with a glass of sherry...(ok, more than one glass, I was having a rough day).
Hope the birthday dinner goes well, I would say don't over do it but that's what we do right, in our attempt at normalcy?
Have you checked with other Dr.'s yet, maybe not someone in pain management?
Janet

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I am in a black hole as far as pain management goes. I got fed up with how poorly communication and follow through we're going with them. The last straw I stormed into the office told them how I felt and that I would no longer be needing their services. I wrote a certified letter to the PM DOC and copied to my primary and neuro surgeon. So now I need to refill my Cymbalta... My primary told me PM must do it... Well they won't because I am no longer a patient of them. At this point I am just going to stop taking it. I can save myself the expensive copay. This is health care?? When you take charge of your own care and make decisions you get slammed.

I figured I would probably have to find another pm after surgery.

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Good Afternoon All!
I am so thankful for this forum. I can't tell you how great it is to come upon this specific one. I am 4 and a half weeks out of my second fusion. I also suffer from other chronic pain issues. I too deal with the demons that you all have spoke of. I have been fighting all this for 8 long years... I have been on meds the whole time, which to be honest, aren't working real well. Yet I have a mother with whom I love dearly, on a daily basis telling me that I don't need the pills. She has never gone through anything like this. I realize that while yes I may be dependent upon them, I am so not addicted, I don't take more than I should, unless my day is really bad. She has been trying to get me to get out since early last week. I told her I wasn't ready and she argued with me about it, telling me that I didn't need to keep doing what I am doing. What does she expect? My neuro has already told me that I will be on the meds for the rest of my life. Hope all are doing well.

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Hi everyone,
I' m a newbie here. Thank you for being a warm and caring community! Supporting and listening is important. I feel like I'm not alone. My family doesn't want to hear about me being in pain. I don't want to dwell on it. There's just some days you want to say, I'm in pain. Done voicing it. There's something about being able to share your thoughts, experience, and hope that helps others and yourself at the same time. I saw something pretty cool today. An American Olympian runner (I think his name is Mayo) ran with a broken leg! What was amazing is his attitude about pain and mind over matter . I know this only goes so far some days. His message is: Faith, focus, finish! I try to look for inspiration, prayer, meditation, etc. to keep moving forward. Hope this helps.:)
To help with pain after a lumbar and a cervical fusion these things have helped me: my long moist heat heating pad (lifelong guaranty from Walmart), moveable ice packs that I put in pillow cases, a TENS unit I got from Amazon, gentle stretching (helps with muscle spasms - I get them up and down my spine) , and walking. I am on pain meds. Finally have some relief after feeling like a human guinea pig. I've been reading the previous posts.You all inspire me. I lost a great career. I'm only 51. I have 4 kids from 19 to 25 yrs. I refuse to give up. We all have people that love us. My lifestyle has changed too. I try to make a gratitude list and be thankful for what I do have.
Rene- Hope your daughter's birthday was a happy one.! I'm impressed you cooked such a wonderful meal. We both have 25 yr. old kids! Another thing in common.
Another thing with sitting that helps me with keeping spine alignment is to make sure I don't tuck my head down when reading or writing. I'll pay for it if I'm not careful when doing anything. A Lazy boy chair sure helps. Then I can use heat and ice. While sleeping I like the memory foam pillows. What works for one person might not work for you. Only suggestions.:)
Hope you all are having a great day! Norski

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Hi Dana,
So sorry to hear your loved one is not being supportive in all the ways you need. I've encountered the same response. I've had two fusions in two yrs. and my neurosurgeon told me I would always be in pain. I will start out as a 5 out of 10 on the pain scale on a good day. Wow, that really trilled me. Not. Some family members are understanding. Other people don't understand or grasp what our reality is. I was also told to " find my new normal." Wish some medical folks would think about what they say to us. I went so far as to pass out an article about pain. Loved ones want to protect us. It is what it is though. This is for a lifetime. You are doing the best you can so be easy on yourself. My husband has been wonderful. He had to go to my dr. Apps and hear more than once about my issues, and pain from neurosurgeons, pain doctors, etc. I hope you get the support and understanding you need. You need pain medication to help you with your daily activities. We here back you! Have a good evening!:) norskigirl

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Thanxs Everyone for u responce,,dinner went well, we ate like pigs, and I was happy. now that they all left, why is it the pain returns,,cant stand it,,waiting for the day I have grandchildren so they can keep my mind of this pain,,its all about being distracted.where was everyone? I was expecting U all to join us for dinner,,lol...Hope everyone had a pleasant day,,thanxs for making me smile..Rene :)

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Thanks Norskgirl!
You are the first one to put it into words. My husband is good with the health issues, he just isn't good with the cleaning the house and cooking thing. My mom is the one I am getting all the grief from. This morning it was about not eatting. I eat, when I feel like I can. Of course she is on her way here, she doesn't live far away, so I am sure I will hear about the meds again. I don't know, it would just be nice to go one day without hearing the junk ya know. My mom has been to appointments with me as well and heard that I would be on the meds the rest of my life too, She swears it is mind over matter. If only it were that easy. I am glad that your husband is so good to you. Thank you for reading my ramblings, and responding.

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To ALL, I go through the same thing with the meds only I get ganged up by about 30 people,,my kids.parents and all the inlaws,,so you know what,,make your life simply and dont disclose it to anyone, thats what I do,,obviously we cant get them to understand , so I gave up on that battle, N I trust noone, I hide them and I hide when I take them, its not worth the aggrevation of their ignorance, they all should have a taste of what we feel in one day or get a huge Pimple,( no a huge BOIL) on the tip of their private parts, and let me squeeze the hell out of it. Ahhh ,,I feel better now..Im so evil,,but I was a very compassionate nurse and I do show lots of love to those whom are around me,but when I get angry,,watch out.....Dont get the wrong immpession about me everyone,,I really am A huge hearted,affectionate person, but when Im in pain,,thats when I get evil,but I try to control it, Like now, they are all upstairs laughin n giigling so I just remove myself (w/ some sambuca on ice) and chat w/ my fellow pain friens,,I Love You All !!!!! U keep me sane,and by giving medical advice I atleast feel like a nurse,,God I miss my Job,,Im a caregiver not a receiver,,thats my psych issue,,I miss my nursing..hope everyone has a pleasant evening,,Rene :) :)

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Rene, well said! You have a way with words. I'm with you. Don't tell anyone about things they don't understand. I've had people try to take my meds, think I don't need them, etc. Hide them. If you follow your doctor's orders then that's what you do. I feel better too when I can chat with all of you who understand. Last night I was awake every 2 hrs due to being uncomfortable. Hopefully tonight is better. I try to be positive, but I'm like everyone else.
Hope you all have a good night! Tomorrow is Friday.:) norskigirl

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