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New here, and scared. degen & hern disc, stenosis, anemic, weight loss, scoliosis, sciatic,name it have it, it seems.

Started by peanoweno on 10/03/2011 3:32am

In dec 2009 i had been diagnosed with severe scoliosis. I was 48 at the time. I was stunned. Never imagined all the years(at least 10) of going to so many dr's, so many tests, had at least 5 colonoscopys because of complaints of lower abdominal pain, problems with my pluming, and always being told they cant find anything except that it appears i'm constipated. I got so sick of hearing that. I thought it had to be more than that but gave up. Just figured what my body felt like was evidently what my body is going to do so i put up with it as much as i could and took prescription pain killers. I of course was labeled an addict which really p****ed me off. I had something difficult to live with daily and my records were showing that kind of crap. Well in 2008 my hip(r) started protruding a little and i went back and forth with that for several months. Fatique was horrible. Always napped like I never slept. Eventually had to quit working because my body was getting crooked and my breathing got hard to do. Felt like my chest was getting crushed in on one side and when i walked I would push down on my hip to open that area up to get relief. Body shifted more. Finally the pain got pretty bad, burning, so I thought maybe its some kind of infection but came back neg. I was at wits end. Finally told family dr and he was the first one in all those years to ask me to stand up so he could look at my back. He right away said it looked like scoliosis.Got xrays to confirm. Was sent to a spine dr. He said it was bad and I needed surgery. I was in shock. They couldn't believe no one never told me I had this condition. I collected records and found in the early 2000's that it was on my records. Just no one bothered to tell me. But now its to late and I had no choice but surgery.Had to go to another spine dr cuz of insurance reasons. He was extremly arrogant, rude, wouldn't look at my mri I brought in. Said it was wasting his time and tossed it back at me and my family. He certainly did not have a bedside manner. Came highly recommended though so thought i can put up with his jerk attitude as long as he's good and can fix me. Well fast forward to day of surgery. he came into pre-op and told me opposite of what was said in office visit. Said I was very severe , surgery would take awhile blah, blah, blah. Scared the hell out of me. I was terrifyed, and bawling. My family was standing there when he was telling me horrible things and they got very upset with him for telling me that stuff just before being put under. I awoke to the most excruciating pain I ever felt in my life. I thought natural child birth was bad. No their is worse pain out there people. Much worse. They started asking me questions in icu like when did i have chicken pox, measles, and all i could think of is the pain. I couldn't open my eyes, couldn't talk much, groaned like hell. They didn't start a pain pump yet. They wanted to know some things first. I heard my husband getting in an argument with the icu nurse to stop with the questions and get the pain pump going cuz I was suffering so bad. Finally they did and I was out for 3 days. Awoke few times. Couldn't eat. finally the 4th day i started coming to and could open my eyes and talk to family. The only physical therapy i got was to do a few leg raises in bed and made to sit in a chair(wooden) for an hour which was so painful. I got ill, migraines so i just would go back to my bed. When the physical therapist found out what the nurses were making me sit in she got upset and said it was wrong and showed me the chair I was to use which was cushioned. They didn't listen and the next day told me I had to sit in the wooden chair for 4hrs straight. I had horrible pain and got ill again and another migraine so i was angry and told my husband they can stick it I'm laying down cuz of the migraine. I suffered all night every night in the hospital and would ring the nurses for help. To call the dr to see if my medicine could be changed cuz i wasn't getting relief. They all said they weren't risking losing their jobs calling him. It makes him angry if you call him so they just let me lay. Finally on one of the dr's 2 minute visits he brought in xrays, held it up to a window, had me look at the beautiful job he did and how straight i was and that should make me feel better with my pain. I was so angry with this guy, burning mad and no way in hell i was letting him out of the room without changing my pain meds. So he did.I was fused from T-12 to L-5. On the fifth day i asked my husband to take me on a walk so he did. We got yelled at for it. Then 5 minutes later they sent a physical therapy nurse down to walk me. Right after i returned to my room, the dr came in said he was discharging me, he wasn't going to give me any aftercare, to see my family dr and gave me two weeks worth of pain meds and left. I felt like crap. so weak. just didn't feel well enough yet to be discharged. We went to our hometown hospital because he didnt give me any instructions for homecare either. I was terrifyed. The er dr's asked why did he do that and we have no idea. At home the pain was so bad. screaming pain in my back and legs. I slept one hour a night cuz of pain. i became violent from lack of sleep and pain so we tryed for days calling the surgeon to please see me. I was in excruciating pain. He said i shouldnt be hurting and refused again. We kept bugging them till they finally agreed to check me out. Two weeks being at home finally got a new xray and saw in his office i wasnt straight still. something was wrong. I had a curve again. I was in tears. he said i shouldnt be hurting, he wasn't going to treat me, wasn't going to give me any medicine and if i wasn't happy with it he could put me back the way I was before. We left. He gave me a name of a pain dr though(how nice). Days later saw her. sat and waited 3 hours to see her. She started badgering me about past drs and the meds i took. I finally realized she was accusing me of drug shopping. I couldnt believe it. I told her to look at my back and she should be feeling what i was feeling. She didnt like that and we litteraly got in an argument, fighting. My daughter stopped us. I was so angry she was accusing me when i was post surgery(3rd week) but still couldnt walk, and pain never stopped from surgery. She said she wasn't going to prison giving pain killers out. She finally examined me and decided to give me medicine and said I should be all better in two months. 3rd week of seeing her i quit. I couldnt take her anymore. Since then i have not been pain free yet. In aug of 2010 i lost use of left leg and had to use a cane. Hip shifted. Pain worsened in leg. Also lost feeling throughout my body. Went to 3 er's here and they all said i was fine. Fed up we went to chicago. Rush orthopedics and the dr i see looked at the ct they took and said I have a big blown disc. L-5 blew. His nurse is wondering if it happened after surgery cuz of all the problems. Anyways that was nov 2010. Surgery to correct some things scheduled feb 2nd. was in pre-op but anesthesiologist said i really shouldnt be getting surgery that day. My hemoglobin was a 9.2, iron was very low. I was anemic(badly). So they (i) post poned to make sure of underlying problems. Had colonoscopy, blood work and couldnt find anything. But in may i was worsening and now my weight has dropped from 119 to 112 and still low blood and iron. Decided because I wasn't able to lay down for 9 months to sleep mhe put me in water p.t. and iron by i.v. It worked. I could lay down for the first time and was ordered to practice laying down. After 6 doses of iron i'v's my blood went to an 11 and my iron was up at an optimal enough way so surgery was sheduled june 29th. Was in pre-op and had been experiencing chest pains that radiate down my left arm. I told them cuz in surgery u shouldnt hide things for safty reasons. I had no idea it would get post poned agian. The surgeons said it had been to long since having heart tests, and since my brother passed at 50 from a heart attack they were in no way going to touch me. Said surgerys strenuous on the heart and weren't chancing it. So i got checked. Came back i have high blood pressure and an arrythmia. But my irons dropped again and blood so now have to get that back up and also they want me to see a therapist because they can tell my deprssion and fear isn't at a good place. They know I'm terrifyed of not being healthy enought o go threw surgery cuz i keep worsening. Blown disk has turned to kyphosis, my spine has bent back over. I'm a mess. I weigh 102 now. They have done tests and tell me i dont have cancer. but i keep worsening, getting weaker, bones bent, sciatics terrible. My nerves are a wreck. their talking of just working on the lower lumbar remove l-5, brace my spine down to my pelvis, and reinforce areas. Might have to do it in two surgerys cuz he doesnt want to stress my body too much. They tell me they have alot of blood put back for me. The anesthesiologist always feels he has to tell me how serious this surgery is. I tell him everytime i know. to quit saying those things to me. He's only scaring me. My husband got into a fight with him over that. So I turned 50 in august. I'm sad cuz i've been housebound for 3years except for drs visits. Have to be in a wheelchair when out. I look so much worse than i did for the first surgery. it scares me. It makes me cry cuz i look likea skeleton. I'm scared my hearts going to go out during surgery. surgerys so hard on the body. I found a dr's sight on spines and read an article that theirs a risk of death for 30 days after back surgery and spinal fusions. I didnt need to see that. I have a great surgeon this time but i'm scared about my health. I look terrible. I'm still on morphine evry morning, percocet for breakthrew pain, soma for muscles and sciatic, neurontin for nerve pain, diazepam and clonopin to help me sleep at night. With all that medicine you'd think I could sleep but i can't. My family dr is in charge of my mes and he's always yelling at me if i run out early. sometimes when the sciatic kicks in its such a bad leg pain. Its the main nerve getting pressed on and it hurts like hell. Goes on for six weeks or more. #rd time i've been threw it since first surgery. each leg has done it. But i'm sick of this guy screaming at me like i just sit around popping pills and doing nothing els. I struggle with chores but force myself to do it. Its bad to just rest. My chores take me like six hours or more cuz I'm bent half over and cant stand up straight at all.I lost feeling in both feet. My left one acts dead when they test it. Its nerve damage. The first surgeon i feel is responsible for my body getting like this. He gave me no at home instructions, no body brace(lost balance and fell after 2nd week home). Luckily i was able to break most of it and i hit my toilet tank but bumped into it more than hit because i grabbed onto the sink and shower curtain. Thank god that shower curtain held. No physical therapy. NOTHING. its been hell since surgery. every dr and nurse that hears my story all get the same look and reaction. "why"? I dont know. One nurse asked me if he did something wrong? I don't know. Yeah, no aftercare. I talked to my neurologist after surgery to see if he would treat me. he said he couldnt because it was so soon and the dr that did the surgery was suppose to be giving me aftercare, that he wasn't doing his job and i need to report him. I'm working on it. but my family leaves me alone. I have to fight with my husband and daughter for help. I know their tired of it but they should try living in my shoes. 75 to 80% of my time is in bed. I've missed 3 years of living life. Walking my dogs, just even walking. I love to dance and cant. The pain never goes away. never. the meds help to cope but never take it away. After 3years it messes with your head. you feel so alone. depressed and want to give up and die at times. But i deserve to have some life again. I didnt ask for this. If someone would of told me to begin with along time ago i could of wore a brace and theirs a good chance none of this would of happened. My lifes empty. Hell. No one visits,calls,or even my husband or daughter help anymore. They go to the store. but they dont cook. i cant stand long enough to cook. they go out, work, school,friends,other stuff while i see the same four walls watching each season pass me by. Now because its been so long i worry i wont even get threw surgery. I wonder if they can get me to stand. My recovery i'm told will be long cuz of how long my spine has been in this position. It hardens back after awhile of a fusion. its like i'm stuck in this position. its so uncomfortable. I'm nothing but bones. I'm scared. I dont want to have this be whats left of my life. I want my life back.I want to be able to wear jeans again, look nice. I always worked out, was active, had interests. My life has done a complete 360 degree turn and i hate it. I hate being stared at. I hate being ugly. But mostly i hate that i dont know if i am healthy enough now to even make it. Too much has happened. well i know this was super long and don't know if it will get posted cuz of that. But its my story. I even left out alot of inbetween things that have happened to. To whoever was patient enough to read this, god bless.

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Not sure if you will get this, I did read your post and my hart goes out to you. You have a lot of similarities with my husband. If interested email me at wytootsieroll@yahoo.com