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Back Problems Message Board

Back Problems Board Index

I need help my fellow back surgery and pain survivors! I am new to this board and new to spinal surgery! Although I have RA and had 19 surgeries prior to my fusion surgery, I am new with anything pertaining to the back and spinal surgery!.It is easy for those on the outside to think that just because someone has undergone many surgeries and procedures and deals with chronic pain to due a terrible disease is all knowing and all prepared for anything entering her path. I have to tell you that this is very untrue. I do aknowledge that I have been through so much in the last 8 years and have learned how to cope and live one day at a time etc.

Needless to say when dealing with an autoimmune disease and the constant damage it has ravished on my body you don't think it can ever get worse. Well lo and behold it recently did when they found out the damage had spread to my spine. I spent a couple years researching my diagnosis, seeing different doctors and surgeons with different opinions and specialities. As the pain got worse and damage spread from one level to two levels to three levels I knew I could not wait any more and something had to be done! My spine was damaging in front of my eyes! Much as I have seen other parts of my body, joints, organs, skin, etc.deteriorate, it feels like pac man eating away at me! I am not in here to address RA, just wanted you to know my background.

I recently have undergone a posterior TLIF, triple level fusion on L3-S1 with pedacle screws, rods and bone filled cages. My surgery was performed on June 11,2008. I spent 6 days in the hospital and was in the most miserable pain I have ever been in in my life! I was so happy to come home because I have a hospital bed and just thought that being in my own home in my own bed with less distractions would be heaven. Much to my surprise I was almost as miserable, if not more so! The first threeweeks were literally hell!

Some of the things that I was not prepared to deal with were all of the pain and problems not associated with my spine or back. I would be so grateful to know if anyone else dealt with any of these other problems. I woke up with bloody, scabby cheeks from being face down, a horribly bad rash around my entire mouth and chin from where they "glued" the oxygen mask on me since I was face down, horrible red, burning, bumpy rashes under both breasts as a result from laying on the contraption they put me on to do surgery. several bruises and bar marks that were pressure point leasions due to the same contraption, rashes on the undersides of both of my upper arms, my rib cage hurt so badly I could not breath and assume that also was from being tummy down during surgery. It is a month later and my rashes are all still visible and are healing slowly, I may be scarred on my face,immense nerve pain and weakness in my left leg not there before surgery, just unthinkable awful things you do not expect to deal with after major spinal surgery as if the pain and recovery from triple fusion is not enough in itself!

I feel so alone and cry everyday! I am not literally alone as I have a dear husband who is caring for me and friends and family on the outside that love me and pray for me and try to uplift me with cards and calls. It has only been very recent that I have been able to talk on the phone etc. All of this love does comfort me, but I do not know anyone who has been through what I have been through and no matter how much someone loves you and cares about you, there is no one I can ask questions of, compare notes with, vent to, see if my progress is normal or abnormal and no one I can get advice from.

For instance how much pain is normal at 4 weeks post op?, I am in bed most of the time except for using the bathroom, showering occasionally and making it down the hall from my bedroom to eat with my family at the table in a wheelchair once a week-is this normal?, Is it normal to cry?, Is it normal to feel sad and frustrated that I am dealing with other problems from the surgery that are not because of my spine?, I also have ended up with very bad nerve pain and weakness in my left leg that was non existant before surgery, I only had back pain, no leg or nerve pain, any one else get this post op? These are just a few of my hardships.

I really am not a complainer! Maybe this is why I am so sad, am I keeping things in because I have no one to talk to and no one who understands? All I know is that after reading many, many posts I have never seen a group of more loving, informative, tender people that relate to one another and help one another! I yearn to be part of a community like this and I hope and pray that whatever I am given, that I may someday give back when I am a bit further up the road and another hurting newbie like me comes along and I will be able to say, its OK,I understand, I have been there, I have made it and you will too! Until then I seek and wait for a caring person to reach out to me and tell me some of those things.

Whoever you are, whatever youve been through, if you see a bit of yourself in me and my story or can add some insight, encouragement, information, help, insight, what I can do or shouldn't do-anything, please, please help me! I am reaching the end of my rope dear ones! I am hanging and will never give up though! I am a survivor and a trooper, just need some help to get back on track! Thank you for listening and for caring!
Hi, Kimberly! I am sorry to hear of all you are going thru right now. Have you called your Dr. about the nerve and leg problems? Sometimes a dose of Medrol pk. helps--it is a steroid. I had to have that twice after my fusion last year. The nerves and muscles get moved around during the surgery, and they are mad as hell! It does take time for them to recover. What you are going thru is not unusual. Walking is the best thing you can do right now. Remember no bending, lifting. twisting. No heavy lifting. You are still fresh out of the surgery, and it takes time to recover from this type of surgery.

This board is wonderful for support. Why pay a therapist when you get all kinds of love and support here on line!!!! Everyone understands what you are going thru. You can actually feel the cyber hugs that are sent out, too.

What meds are you on---pain meds, muscle relaxers? Did the Dr. prescribe anything for the nerve pain? I was on Lyrica, but took myself off as I gained 30 pounds(so far, I have lost 15 of it).

Are you in PT yet? I don't remember how long afterwards they have you go for it. That can provide relief, too.

Everytime you accomplish something keep that positive thought in your mind. Each day will get better, every task will get easier. It is a long road to travel, and there is light at the end of the tunnel.

No matter how low you get, remember, you are NOT ALONE!!!!

I will lift you up in prayers, and send you tons of cyber hugs!!!!!!!!

Hello Kimba ~

I am very sorry for the reason you are joining our little group here in cyberspace, but WELCOME.

My head is still spinning from reading your initial post. You have been through much more than I can even imagine, what with your medical history, high number of surgeries, etc. But to answer your question, I've been reading on this board for about 3-4 years and I do not recall one post about someone developing all those rashes you mentioned, and all the other problems that you encountered from the surgery itself.

The only thing that sounded familiar to me is the nerve pain in your leg that was not there prior to surgery. That is very common. Also I was told by my surgeon's assistant that during the surgery, they have to place the patient in some rather awkward positions and sometimes nerves will be stretched or bent in such a way that it can take a long time for them to recover.

Also I don't quite understand the extent of your pain. It sounds like you were sent home with a fairly good arsenal of meds. Perhaps due to your other conditions, the pain pills don't work as well for you? Well, one thing I've learned from my experiences with back pain and fusion is that everyone is one heals the same; no one reacts the same; we each experience pain differently, etc. While this board is great in so many ways, there is no way for one of us to feel exactly the same way as another person.

You don't say if you are getting pain relief now from those medications.
How are you feeling now?

Do you have a satin sheet on your bed? This makes it so much easier to change positions. That was the single-most useful tip I received from the board! You should wear your brace whenever you are not in bed, lying down. You know about the BLT's already, and they are very important. Do you have a "grabber?" That is another very important, useful tool that will allow you to function without bending. Regarding lifting, no more than a gallon of milk for you can forget about those 50 pound barbells for awhile...:D

I had a one level PLIF in Jan., not as much surgery as you, obviously...but I am doing quite well. I followed the veterans advice -- took all the meds that were prescribed, exactly as prescribed, rested a ton, walked when I wasn't resting and pretty much stayed in bed when I wasn't walking. I was the Princess and I let others wait on me! ;) At about 6 weeks, I started feeling a bit more normal. I think I started driving around 6 weeks. During my whole recovery I have not pushed things. I am in no hurry to accomplish things....I just listen to my body. If it doesn't hurt, it's OK for me to be doing it.

Now that you have found a group that understands what you are going through, please stop by often...either for questions, or to blow off some steam...or for some of those hugs.

Welcome and I hope you start to feel a bit better very soon.

xx M:wave:M

Oh, PT varies very much from doc to doc. Many start about 3 months, some not until 6 months and a few believe in starting sooner. Some think it often causes more problems and do not recommend it until after 6 it will be up to your particular surgeon.
My fusion surgery was 12/06, and I remember the awful nerve pain when I woke up. I made them take off the Teds Stockings and never let them put them back on. I did not have any rashes or marks that time, however, the time before that, I awoke to 2 black eyes!

I have permanent nerve damage in my left leg and foot. I have weakness in my left leg and hip. I did not fuse, so they are doing a revision surgery July 24th. All my hardware will be replaced as well as new bone grafting. The nerve damage cannot be fixed. I really have no life anymore. All of the things I use to love to do, I can't. I have found other hobbies now, such as crocheting, plastic canvas, and reading, and ceramics. And babysitting my 7 month old Grand daughter once a week. I will probably never work again. I do my best to keep a positive attitude about everything, but there is plenty of negativity as well. I try to laugh as much as possible, got to keep the sense of humor!!!!

Do not lift anything that weighs more than 10 pounds. Bend with the knees, not at the waist---ever. It is not very common to hear of broken screws, but it does happen. Do not twist. Wear the brace as you are now.

Never feel that you are a bother!!!! You can write to me whenever you want, however, after the 23rd, I will be off for awhile due to the surgery. I don't have a lap-top, so I will have lots of catching up to do. I will answer your questions to the best of my ability, and I know that others on this board will also offer their support.

Hi Kimberly -- you are not alone. The people on these Boards are amazing. I am further along then you are post-op, but I can totally relate to you. I will be 15 weeks post-op tomorrow from a 2-level fusion. My first several weeks were really bad and I too felt like what in the world have I gotten myself in to. I had tremendous pain, marks on my legs from I think the surgical stockings they put on you to prevent blood clots and I also had what looked like bedsores on my bottom. I didn't realize that until I got home and my home nurse asked what is this!

I was sent home with a very large amount of medications, one of which had me seeing things and once my family realized that, they immediately called the dr. and he switched medications.

Nine days post-op I had my staples removed and thought I would die - two of them had started to grow into my skin! And no they don't give you any numbing agents to remove them.

Then I started having pain and numbness where I had never had before surgery. I came to these Boards and posted several questions and come to find out, that others too had experienced the things I was going thru at the time -- especially the nerve pain. I was put on Lyrica which caused a 10lb weight gain in less than two weeks and extreme tiredness and dizziness so my dr. took me off of that and put me on Neurontin. It has taken awhile, but my nerve pain is so much better -- it is not completely gone, but it is better. Before surgery I had nerve issues in my right leg, but after surgery it was in both legs. The left leg is so much better, but I'm still dealing with issues with the right leg.

At 11 weeks I went back to the dr. with x-rays and was told that I had very little fusion at that point. My dr. said that it was not uncommon for the fusion to take longer, but I immediately came back to the Boards again and found that others had too experienced this as well.

I can not begin to tell you how much everyone has helped me to know that I was not alone in this journey and I hope that you begin to feel the same way. I pray that your recovery gets better really soon and as the others have said, please visit and post often.

My prayers are with you.
I'm new to this board and as I've sat here reading everyones posts I just can't seem to stop crying. I had my 5th back surgery on June 18th. I'm 52 years old and my back problems started in 1992 when I had a massive herniation at L5, S1. I have been so alone for so long. My family is wonderful and I love them dearly but they don't understand - or maybe its that they can't understand. Maybe you have to experince it to understand. My first surgey was a laminectomy at L5, S1. The level above (L4, L5) was bulging but the surgeon opted to do nothing at the time. A year later that disc blew and I went in for my second surgery. Three years later I was in constant pain, was incontinent and needed a walker or cane to get around. My doctor told me I needed to learn to live with my pain. Fortunately I was able to find a new doc and after a lot of really terrible tests went in for a cage fusion. Seems I had no disc left at either site of my previous surgeries. I had my fusion and while it did not restore me to 100%, I was functioning much better. Five years ago I went in for my 4th surgery and the doctor cleaned up both level. There was extensive bone growth and some scar tissuewhich he removed. I could have been a poster child for successful back surgeries at that point. Two weeks post op, I was back at work and literally pain free. Four years later I began experiencing lower back pain that I attributed to arthritis. It grew worse and eventually my left leg began to hurt. I went back to my surgeon and sure enough, had to undergo yet another surgery. I've been pretty down myself because I didn't get the same phenomenal results as my 4th surgery. Still experiencing a lot of lower back pain as well as pain radiating down my left leg. Additionally my left leg is extremely weak. I would rather throw up that go up stairs.
I feel so alone. My husband comes home from work and wants to know whats for dinner. If I even mention that my back or leg hurt he tells me I don't know what pain is - that his back hurt because HE WORKS ALL DAY. God I wish I could work! I'm so lonely. I'm so tired of hurting. I just want to be normal.
It was really good to hear from you. Thank you for your response. It's really nice to know I'm not alone. I truly believe that family can't understand because they have never experienced chronic pain. I do feel blessed that I went four years pain free. When it began hurting again last fall, I assumed it was arthritis but by January I had pain radiating down my left leg and knew it was more. Today has been kind of a blue day for me. This surgery was much tougher for some reason. I did have some complications that no one really expected. I was supposed to be there at 6:40 in the morning and was expected to go home that afternoon. My incision was only supposed to be about an inch. I was relieved to find out from the surgeon on the morning of surgery, was planning on exploring the other two levels (this surgery was supposed to be on L,5 - S1). The did find extensive scar tissue and spurring on the next two levels so did clean up those areas too. Additionaly, my dura ripped and I lost a significant amout of spinal fluid during surgery. They actually stitched that up and put some kind of "biologic" on it. I was in the hospital for a total of 5 days. I lost 10 pounds in the first two weeks after surgery because I was constantly nauseated and couldn't bring myself to eat. Sleeping also became nearly impossible. The doctor sent me home with ocycontin for pain and I really hated it. When I did sleep it gave me terrible nightmares and made me feel really out of it. He switched me to a stronger dose of vicodin (APAP 10 - 325) which has been working fairly well. Sleeping is getting easier. Another thing that happened this surgery that was really weird was I when I came out of surgery my forehead was swollen and bright red. It took a couple weeks for that to go away. It was never really painful but now seems to be sensitive to too much sun.
I feel like I've been teetering on the edge of depression. I experienced severe depression between my second and fourth surgery and was hospitalized three time because of it. I REALLY don't want to go down that road again. Not to mention that I don't think my family could go through it again. At one time I was on 5 different types of anti depresants.

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