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Hardware pain from an extensive spinal fusion

Started by Sage0412 on 03/25/2010 3:40pm

I had multi level scoliosis similar to an s curve with a hump in the t spine. I had a spinal fusion in 2007 from T-1 to S-1. This was a lengthy surgery, about 13 hours with two spine surgeons. The pain was extreme, however, based on what I had done, I thought it was to be expected. I started physical therapy 6 months later and could only progress to minimal levels. The pain was still extreme, virtually everywhere I had hardware, across the shoulders and hips and throughout my entire spine. My mobility is extremely limited, only being able to stand or walk for 10 minutes at a time. I was unable to straighten up and the doctors did a pedicle subtraction osteotomy 10 months after the first surgery which was almost the same length incision, shoulders to tailbone as they had to realign the new hardware with the old. This did straighten me up initially but the extreme pain and lack of mobility continues. I did start physical therapy again 6 months later with the same result. We agreed to quit PTand do the following at home: resistance bands, hand weights and a few exercises on the Wii Fit to get me on my feet.

I have been on extreme pain medication and have gone as high as I am willing to go. Now we are working on reducing/stopping my medication as it is no longer effective. It is scary as my pain is always 8 to 10+++ and if it is helping at all I cant imagine what my pain would be like without medication. The only relief i get is in a recliner with my back, shoulders and spine fully supported and my feet up. That is when my pain is an 8. ;(

My doctor referred me to spine rehab doctor as they have given me a very strong indication that there is nothing more they can or will do for me. I have had multiple MRI's,blood tests, bone density scan, bone scan, three spinal injections, CT and most recently an xray to determine if there was any space in the fusion to insert the catheter for a permanant pain pump and they found that a rod was broken. They referred me back to my surgeon and it was the strangest appointment I have ever had.!! He acted like he hadn't read a single report that the rehab doctor sent him. I was taking out reports for him to read. I asked why my rod had broken, no trips, falls accidents or trauma of any sort and he said he would have to see the film. Wait a minute, what did I come here for and why wasn't I told I needed to bring them?!! He refused to do another xray. I then had to go pick up all of the films for every test I had done and drop them off at his office. This is very difficult as it's a two hour round trip commute for me not to mention the walking and sitting in a straight chair which is very painful. He recommended a pain mgmt doctor but I am so skeptical right now. I have taken many of the anti depressants they recommend for pain and have also done accupuncture with no benefit. I also spent $9,000 out of pocket last year on medical excluding health insurance premiums. Living on long term disability, I cant afford to spend another year doctoring!!

I was told everything from having an L-3 fracture, 3 fractured back ribs, a possible syrinx, spondylosis, degenerative bone disease, etc, etc. but no one has followed up on any of this.

I have lost virtually everything from a 30 year career which I loved and did very well at, the ability to walk for more than a few minutes, cooking, cleaning not to mention the things I love such as travel, gardening, being a grandma. I'm suprised I still have a husband!!

The quality of my life is non-existent. I never expected to have surgery and have my entire life blown up! I am incredibly bored stuck at home, extremely frustrated with doctoring and getting no answers and feel very much alone.

I am going to a major medical center for a group review and will be bringing all pre and post op records. I need someone to be a hero for me, put all of this together and help me! I have way too many years to live it like this. I just cant do it.

Thanks for reading! I just needed to vent!!

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Dear Sage,
I feel so deep 4 u and am w/u on the doc thing. I have the same issues as u, but not as extensive. I don't understand why they are taking u off pain or as u said gradually taking u off. That is ridiculus. I can't believe they are even considering it due to what u have had done. This is bad. I am afraid now 4 myself. I have DDD of Cervical, lumbar and hip/joint, spondylosis and Fibro.,fractured rib from which I don't know where came from, CM(Chiari Malformation) and venous angioma, in which they are saying now can turn into a caverness malformation. OMG...we both have got it good, but it looks to me like u have had so much work done on u that u even have to consider the scar tissue later. I hate it, but u know life sometimes just isn't fair. but we just have to hold onto the good things in life even though it doesn't seem to be at the time.

I have two boys that are young and need me. Yet here I am in the bed and at times feel my life slipping away, but I turn to God and He gets me through. I am not preaching to u, but it is the truth. He makes me feel like I have meaning...purpose. I see it in my children. Well, one of them anyway. The other son I don't see anymore. It is a long story and believe me u don't want to go there. I am fine. I have give it to The Lord and everything is okay in my life. I am happier now than I have ever been in my entire life. It doesn't make sense does it, but it is so true. I accepted Him in my life and it has only got better and better. We just have to rely on Him and leave it all ....all the worries and cares behind us. He will send the Great Comforter to u and u will feel so much better. It just takes a little faith to move that mountain. I have that faith and thank GOD every single day for my blessings in life. It is like...how can I put it? U know when u were a child and ur daddy or mom would discipine u? It is like that in a way. He just wants and needs ur attention and will get it if ur His.

I will pray 4 u and I hope I didn't offend. I just care and want everyone to feel the comfort and love I get from my Lord. He is who we should focus on and everything else will fall into place. Just do that 4 me and trust me, u will feel a world of difference. READ His Word and it will fill u everyday and make u better. Take care and always....GOD BLESS... Karen

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Thanks for your post Karen! Believe me, I pray daily to get through the day and ask for improvement, however, I don't think anyone's listening.

I also have a 3 year old grandaughter with fairly severe autism and my son( her dad) has degenerative bone disease. He had a hip replaced at 27 and needs his other replaced but has no insurance. I pray for them every day.

Something I always remember: Be kinder than normal to everyone you meet. You have no idea what challenges they're dealing with.

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Dear Mrs.Sage, I salute your spirits. Have you consulted Dr. Lawrence Lenke? from what I gather on the net as well as on the pubmed, he is a very prominent authority in complex spine deformities. I am a bit scared reading your story , because in a couple of weeks I would be subjecting my 14 year old daughter for second surgery. T4-t12 fused 5 years back, and now we are dealing with crankshafting.The portion below the fused spine has curved up again. She is in good frame of mind at present, may be because she does not know about the severity of this condition. anyway, I pray for your comfort.

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Aww hun I'm so sorry things are so hard for u and u havnt gotten the support from the medical field like u expected and deserved!!! *hugs* having had the surgery u had...wow my hat goes off to u!!!!! It is the most major kind of back surgery there is and so extremely opainful!!! I hope u can find resolution with this new medical group, plz keep me posted on how it goes. Take care:)

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I feel your pain. I had surgery in Oct and ended up with a spinal cord injury. I am constantly in pain and the ortho is still trying to taper me off meds period. I have had pain since I woke up five days after I went in for surgery. I lost all feeling from below my ribcage down my right leg and the left foot. I sit and my legs go numb, I stand and I have pain and the muscles spasm and I look like a weeble wobble (except I have been known to fall over) , I walk and I am ready to turn around by the time I get to the end of the street. I don't work anymore. My previous job was as an OB RN. I loved my job. My fusion was from T1-into the pelvis. I can point to exactly where my screws in my pelvis are. It gets old always feeling pain and/or spasms.

I too have lost quality of life. I feel like a burden on my husband and son some days. It really sucks! I too am surprised that I still have a husband. He has picked up so much slack over the past few months. There are days though that if it wasn't for him I wouldn't get out of bed.

I was in a rehab center for 6 weeks after surgery and then did another 6 weeks of outpatient therapy. I too am using the resistance bands, upper arm weights, and the wii fit. The wii fit is a blessing. I think I feel more of a workout with that than I ever did in outpatient therapy. All she did was walk me around the building in circles. I couldn't afford to spend the money on that anymore so I quit going.

As far as Dr. Lenke I know for a fact that his earliest surgical appointments for adults are scheduling into 2011. If you are looking for a second opinion Dr. Bridwell might be a better fit. He works in the same practice as Dr. Lenke and has more time for patients right now. Dr. Lenke sits on a couple of boards and teaches and that seems to be taking up much of his time.

Anyway, I didn't mean to rattle on like that. I just wanted to let you know that you are not alone.

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Sage- I could have written your post! Please- no matter what else is going on now- see a reputable pain management clinic for an evaluation for the possibility of Opiod Induced Hyperalgesia! If you've been on narcotics for pain management for a length of time, the possibility exists that it could actually severely exacerbate your pain. If they don't know what you're talking about, find another clinic. Please Google this for additional insight- God Bless and good luck!!

Patty

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