WARNING: if considering full spinal fusion, it may disable and end your life as mine.

[TwinmomTN]

I had full spinal fusion, T-3 to sacrum, after having 80 and 60 degree curves, with the renowned Dr. Lenke. Just because you have one of the best spinal surgeons does NOT mean that you will end up in LESS pain!!! I had this done 3 years ago and have regretted every second of every day since. I have tried EVERYTHINGA including Pain Management to no avail. I have severe chronic debilatitng pain constantly. It has ruined not only my life but the life of my husband and 2 children who are left without a mother. My life is over! Anyway,just felt obligated to inform any of you considering this surgery. Not all surgeries turn out rosey like most here post. AND IF I HEAR ONE MORE PERSON SAY THAT GOD DOESNT GIVE YOU MORE THAN YOU CAN HANDLE I WILL SCREAM, BULLSHIT!!! Why do you think people commit suicide? They have had MORE THAN THEY CAN HANDLE! Period!

[JenniferG]

OMG, I'm so sorry to read this, Pam.

Obviously, I have no answers or suggestions because I know you've tried everything. But you're absolutely right to post this because we need to take this decision very, very carefully. Not that we get any guarantees either way.

I can only hope that somehow, your pain eases in time, or you come across something you haven't yet heard of, that will take away your pain. It truly is a cruel life for some.

[LindaRacine]

Hi Pam...

I'm really sorry to hear that your pain hasn't improved. Your experience is important. It's very rare, but that doesn't matter at all if you're one of the ~ .5% of people who end up like you.

Is your pain widespread throughout your body, or is it just in your back?

--Linda

[susancook]

Pam, I wish that I had something helpful to suggest. I hope that maybe in the future that there is a doctor or treatment that would offer some relief. I added to one of my entries on one of the threads, "I am your biggest nightmare". I thought that at 1 year and 5 months out of surgery, that I was fine. One screw in my spinal cord later, I am in a wheelchair. I also have an infection of my hardware.

Your story has touched me and I wish you the best. I agree that people make statements that can be hurtful. I hate the patronizing comments. They are motivating me to try to use my crutches more.

Susan

[green m&m]

Pam,
I'm really sorry to hear about the difficulties you are having.

I'm sure you've had MRIs at this point of your spine, have you had ones of your pelvIs? Also, we're your previous MRIs with contrast? There are some things that only show up if contrast is used.

I gathered from your post that the pain is sciatic in nature - if you haven't I'd ask for MRI of pelvis and affected leg, with contrast.

[jackieg412]

I know you had a great surgeon for your surgery but have you gone to any other doctor? I wouldn't normally recommend doctor shopping but I have found that sometimes the surgeon knows that you should be ok but refuses to hear that you are not.
In my case no matter how many times I came in to the office with difficulties in my thoracic by my right shoulder blade, I was sent off with PT or its is a screw . This winter it progressed to the right shoulder blade trapped down and sideways causing a severe drop down and forward of the shoulder. The shoulder Dr sent me to the university of Chicago orthopaedic department. They are trying to come up with a fix for the problem. My own spine doctors actually refused to look at the scans to see if the shoulder blade was trapped on a rib It wasn't until I saw a different doctor did someone take it serious. I actually find out on Wednesday what can be done to fix it. All thing discussed so far are going to be difficult. I see both a scoliosis specialist and shopper specialist then. I was told that the case was being discussed behind my back. These doctors have the ability to confer world wide. They are also willing to look and not be defensive as my original surgeon is acting.
Don't give up . The answer may be out there.

[cathydrew]

Pam I am so sorry that you ended up with this result after your surgery. Unfortunately some of us don't really have any choice when it comes to having spinal fusion or slowly dying which were basically my options based on the speed of my progression. I will pray for you for relief and for improve quality-of-life.

[TwinmomTN]

I didn't have a choice either but I still regret it because I am suffering and want to end it! I am tired of trying to find answers as I have been searching for 3 years constantly. It has left me with excruciating disabling pain, but even my father, a retired doctor now tells me I am not in pain and calls me a " dope addict"! Everyone around me is tired of hearing that I am in pain, but no one more than ME!

To address the questions about MRIs, Ive had a CT Mylegram. That was ordered a few weeks after this all started. I don't know if a MRIS with contrast would show anything more than the myleogram did.

I totally understand why people commit suicide. They have been dealt more than they can handle, as have I.

[titaniumed]

Pam, you sure have had a rough go at this and I’m so sorry.....you did your best and had one of the greats, but we scolis are complicated. I like to think that there is some sort of answer, and there probably is, but this hasn’t been discovered yet......Holding your head up sometimes is hard, and it takes extra effort especially when we are dished an extra helping of tests in our lives.

With your medications, have you tried any of the NSAID’s? Try replacing with a prescription NSAID, like Diclofenac and reduce or wean off the opoids? I don’t know if anyone had tried this here, but it seems like it could work.....I thought the Diclofenac was excellent in dealing with my cervical herniation’s which were pushing on my spinal cord. I would ask your pain doctor about this.....When I had my shoulder rebuild and gall removal, I expressed the fact that I wasn’t keen on opoid usage for pain and was approved on NSAID’s for pain control. I’m not a doctor, just reporting prior experience. This happened with an orthopedic and a vascular surgeon.

I am also friends with Dr Brett Babat’s father, he is a Nashville scoliosis surgeon....if you wish, I could make a call if you wish.....just PM me.

I also have a question for Linda, why don’t they use flouroscopy to check for non-unions? It seems like an easy way to do this? You could bend in different directions, and see what’s happening live.

Ed

[LindaRacine]

Ed....

There are radiographic ways to look for non-unions. Unfortunately, they're all imperfect and I think they all involve large amounts of radiation.

--Linda

[3sisters]

It doesn't seem like large amounts of radiation would be the biggest risk for anyone in life harrowing pain, especially if it could lead to help. I am so sorry to hear of your pain, and hope you can find genuine pain relief and answers.

[mabeckoff]

Pam,

I am so sorry to hear of your pain. I know how you feel. There are days that I cannot get out of bed. I had to have the surgery as I was falling over. I pray that you will find some relief. Where is your pain?

Melissa

[green m&m]

MRI with contrast of your leg and pelvis would show more peripheral source of your pain. You could have something compressing your nerves in your pelvis or down your leg -- and hopefully not but something that can be cause of pain -- nerve tumor. Those things would show up better with contrast. It's unlikely situation but if I was in the situation you are in I'd ask about the possibility of a nerve tumor causing all the pain.

[Lorz]

Pam,
I have not posted for a long time because I have felt as you do-people paint a rosy picture of surgery and life after. I am sorry I ever found the forum because it really convinced me to go through the surgery. My surgeon was Dr. Boachie, also one of "the best" and I have had nothing but problems. I was fused T3-S1 on 6-7-11 and had multiple complications including pericarditis. I continued with constant pain, pressure and a feeling of being abraded from the inside with no obvious cause- all x-rays, CT, and MRI's were normal. In Dec 2013 Dr. B. removed all my hardware, suspecting a hardware infection, except for L-2-S1 on the left because it was too imbedded in bone and I lost 5000cc blood, basically my total body volume. I was very sick and in the hospital 10 days and went home with a PICC line for antibiotics to treat the P. Acnes and MRSA that was cultured from my hardware. 9 months after the surgery the base of my incision opened and started draining. Dr. Kim, who replaced Dr. B. said I have a chronic P. Acnes infection, since not all the hardware was removed. I had a fracture at T11 3 mos. post-op and now have PJK. I lost all the height I gained and I am hunched over. And I still have constant pain. I know there are other people who have had bad outcomes too since I have corresponded with them outside the forum. They are hesitant to post, just as I have been. I know exactly how you feel. Not one day goes by that I have not regretted my decision. I do not in any way blame Dr. Boachie. He has been very caring and compassionate. This is a very high risk surgery, and sometimes even having "the best" does not ensure a favorable outcome.

[TwinmomTN]

I would not have posted my outcome if another member had not persuaded me to, as she said people need to be informed about the bad outcomes too. I was just like you and all the positive outcomes from this forum convinced me to go through with the surgery. Wow, it sounds like you have it even rougher than me. I'm so sorry that you've been through so much agony! When your hardware was removed, was replacement hardware put in its place? I can't imagine going thru what you've been thru. I've had 4 surgeries in 3 yrs, but only 2 were spinal. I had a lumbar decompression and revision 6 months post op original surgery because I was in so much pain. But the surgeon found no cause for the pain. I recently spent 3 weeks in Pennsylvania for intensive myofascial treatment, which didn't really help with pain relief either and was extremely expensive. I would not have been able to afford it had my Dad not come thru. Thank you for letting me know that I'm not alone. This situation can be very isolating because no one understands.