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



TwinmomTN
06-05-2015, 06:57 PM
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
06-05-2015, 08:03 PM
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
06-05-2015, 09:00 PM
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
06-06-2015, 01:00 AM
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
06-06-2015, 01:14 AM
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
06-06-2015, 07:39 AM
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
06-06-2015, 11:38 AM
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
06-06-2015, 04:58 PM
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
06-07-2015, 12:50 AM
Pam, you sure have had a rough go at this and Iím 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 hasnít 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 NSAIDís? Try replacing with a prescription NSAID, like Diclofenac and reduce or wean off the opoids? I donít 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 herniationís 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 wasnít keen on opoid usage for pain and was approved on NSAIDís for pain control. Iím not a doctor, just reporting prior experience. This happened with an orthopedic and a vascular surgeon.

I am also friends with Dr Brett Babatís 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 donít 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 whatís happening live.

Ed

LindaRacine
06-07-2015, 12:02 PM
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
06-07-2015, 07:14 PM
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
06-07-2015, 11:31 PM
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
06-08-2015, 08:20 AM
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
06-08-2015, 01:41 PM
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
06-08-2015, 08:38 PM
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.

TwinmomTN
06-08-2015, 08:46 PM
Shocking to discover that such a large percentage end up with PJK! Wow, wish I had known this prior to surgery. Guess I need to clarify, this is adults > 59. But still shocking to me.

Lorz
06-09-2015, 11:29 AM
Pam- No I did not have the hardware replaced. Dr. Boachie said all the fusions were solid, but did warn that the first several months I would be at risk for fracture as I needed to produce more bone to fill in the holes left from removing the hardware. I was very surprised to end up with PJK since I am fused all the way up to T3. Yes, there are many things I wish I would have been aware of pre-op, but I've learned to stop dwelling on it and try to focus on accepting who I am now. You are right, it is not easy and can be very lonely. I'm available any time you need to vent.

mabeckoff
06-09-2015, 12:24 PM
What is PKJ?

Lorz
06-09-2015, 01:17 PM
What is PKJ?

Melissa- Its proximal junctional kyphosis.

TwinmomTN
06-09-2015, 07:33 PM
Lori, how did you know that there was infection in the hardware, btw?

Lorz
06-10-2015, 03:47 PM
Lori, how did you know that there was infection in the hardware, btw?

It was pretty much process of elimination. Everything else was normal so my Dr. suspected a P. Acnes infection which is becoming more and more of a problem with implanted hardware. It lives in a biofilm around the hardware and is of low virulence so the only symptom is usually continued pain with no obvious cause. It was a gamble taking it out, and I'm sorry I did. The pain hasn't changed but my back has. Its possible to live with a chronic P. Acnes infection (its the same bacteria that causes acne). The MRSA they felt was a contamination after removal since I would have been very sick if I had an active MRSA infection for 2.5 yrs. But, because it grew out on culture I had to be treated for it. I have worked in healthcare for almost 40 years, so it is possible that I am colonized with it.

Lizardacres
06-10-2015, 06:37 PM
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!

You are one of us and your story could be the story of each and every one of us. I'm really glad you decided to post as outcomes fall on a spectrum and your outcome is needed for a complete picture. I am most sorry for your isolation. Please come back and post again.

As far as your comment re: suicide, people turn to suicide when they feel hopeless. I don't even know if it is even within somebody's power to not feel hopeless, it's a brain chemistry thing and some people are more at risk for it than others. But the anti-depressant drugs seem to work pretty well for many people - I wish more people would find a good psychiatrist and get the help they need when things are headed down that road. I do want to say though, that it bothers me when on this forum, people are encouraged to stop taking pain medications. I think the decision to cut back or stop pain meds is a very personal one and I think it is hurtful when you are in pain and made to feel like you shouldn't be taking pain meds. I really worry that the mis-use of pain meds for recreational purposes is making these drugs harder to get for people that really need them and that is just terrible. I feel very strongly that if pain meds make your life tolerable and increase your quality of life because it allows you to be more active - that's a good thing. Of course they have their drawbacks but these are most apparent to the people taking them - they don't need to be reminded.

It's one thing when people are wanting to wean off pain meds and ask for advice, but it's not a contest to see who can stop the soonest. Sorry for the rant.

I really do hope you can find some relief. Please share anything that you find is helpful.

Mojo's Mom
06-12-2015, 05:11 PM
Pam, thank you SO much for posting this, it is important!

Sometimes I wonder if I am not being stupid to keep turning away from surgery, with my big curves, ugly rib hump, significant documented progression (although it has stopped for now) and various pains. But the fact is, bad stuff can and does happen, no matter how expert the surgeon and we all need to know that going in. It is horrific surgery, a tremendous assault on the body. Our spines are opened up, broken, chiseled, drilled, screwed full of hardware, crowbarred into new shapes and positions, muscles cut, hours under anesthesia. Virtually everything is disturbed, most critically ALL the nerves. It is not a thing to take lightly. And at the end of it, a body reshaped into something we then have to learn all over how to live in, how to manage our lives physically without the ability to bend or twist, a body that feels unnatural, however much better it may appear on the outside.

I will continue to work my Schroth program (suggested by my excellent surgeon, by the way, I know there are Schroth-trashers on this forum, but it has helped me) and stay in the best shape I can, and hope I can hold my ugly but functional shape without taking this most drastic step. But if I do, I will be fully warned.

Your sharing of your experience is very much appreciated.

babyboomer16
06-13-2015, 01:01 PM
You are one of us and your story could be the story of each and every one of us. I'm really glad you decided to post as outcomes fall on a spectrum and your outcome is needed for a complete picture. I am most sorry for your isolation. Please come back and post again.

As far as your comment re: suicide, people turn to suicide when they feel hopeless. I don't even know if it is even within somebody's power to not feel hopeless, it's a brain chemistry thing and some people are more at risk for it than others. But the anti-depressant drugs seem to work pretty well for many people - I wish more people would find a good psychiatrist and get the help they need when things are headed down that road. I do want to say though, that it bothers me when on this forum, people are encouraged to stop taking pain medications. I think the decision to cut back or stop pain meds is a very personal one and I think it is hurtful when you are in pain and made to feel like you shouldn't be taking pain meds. I really worry that the mis-use of pain meds for recreational purposes is making these drugs harder to get for people that really need them and that is just terrible. I feel very strongly that if pain meds make your life tolerable and increase your quality of life because it allows you to be more active - that's a good thing. Of course they have their drawbacks but these are most apparent to the people taking them - they don't need to be reminded.

It's one thing when people are wanting to wean off pain meds and ask for advice, but it's not a contest to see who can stop the soonest. Sorry for the rant.

I really do hope you can find some relief. Please share anything that you find is helpful.
Lizardacres, Thank-you for being so compassionate for the people that are trying to have some quality of life in the best way possible. Whether it be narcotics or anything that helps. The people that live with this pain should never be told to wean off of their medication, or suggest they wean off it and try other means.
I know that the last resort for some of these people have been pain pumps, which is another surgery. but one of our forum people was told because of the medal from the bottom sacrum on up to the neck, they weren't elegable because of the fact it he medal would create a bigger chance of infection. They connect the tube for the pain pump medicine directly into the spine . So there's not a lot of options going on for some of these people. Anyway, thanks for your standing up for the people with failed surgeries that have left them in pain. They don't need to feel guilty for taking anything that helps them get through the day. Warmly, Linda

mabeckoff
06-13-2015, 01:38 PM
As most of you know, I have a lot of hardware in my back. I was told that I qualify for Spinal Cord Stimulation Pain Relief. It took going to several different Pain management Doctors. Dr Bederman feels that I am an excellent candidate for this . So I urge people to look into it. The one that I choose will allow me to have MRIs in the future as well.

Melissa

susancook
06-13-2015, 06:53 PM
It was pretty much process of elimination. Everything else was normal so my Dr. suspected a P. Acnes infection which is becoming more and more of a problem with implanted hardware. It lives in a biofilm around the hardware and is of low virulence so the only symptom is usually continued pain with no obvious cause. It was a gamble taking it out, and I'm sorry I did. The pain hasn't changed but my back has. Its possible to live with a chronic P. Acnes infection (its the same bacteria that causes acne). The MRSA they felt was a contamination after removal since I would have been very sick if I had an active MRSA infection for 2.5 yrs. But, because it grew out on culture I had to be treated for it. I have worked in healthcare for almost 40 years, so it is possible that I am colonized with it.

Lorz, I was recently diagnosed with P. Acnes infection of my hardware. My symptom was thoracic back pain and then on X-ray, lucency around some hardware and a broken rod at T10-11. Initially, it was thought that the lack of fusion was only around T3-5, but at surgery, he found that T2-11 lacked fusion. Dr. Hart suspected an infection, so he removed all of the hardware from T2-T11 in addition to rebuilding my back/vertebrae, adding BMP, replacing the rods and adding a third one, and tethering the rod to my rib. The surgery was 13 hours. He did not do anything with the lumbar hardware as he said that it all looked good.
The culture came back on day 6 as you said, it is very slow growing. I am on antibiotics, first through a PICC line for 6 weeks, now orally. I take a cephalosporin and probably will take it for the rest of my life. Like you said, the bacteria lives in the biofilm on the hardware. The biofilm and bacteria stop the osteoblastic activity, so the osteoclasts continue to break down the bone.
I worry about drug resistance in the future. An international expert on instrumentation infection, Dr. Penelope Barnes works at the university where I had my surgery (OHSU). She has a PhD (i think in biochemistry) and an MD. She has an awesome way of explaining the very complicated way that hardware infection destroys your back. I am almost 3 months out from surgery and continue to wear a brace, neck collar, and bone stimulator.

Lizardacres, I applaud your compassionate comments and thank you for posting them. Chronic pain is very isolating and has a profound impact on families/relationships and as you said frequently leads to isolation and depression/hopelessness. I know that there are pain management options/resources that might be available in addition to analgesics, and I hope that people that are in continued severe pain have access to such options and that the alternative therapies provide some relief.
We are all in this scoliosis forum together to find mutual support. Some people are "lucky" to have surgery and deformity and pain relief with one surgery. Others have multiple surgeries, have surgery and find the pain and disability worse than before surgery, or never have surgery and continue with increasing pain and deformity.


It is frequently very difficult for me to read the forum entries of people who have surgery and are relieved of their pain and have no complications. I am jealous of their success and wish that I had the same outcome. After 3 surgeries, I have a PJK, am mostly in a wheelchair, and worry about the possibility of drug resistance and future surgeries. After my spinal cord injury (one of my screws pulled out and it entered my anterior spinal cord), I realized that I was "the biggest nightmare" for people anticipating surgery. While I used to look at the forum entries a few times a week, I find myself feeling somewhat alienated from the forum and the success stories. I own the problem and am dealing with it.
Susan

titaniumed
06-14-2015, 02:59 PM
In 1974, I was diagnosed with twin 50ís and scoliosis surgery back then was like putting men on Mars.....It was considered beyond dangerous, a thing that most considered crazy. As time passed, I read many books about scoliosis, remember when the screws were first being used, and wondered if it would ever happen. As the decades passed, the pain got worse and prepared for the eventual. I talked to surgical patients, even read ďConfessions of a Medical HereticĒ by Dr Mendelson back in 1981. You would think after reading that one, and hearing from my own surgeon that complications were 100% guaranteed and was rejected, that I would have stopped me in my tracks. But I was dying and the pain was completely out of control. I had no choice at all. Many of us donít have a choice. Surgery did save my life.

My decision was also made on hearing or seeing that people actually DID made it through ok.....a sort of hope installed in the fact that there was a chance, that I actually had a chance at this.....Since this is a support forum, its valuable hearing about all the success stories, and also about those that have had complications. Itís a balance that we all need to be aware of, and to expect that our surgeries are very serious things that need careful thought.

I consider my surgeries a success and I am doing pretty good, but even though this has happened I do know that at some point that there will be more on the plate for me at some point and will at some stage have my neck fused up higher. Its not something that I dwell on all the time, but its there. I think that itís fortunate, and that any person in perfect health would think Iím crazy for saying this, but itís the truth. I can imagine what kind of pain all of you guys are going through, and it really hurts having to see what some of our members have gone through with all the revisions, infections and so forth.

I like to think that there is an answer, and there is. There is always an insult or pain producing problem that needs to be found. There is always hope that our pain will surpass, God willing, I am praying for all of you...Sometimes there are no answers, my brother is a perfect example, he is in his bear suit, but he always is looking for answers. His hope is exemplary since his situation will not improve, he has congenital chromosomal issues and traumatic brain injury from a car accident. The meds work and donít work......but its all beyond that. He now knows this, its not about what someone can do for him or his next medication. Its about his hope and appreciation for life. He can actually find the bright lights that drive him....

and there are things that do make him happy through all the pain.

I hope this made some sense, this is hard stuff for me to write.

Ed

mabeckoff
06-14-2015, 09:47 PM
I understand what Ed is saying . When I had my first surgery in NC in 2010 and my surgeon messed me up badly , I did not know what I was going to do. I was in constant pain , tilting , had a spinal cord injury and was moving to CA. I was on so many narcotics trying to get through the day. I did meet Dr Bederman and many,many surgeries later and many years later , I am now the best that I am ever going to be. There is nothing more that can be done for my back and neck. I am fused from C2 to my sacrum . It is not an easy life. I am in pain and there are many things that I cannot do now. I do not dwell on those. I am trying to focus on the good in my life. Pain Management is really helping me and I am really hoping not to go back on narcotics again, except when I have surgery.

I had to have scoliosis surgery . I do not like to think where I would be now if Dr Bederman and I had not met.

Melissa

ksmom0611
06-16-2015, 09:26 AM
Thank goodness someone brought up the issue of stopping meds! I have been thinking the same thing for months but didn't have the courage to say anything. Some people need meds! Period. They are in too much pain and usually turn to narcotics out of desperation. Studies have shown that people who take meds for pain and not to get high do not get addicted. I think pushing people to get off pain meds, almost shaming them that they are still reliant on them, has been a long, sad trend on this forum. I've spoken with others offline who've said the same thing. We are in pain, we deserve relief. If you find a good pain management doctor he/she will tell you the same thing.

LindaRacine
06-16-2015, 12:32 PM
Thank goodness someone brought up the issue of stopping meds! I have been thinking the same thing for months but didn't have the courage to say anything. Some people need meds! Period. They are in too much pain and usually turn to narcotics out of desperation. Studies have shown that people who take meds for pain and not to get high do not get addicted. I think pushing people to get off pain meds, almost shaming them that they are still reliant on them, has been a long, sad trend on this forum. I've spoken with others offline who've said the same thing. We are in pain, we deserve relief. If you find a good pain management doctor he/she will tell you the same thing.

Hi...

I think you're right, that they don't get high, but I think almost everyone gets addicted once they've been on narcotics on a regular basis for awhile. Some people become addicted after only a few weeks. For other it takes a little longer. Getting off of narcotics will almost always cause withdrawal symptoms. The longer one takes narcotics, the harder the withdrawal.

In the short term, narcotics are usually necessary to get through the first 6 to 12 weeks postop. After that, one can't really judge the effectiveness of narcotics without actually getting off the drugs and through withdrawal.

--Linda

Lorz
06-16-2015, 02:30 PM
Susan- Thank you for the info about P. Acnes. I was not aware that the bacteria would interfere with osteoblastic activity. Since some of my hardware remains, I would assume so does the P. Acnes and thats very concerning to me. I am also on cephalexin but was told I would be on it approx. 2 years. Was your surgeon concerned about adding new hardware because of the infection? I worry that if I do need any hardware replaced in the future the existing P. Acnes will prevent me from having it done.
BTW, you have been through MORE than your share of complications! You always have a positive attitude which is admirable. I know as health care workers we may be more prepared for postop issues, as far as realistic expectations but I think neither of us had anticipated what we have been through. I certainly hope this surgery was your last!! I wish you a speedy, complication free recovery! Lori

babyboomer16
06-18-2015, 03:06 AM
I understand what Ed is saying . When I had my first surgery in NC in 2010 and my surgeon messed me up badly , I did not know what I was going to do. I was in constant pain , tilting , had a spinal cord injury and was moving to CA. I was on so many narcotics trying to get through the day. I did meet Dr Bederman and many,many surgeries later and many years later , I am now the best that I am ever going to be. There is nothing more that can be done for my back and neck. I am fused from C2 to my sacrum . It is not an easy life. I am in pain and there are many things that I cannot do now. I do not dwell on those. I am trying to focus on the good in my life. Pain Management is really helping me and I am really hoping not to go back on narcotics again, except when I have surgery.

I had to have scoliosis surgery . I do not like to think where I would be now if Dr Bederman and I had not met.

Melissa. So how do you deal with pain Mellissa? You can PM me if you like, as I do not mean to hi jack this thread . Linda

Spring72
06-18-2015, 08:15 AM
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!

I am just going to say.....wow, someone had the kahunas to actually put it out there. I haven't been on here in 4 months because this forum and peoples 'awesome' recovery stories upset me e-v-e-r-y time. This time was no exception, reading this caused me to burst into tears...I could have written it. I had surgery T-4 to sacrum in 2012 by the renowned Dr. Lenke...I am in constant pain, I am disabled at 43 years old...it has ruined my life. Scoliosis has ruined my life. Thank you for being honest...thank you for speaking for those of us that are just too damned tired...so tired.

JenniferG
06-18-2015, 06:10 PM
It goes without saying that those of us with fortunate outcomes feel enormous grief for those who haven't. It's a terrible lottery. But one thing keeps coming to mind and I have to ask...Pam and Spring, do you feel supported by your surgeons, do you feel the "system" is doing everything it can to help you? Do you feel everything's been done that could possibly be done? Every investigative test done?

I'm thinking that it would be sooo much worse if you felt unsupported, that your surgeon had washed his hands of you and left you in pain, without trying everything possible to help.

susancook
06-19-2015, 05:42 PM
It goes without saying that those of us with fortunate outcomes feel enormous grief for those who haven't. It's a terrible lottery. But one thing keeps coming to mind and I have to ask...Pam and Spring, do you feel supported by your surgeons, do you feel the "system" is doing everything it can to help you? Do you feel everything's been done that could possibly be done? Every investigative test done?

I'm thinking that it would be sooo much worse if you felt unsupported, that your surgeon had washed his hands of you and left you in pain, without trying everything possible to help.

Jennifer, your comments really touched me and I appreciate your perspective/sentiment.

My surgeons are very supportive of me and that has made my situation less frustrating for me. I also have a wonderful supportive family. Having said that, being disabled in a wheelchair or crutches was not what I had hoped for. I was 1 year & 5 months out from surgery and thought that I had won the "healthy postop back lottery" and had beat the odds of the spinal surgery lottery when I started to have symptoms of spinal cord injury. Still, I am able to get out into the community some and am very slowly improving.

My heart goes out to Pam and Spring....and probably others who dropped off of the forum because of the continuing severity of their postop pain. I cannot imagine what they are going through. There must be some procedure to cut nerves or otherwise abate the severe pain. Prior to my last surgery, when I was in a lot of thoracic pain due to the lack of fusion, I asked Dr. Hart, "So, what happens if this does not help my pain?", he said something about, "then we could look at other surgeries on the nerves that are causing the pain". I did not ask him what that would entail.

We are a community that supports each other and I hope that they can feel the support. There are some great pain management docs at university hospitals who must have something to offer.

Susan

PeggyS
06-19-2015, 09:00 PM
It goes without saying that those of us with fortunate outcomes feel enormous grief for those who haven't. It's a terrible lottery. But one thing keeps coming to mind and I have to ask...Pam and Spring, do you feel supported by your surgeons, do you feel the "system" is doing everything it can to help you? Do you feel everything's been done that could possibly be done? Every investigative test done?

I'm thinking that it would be sooo much worse if you felt unsupported, that your surgeon had washed his hands of you and left you in pain, without trying everything possible to help.

Well said, Jennifer.
Those of you with painful outcomes are frequently on my mind.
Please know that You are supported in my prayers every day for pain relief and healing solutions: Susan, Melissa, Pam & Spring.

mabeckoff
06-19-2015, 09:59 PM
It goes without saying that those of us with fortunate outcomes feel enormous grief for those who haven't. It's a terrible lottery. But one thing keeps coming to mind and I have to ask...Pam and Spring, do you feel supported by your surgeons, do you feel the "system" is doing everything it can to help you? Do you feel everything's been done that could possibly be done? Every investigative test done?

I'm thinking that it would be sooo much worse if you felt unsupported, that your surgeon had washed his hands of you and left you in pain, without trying everything possible to help.

That is the way that I felt with my NC surgeon. I know that something was wrong but he would not admit it . My surgery was in May of 2010 and finally inMarch of 2011 he said that I had a broken rod.

JenniferG
06-20-2015, 04:26 AM
Thanks Susan, I'm so glad you have felt the support. I feel it's incredibly important. The question was probably too personal, but I think you confirmed what I've been thinking, that it would be so much worse if you felt abandoned, not listened to, or not cared about by those charged with caring for you.

I'm so glad that things are improving for you Susan.

Melissa, I'm sure many of us here have cried tears of frustration for you after that first surgery. You've always been incredibly restrained in your remarks about that surgery which caused you such harm and misery. You have been to hell and back because of it.

So happy that since being in California, you've had caring medicos and at last you're getting some help with the pain. It must give you hope.

jackieg412
06-20-2015, 07:32 AM
I agree with the statement of feeling abandoned. I am feeling that from my spine team. I was not heard about the shoulder blade problem leading of of my thoracic fusion. 4 years of it. I did do PT but now we are past that. As this more complicated problem developed, I turned to the spine doctors for help. I was sent to the University but as that was occurring, my original doctors actually got angry at me for asking them to look over the CT scan the university doctor ordered. It was so unprofessional and disheartening. But, I now have a treatment plan and surgery scheduled on June 29. Hopefully it is in time to recover proper shoulder movement but this has been happening over 4 years.
It makes me feel that I can not trust my original doctors to listen and care. Too bad.

titaniumed
06-20-2015, 08:57 AM
As most of you know, I have a lot of hardware in my back. I was told that I qualify for Spinal Cord Stimulation Pain Relief. It took going to several different Pain management Doctors. Dr Bederman feels that I am an excellent candidate for this . So I urge people to look into it. The one that I choose will allow me to have MRIs in the future as well.

Melissa

Melissa, after reading about MDA and the discontinuation of the Las Vegas telethon, I was reading about Jerry Lewis and his health. He had a spine injury in 1965, was addicted to Percodan for 13 years then quit in 1978. He is the spokesperson for Medtronicís neurostimulator. I had no idea about these devices....

https://en.wikipedia.org/wiki/Jerry_Lewis

http://www.medtronic.com/patients/chronic-pain/device/index.htm

Benefits and risks
http://www.medtronic.com/patients/chronic-pain/device/neurostimulators/benefits-risks/index.htm

http://www.medtronic.com/patients/chronic-pain/personal-stories/index.htm

Do you know which device you are getting? and when is this happening?

Ed

golfnut
06-21-2015, 07:59 AM
I have been reading the posts on this thread since it was started and felt the need to apologize and sympathize. I am one who "painted a rosy picture" of my recovery. I was being absolutely truthful and realize that I have been extremely fortunate, so far. It s truly heartbreaking to read how so many are in constant pain. I met Linda and Spring in Dr. Lenke's office and have corresponded with them. When your surgeon is one of the best, we all expect a good outcome. I really believed that Dr. Lenke couldn't possibly have a patient that wouldn't be thrilled with the results. I am so sorry that I may have been an influence on anyone who now regrets having had this major surgery based upon my frequent posts a few years ago of a smooth recovery. I needed to read the positive posts on the forum before my surgery 4 years ago, but definitely see the need for a thread like this so that people are aware of unfortunate outcomes as well.

mabeckoff
06-21-2015, 10:31 AM
Melissa, after reading about MDA and the discontinuation of the Las Vegas telethon, I was reading about Jerry Lewis and his health. He had a spine injury in 1965, was addicted to Percodan for 13 years then quit in 1978. He is the spokesperson for Medtronicís neurostimulator. I had no idea about these devices....

https://en.wikipedia.org/wiki/Jerry_Lewis

http://www.medtronic.com/patients/chronic-pain/device/index.htm

Benefits and risks
http://www.medtronic.com/patients/chronic-pain/device/neurostimulators/benefits-risks/index.htm

http://www.medtronic.com/patients/chronic-pain/personal-stories/index.htm

Do you know which device you are getting? and when is this happening?

Ed

I will discuss this on my thread

mabeckoff
06-21-2015, 10:32 AM
. So how do you deal with pain Mellissa? You can PM me if you like, as I do not mean to hi jack this thread . Linda

I will discuss this on my thread

LindaRacine
06-21-2015, 02:50 PM
The best surgeons probably have more bad outcomes than many surgeons. When one takes on the riskiest cases, they're going to have some bad outcomes. Chances are, if you have a bad outcome from surgery with one of the top doctors, you might have had a bad outcome regardless of who did the surgery.

Instinctively, we think that if we have pain, there has to be a mechanical reason for it. And, maybe there is. But, if someone like Dr. Lenke can't find it, there's not much that can be done. I'm sure that's no consolation if you're one of the really unfortunate people who have to live with that reality.

--Linda

Pooka1
06-21-2015, 03:38 PM
I have been reading this thread and wanted to say how sorry I am for people still in pain after surgery.

Are you saying you have more pain than you did prior to surgery? That is, was not having surgery an actual option that you could have taken in terms of pain?

The pain doctors need to do more work on this. There is too much suffering.

mabeckoff
06-21-2015, 04:51 PM
I had to search and go to several different pain management doctors before I found the ones that I am currently working with. I am certainly not saying that I am pain free but I am working towards a liveable goal. In addition, I am seeing a pain psychiatrist,

I , also, knew that one does not have scoliosis surgery to get rid of pain. One has it to stop the progression of your curves even further.

Tableone
06-22-2015, 03:27 AM
I have been in pain literally EVERY SINGLE DAY since my original Scoliosis surgery thirty years ago. You just can't fuse the whole human spine, which is meant to bend, without dire consequences. My muscles want to bend and stretch and of course they can't. Now I am experiencing terrible thoracic pain - it feels like an ax has been lodged into my spine - a deep ache between the shoulder blades that comes and goes. When it comes it is so severe that I literally cry in public. The pain extends across my scapular and into my shoulders and neck. It is now as bad as my lumbar pain from my crumbling facet joints (which are crumbling BECAUSE of my original surgery.) I've asked three deformity surgeons about it and NONE of them will even comment. I have friends on this forum that have the same thoracic pain and also do not get answers from their surgeons.

jackieg412
06-22-2015, 07:19 AM
You may try an upper extremity specialist. I did not find the answer to the shoulder blade issue until that doctor looked at the fusion and the shoulder. Since you are also having shoulder pain that specialist may be able to find the reason. Mine did and the solution is different . The scapula is getting caught on part of the ribs that are in the way from scoliosis deformity. My correction surgery is next Monday. I will let you know if it helps.

susancook
06-28-2015, 06:15 PM
,

I , also, knew that one does not have scoliosis surgery to get rid of pain. One has it to stop the progression of your curves even further.

You are probably talking about people that have curves that start early in life that are not associated with degenerative spinal problems.

For those of us with degenerative scoliosis [adult onset degenerative scoliosis], the surgery is for pain as the curves are generally relatively small [mine= 20*T & 36*L] and the only reason that we have a curve is because the degenerating discs collapse asymmetrically. The surgery is to repair the discs and then straighten the curve prior to spinal fusion.

Congratulations, Melissa on your efforts to get ahold of your pain and seeking the assistance of a Pain Psychiatrist. I have been away from the forum for a while, so have not kept up with your progress. You obviously have not given up, and I hope that you continually find help to decrease your discomfort. I look forward to reading about the help that the stimulator brings.

Susan

mabeckoff
06-28-2015, 06:44 PM
Susan,


Thanks for your kind words of encouragement. I am willing to keep on trying as I do not want to live with this amount of pain forever.

I really do not know when my curve started . I do know that I never was told in school that I had a problem.

I do remember in my 30's that my PCP told me that I had a curve but she never told me to do anything about it.

In my late 40s is when I really started having problems.

TwinmomTN
07-19-2015, 03:12 PM
Susan,

I was about the same age as you, in school,around 13 or 14 when mine was diagnosed. At that time it was probably around 25-30 degrees, with a smaller additional, S curve. At that time I was told not significant enough to do surgery and was prescribed some exercises to do. Didn't help since I had stopped growing. Oh, was also prescribed a built up shoe...tell a freshman girl entering high school she will have to wear that and look like a freak. I cried and told my parents I would not wear it. 30 years later pain and progression to 80 and 60 degree curves, I felt I didn't have much choice, but finding this forum encouraged me to go ahead with surgery and never even occurred to me I would sentenced to the rest of my life with disabling chronic severe pain. Pain is in my hip and radiates down back of left leg, severe radiculopathy- sciatic pain for those of you who have asked. And yes I've every test known to man, CT fluoroscopy, MRI with contrast, etc. only to be told everything looks fine.

Take care Susan and I hope you find a resolution.
Pam

scooter950
07-24-2015, 08:50 AM
Hi Pam, I certainly appreciate hearing from you. it is so frightening to hear about your post-op condition, you did have a very long fusion too. I know of another member who must use narcotic patches to minimize the pain= not "control it' because when you live day in and day out with pain, you can only hope to numb it/ lessen it. ( she is at least 4yrs post op now). Just curious: does distraction help at all? (it helps me temporarily). I may face your future- with or without surgery; my discs are wearing out with age and use. this IS a reality we face, and I am grateful you have posted. and I pray you may find some relief, even temporary, so that you can keep your sanity. I cannot imagine how difficult life has become for you. but you belong here, with the forum- you are one of us, and we are here to support each other. sympathy and prayers xxxx Jamie in TX

dailypain
08-01-2015, 10:34 PM
I also applaud the people posting the truth. Most spine surgeries do fail and we are doomed to live in pain forever. I guess it was what God destined for us. What really bothers me is those non-scoliosis people out in the world that think we exaguerate our pain and limitations. I actually have to show a copy opf my hardware for people to believe me. Everyone thinks they have back pain but just do jot understand us.

Only we can understand.

dailypain
08-02-2015, 02:33 PM
Very well said Dixiemom.

I know we are supposed to accept what God gives us in life and I do. But I am not going to down play it anymore. Sometimes it helps us to let our frustration out in words to our Scoliosis friends that actually DO UNDERSTAND.

Thank you to the person that started our 'Frustration with Pain' Thread.

jackieg412
08-02-2015, 05:12 PM
Daily pain have you checked out Melissa posts. She is having a different kind of help with pain. Don't stop looking for the help you need. It is out there somewhere.

dailypain
08-06-2015, 04:24 PM
Daily pain have you checked out Melissa posts. She is having a different kind of help with pain. Don't stop looking for the help you need. It is out there somewhere.



Not sure which one is Melissa. But thanks for the info. My problem is more than pain. I have walking & sitting limitations also. Which I'm sure are familiar with other scoliosis friends fused to sacrum.

Plus, I am having a lot of 'pulmonary issues'. I get short of breath too often. My pulmonary dr says its my heart but my cardiologist says its my lungs.

Scoliosis takes a toll on many other parts of our body besides our bones.

I eat very healthly now ( since 2012 ) hopefully to keep my 'innereds' from causing me serious problems.

mabeckoff
08-06-2015, 11:46 PM
Not sure which one is Melissa. But thanks for the info. My problem is more than pain. I have walking & sitting limitations also. Which I'm sure are familiar with other scoliosis friends fused to sacrum.

Plus, I am having a lot of 'pulmonary issues'. I get short of breath too often. My pulmonary dr says its my heart but my cardiologist says its my lungs.

Scoliosis takes a toll on many other parts of our body besides our bones.

I eat very healthly now ( since 2012 ) hopefully to keep my 'innereds' from causing me serious problems.


I am Melissa mabeckoff

I am fused C2- sacrum

Please read my threads and ask questions

Melissa

lduran
08-25-2015, 01:41 PM
Not all surgeries turn out rosey like most here post.

As I recover from one of those "rosey" surgeries my heart aches with compassion and the tears flow freely. At 4 months post-op, I feel thankful and fortunate that finally the worse is over and now back to work (with limitations) and little by little getting my old life although with a "new normal" and minimal pain meds. I used the good and not so good experiences shared from this forum and hoped for a good outcome. Thanks to those who shared I went in with eyes wide open.
Scoliosis in its many forms and shapes is painful and heavily debilitating. Only the person who has it understands and the repeating of the same thing gets old to the people around us when we complaint about back pain. It's not a simple back pain... is a life of misery and questioning why me and searching for what to do to make it better.

I, like others have already said, am interested in listening to the other not so rosey stories and hear what others are going through. This is a support forum and I believe all stories and experiences are welcomed. I fervently pray that you all find a relief to your pains, complications and to whatever is ailing you.
Loretta

Back-out
09-01-2015, 11:03 PM
No time to write much as breast cancer (routine screening turned it up) has preempted everything for the time being. (I won't know the stage until surgery which is to be finally scheduled on Tuesday).

However, this:
Dailypain wrote, "I also applaud the people posting the truth. Most spine surgeries do fail and we are doomed to live in pain ".

How many of you think this is true? Linda Racine?
From my last (March) consult, Thomas Errico wrote in his dictated notes, my chances of complications were 100% and of serious complications, 20%.

Wondering what the odds truly are of such horrendous outcomes (so very, very sorry TwinmomTN, susancook, dailypain, Tableone, Melissa and all too many others!)

Rethinking my eventual spinal surgery (that is, if I still qualify). Don't know what my predictable future is without surgery as I've had all herniated disks for at least ten years, and can scarcely walk now without a walker (at most 100 yards). Not counting constant pain (except reclining in THE perfect position). This means I depend on ADVIL (maximum dose) and Norco (which I try to keep at a minimum having experienced a hellish withdrawal once on my own).

But then again, "things can always get worse", I guess. I would hate to be in still more spinal pain so I couldn't even concentrate on writing or art (former professions to which I hope to return).

Hoping to hear from someone knowledgeable in the stats just how often patients DO suffer intractable pain post-surgery, in particular at such a severe level.

Back-out
09-01-2015, 11:13 PM
So sorry, friends, to have disappeared abruptly after my long overdue return. Right after posting, I experienced weeks of massive computer and Comcast problems which kept me offline, and I lost momentum as other health and family problems intervened. Leading in due course to - this. Got biopsy results days before knee joint replacement! Cosmic joke, sort of.

(Hopefully, it was caught early)

Doubt I'll be able to write again for foreseeable as I continue to juggle all the logistics of testing and surgical recovery (alone), followed by any treatment that's ordered - if it is. As with spinal surgery, quality cancer facilities are distant from my home town so much time is spent trying to minimize costs of travel and lodging out of town (Yes, I know about all the supports the American Society sponsors but demand far exceeds supply!)

My thoughts are with you all.

susancook
09-01-2015, 11:21 PM
Back-out: Bummer....so sorry about your breast cancer diagnosis, but hope that it is curable. Wishing you the best for recovery.
Hope to see you back here.
Susan with spinal cord injury after spinal surgery

green m&m
09-02-2015, 09:24 AM
Back-out

I'm sorry to hear about what you are about to face.

I wanted to pass along information about a lodging guide called Joe's House.

http://www.joeshouse.org

LindaRacine
09-04-2015, 09:51 PM
There is really no definitive study on complications in adult deformity surgery. There are several multi-site studies being conducted to look at both long and short-term complications. Unfortunately, the percentage of adults who have deformity surgery and who require additional treatment is fairly high. It wouldn't surprise me if we find that the 20 year serious complication rate is 50% or higher. As older and sicker patients are offered a surgical option, the complication rate continues to rise.

There's no question that the complication rate is too high. Unfortunately, spinal deformity is a very complex problem. It's horrible to have to make the decision to either live with chronic pain or risk having surgery that might lead to significant problems.

The good news is that the most serious problems are relatively rare. I've known or heard about a handful or two of people who feel that scoliosis surgery ruined their lives. And, it's hard to know in all of those cases, what these people's lives would have been like without the surgery.


ROCK <US> HARD PLACE

JenniferG
09-05-2015, 04:36 AM
So sorry to hear this latest, Back Out. Sending my very best wishes for a full recovery.

loves to skate
09-05-2015, 02:06 PM
I have been away from the forum for a long time. I am so sorry for all of you who have had such horrible outcomes from your surgery. Many times I have felt sorry for myself because of daily pain, but after reading all of your posts, I realize that even though I have pain every day, most of the time it is not disabling pain. I cannot take anti-inflammatories as they were destroying my kidneys. I had a dumb primary care physician that didn't even notice that my kidney function tests were flagged as high. Fortunately because I was a Medical Technologist in my former life, I always requested copies of my lab reports. I stopped taking NSAIDS, fired my PCP and found a new PCP, and went to a Pain Clinic Doc. He upped my Neurontin dosage and put me on Tramadol. He suggested the Medtronic neurostimulator that I decided to hold off on for the time being. I also went for more physical therapy. It all seemed to help somewhat. Then I had my hip replacement surgery and then seven months later arthroscopic knee surgery. My restless leg syndrome came back after the hip surgery and finally two years later has almost disappeared. It has taken me two years to be able to walk a mile and in the meantime my pain doesn't seem as bad. Life can be a real challenge. I feel so bad that I have complained about my pain now that I read about these horrible outcomes. I am sorry that I had encouraged some of you to go ahead and have the surgery, but because Dr. Rand basically gave me my life back, I thought it was worth a try. Before I had my surgery, I knew I would be in a wheelchair for the rest of my life if I didn't do something drastic. I was basically begging to have the surgery. Melissa, Susan, Pam, Lori, Tableone, daily pain, Spring 72 and anyone else who is suffering so badly, please accept my sympathies for your pain. I pray that with time things will improve for each and everyone of you.
Sincerely, Sally

LSKOCH5
09-09-2015, 10:45 AM
Oh no, Pam. So sorry to read this. I won't give advice nor platitudes, just best wishes that things ease up for you, and prayers for your all-around well being.

babyboomer16
09-13-2015, 03:12 PM
First I want to tell Pam how utterly sorry I am that you are now up against another battle. I don't recall you saying where the biopsy was done on your body, but just hope all turns out well for you. I always worry that on top of these huge surgeries , something like that can also happen.
TwinmomTN, I also live with pain everyday . And it gets very old. I didn't have a choice if I wanted to stay out of a wheel chair. I had a lot of pain for years before I had the surgery, so I knew already what pain is. At least I'm in a upright position while deAling with pain. I just do everything I can to have the best quality of life I can. I feel isolated a lot of the time, because of my condition. I have extreme neck pain(radiates down my arm) . And lower back pain thAt is also causing burning ,numbness in my feet & lower legs(from an impinged nerve). It's frustrating! I suffer from adrenal fatigue from all the stress on my body. Ugh! I could go on, but I think you have heard enough! I feel for you and every person on here that deals with these kind of issues daily. But, like I said, I am walking, and am thankful for that. I am glad you posted about this subject of what we have to deal with after the surgery. I know there are some that have been blessed with no pain at all. And that is wonderful. We at least can understand the plight of these surgeries and I truly understand your feeling. Warm thought of you and all the rest of our scoli friends.

susancook
09-13-2015, 08:11 PM
There is really no definitive study on complications in adult deformity surgery. There are several multi-site studies being conducted to look at both long and short-term complications. Unfortunately, the percentage of adults who have deformity surgery and who require additional treatment is fairly high. It wouldn't surprise me if we find that the 20 year serious complication rate is 50% or higher. As older and sicker patients are offered a surgical option, the complication rate continues to rise.

There's no question that the complication rate is too high. Unfortunately, spinal deformity is a very complex problem. It's horrible to have to make the decision to either live with chronic pain or risk having surgery that might lead to significant problems.

The good news is that the most serious problems are relatively rare. I've known or heard about a handful or two of people who feel that scoliosis surgery ruined their lives. And, it's hard to know in all of those cases, what these people's lives would have been like without the surgery.


ROCK <US> HARD PLACE

Having had a "major complication", rare as mine was, I offer this piece of my wisdom. It is easy to say, after a complication, that one can wish that he/she never had the surgery. In many cases, that is an easy out. We generally assume that if we did not have surgery, then we would be better off than we are now. This is magical thinking. Before my first surgery, I could walk 1/2 block before having to sit down with sciatic pain. I could cook dinner, but was is excruciating pain by the end of my cooking and needed to lay down with an ice pack on my thoracic kyphosis for 1/2 an hour before I could eat. I leaned to the right. My first surgery was 2 plus years ago, and without that surgery, I am sure that I would have degenerated further. So, now I am in a wheelchair/crutches but am still happy that I had the initial surgery. If I had not had the first surgery, I would probably permanently be in a wheelchair within the next 5 years.

If I had a different surgeon, would the outcome be different? Maybe.....but then again, it might have been worse.

My heart goes out to those in chronic severe pain.

Susan

LindaRacine
09-14-2015, 11:42 PM
Having had a "major complication", rare as mine was, I offer this piece of my wisdom. If is easy to say, after a complication, that one can wish that he/she never had the surgery. In many cases, that is an easy out. We generally assume that if we did not have surgery, then we would be better off than we are now. This is magical thinking. Before my first surgery, I could walk 1/2 block before having to sit down with sciatic pain. I could cook dinner, but was is excruciating pain by the end of my cooking and needed to lay down with an ice pack on my thoracic kyphosis for 1/2 an hour before I could eat. I leaned to the right. My first surgery was 2 plus years ago, and without that surgery, I am sure that I would have degenerated further. So, now I am in a wheelchair/crutches but am still happy that I had the initial surgery.

If I had a different surgeon, would the outcome be different? Maybe.....but then again, it might have been worse.

My heart goes out to those in chronic severe pain.

Susan

Couldn't agree more.

Gabriella1212
02-17-2017, 03:17 PM
Hello All-

First off I am extremely sympathetic - and I do understand what real unending physical pain to where you cannot walk is like. With no relief whether you lie down ,sit up etc.

Anyway- I am writing to ask- has anyone with this severe pain ever considered having one of those electrical pain devices implants.? This is not a drug pump. It is not a drug. I knew someone many years ago who I have lot touch with- who was a rep for some kind of medical device like that and it was miraculous for the patients it was put in. I used to hear about back in the day- when I did not have this pain or problems that I have now.

Also this was in the mid nineties or so- so ten to one they would be even better than they were.
I do not know the name or brand- I did not pay attention to that at the time. But boy the stories were really cool and she was not selling me anything- she was just a friend of mine who would tell me about her work.

LindaRacine
02-17-2017, 07:33 PM
Hello All-

First off I am extremely sympathetic - and I do understand what real unending physical pain to where you cannot walk is like. With no relief whether you lie down ,sit up etc.

Anyway- I am writing to ask- has anyone with this severe pain ever considered having one of those electrical pain devices implants.? This is not a drug pump. It is not a drug. I knew someone many years ago who I have lot touch with- who was a rep for some kind of medical device like that and it was miraculous for the patients it was put in. I used to hear about back in the day- when I did not have this pain or problems that I have now.

Also this was in the mid nineties or so- so ten to one they would be even better than they were.
I do not know the name or brand- I did not pay attention to that at the time. But boy the stories were really cool and she was not selling me anything- she was just a friend of mine who would tell me about her work.

Are you talking about a spinal cord stimulator?

jackieg412
02-18-2017, 07:22 AM
I am currently in a discussion about having a spinal cord stimulator placed. Does any one have information on them?

titaniumed
02-18-2017, 10:32 AM
Jackie, Melissa would know......read her past threads and posts.

Ed

rjmacready
02-20-2017, 04:53 PM
I am currently in a discussion about having a spinal cord stimulator placed. Does any one have information on them?

Hi Jackie ,

I got this "quiz" about whether a SCS would be right for me:
http://us1.campaign-archive2.com/?u=f93264af165d7fb7124f7a963&id=7b7e029d1f&e=4d431c96e6

I would seize upon any tech that could possibly help. They have advanced models now ( 32 leads I think) as opposed to the first generation of the devices. They can install one on a temporary basis, in the outpatient center. If you don't like it, or it is worthless, they can easily remove it. If my deformity was not as severe and stable, I would try one myself. However that is not an option for me, because once the curvature started it never stopped, only varying in how fast it progressed. I heartily encourage you to try one, seeing as they can be easily removed. Even if it reduced your opiate intake that would make it worthwhile, would it not? Good Luck, RJM

Gabriella1212
02-20-2017, 05:16 PM
Are you talking about a spinal cord stimulator?

Hello Linda,

I am sorry that I do not know what it was but it was a device that back in the 90's a friend of mine was a rep for - and would accompany a surgeon in surgery to make sure he/she placed it properly. She was a friend of mine and I did not get the name of what it was but I am guessing it was possible the scs All I know was that as a friend she would relate some miraculous stories of people who had not been able to walk be able walk due to pain be able to walk. She would be a little embarrassed or felt awkward she said because she and the doc would visit the patient after the surgery and the patient would be gushing about how my friend saved their life (when in fact it was the surgeon who did the placing of the device). She worked for a medical device company (and had a medical background but not of a surgeon).. Anyway- it sounds like it has improved upon since 1997.. I wondered if that could help some of these people who have severe pain.

I will read up on it.