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View Full Version : Before surgery it was the scoliosis, after surgery it is the fusion



Sami
04-11-2013, 03:32 PM
Hi,

While my surgeon who promised at least 50% improvement in pain after surgery has no idea why my symptoms got worse after surgery, all the other doctors (pcp, pain, neurology, etc) blamed the scoliosis, "of course with a 45 degree curve and passing 40 what do you expect?" Now after the surgery and fusion T4-L1 they are blaming the fusion, "of course with such long fusion what do you expect?" How strange! I don't know what to believe. I feel like I'm in the fair inside the distortion mirrors room.

LindaRacine
04-11-2013, 10:07 PM
Hi....

If your surgeon truly promised you an improvement in pain, than s/he's guilty of malpractice. I have to say, though, that I've never heard a surgeon actually say something like that to a patient. I hear things like "most patients get some improvement in pain" or "you have an x% chance of having some improvement in pain", but never "I guarantee that you'll get at least 50% pain relief". It's difficult to take in everything you're being told when you're thinking about something as devastating as scoliosis surgery. BTW, the doctors that I work with tend to tell patients things like "spinal fusion isn't very reliable in terms of reducing back pain".

I hope you eventually get some relief.

--Linda

jrnyc
04-11-2013, 10:40 PM
Linda...
there are several threads on forum that i will not name...people who
have clearly said they are looking forward to being in less pain after
surgery....with nary a hint of doubt as to whether or not that will come
true....those threads lead me to understand why patients expect pain relief...many...many threads mention EXPECTING pain relief...
this is not to criticize forum...or you, or any moderator....
but when patients say they are disappointed if/when they do not feel
much (if any) pain relief, i am not surprised....
personally, i do not feel i can count on pain relief...one reason i am
frozen in my tracks as to surgery (to sacrum), though i was told by every
top surgeon i have gone to see that i need to have it done.
re reading certain threads, it is clear which people state that they expect
pain reduction...while other patients advise them to look forward to less
pain after surgery. it creates expectations on the part of patients who
are pre op.

jess...and Sparky

Sami
04-12-2013, 10:28 PM
Hi....

If your surgeon truly promised you an improvement in pain, than s/he's guilty of malpractice. I have to say, though, that I've never heard a surgeon actually say something like that to a patient. I hear things like "most patients get some improvement in pain" or "you have an x% chance of having some improvement in pain", but never "I guarantee that you'll get at least 50% pain relief". It's difficult to take in everything you're being told when you're thinking about something as devastating as scoliosis surgery. BTW, the doctors that I work with tend to tell patients things like "spinal fusion isn't very reliable in terms of reducing back pain".

I hope you eventually get some relief.

--Linda

I got myself into a big mess in hopes of living half a decent life. I thought I researched the subject carefully. I read two books about scoliosis surgery and none of them mentioned the possibility of worsening in the pain. The books turned out to be infomercials posing as objective sources. Those people who post about how glad they are to have done surgery are a self selected population. Those not doing well are too much in pain to be able to send messages. My pain keeps on worsening and I do not know where I'm heading.

jrnyc
04-12-2013, 10:44 PM
i am so sorry to read of your worsening pain, Sami...
is there any chance the pain is below the fusion and could be
caused by not being fused to sacrum...?
is the pain in lumbar or thoracic area...?

i truly hope there is a doctor who has an answer for you....
since the surgery is done, and cannot be reversed...would you consider
being fused to sacrum IF a doctor told you it would relieve the load the
unfused portion of your spine is taking...?
have you talked to a pain management doctor to see if there is any
tx, like shots, that might get you out from under the pain long enough
to get a break from constant suffering...????

i really hope you do not give up on doctors completely...
there may be one...like Dr Hey?...who could still help you.

jess...and Sparky

Pooka1
04-12-2013, 11:18 PM
I got myself into a big mess in hopes of living half a decent life. I thought I researched the subject carefully. I read two books about scoliosis surgery and none of them mentioned the possibility of worsening in the pain. The books turned out to be infomercials posing as objective sources. Those people who post about how glad they are to have done surgery are a self selected population. Those not doing well are too much in pain to be able to send messages. My pain keeps on worsening and I do not know where I'm heading.

Has anyone evaluated you for complex regional pain syndrome? There is a time window of treatment as I understand this. Good luck.

http://www.mayoclinic.com/health/complex-regional-pain-syndrome/DS00265

tae_tap
04-13-2013, 09:40 AM
Sammie,
I can relate in a way. I chose to do a short fusion and still have some pain; however, my pain come above and below the fused area. The actuall area that was fused feel 100% better. I new there was a risk of the strain, but wanted to try it anyway.

I hope you find a solution to your pain.

Tamena

rohrer01
04-13-2013, 05:23 PM
Sami,
I'm so sorry to hear this has happened to you. My doctor specifically told me that surgery would make my pain worse. I know how you feel when you said you just wanted to live a half way decent life. My scoliosis isn't one of the HUGE ones, but it is and has been very painful for most of my life. I honestly don't know what life without pain is. If a doctor promised me pain reduction, I probably would have been all about having surgery, too. Don't beat yourself up about it. I don't remember if you said where your fusion is, but there are things that they can do if they can get to your spinal cord. I was offered an intrathecal morphine pump at one time. I turned it down at the time. Now I'm on so many meds, it makes me sick to think about AND I'm still in pain. Is your pain much worse after surgery or about the same? I would definitely go and see a pain management doctor.

Sharon,
That syndrome you posted about sounds awful! At first I thought it was like a "fibromyalgia" type of thing, but not so. There are definite symptoms that can be pinpointed, unlike fibromyalgia which is pain of unknown origin. The treatments seem to be similar, though.

Okay, I reread your post. You are fused T4 to L1. Depending on where your pain is, they may be able to get in above or below your fusion with the catheter if you choose to have a pain pump. For those who say scoliosis is not painful, Ppppbbbbllllaaa! There seem to be more of us with the curves in the 40 to 50 degree range or less that have very painful curves. I don't know what separates those with painful curves from those with no pain, but it is very real pain and this deformity really makes our lives living torture! Whatever the source of the pain is with the scoliosis, surgery obviously isn't always the solution. So why do surgeons even do the surgery with pain being a major criteria in adults? Arghh.

Sorry if this post sounds odd. I'm having a VERY bad pain day. =(

Susie*Bee
04-13-2013, 05:39 PM
I have been on here over 5 years and there have been many people posting, especially awhile ago that would mention continuing to experience some pain. I believe most surgeons also mention that the general population (not just scolis) experience back pain as well, so there would be no promise in not having pain any longer.

I myself g-r-a-d-u-a-l-l-y experienced a decline in pain, and weaned off the hard meds at 5 months, but continued with tramadol periodically after that for awhile. I am pretty good now, but have to say I still have tightness through my shoulder blades and lower back pain on occasion. I can tell when I overdo things. If I REALLY overdo it I will get sciatica. But I know that my back is stabilized and my angles won't progress. The pain isn't anything like it was before my surgery. You may still be having the pain from the surgery... I had that for about a year. I am sorry you were misled. My surgeon said there were no promises at all about any improvement in pain level. Best wishes with all you are going through.

Rohrer-- sorry you are having a bad day.

Sami
04-13-2013, 06:10 PM
Sami,
I'm so sorry to hear this has happened to you. My doctor specifically told me that surgery would make my pain worse. I know how you feel when you said you just wanted to live a half way decent life. My scoliosis isn't one of the HUGE ones, but it is and has been very painful for most of my life. I honestly don't know what life without pain is. If a doctor promised me pain reduction, I probably would have been all about having surgery, too. Don't beat yourself up about it. I don't remember if you said where your fusion is, but there are things that they can do if they can get to your spinal cord. I was offered an intrathecal morphine pump at one time. I turned it down at the time. Now I'm on so many meds, it makes me sick to think about AND I'm still in pain. Is your pain much worse after surgery or about the same? I would definitely go and see a pain management doctor.

Sharon,
That syndrome you posted about sounds awful! At first I thought it was like a "fibromyalgia" type of thing, but not so. There are definite symptoms that can be pinpointed, unlike fibromyalgia which is pain of unknown origin. The treatments seem to be similar, though.

Okay, I reread your post. You are fused T4 to L1. Depending on where your pain is, they may be able to get in above or below your fusion with the catheter if you choose to have a pain pump. For those who say scoliosis is not painful, Ppppbbbbllllaaa! There seem to be more of us with the curves in the 40 to 50 degree range or less that have very painful curves. I don't know what separates those with painful curves from those with no pain, but it is very real pain and this deformity really makes our lives living torture! Whatever the source of the pain is with the scoliosis, surgery obviously isn't always the solution. So why do surgeons even do the surgery with pain being a major criteria in adults? Arghh.

Sorry if this post sounds odd. I'm having a VERY bad pain day. =(



Thank you all for your responses. I did not have any pain until I turned 41 when I started to have occasional pain between my shoulders that worsened with sitting. The pain got worse gradually, but my life was still decent. At 43 I woke up one day at dawn with severe pain that felt like labor pain all over my back. The next day I was unable to sit or stand for more than a few minutes before experiencing severe pain, forcing me to start walking. The pain moved around and included my back, hips, and legs at one point or another, but I was always in pain. I tried shots, Pt, water therapy, you name for 2 years with little improvement. Whenever I sat more than 15 min my pain would go from 3 to 8 and I would have to take a 30 min walking break to calm the pain back to 3. My inability to sit and stand for any significant amount of time pushed towards suregery. Weeks 3-6 after surgery were the best then as the meds got reduced I went to the same old problems. I started to go to a pain specialist and do PT. As time passes my pain is getting worse, but after seeing 16 doctors still no answers. The stiffness in my back started a few months ago for 2 years after surgery I did not feel much stifness in my middle back, but now I do. My stifness was limited to the abs and legs. My pains move around so much and manifest themselves in so many way, it's driving me crazy. Is there anybody out there that is like me?

JenniferG
04-13-2013, 06:11 PM
Me too Rohrer. Hope tomorrow is much better for you.

rohrer01
04-13-2013, 07:08 PM
Jennifer, you have a reason to be sore today. I didn't do anything extraordinary. I hope you feel better.

Sami, I have pain in several different locations. If it's not in one place, then it's in another. I have pain in my spine. I have pain in my neck. I have pain between my shoulder blades. I have had constant pain in the left arm. I have pain in the lower back and down my left leg. Now, I've torn the ligament in my right shoulder, so I can add right shoulder and arm pain to the list. Sometimes it hurts to even breathe because my ribs hurt. It's like chasing the wind with my pain. When I get one area under control, it pops up in another area. It's so frustrating! It all seems to come from my back, though. Well, excluding "female" pain. My pain is so bad that I didn't even realize I had a bad gallbladder, even when I had attacks! I remember the gallbladder tenderness and waking up at night in pain, but it was so minimal compared to the rest of my pain that I never even mentioned it to my doctor. It wasn't until I was having a laparoscopy that my gynecologist said I had one angry gallbladder. It was all white and shriveled up. Needless to say, it had stones and I had to have it removed. The point of that story is to say, YES, I know what the pain is like. It's worse than gallstones. =(

JenniferG
04-13-2013, 09:31 PM
I'm aghast, Rohrer. As one who had her gallbladder removed last August due to stones, I'm not sure how you cope with such pain on a daily basis. I wish there was an easy answer for you.

jrnyc
04-13-2013, 10:24 PM
Sami...
i am in pain, but have not had surgery...
so i can not relate to what it must be like to hurt the way you do, post surgically....especially after getting your hopes up to be at least in less pain after fusion than you were in before...
but i need fusion to sacrum, and it is my lower lumbar that is really bad...
i believe that is part of your spine that was NOT fused...

have you considered seeing someone for revision surgery consult...
like Dr Hey in Carolina...???
perhaps he could tell you if he thinks the lack of fusion in your lower
lumbar is contributing to your pain...or if that may have nothing to do
with what you are going thru...?
i was under the mis-impression that you had no pain at all before surgery....it does sounds as if you had quite a bit of pain pre surgery...
i hope you will be able to muster the strength and hope to find another
doctor, one who will be determined to make your life better and relieve
at least some of your current suffering!
16 doctors...????? SINCE you had the surgery....? or total from when you started
consulting with scoliosis doctors...????
have you seen Dr Hey...?? have you seen revision specialists...?????

jess...and Sparky

Confusedmom
04-13-2013, 11:40 PM
Sami,

Are you sure this pain is from your back? If it started pre-op, could it be something else? Fybromyalgia? Have you tried doctors that aren't in the scoli field? This may sound crazy, but even depression or low serotonin can cause unexplained physical pain. Have you tried taking antidepressants?

I agree with the others who say surgeons should not promise pain reduction. Mine did not. However, since you already are in significant pain, maybe it makes sense to seek a revision surgery if your scoliosis is the cause of your pain.

Dr. Lenke definitely does revision surgeries, and your curve doesn't need to be above 65 degrees or whatever the cutoff is for revisions. I think his assistant must have been confused when you spoke with her. Please call back or call Dr. Hey and get them to review your records. This is no way to live, and there are always possibilities for improvement. In the meantime, can you get yourself back on whatever meds you were taking post-op? Sounds like you need a pain management specialist for sure.

Hang in there and don't give up!!! I believe you will eventually get the answers you need.
Best wishes,
Evelyn

Sami
04-14-2013, 05:32 PM
Sami,

Are you sure this pain is from your back? If it started pre-op, could it be something else? Fybromyalgia? Have you tried doctors that aren't in the scoli field? This may sound crazy, but even depression or low serotonin can cause unexplained physical pain. Have you tried taking antidepressants?

I agree with the others who say surgeons should not promise pain reduction. Mine did not. However, since you already are in significant pain, maybe it makes sense to seek a revision surgery if your scoliosis is the cause of your pain.

Dr. Lenke definitely does revision surgeries, and your curve doesn't need to be above 65 degrees or whatever the cutoff is for revisions. I think his assistant must have been confused when you spoke with her. Please call back or call Dr. Hey and get them to review your records. This is no way to live, and there are always possibilities for improvement. In the meantime, can you get yourself back on whatever meds you were taking post-op? Sounds like you need a pain management specialist for sure.

Hang in there and don't give up!!! I believe you will eventually get the answers you need.
Best wishes,
Evelyn


16 doctors since the start of my pain 4.5 yrs ago. All kinds of secialists including psychitrist, neurologist, gastroenterologist, rheumatologist, 3 pain doctors, 2 local spine specialists and a top scoliosis surgeon at Baylor, Dr. Hostin.

jrnyc
04-14-2013, 09:24 PM
hi Sami
i sympathize with all the doctors you have gone to see....
BUT...going over your description, i do not see a revision specialist...
THAT is the doctor/surgeon you need NOW...
if you ask Linda Racine, forum moderator, i think she will tell you
that it is a special kind of surgeon who can deal with revision needed
by patients who have had surgery, and who still need more help...
some surgeons do not deal with such patients...
i believe Dr Hey is one of the ones who does...but he is certainly
not the only one...
if you tell Linda where you live, i am sure she can recommend one
to you....
please consider at least one consult with such a surgeon...
since you are already fused and it cannot be undone, why not
see a surgeon who may be able to provide help to you so you
can have a decent life...without constant pain...
if that means more fusion...would you consider it...? IF the doctor
thought your pain was connected to the part of your spine taking the
load of not being fused...???
have you read any of the revision threads here on forum to see which
people got help from a second surgery...????

wishing you less pain and some relief...
jess...and Sparky

rohrer01
04-15-2013, 12:09 AM
Sami, is your pain primarily in your back? Where exactly is it? Sometimes pain can radiate from your spine to other places in your body. But, as others have mentioned, it may be a totally unrelated condition. Sometimes I think that doctors look and see our scoliosis and freak out. Then they assume everything comes from our bad backs. I hope you get the help you so desperately need.

Sami
04-16-2013, 05:27 PM
hi Sami
i sympathize with all the doctors you have gone to see....
BUT...going over your description, i do not see a revision specialist...
THAT is the doctor/surgeon you need NOW...
if you ask Linda Racine, forum moderator, i think she will tell you
that it is a special kind of surgeon who can deal with revision needed
by patients who have had surgery, and who still need more help...
some surgeons do not deal with such patients...
i believe Dr Hey is one of the ones who does...but he is certainly
not the only one...
if you tell Linda where you live, i am sure she can recommend one
to you....
please consider at least one consult with such a surgeon...
since you are already fused and it cannot be undone, why not
see a surgeon who may be able to provide help to you so you
can have a decent life...without constant pain...
if that means more fusion...would you consider it...? IF the doctor
thought your pain was connected to the part of your spine taking the
load of not being fused...???
have you read any of the revision threads here on forum to see which
people got help from a second surgery...????

wishing you less pain and some relief...
jess...and Sparky


I'm scared to death of having more fusions. They can never be undone and they can never be simulated for a period of time with a brace or something to decide if they work. It will be another leap into the unknown. I'm ok with being worked on the fused part. I heard lots of rosy promises from a top doctor, but everything went wrong and now he has no answers. He is very famous for doing revision surgeries (Richard Hostin, Baylor, Plano, TX). Perhaps it is something else. I'm getting worse with the passage of time.

Sami
04-16-2013, 05:30 PM
Sami, is your pain primarily in your back? Where exactly is it? Sometimes pain can radiate from your spine to other places in your body. But, as others have mentioned, it may be a totally unrelated condition. Sometimes I think that doctors look and see our scoliosis and freak out. Then they assume everything comes from our bad backs. I hope you get the help you so desperately need.

But what? This is the million dollar question.

jrnyc
04-16-2013, 06:00 PM
i am so sorry you are getting worse...
i do not blame you for being afraid of more fusion...
but i do think a consult with a top surgeon...NOT the one you
already had surgery with...might give you an idea of what could be
causing you to get worse, especially since you are a couple of years
from your surgery....
you do not have to decide anything, just because you visit a surgeon...
you can decide to do nothing...
but personally, i think you need to investigate and get an opinion
or two, so that doctors have a chance to analyze what is going on...
we have all read on this forum how Dr Lenke and Dr Hey both see
patients who had other surgeons who were unable to help them...
i do believe every problem has a solution...
it is just a case of who is skilled enough to figure it out.
just because your surgeon can't help you, doesn't mean no one else
could.

hope you find some relief...
jess...and Sparky

susancook
04-16-2013, 06:18 PM
Sami, my heart goes out to you. There seem to be three groups of people postoperative: those who are worse with pain, those who are the same with pain, and those who have varying degrees of improvement from better to entirely gone.

My surgeon said that she probably couldn't help my R sciatic pain. My son took notes during the doctor visit and I did not hear that....so, I sent a note back to her when i read my son's notes of the visit and asked her if she had actually said that she probably could not fix my pain. She affirmed that she had said that. I was really bummed and that was one of the big reasons that I was having the surgery done and a previous doctor had led me to believe that the surgery WOULD help.

I am also in therapy for depression, some from having scoliosis and pain. My therapist said that at every conference that he goes to on surgery relieving pain, he says that the doctors are told NOT to say the surgery will relieve the pain.

I do not know who or which doctor might be able to help you, but don't give up. Although I do not know then but only from the blog, I would suggest Dr. Lenke or Dr. Hey. Ask specific notes on their experience in dealing with patients like you and what they think that they can do for you.

You will be in my thoughts and prayers. Let us know how you are doing.
Susan

ShariMSU
05-02-2013, 08:00 AM
Hi Sami - not sure if this will help....I am 3 years post op and feel fantastic. Fused t2-L2. Since about the one year mark I have done body work 3-4 times a month. It is mostly therapeutic massage and muscle work. She is a natural and homeopathic body worker. I have a life with more energy and less pain than per-surgery, i would say minimal pain, and I attribute it to great surgeon and post-surgery body work. It was 2 full years before I felt really good. Since our muscles have memory retraining them is key as they have new positions and work differently after surgery. Just a thought. I am so sorry you are struggling.

jrnyc
05-02-2013, 08:56 AM
hi Sami
sending a PM...
jess