Before surgery it was the scoliosis, after surgery it is the fusion

[Sami]

16 doctors

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]

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]

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]

Scared

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]

great point

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]

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]

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]

Body work

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]

hi Sami
sending a PM...
jess