stffness and bloating 3 years post surgery

[Sami]

3 years post surgery with Dr. Richard Hostin at Baylor scoliosis center (fused t4-L1). I have stiffness in the muscles of my back, legs, and abs. My abdomen is rock hard and looks like I am 4-5 mths pregnant (I am thin). Saw all kind of specialists. Traveled to Kansas city to see a neuromuscular specialist. EmG is normal. Blood test for stiff person disease. I have been suffering for 5 years. Surgery made all the symptoms I suffered from for 2 years, including inability to sit and stand worse and added more problems. Nobody can tell me what is wrong. Each of the 10 physical therapists I saw said something different and all failed to put a dent in my problem. I am 48 and raising children. Life tastes like bitter saw dust. I can't believe how so many people report all these wonderful results after surgery when this very famous doctor cannot give any explanations to my problems. He who before surgery had an answer to every question. Now he mumbles, stutters and gives me foolish looks. Where did the genius of yesteryear go? He is so good at promoting his miracles on TV stations and the pros of the surgery to potential patients, but never the cons. Now we suffer and wait for death to relieve our suffering.

[jrnyc]

Sami
i am so sorry...i read your post and wanted to weep for you...
i have not had surgery...though it has been recommended to me...
your story is a nitemare i am afraid of..
even with a top surgeon, there is no guarantee...
BUT....i want to ask if you have tried contacting Dr Hey...?
i believe he is in North Carolina...i think...
he seems to want to help patients...including patients with
big post surgery problems...
also...i am wondering if you have tried contacting Dr Lenke's office...??

i am not trying to upset you but trying to suggest there is a surgeon
out there for you, who will try to help...who will not see your case
as final...but as in process towards a better result...

there has to be a surgeon who is willing to help you...
no doctor has the right to give up...

thoughts and prayers for you to find that surgeon...and NOT give up.

jess

[LindaRacine]

Hi Sami...

I'm really sorry you've had such a bad outcome. It's not uncommon for a major surgery to cause a flare in an underlying condition. It's important to remember that your doctor is an orthopaedic surgeon. While he hopefully knows a lot about the spine and other bones of the body, he is not a specialist in other medical problems. What you have is a medical complication. I hope you find someone who can help. In the meantime, if you've truly come to believe that death is the only way to get better, I'd like to encourage you to see a psychologist. You may never be completely well, but there are things that can be done to make it easier to cope.

For everyone else, this is a classic example of why I think it's ultra important to make the decision to have scoliosis surgery only when there is truly nothing else that can help. (Not that Sami didn't make an informed decision.) Over the years I've known dozens of people whom I believe made the surgery decision when they should have waited. Scoliosis surgery, or any other major surgery, comes with huge risks.

Regards,
Linda

[susancook]

Sami, I am very worried about you. You are a mom with kids to help grow and love and grand kids to love and hold, yet there appears to me to be an encryption in your story with your words of "life tastes like bitter dust" and waiting to die for relief that has says to me that you may have some very dark thoughts and need some professional help with counseling. Please consider it. You have a future ahead of you in your children and grand kids and there is help out there both with counseling and medical or further orthopedic spine doctors.

Sorry, I cannot remember, how far out are you from surgery?

I went into counseling before surgery and am still going for reasons other than the surgery, but it was helpful when I hit the wall on some postop problems, that I had a professional to turn to. Consider it.

Also, sounds like you need a new perspective from another spine surgeon as in reading what you wrote, he seems to be blowing you off. Consider that. Also, like Linda said, you may have underlying medical problems.

What's going on with your abdomen? Did you have an ALIF?

We are all here to help you. Please remember that. You are not alone. Yes, there are many posts from people that are happy after surgery, but there are others that were happy after revisions or with time. I am not saying that you need a revision, just a thought. Almost no one goes through the surgery without some kind of problem either big or small. We were all broken before the surgery, sometimes it takes a while for thing to settle out or to figure out what is wrong. Do not give up.

I will send you a PM with my phone number and email. If you want to talk or correspond via email, I and others are willing to do that. I am not a counselor, but am a medical professional and want to reach out to you if you want.

Please continue to post here and let us know how you are doing. We care.

A gentle hug to you, Susan

[Sami]

Hi to all,

I was having some minor pain between my shoulders. To avoid an unjustified epidural steroid shot, I sought osteopathic manipulation by a doctor called Saskia Lydle Viera. 3 days after her manipulation, I woke up in the middle of the night with severe diffuse pain all over my back that felt like advanced labor. The pain lasted for some time then became bearable. When I woke up in the morning I could not sit or stand for more than 2 minutes and had to keep on walking to control the pain. When I called for guidance, she threw a fit and told me I always had lower back pain (wrong). I suffered for 2 years with moving pain in the back and left leg and inability to sit or stand. I saw many specialists and did all kinds of steroid shots, images and saw 7 physical therapists. Nothing worked. The big bad wolf was the curve. They filled my head with curve, curve, curve....until I did the surgery. I read 2 books about scoliosis. Both underscored the benefits without mentioning any cons. If the pain was not due to scoliosis, the pain would stay the same. What's to lose? The price was 8 weeks of suffering while you recover then you either get better (50-80%) or stay the same. Just choose a surgeon who does lots of scoliosis surgeries. The surgery failed. The surgeon is baffled and everybody else is chanting the fusion chant. Of course, despite all the tests, everything seems normal. As for my abdomen everybody brushes it off, blaming it on the fusion. I was referred to a counselor who specializes in chronic pain, but my insurance did not cover him. I have been dumping money like a mad woman for the past 5 years, but now I have to be careful. After all I am not Bill Gates.

[jrnyc]

hi Sami
i would humbly suggest you see another scoli surgeon for a consultation...
i looked up your surgeon online...i was not impressed...and to me, in
my opinion, he seemed a little arrogant...
i want to suggest another surgeon...a good one...so you can get
a different doctor's point of view...the view of a surgeon who does
scoli fusions successfully and might have an idea or two of what might
help you...IF you can find a top one that your insurance covers, i think
it would be well worth it...

also, as a licensed social worker, i have seen my share of depression...
please...there will be a social worker, psychologist, psychiatrist
somewhere who DOES take your insurance...whether they specialize
in chronic pain or not...i think it vitally important that you have a
counselor...even while you might look for one who does specialize
in chronic pain...ALSO....you did not mention whether you are on
any meds to help you deal with the depression...
this is not a judgement...this is a suggestion...i think anyone would
be depressed to be in pain all the time...

and...i know you are now in chronic pain...but i am hoping that for you,
it will end up to be temporary, once you can find a surgeon who can
suggest answers...maybe surgery revision, maybe NOT...
i do not know...
i DO believe that EVERY problem has a solution...we just do not always
see the solution...but it is there...and someone will see it for you...
if you don't give up trying to find the right person to help.
i am so sorry for all you have been going thru for so long.

jess...and Sparky

[susancook]

Hi to all,

I was having some minor pain between my shoulders. To avoid an unjustified epidural steroid shot, I sought osteopathic manipulation by a doctor called Saskia Lydle Viera. 3 days after her manipulation, I woke up in the middle of the night with severe diffuse pain all over my back that felt like advanced labor. The pain lasted for some time then became bearable. When I woke up in the morning I could not sit or stand for more than 2 minutes and had to keep on walking to control the pain. When I called for guidance, she threw a fit and told me I always had lower back pain (wrong). I suffered for 2 years with moving pain in the back and left leg and inability to sit or stand. I saw many specialists and did all kinds of steroid shots, images and saw 7 physical therapists. Nothing worked. The big bad wolf was the curve. They filled my head with curve, curve, curve....until I did the surgery. I read 2 books about scoliosis. Both underscored the benefits without mentioning any cons. If the pain was not due to scoliosis, the pain would stay the same. What's to lose? The price was 8 weeks of suffering while you recover then you either get better (50-80%) or stay the same. Just choose a surgeon who does lots of scoliosis surgeries. The surgery failed. The surgeon is baffled and everybody else is chanting the fusion chant. Of course, despite all the tests, everything seems normal. As for my abdomen everybody brushes it off, blaming it on the fusion. I was referred to a counselor who specializes in chronic pain, but my insurance did not cover him. I have been dumping money like a mad woman for the past 5 years, but now I have to be careful. After all I am not Bill Gates.

There are varied opinions about manipulations, that is the kind that chiropractors do. I do not know what kind of manipulations osteopathic doctors perform. Unfortunately, there is very little evidence based science behind what they do. I have never heard of anyone going for manipulations with a fusion, and my guess would be that it might not be a good idea as I cannot see what can be manipulated, in fact, it might hurt your fusion. Since I am not sure exactly what was done and am NOT a scoliosis surgeon, I cannot for certain tell you if it is OK or not, I just would say that you might want to check with your spine surgeon before you go again for any manipulations.

I wish that I had suggestions that would help you with your pain, other than I believe you when you say that you are in pain and I hope that you find an SRS MD that can give you a second opinion about your back. I suggest that you might want to see a doctor that is associated with a university teaching hospital. On counselors, there must be someone that you could see that is covered by your insurance. Keep trying. Maybe you have a good friend that can help you find someone on your insurance if that is too frustrating for you. Call your insurance company and ask them who is a counselor, psychologist, psychiatrist, social worker in your area. I think that Jess said a similar statement.

I hope that you find help. Susan

[LindaRacine]

hi Sami
i would humbly suggest you see another scoli surgeon for a consultation...
i looked up your surgeon online...i was not impressed...and to me, in
my opinion, he seemed a little arrogant...
i want to suggest another surgeon...a good one...so you can get
a different doctor's point of view...the view of a surgeon who does
scoli fusions successfully and might have an idea or two of what might
help you...IF you can find a top one that your insurance covers, i think
it would be well worth it...

also, as a licensed social worker, i have seen my share of depression...
please...there will be a social worker, psychologist, psychiatrist
somewhere who DOES take your insurance...whether they specialize
in chronic pain or not...i think it vitally important that you have a
counselor...even while you might look for one who does specialize
in chronic pain...ALSO....you did not mention whether you are on
any meds to help you deal with the depression...
this is not a judgement...this is a suggestion...i think anyone would
be depressed to be in pain all the time...

and...i know you are now in chronic pain...but i am hoping that for you,
it will end up to be temporary, once you can find a surgeon who can
suggest answers...maybe surgery revision, maybe NOT...
i do not know...
i DO believe that EVERY problem has a solution...we just do not always
see the solution...but it is there...and someone will see it for you...
if you don't give up trying to find the right person to help.
i am so sorry for all you have been going thru for so long.

jess...and Sparky

I honestly don't think seeing another scoliosis specialist will be helpful. At best, they will refer Sami to someone else. At worst, they'll say they can't help. They just don't have a clue what to do with rare medical complications.

--Linda

[jrnyc]

i think a medical condition of any kind that is there prior to any
major surgery can be made worse by that surgery...
that said...IF insurance pays for it...i do not see why a visit to
another scoli surgeon, for a consult, could not help...
why have no specialists had answers as to what is causing what...??

Sami...do you think a consult with a different scoli surgeon might be
helpful for you...??

jess..and Sparky

[titaniumed]

Sami, I would see a psychiatrist.

I know someone with a rare disease where no-one knew what to do.... This psychiatrist worked till hell froze over trying to find answers, and since they are MD’s, they have an advantage and can get much farther than most. I think your situation could be a complication, or a completely different disorder. I would set this up and start seeing a psychiatrist so he can get the whole story over several sessions. He or she will take the time to figure this out for you. I have an increased respect for psychiatry now since I saw what this guy did, with impossible odds. My jaw is still agape.

You were sent to a neuromuscular doctor because someone suspected something. Just because nothing happened doesn’t mean that this is off track, these things take time, the right doctors and the right tests need to be done.

While it can be easy to blame this on your surgery, it could be a completely separate issue having nothing to do with your scoliosis.

Hang in there
Ed

[Pooka1]

I honestly don't think seeing another scoliosis specialist will be helpful. At best, they will refer Sami to someone else. At worst, they'll say they can't help. They just don't have a clue what to do with rare medical complications.

--Linda

I agree with this. The people who specialize in rare conditions is the Mayo Clinic as far as I know. They will only take very unusual cases. I think these conditions that flair after major surgery maybe be in their own group such that it can become a medical field. Maybe the prevalence of certain rare disorders in the post op population is higher than in the general population. If so this should be a medical field.

[susancook]

I did not think of it, but a work up at the Mayo Clinic if it is covered by your insurance, Sami would be great! The are holistic and might be able to look at inter systems problems. They also have multi-disciplinary team that actually talk to each other. My sister had a work up, but did not have to go all of the way to Minnesota where they are located I do not think, and she stayed for maybe a week. It was a great help to her. I will ask her where she went. They must have satellite clinics.

Sami, please talk to some sort of counseling help that is covered by your insurance.

Like Ed says, Hang in there, life will get better. Your family needs you. People on this forum care about you.

Hugs, Susan

[jackieg412]

Sami,
Do keep asking questions. You are very needed at home yet. There is help available. Mayo or a clinic like that can help. Even to rule out "what it isn't". I have to stay standing alot--sitting is too hard for me.So my legs get stiff at times--I also do not always like the curve that was created in the lumbar. I never had an issue with the stomach until this curve was created. I know it is to balance the spine--but I don't have to like it.
You keep looking until you can find someone to help. Even if everything is OK--it is still bothering you. Someone will help you.
Wishing you the best,
Jackie

[Sami]

Did you develop a lumbar curve and then your stomach protruded and became stiff after you had a scoliosis surgery?

[Sami]

Thank you for your concern and support.

I am considering seeing another specialist in scoliosis, but I'm afraid he might have nothing to offer or suggest another surgery that will turn out to be another shot in the dark.

Mayo clinic sounds like a possibility.

It is all that muscle tightness and the development of a stiff and protruding belly 2.5 yrs after surgery that is mind boggling me and I'm trying to see if anybody who had a scoliosis surgery developed such symptoms.