Sacro-Iiac experts

[Guest guest]

I was wondering who the " experts " would be that have alot experience

with the sacro-iliac joint?? Anyone that knows alot about S-I pain?? I

have ALOT of S-I pain and issues. The pain is very, very bad.

Carol Vaughan

[Guest guest]

Hi Carol,

Sorry for the delayed reply, but I've been out of town, needed time to catch up with posts, got sick, blah, blah.

I am far from a sacroiliac joint "expert", but I have had Sacroiliac Joint ("SI Joint") issues for a few years now. I am almost 11 years post revision surgery with Dr. Boachie, and I'm 67 years old. I think it was about 6 years ago that I first started having SI Joint pain, but it took a couple of years to get a proper diagnosis. I was warned to be careful of my hip and knee joints following revision because they would be carrying the stress that my spine handled pre-revision. No one mentioned the SI Joint. When I first had symptoms, I was offered x-rays of my hips (normal) and then began a guessing game and ended with no explanation of my pain from Dr. Boachie, and I was told to see a pain doc. I decided to see a local ortho first, because I had moved far from Dr. Boachie and wanted someone local in case of an emergency. This local ortho ordered a CT of my spine (first ever for me), which showed perfect surgical results, but also showed severely deteriorated SI Joints. So much so, that on the right side, most of the SI Joint didn't even show up on the CT, sort of like it disintegrated. Finally, a reason for my pain. In those days, just about 6years ago, I could find nothing on the internet about SI Joint problems in scoli patients. The problem is now first being generally recognized. I sent the films to Dr. Boachie. He and the local ortho both said that only a fusion of the SI Joints would help, but both said no one would recommend fusing SI Joints in a scoli patient with a long spinal fusion. (As my local otho said, "Then you really wouldn't be able to move.") So, the only thing left for me is pain relief.

After a couple of years with inadequate help for my pain, I saw Dr. Bridwell for a consultation. He took his own set of x-rays and reviewed my CT films. He agreed that the surgery results looked perfect and my SI Joints are a mess and offered only pain relief. He also thought that the burning pain I have is probably from Arachnoiditis and agreed that I have some nerve damage causing balance issues and that some of my pain is a result of over use of muscles and ligaments. I also have issues with scar tissue.

My third pain doc understood that injections don't help me much because I have multiple reasons for my pain, so he put me on Methadone, 5 mg 3xday, and sent me for Acupressure and Cranial Sacral therapies. As a result, I feel better now than I have felt in years and I live a relatively full life with minimal pain...as long as I don't do "too much".

Bending is a no-no, and standing in place is almost as bad. Sitting too long and walking too long are also issues. But, I have no trouble sitting at the computer for over an hour, can sit through a long movie or a long dinner party, can take a walk for an hour or more, and so on. I just can't keep going from morning till night like I used to, and I need to vary my sitting, walking, standing thoroughout the day. Then again, so do my "normal" friends my age.

I get the feeling that some of you think that revision surgery is unsuccessful unless you come through it feeling perfectly fine, meaning pain free all the time. I disagree. Revision surgery is so extensive and involves not just the spine, but causes certain muscles and ligaments to atrophy and others to be overused for the rest of your life. And there is the resultant stress on upper vertebrae and joints below the fusion. If, in fact, you wind up pain free forever, you are very lucky. If you have pain issues post revision, there is help out there, albeit sometimes hard to find. I consider my revision surgery to be a success and I would recommend Dr. Boachie to anyone.

Sorry this is so long.

Bonnie

[Guest guest]

Dear Bonnie and Carol,

Wow Bonnie, and Bravo for a well written and to the point post. I'm so glad we have you here to be a living example of what it like to live in the post revision body, years down the road. Lessons learned by me from you is that a sucessful surgery can be had, but issues can show up below and above a long fusion, and there are ways to deal with them and get as much quality of life as possible. Pacing ones self, is also a lesson I have learned from you, that even at our best, respecting what has been done to us surgically will serve you best, non of us are WonderWoman, and it's okay not to be. I'm so glad you have found a way to have a quality of life that serves you well, and finds you enjoying your retirement years.

Carol hopefully you can get to a good pain mgt team and get some relief. Also look into the therapies that Bonnie listed, I've seen first hand how devoted she is to her exercises, as they keep her going and moving. I wish all of this had been easier for you, boy you sure have been through a lot, but please don't get defeated, answers are out there. Pain can sure color ones world and outlook, but look at how strong you are, you have came back so many times, and though it's hard, saddle up for this next battle in your scoli war, and armed with what Bonnie has said find your next stage in your care. I'm so amazed by you!

Colorado Springs

[ ] Re:Sacro-Iiac "experts"

Hi Carol,

Sorry for the delayed reply, but I've been out of town, needed time to catch up with posts, got sick, blah, blah.

I am far from a sacroiliac joint "expert", but I have had Sacroiliac Joint ("SI Joint") issues for a few years now. I am almost 11 years post revision surgery with Dr. Boachie, and I'm 67 years old. I think it was about 6 years ago that I first started having SI Joint pain, but it took a couple of years to get a proper diagnosis. I was warned to be careful of my hip and knee joints following revision because they would be carrying the stress that my spine handled pre-revision. No one mentioned the SI Joint. When I first had symptoms, I was offered x-rays of my hips (normal) and then began a guessing game and ended with no explanation of my pain from Dr. Boachie, and I was told to see a pain doc. I decided to see a local ortho first, because I had moved far from Dr. Boachie and wanted someone local in case of an emergency. This local ortho ordered a CT of my spine (first ever for me), which showed perfect surgical results, but also showed severely deteriorated SI Joints. So much so, that on the right side, most of the SI Joint didn't even show up on the CT, sort of like it disintegrated. Finally, a reason for my pain. In those days, just about 6years ago, I could find nothing on the internet about SI Joint problems in scoli patients. The problem is now first being generally recognized. I sent the films to Dr. Boachie. He and the local ortho both said that only a fusion of the SI Joints would help, but both said no one would recommend fusing SI Joints in a scoli patient with a long spinal fusion. (As my local otho said, "Then you really wouldn't be able to move.") So, the only thing left for me is pain relief.

After a couple of years with inadequate help for my pain, I saw Dr. Bridwell for a consultation. He took his own set of x-rays and reviewed my CT films. He agreed that the surgery results looked perfect and my SI Joints are a mess and offered only pain relief. He also thought that the burning pain I have is probably from Arachnoiditis and agreed that I have some nerve damage causing balance issues and that some of my pain is a result of over use of muscles and ligaments. I also have issues with scar tissue.

My third pain doc understood that injections don't help me much because I have multiple reasons for my pain, so he put me on Methadone, 5 mg 3xday, and sent me for Acupressure and Cranial Sacral therapies. As a result, I feel better now than I have felt in years and I live a relatively full life with minimal pain...as long as I don't do "too much".

Bending is a no-no, and standing in place is almost as bad. Sitting too long and walking too long are also issues. But, I have no trouble sitting at the computer for over an hour, can sit through a long movie or a long dinner party, can take a walk for an hour or more, and so on. I just can't keep going from morning till night like I used to, and I need to vary my sitting, walking, standing thoroughout the day. Then again, so do my "normal" friends my age.

I get the feeling that some of you think that revision surgery is unsuccessful unless you come through it feeling perfectly fine, meaning pain free all the time. I disagree. Revision surgery is so extensive and involves not just the spine, but causes certain muscles and ligaments to atrophy and others to be overused for the rest of your life. And there is the resultant stress on upper vertebrae and joints below the fusion. If, in fact, you wind up pain free forever, you are very lucky. If you have pain issues post revision, there is help out there, albeit sometimes hard to find. I consider my revision surgery to be a success and I would recommend Dr. Boachie to anyone.

Sorry this is so long.

Bonnie

[Guest guest]

Bonnie,

Was it about 5 years after revision that you started experiencing hip pain then? I'm just curious as to the time line so I know when I might start feeling affects in other areas. Is anyone else 5 years out from revision? Have you noticed problems with hips or knees? Since revision my biggest problem has been my cervical/upper thoracic spine.

Peggy

[ ] Re:Sacro-Iiac "experts"

Hi Carol,

Sorry for the delayed reply, but I've been out of town, needed time to catch up with posts, got sick, blah, blah.

I am far from a sacroiliac joint "expert", but I have had Sacroiliac Joint ("SI Joint") issues for a few years now. I am almost 11 years post revision surgery with Dr. Boachie, and I'm 67 years old. I think it was about 6 years ago that I first started having SI Joint pain, but it took a couple of years to get a proper diagnosis. I was warned to be careful of my hip and knee joints following revision because they would be carrying the stress that my spine handled pre-revision. No one mentioned the SI Joint. When I first had symptoms, I was offered x-rays of my hips (normal) and then began a guessing game and ended with no explanation of my pain from Dr. Boachie, and I was told to see a pain doc. I decided to see a local ortho first, because I had moved far from Dr. Boachie and wanted someone local in case of an emergency. This local ortho ordered a CT of my spine (first ever for me), which showed perfect surgical results, but also showed severely deteriorated SI Joints. So much so, that on the right side, most of the SI Joint didn't even show up on the CT, sort of like it disintegrated. Finally, a reason for my pain. In those days, just about 6years ago, I could find nothing on the internet about SI Joint problems in scoli patients. The problem is now first being generally recognized. I sent the films to Dr. Boachie. He and the local ortho both said that only a fusion of the SI Joints would help, but both said no one would recommend fusing SI Joints in a scoli patient with a long spinal fusion. (As my local otho said, "Then you really wouldn't be able to move.") So, the only thing left for me is pain relief.

After a couple of years with inadequate help for my pain, I saw Dr. Bridwell for a consultation. He took his own set of x-rays and reviewed my CT films. He agreed that the surgery results looked perfect and my SI Joints are a mess and offered only pain relief. He also thought that the burning pain I have is probably from Arachnoiditis and agreed that I have some nerve damage causing balance issues and that some of my pain is a result of over use of muscles and ligaments. I also have issues with scar tissue.

My third pain doc understood that injections don't help me much because I have multiple reasons for my pain, so he put me on Methadone, 5 mg 3xday, and sent me for Acupressure and Cranial Sacral therapies. As a result, I feel better now than I have felt in years and I live a relatively full life with minimal pain...as long as I don't do "too much".

Bending is a no-no, and standing in place is almost as bad. Sitting too long and walking too long are also issues. But, I have no trouble sitting at the computer for over an hour, can sit through a long movie or a long dinner party, can take a walk for an hour or more, and so on. I just can't keep going from morning till night like I used to, and I need to vary my sitting, walking, standing thoroughout the day. Then again, so do my "normal" friends my age.

I get the feeling that some of you think that revision surgery is unsuccessful unless you come through it feeling perfectly fine, meaning pain free all the time. I disagree. Revision surgery is so extensive and involves not just the spine, but causes certain muscles and ligaments to atrophy and others to be overused for the rest of your life. And there is the resultant stress on upper vertebrae and joints below the fusion. If, in fact, you wind up pain free forever, you are very lucky. If you have pain issues post revision, there is help out there, albeit sometimes hard to find. I consider my revision surgery to be a success and I would recommend Dr. Boachie to anyone.

Sorry this is so long.

Bonnie

[Guest guest]

Peggy, is also more than 5 years out.

Sharon

Peggy Greene wrote:

Bonnie,

Was it about 5

years after revision that you started experiencing hip pain then?  I'm

just curious as to the time line so I know when I might start feeling

affects in other areas.  Is anyone else 5 years out from revision? 

Have you noticed problems with hips or knees?  Since revision my

biggest problem has been my cervical/upper thoracic spine.

 

Peggy

 

-----

Original Message -----

From:

Bonnie

To:

Sent:

Wednesday, October 15, 2008 12:05 PM

Subject:

[ ] Re:Sacro-Iiac "experts"

Hi Carol,

 

Sorry for the delayed reply, but I've been out of town, needed

time to catch up with posts, got sick, blah, blah.

 

I am far from a sacroiliac joint "expert", but I have had

Sacroiliac Joint ("SI Joint") issues for a few years now.  I am almost

11 years post revision surgery with Dr. Boachie, and I'm 67 years old. 

I think it was about 6 years ago that I first started having SI Joint

pain, but it took a couple of years to get a proper diagnosis.   I was

warned to be careful of my hip and knee joints following revision

because they would be carrying the stress that my spine handled

pre-revision.  No one mentioned the SI Joint.  When I first had

symptoms, I was offered x-rays of my hips (normal) and then began a

guessing game and ended with no explanation of my pain from Dr.

Boachie, and I was told to see a pain doc.  I decided to see a local

ortho first, because I had moved far from Dr. Boachie and wanted

someone local in case of an emergency.  This local ortho ordered a CT

of my spine (first ever for me), which showed perfect surgical results,

but also showed severely deteriorated SI Joints.  So much so, that on

the right side, most of the SI Joint didn't even show up on the CT,

sort of like it disintegrated.  Finally, a reason for my pain.  In

those days, just about 6years ago, I could find nothing on the internet

about SI Joint problems in scoli patients.  The problem is now first

being generally recognized.  I sent the films to Dr. Boachie.  He and

the local ortho both said that only a fusion of the SI Joints would

help, but both said no one would recommend fusing SI Joints in a scoli

patient with a long spinal fusion.  (As my local otho said, "Then you really

wouldn't be able to move.")  So, the only thing left for me is pain

relief. 

 

After a couple of years with inadequate help for my pain, I

saw Dr. Bridwell for a consultation.  He took his own set of x-rays and

reviewed my CT films.  He agreed that the surgery results looked

perfect and my SI Joints are a mess and offered only pain relief.  He

also thought that the burning pain I have is probably from

Arachnoiditis and agreed that I have some nerve damage causing balance

issues and that some of my pain is a result of over use of muscles and

ligaments.  I also have issues with scar tissue.

 

My third pain doc understood that injections don't help me

much because I have multiple reasons for my pain, so he put me on

Methadone, 5 mg 3xday, and sent me for Acupressure and Cranial Sacral

therapies.  As a result, I feel better now than I have felt in years

and I live a relatively full life with minimal pain...as long as I

don't do "too much". 

Bending is a no-no, and standing in  place is almost as bad. 

Sitting too long and walking too long are also issues.  But, I have no

trouble sitting at the computer for over an hour, can sit through a

long movie or a long dinner party, can take a walk for an hour or more,

and so on.  I just can't keep going from morning till night like I used

to, and I need to vary my sitting, walking, standing thoroughout the

day.  Then again, so do my "normal" friends my age. 

 

I get the feeling that some of you think that revision surgery

is unsuccessful unless you come through it feeling perfectly fine,

meaning pain free all the time.  I disagree.  Revision surgery is so

extensive and involves not just the spine, but causes certain muscles

and ligaments to atrophy and others to be overused for the rest of your

life.  And there is the resultant stress on upper vertebrae and joints

below the fusion.  If, in fact, you wind up pain free forever, you are

very lucky.  If you have pain issues post revision, there is help out

there, albeit sometimes hard to find.  I consider my revision surgery

to be a success and I would recommend Dr. Boachie to anyone. 

 

Sorry this is so long.

 

Bonnie