Sage and others............SI Joint Question

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Hey everyone...missed you all.
I am recoverying from the SI joint fusion...and am soooooo happy to let you know that the surgery seems to be working!!! I just posted a long reply on Vicky's post....tried to explain about the surgery etc. The Dr. I went to is an ortho. who specializes in the SI joint...he is in Jacksonville FL and does fix people from all over the country. Frosty is the one who gave me his name...thank you Lisa!!!!! It is tough surgery...really...but we are strong and I am an example of surviving this surgery!!! (12 week and up recovery..I am at week 8 and just starting to walk with walker!!!!) Remeraber when I wanted to cut off my little toe...well the L4/5 was being irritated by the SI joint somehow.....NO MORE PAIN!!!! I keep hearing about the low success rates...well not from my Dr....and he was good about keeping me out of post op. pain... They did a CT with contrast to discover the ruptured SI joint...the contrast leaks out....and that proves the problem. I also had 2 SI joint blocks...they were nice...this is all part of the diagnostic for SI joint disruption. My Dr. said that most people live for years...20/30/10 and I am at the 5 year mark....they undergo lots of other surgery before and if they get diagnosed for this. He lectures around the world...but for some reason the other DRs. think this is an interesting cause of pain...the durab so and so's... The Mayo did nothing for me...other than injections and ablation of my L5/S1 nerve...which did nothing but cause major pain. If nothing else is working...gosh...as tough as this is...I guess I'd have to do this again. Make sure you have a good support system...cause you need it....but the end result is soooooooo wonderful....not pain!!!!
I am sorry my frienRAB that I haven't been around lately....just trying to recover...and sitting is a bit tough!! (makes my low back/butt ache!!)...
I hope my post helps you all...miss you....take care!!

Leslie (Sage!!)
 
paula, who would be qualified to say if this would be causing the pain in the low back and or can they tell by the examination? I can almost relate to what you stated here!
Monkey
 
Hey Monkey. Celebrex is an arthritis medication so I don't know if it will work for dysfunction. I guess if the dysfunction causes inflammation it may help.

Hey Leslie, how are you feeling??
 
Hmmmm, interesting. My SI joint problems tend to effect my lower half rather than my back itself. You can see either specialist but not all of the back surgeons will do surgery on the SI joint. I have actually been referred to one that does laser surgery/fusions. Wish I had heard of them first!!! Anyway, my pain management doctor was the one who diagnosed me after a plain old Xray and the surgeon confirmed it. Although, the mayo doc wouldn't even touch the problem. I have been getting deep tissue massages and the worst of my pain is gone for now. It is so strange but I will take it! MRI's still do not show the SI joint problem. I think it is because they prop your legs up to try to make you comfy and it takes the pressure off of the problem. I'll keep my toes crossed for you diet. I've missed you!!

I'm sorry I have been away so long. I went back to work and it has been very hard. Then my computer crashed-sort of and I just got it working longer than 1 hour again. (router issues)

Love,
Lisa
 
Thank you everyone.

Lisa, interesting about the massage. I am thinking about giving that a whirl. I am willing to almost try anything at this point.

Apparently the si joint can cause inflammation in the upper and lower back.

I am posting more on the chronic pain mgmt board these days since my problems are more permanent. Today I saw a new pain mgmt doctor and won't go into my saga here but finally my pain is being managed. She too feels that I might have additional problems and has ordered a MRI cervical to sacral and a CT scan then from there we will decide the next course of action.

Anyway thank you and I will post an update after these tests are completed.
 
Does one see a spinal surgeon or a orthopedic doctor to be evaluated for this?

Thanks
Pepper
 
Yeah Leslie! Great to see you and so glad to hear how well this is going!

How, hadn't realized you'd been to the Mayo before this!

Paula
 
hey Paula...
how you doing? Yeah, went to the Mayo for over a year...obviously they didn't do too much to help...they were looking at the wrong diagnosis!! BUT, they sure charged enough $$$...

Take care..

Leslie
 
Paula, thanks! The specialist stated i have some inflammation but only a tiny bit but the extent of the pain i have would or shouldn't be from that little of inflammation, but who knows everybody is different!
Take care, Mel
 
Pepper, it is SO good to hear a doctor ordering both an MRI and a CT Scan! I think you found a really good one!

From my experience I have learned the MRI is not the be-all end-all of imaging, as so many doctors seem to think. My severe back problems, including arthritis and a collapsed disc, were clear as day on a CT scan, and not there at all on an MRI. There was a few months delay between doing my CT Scan and an MRI because I had an IUD that had to be removed (and it was problematic.) My neurosurgeon was talking fusion, treating me with PT, doing this and that...and as soon as he saw the MRI he handed me my films, told me there was little he could do to help me because there wasn't much wrong, and sent me on my way.

I'm not exaggerating. This is exactly what happened. He told me to exercise and lose weight and said goodbye. When I looked at him in disbelief and reminded him I couldn't even do the mild PT bending exercises without major body spasms, he gave me the name of a pain management doctor.

When I got over my shock I decided to get a second opinion and this time switched to an orthopedic surgeon from a highly recommended group and with fantastic credentials. You can not just make an appointment with this doctor. You drop off your films and if he feels he can help you an appointment is set up. As my nurses now tell me, he will only see the worst cases because he is so much in demand. Within 2 weeks I had a letter with an appointment. Within 5 weeks of my appointment I had surgery.

Now this is a huge difference from the first doctor's attitude. According to the second doctor, you must look at both types of images because the MRI is great for nerve impingement and soft tissue issues but not particularly good for skeletal issues. That's where the CT Scan is superior - including imaging arthritis. In my case, I did not need a 2 level fusion because of nerve impingement, I needed it because the collapsed disc resulted in L5 rubbing on S1 and setting up so much inflammation it was as painful as nerve impingement. What's worse, it's so diffuse that you have symptoms in a variety of different places instead of focused on one nerve. There were times I swore I was falling apart physically. One day my foot would be hurting so badly I could barely walk, the next day it would be fine. One day I thought I needed a right hip replacement, the next day it was the left hip. Pelvic girdle spasms all the time, especially when first waking. I'd have to get up 2 1/2 hours before leaving for work so I could work past the early morning spasms. In the last 4 weeks before surgery I could have sworn I ruptured L4/L5, the sciatica pain was so horrible.

When he went in there, nope, I hadn't. I was all inflammation from the rubbing vertebrae. And even better - 7 weeks post op all that pain is gone. It's amazing.

I guess what I'm trying to say is, I am really really pleased this doctor has the understanding that both imaging systems are needed for a full diagnosis. I wish you luck and hope this is the start of some relief for you.

Paula
 
I think you would want to consult with a fellowship trained orthopedic spinal specialist. There are some clinics around the country that specifically deal with SI joint dysfunction. Many specialists will not perform SI joint fusions, but they would be qualified to diagnose whether the SI joint is the problem, the cause of the pain, etc.
 
Hey Leslie it is so good to hear from you and it sounRAB like you are doing so much better. On the walker now and that is great. You sure have been through a lot and finally getting better. Keep up the good work and please let us know how you are doing.

Take care
Linda:angel:
 
paula:wave: does the Celebrex work for only SI arthritis or does it work for SI dysfunction as well? Also how is it working for you now?
Take care, Monkey
 
Thank you Paula. This morning was amazing. I have not had this much pain relief since my surgery revision surgery in Noveraber.

I am glad that you surgery is working out for you. Please, I say this to anyone listen to your doctors, do exactly as they say, do not push yourself, it is not worth it. It will only set you back -- if I could redo some stuff I would. Speaking only from heart because I care.
 
HI ALL..
Still recovering!! Mom is in the hospital so it's a bit crazy right now...not helping myself by walking too much...overtired and aching..if I could just get the wheelchair in the truck..!! (the walker is tiresome)
The test for SI joint problems is a block..and they take an xray to see if the contrast is coming out of the joint....that proves the disruption..(I think I have that right!) The block takes all of the pain away..and that is part of the test. I have a picture of mine...and the contrast is just billowing out...showing the disruption. Also have an xray done right after surgery - shows the screws/rod/and cage...feel like a machine shop...(you don't really feel the stuff...that is my imagination!!)

I had the problem for almost 5 yrs. and no end in sight...My surgeon is a specialist in SI area...a lot of Drs. don't even go there. All I can say is that my pain is gone..leave the rest up to you all. Life is too short for this kind of ongoing pain...5 yrs. is way too long to waste...3 month recovery...you can't imagine how hard that is..but life will be back...and for me so far...pain is GONE.

When it all get's too much for you, see a specialist in this area...make sure he is good...what his success rate is...get your support system in place..you will need it...

Please, my frienRAB, feel better...I will visit back soon...have to go and see my Mom..

Leslie
 
Leslie you have done so well but I am sure you have had some very long days during this recovery. I am sorry to hear about your Mother and hope she gets to feeling better soon. It sounRAB like you are on the up hill side now so don't overdo and get yourself down again. Just take it easy. I know it is hard when you have hospital duty but you need to think about yourself also.

Gentle Hugs
Linda:angel:
 
Paula, i sure am glad to have these boarRAB! It's great finding someone or others that can relate to what your going through! :There were times I swore I was falling apart physically. One day my foot would be hurting so badly I could barely walk, the next day it would be fine. One day I thought I needed a right hip replacement, the next day it was the left hip. Pelvic girdle spasms all the time, especially when first waking. I'd have to get up 2 1/2 hours before leaving for work so I could work past the early morning spasms. In the last 4 weeks before surgery I could have sworn I ruptured L4/L5, the sciatica pain was so horrible.
I hope all is well?
monkey
 
Pepper, I have severe SI Joint arthritis. It can easily be seen on a CT scan (better then an MRI for that.) Oddly enough, my family physician originally ordered the CT scan, and he started me on Celebrex for it. I consider it to be the wonder drug for SI Joints - it completely stops my pain.

The pain can definitely fool one into thinking it's your lurabar spine, but putting pressure on the joint during an exam can easily diagnose it as the problem. If I was having a bad flareup the symptoms were primarily the inability to straighten up after sitting.

But Sage can tell you more then the rest of us, I think.
 
hi Pepper ~

My therapist showed me how to "reset" my SI joints so that I can keep my pelvis more level. From favoring one side for 3 years prior to surgery, I am weaker on one side than the other. Sometimes I feel uneven when I am standing, like one hip is higher. She showed me several things that I can do on my own to snug those joints back to where they are supposed to be.

When we have back problems the ligaments often become too stretched and allow the joints to be somewhat unstable. Supposedly after I get my pelvic floor muscles, and muscles of the core stronger, the ligaments will equalize and do a better job of holding the SI joints.

Pelvic floor dysfunction can also cause pain that mimics that of low back pain.

I'm so happy you felt better this morning. Hopefully this will be the beginning of a long run of relatively pain-free days.

xx M;)M
 
Hi Monkey! Yup, those were a lot of the symptoms from my SI Joint arthritis, although many of my symptoms were also from my back problems. I do hope you find a doctor who can help you deal with the pain from it. The bad news is, doctor stopped the Celebrex for now. It will interfere with fusion, so I'm off it until we see a good fusion in place. Unfortunately, this will interfere with my plans to continue to reduce the Vicodin. Oh well, I'll get through this.

Leslie, I am SO happy you're feeling so well! Incredible, isn't it? It's such a relief to find the right thing at the right time, and the right doctor.
 
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