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Old 01-24-2008, 11:39 AM   #1
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Negative Discogram

Had my disco today...it's not my discs. Totally negative test. My SI block was positive on the right (done a few weeks ago) and now we're pretty certain that, in addition to the right SI joint, I have bilateral piriformis syndrome.

I am a wreck. I wanted my back pain to be coming from a disc so bad simply because the surgery for the SI is so scary. I have done everything under the sun to try to help my SI, but unfortunately I am in the class where I have a "normally moving" SI but it's a very, horribly painful SI, such that I don't even stand on my right leg because the joint seems to not be able to take a load. It is very disabling and I am 28. This has to be treated somehow because I'm basically disabled at this point. This time last year I was an endurance athlete. Now I can't walk around the block, sit, stand, etc. It feels like the joint has failed. I think the piriformis syndrome is another monster, and for me it feels like a matter of scar tissue in my butt in addition to all the spasms. It, too, is pretty disabling.

So, here's my problem: I have conservatively managed this for a year and have gotten worse with zero improvement. My docs agree that either I have piriformis release surgery and/or SI fusion or I can just stay like this. I can not live like this. Literally, I don't think I can go on just getting worse and losing function with every passing day.

The piriformis release surgery has vastly improved over the years and is pretty successful. The SI fusion, also has improved and I have found a few surgeon's in the US who I feel confident in.

I am certain I need surgery. This is not getting better, getting worse and I don't want to end up in a wheelchair (I do use one on occasion now). I do not know which surgery to pursue first.

The "theory" I like the most is that if we could get the piriformis release done, maybe those muscles won't be pulling so hard on my joint and the joint may get better. The other theory is that once the joint is stabilized and load bearing again, maybe my muscles won't have to work so hard. It's a hard call and I don't think there is a doctor in this country who has the answer. Half the time I want my joint fused because it hurts that bad, and the other I want the piriformis surgery because the butt and leg pain is awful, too. I wish they could be done at the same time.

I am completely a wreck and devastated with this because I don't know what to do, what will help me the most, and what the right step is to take. I feel like a little girl who is lost in the woods and can't find her way home. Scared, too.

Any advice, encouraging words, hugs, anything would be helpful. Thank you all so much for being here.

Take care,
Julie

 
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Old 01-24-2008, 12:32 PM   #2
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Re: Negative Discogram

Hi Julie ~

I know what a disturbing feeling it is not to know what to try first. And with the spine, there is always the hope that if you could just hang on a bit longer, some new procedure or technique will be discovered that would help more than current procedures. I kept hoping for that with a fusion, but finally had to give in and have it done.

I can only send you moral support and some (((((HUGS))))) of encouragement which isn't much. You sound like you've done your homework. Have you considered or would there be any point in going to a major teaching hospital or perhaps going to HSS in NYC?? Might they be able to do something that your local docs haven't thought of or might not know about??

Hopefully someone on here will have some great ideas for you.

more (((((HUGS)))))

xx MM

Last edited by mznell; 01-24-2008 at 09:31 PM.

 
Old 01-24-2008, 01:09 PM   #3
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Re: Negative Discogram

Julie - This certainly does not sound encouraging. It sounds like you have had more than one opinion. Correct ?

I don't know what to say but I can lift you up in prayers as you make this difficult decision. It sounds like you are going ahead with surgery but have to make a decision as to which one first. Good luck and keep us posted. We care.

 
Old 01-24-2008, 05:22 PM   #4
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Re: Negative Discogram

I've had few local opinions and am going to have to travel out of state for my more "formal" second opinions. Yes, surgery is my choice but I'm pretty scared about it. I simply do not want to fuse my SI because it's just such a risky surgery. My local SI surgeon has basically left it up to me. He agrees that I am very young for this surgery and we both are concerned that I would lose a major shock absorber of my body. We're also concerned by the amount of disability I have at 28 and want to give me some quality of life back. My second opinion will be in the future, but it's going to take a while because there are very few skilled surgeons who do this surgery and I will have to travel out of state. Same with the piriformis surgery. The two specialists who do this surgery are in California and I'm in Alabama. The surgery is not so much a "piriformis release" but more a detailed neurosurgery for a pelvic nerve entrapment syndrome. The recovery for it is pretty tolerable and the success rates are pretty good. The question is which to do first and which will increase my odds of the other one being successful. It's hard to find surgeons who specialzie in piriformis release and hard to find SI surgeons and darn near impossible to find a skilled surgeon who believes in both. There is one in Atlanta who does...I'm very, very not impressed with his outcomes or methods.

It's hard because I basically have two pretty uncommon problems. Well, they are are common but it's pretty rare for these problems to get to the severity that I have it. I have been a hard core athlete and have trained my little heart out for years. I think I had a predisposition for this due to various body mechanics, a weird little sacralized L6, and an odd climbing accident a year ago (where I had to stand in an odd position for 12 hours waiting for a rescue). All of this has left me with a blown out right SI and bilateral piriformis syndrome.

I do want surgery, simply because right now I don't have a chance of getting better with the conservative methods. We have done everything short of snake oil and it's obvious to me and my docs that something needs to be done...that or I could do pain management for the rest of my life. That's a hard pill to swallow (no pun intended) because I'm basically housebound now with minimal driving, walking, life, etc. I am an ICU nurse and I want to work again so bad. Even if it's in a doc's office doing blood pressure...I just love being a nurse so much and I want to do the job I love. Not sit here at home at the age of 28 with no hope of ever getting better.

So, that's the details thus far. Thank you for the hugs and the prayer. You all are the most supportive group. It means the world to me.

Julie

Last edited by ladyjayy; 01-24-2008 at 05:27 PM.

 
Old 01-24-2008, 06:30 PM   #5
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Re: Negative Discogram

Hi LadyJjay- I suffered from severe pain in my SI joint(s) for over a year. My pain was a result of extra ordinary movement of my si joints due to a multi-level fusion. As you probably already know thru your research, our si joint(s) aren't designed to move very much at all. When they do move more than nature intended, they can cause really severe pain. In my case I opted to have them fused. The surgery was a complete success and the pain vanished. Of course the difference between us is that the piriformis muscle was never in question in my case. I didn't think that the si fusion was a hard surgery to recouperate from, in the larger scheme of things. Keep in mind, however, that I've had over 10 spinal surgeries and therefore have lots to compare it to. I hope that you get some relief - I remember how miserable I was before I got my problem resolved. All the best - K'Mac

 
Old 01-24-2008, 06:32 PM   #6
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Re: Negative Discogram

The next month is devoted to second opinions. Yes, surgery is my choice but I'm pretty scared about it. I simply do not want to fuse my SI because it's just such a risky surgery. My local SI surgeon has basically left it up to me. He agrees that I am very young for this surgery and we both are concerned that I would lose a major shock absorber of my body. We're also concerned by the amount of disability I have at 28 and want to give me some quality of life back. My second opinion will be in the future, but it's going to take a while because there are very few skilled surgeons who do this surgery and I will have to travel out of state. Same with the piriformis surgery. The two specialists who do this surgery are in California and I'm in Alabama. The surgery is not so much a "piriformis release" but more a detailed neurosurgery for a pelvic nerve entrapment syndrome. The recovery for it is pretty tolerable and the success rates are pretty good. The question is which to do first and which will increase my odds of the other one being successful. It's hard to find surgeons who specialzie in piriformis release and hard to find SI surgeons and darn near impossible to find a skilled surgeon who believes in both. There is one in Atlanta who does...I'm very, very not impressed with his outcomes or methods.

It's hard because I basically have two pretty uncommon problems. Well, they are are common but it's pretty rare for these problems to get to the severity that I have it. I have been a hard core athlete and have trained my little heart out for years. I think I had a predisposition for this due to various body mechanics, a weird little sacralized L6, and an odd climbing accident a year ago (where I had to stand in an odd position for 12 hours waiting for a rescue). All of this has left me with a blown out right SI and bilateral piriformis syndrome.

I do want surgery, simply because right now I don't have a chance of getting better with the conservative methods. We have done everything short of ********** and it's obvious to me and my docs that something needs to be done...that or I could do pain management for the rest of my life. That's a hard pill to swallow (no pun intended) because I'm basically housebound now with minimal driving, walking, life, etc. I am an ICU nurse and I want to work again so bad. Even if it's in a doc's office doing blood pressure...I just love being a nurse so much and I want to do the job I love. Not sit here at home at the age of 28 with no hope of ever getting better.

So, that's the details thus far. Thank you for the hugs and the prayer. You all are the most supportive group. It means the world to me.

Julie

 
Old 01-24-2008, 06:36 PM   #7
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Re: Negative Discogram

Hi Lady,
I don't know much about your problem but I want to wish you luck. I also know what you mean about your job. I have been told that I can never return to my job as a NICU RN. It's all I've done for 23 years. I pray that you will get bettter and able to return to the job that you love so much. Hang in there and keep us posted.

Deb

 
Old 01-24-2008, 06:36 PM   #8
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Re: Negative Discogram

K-mac...you had fusion!? It is so good to hear from someone who has had success with this surgery. I have heard both great stories and horrible ones. May I ask (and if it's okay on this board) who did your fusion? I am thrilled to hear that you are okay after the fusion. That is great news. I have heard similar stories to yours which I cling to for hope. I just hope that if and when I chose to do this I will have just as good an outcome. I also am trying to find a great surgeon to do this. Thanks so much for the uplifting post.

How long did your recovery take and how long were you non weight bearing?

Thanks so much,
Julie

 
Old 01-24-2008, 06:49 PM   #9
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Re: Negative Discogram

My surgery was performed at Johns Hopkins in Baltimore by Dr. David Cohen. I was non-weight bearing for 4 weeks and gradually added weight in thirds every 2 weeks thereafter. Even though they call it non-weight bearing, you can stand and pivot from day one. My recouperation was pretty easy and I've never had another problem with my si joints. My issue now is I have two broken vertabrae at T3 - T4 with the fractures pushing in on my spinal canal. I'm currently waiting for a surgical date. I have severe osteoporosis and have had many, many compression fractures because of this disease.

 
Old 01-24-2008, 07:59 PM   #10
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Re: Negative Discogram

Dear Julie, Hi! I have bad arthritis in my sacroiliac joints, and have had multiple injections. These help my pain for about 3-4 months. Have you looked in the RFA (radio frequency ablation) on the sacroiliac pain nerves? I have had this done up higher in the lumbar facet joints and it helped a lot. I got an opinion from a doctor who does RFA in the SI joint, and in my case, I decided against it. He told me that 50% of people get pain relief from it. So, I decided to keep going with the SI injections. But, in your case, it might be something to consider before going for the SI fusion. It seems like it would not hurt. Not all doctors who do injections do this procedure, you have to have specialized training. But I know people on this board have had it done and gotten pain control from it. Just a thought-I wish you the best with your decision. Take care, Kera4

 
Old 01-25-2008, 09:04 AM   #11
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Re: Negative Discogram

Hey Kera, I have had the steriod injetions into the joint and unfortuantely they didn't help for more than a few days and the relief was pretty minimal. I'm almost willing to try again but am not sure if it would be worth the added pain with minimal improvement. The most relief I got was from the basic block of the joint...a 4 hour test that said to me that, yes, my SI was the pain generator. I have a tear in the capsule which makes it hard to keep the steroid in there, which I think is why I do not get sustained relief from the injection. That, and I think the joint is biomechanically messed up. I have asked about RFA and no one in my area does it. That option has been something I really have looked into. I'm considering the steroid again, but I had such a hard time with it the first time around I'm not sure if I want to put myself through it again for such a short duration of relief. However, if that injection gave me weeks to months of relief--I'd be at the door of the PM clinic with bells and whistles!

--Julie

 
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