The Psalm that Sustained Me

With another surgery looming over my head, I was feeling anxious, alone and unsure.  We had returned from Georgia a few weeks ago and I had been working through Vicki's therapy program to stabilize my joints as a last ditch effort, which I knew in my gut was not working.  I had had a phone conference with Vicki, my therapist, the night before to discuss my progress. She had asked me to keep a pain diary to track some things so that we could make decisions.. pain level, how often the joints came out, etc. Being an accountant, all I knew to do was put it in an excel spreadsheet, which she said she had never seen before and wanted a blank copy! She had studied this before our call.  I had fully expected her to say that I needed to continue working on the therapy for the full six to eight weeks and not to give up.  Instead, her first sentence was "Caroline, you know and I know that you are just highly unstable.  One of your options is to throw in the towel now and proceed with surgery to fixate your joints."  My heart began to race, I felt my face turn red, and my voice became faint and quivery.  She began to talk about the different surgery and implant options. I had so carefully prepared my progress and questions, and yet was so ill prepared for this conversation.

I didn't know the correct answer, which was frightening.  I knew that I probably needed the surgery, but what if they were wrong?  What if it was another failed attempt; I had already drug my family through so many failed procedures.  What if this didn't work for me?  Do I need a second opinion (or 23rd)?  How do I know who to trust, after all, I did find them on the internet? It was a quiet day; I had taken a leave of absence from work.  I turned to where I might find some answers.  I opened my Bible; admittedly a place that I had not turned in quite a while.  I prayed alot though and had prayed fervently that God would lead me and let me know without a doubt if I was not headed in the right direction.  My prayer was bold; I asked him to provide answers without delay! My family so desperately needs me to be able to walk and stand  - I pleaded with the Lord.  I wasn't sure what I wanted to read...or really where to start. So, I just opened it. I know Psalms is in the middle and all, but I also know that it was not a coincidence that this is where my Bible opened and I immediately read these verses:

I waited patiently for the Lord;
he turned to me and heard my cry.
He lifted me out of the slimy pit,
out of the mud and mire;
he set my feet on a rock
and gave me a firm place to stand.

Psalm 40:1-2

The New Living Translation says:

He set my feet on solid ground and steadied me as I walked along.

Tears began to stream. After all of these years, I felt my prayers were being answered and He was showing me that this was His plan, not mine. It was ok to proceed and His plan is perfect.  It was settled that day.

Update: Now I am two weeks post op, and I have been wanting to update my status for you but haven't felt like sitting long enough to type.  They asked me not to sit more than an hour at a time for the first couple of weeks.  So, if you are checking this, know that I am recovering very well! Dr. Weiss with assistance from Vicki Sims has fixated my pelvis and I am now in perfect alignment! Prayers have been answered and many symptoms have dissipated!  I went into surgery with abdominal pain at an 8/9 when I took off the tape, and it is completely gone.  That's right, gone! My back pain is nominal right now at rest. I still have a long way to go as far as healing and rebuilding muscles that are not functioning properly from years of dysfunction, but God has provided a firm foundation and is now steadying me as I walk along! Both sides were fixated,  and the left side was also fused with three beautiful titanium implants.  Since I required the fusion, I have to be partial non-weightbearing for a few more weeks so I am not able to test out walking and weightbearing.  I still get anxious and nervous, but when I remember the Psalm that God showed me, it sustains me.  Many of your prayers are being answered and I have no doubt that the power of your prayer helped.  I am so thankful for each and everyone of you who prayed for me.  A great big huge thank you to Pam Guernsey in our SS class... she has given so much of her already stretched time and energy to me and I am forever greatful.  I loved getting the messages on my phone that many were praying right before my surgery as I was in the holding area - I knew I was being covered in prayer and God was working. Thank you also to our sunday school class who were so generous before we left and for bringing meals - we will never forget!

I will provide more updates as I am able to sit for longer periods. 

Surgery Recap

My friend, Melany Unrau, compiled all of my facebook messages to her and some other friends, and added a few things that she knew, to compile a chronological story of my SI surgery experience as a memoir for me and to be able to share.  Melany also suffered with SIJD and was crippled for several years and lived out of her bed.  I have been honored to get to know her, and she is now living a normal life after her surgery.  She is a very Godly woman who coached me through this entire process.  The text also contains a response from Amy, another SIJD friend.  Lots of punctuation and grammar errors... I was texting from phone and while heavily medicated!  Thank you Melany!



*The following is Caroline's journey these last few days here in Georgia, written in first person...

My First Trip To Georgia Was Several Weeks Ago-
Prior to traveling to Georgia for my SI Surgery, I'd decided to go ahead with Vicki's 6wk Conservative SI Stabilization Protocol. So, I had already been to Georgia a few weeks ago to see Vicki for evaluation and learn the program (also saw Dr.Weiss at that time for a pre-op consult just in case). 4wks into this program we could see that I was just too unstable due to SIJD for 8 yrs.

The Following Is My 2nd Trip To Georgia-
*order of events the last few days here in Georgia from pre-op to immediately following post-op...

DAY #1, Arrival in Atlanta-
Pre-op Testing For Common Associated Conditions with Dr.Howard:

Loved Dr. Howard! It took much longer than expected, he spent almost two hours with us!

1. Piriformis Syndrome via EMG with Fair Testing:
*I do not have Piriformis Syndrome - yeah! The piriformis muscle itself is sending out pain signals though, suggesting SI problems.

2. Lumbar Disc Nerve Testing via EMG:
*Dr.Howard tested my lumbar spine + pathway for possible contributing nerve interaction from my L-Spine discs. We got concerned at first because he was getting positive pain signals in both calves at L5 (where my annular tear is). uh oh.

He continued via EMG to follow the nerve pathway and he went up to my lumbar back. Howard said this area was more important and there were zero pain signals at all levels! He said that if my disc was causing the significant pain I was having he would have gotten strong pain signals in the lumbar - where the "roots" are and he got absolutely nothing.

When I asked him why there was positive pain signals in my calves, Howard said that if disc was part of the problem it was likely 10-15% of on a pie chart:
he felt very strongly that SI was my #1 pain generator. He definitely thought I had biomechanical SI dysfunction - my scoliosis and shorter leg causing a lot of problem to the SI, thus biomechanical.

Dr.Howard also said the manual pressure to relieve shoulder dystocia of baby given during McRobert's maneuver is likely what caused the femoral nerve injury (which he said looks great now),  likely too much pressure. But McRobert's maneuver, the maneuver used to relieve shoulder dystocia likely caused the stretch injury to SI joint. The baby was stuck and time was of the essence. 

Feeling pretty good about my bulged disc at L5 now. Dr.Howard said I was very complex (due to having Scoliosis since childhood), Vicki said it too...i hate hearing that..but greatful about being here.

Pre-op Testing to Confirm SI Joints as Pain Generator via Flouroscopic SI Injection with Dr.Stewart-
*We chose to forgo this test as it would be a repeat procedure for me. I'd already had SI Injection prior to coming to Georgia to see Vicki/Weiss.

DAY #3, Pre-op appointment with Vicki, day before SI Surgery:
Discussed my test results + surgery recommendations and manually aligned my SI Joints..

Vicki is still quite concerned about disc and said to go ahead and plan on working on the disc as soon as we get through the six week therapy after SI surgery

Pre-op appointment with Dr.Weiss, day before SI Surgery:
Discussed test results and SI Surgery options.

Due to my scoliosis, Dr. Weiss had already decided that we needed to fixate and fuse my left SI joint.  He said the scoliosis and shorter leg causes more shearing and strain on the joint.  My sacrum also has some defects so we did a ct scan in order to determine where he will put the implants and make sure he has room. The fusion means a more involved surgery, and we chose the ifuse implant since it is the least invasive.

DAY#4, Pre-op...here's what my SI Surgery will be:
(Morning of surgery day April 7th at 6:27am):
Vicki to manually align in the Operating Room on the table while I am asleep. Weiss will surgically insert ifuse implants on left, fixate via screw implants on right..partial non weightbearing for six weeks..here we go...

DAY#4 con't, Post-op, (afternoon/same day as surgery...April 7th at 2:58pm):
Just got up with PT...I could not tell anything done on right side screw fixation! It is nothing..very sore on ifuse side, guess larger incision and implant? all went well..thx for your prayers.

DAY#4 con't, Post-op, (early evening, same day as surgery...April 7th at 7:44pm):
Hurting on my worst side at of my hip around ifuse incision area..i want to bear full weight to feel it but don't want to get my hopes up. I can’t express the feeling of this enormous power of prayer that goes up on our behalf!

DAY #4 con't, Post-op, (late evening, same day as surgery...April 7th at 10:45pm):
Surgery went well, the side with screw fixation feels like nothing there. Dr.weiss and vicki wanted fusion with ifuse on left, and that side hurts but not awful! vicki came by and said all is EVEN now! I know I will have some hard times but so happy . thank you sincerely for prayers!

DAY #5, Second day of post-op...(Late afternoon, April 8th at 4:16pm):
I have beautiful screws on one side and ifuse on the my worst side. it seemed to me that weiss is reserving ifuse for ones that do need a fusion. he also told me I will feel more stability in the screw side for a while until ifuse fuses. the incision is much bigger and they do have to pull some muscle back. Vicki wants weekly updates since I am one of first ifuse. I can def say the post op pain is much better with screws.

DAY #5 con't, Second day of post-op...(Evening, April 8th at 6:36pm):
Pain is very tolerable right now. I do still have SI pain..hope that is normal, but the pelvic pain is GONE! Even without wearing tape! I went into surgery with pelvic pain at 8/9..and now gone. Hope it stays this way!

DAY #5 con't, Second day of post-op...(Evening, April 8th at 6:36pm):
So, we are back at hotel and after the activity of walking with walker, my back is really hurting on bad side. I am getting nervous. It seems like I have heard people are immediatey pain free in SI
Caroline's Question: please tell me normal and when did si stop hurting? it makes sense to hurt after surgery..robert says I am worried over nothing.

Amy's Reply: It's ok caroline - it's ok - it is normal it it was hard - you JUST had surgery- take a deep breath... it is ok sweet, sweet Caroline! it will hurt like this for awhile and then it will get better and then you'll start PT and it will hurt on and off again...you are just a few toes into this journey...it's OK to hurt, it's ok to cry, it's ok not to know what to feel. Your going to be nervous and unsure for awhile.... Carol and I both were and expressed the same fears - rest... rest in your husband, rest in your all mighty God. rest praying for you and rejoicing with you - you have your firm foundation - it will take time for your body to heal form surgery. Many hugs and much love!!

Melany's Answer: It is worry over nothing, 100%!!! But I had it too, I have to guess that most of us do post SI Surgery! You will still have SI pain for several months yet.

Expecting immediate pain free results is akin to trying to suddenly stop a tidal wave, mid-swell, instead of allowing it to gradually simmer down and recede back from the shoreline!

That's why my mantra to people heading into SI Surgery has become, "It took me TWO years to get completely free of pain!"

I know it won't take you as long as it did me as I was a wreck (as you already know!). I promise you, from one SI sojourner to another, it will happen it just takes a LOT of patience!

Lots of love to you and THANK YOU for the updates!

Day #6, Post-op- Sat./April 9th at 9:39pm:
I am now home in my bed! Whoa that airport was tough..pain really kicked in after all the bumpy chair rides :( I started to wonder if driving may have been better. at least we are home..can not wait to wash my hair! All I could think about on way home was what if there was no vicki. still blurry vision..a little troublesome. lots of love to you!

Hope for Stability

On Thursday, April 7th, I hope to say goodbye to the crippling effects that sacroiliac joint dysfunction has had on my life.  It began with a traumatic childbirth, followed by several clumsy years of searching for answers with multiple doctors, mobility problems, confusing symptoms, and ended with severe pain and limitation of mobility. I can not go on a walk, go the store, go to my children's events, etc.  Just simple standing is not effortless for me; it has been work to stand ever since the delivery but now at times impossible.  I could no longer force a smile on my face and push through the pain (which tragically causes more damage) when my body was in grimacing pain, so I put my determination to use and began my own research, finding a group that specializes in this problem.  It is a team that consists of an orthopedic surgeon, physical therapist, and a physiatrist in Gainesville, GA outside of Atlanta. They immediately got it.. immediately.  They gave me numbers of people to talk to that have had minimally invasive surgery to fixate their joints, and now are able to walk pain free.  Sign me up...

I am starting this blog so that family and friends can follow my progress.  Many have been so concerned and I am so grateful for my family that has stood by me even during the most confusing times and understood that I have a real problem.  I believe that God just took his time in providing answers for many reasons, one being that I would be treated by the right medical team. This is a complex problem to have and my orthopedic makeup is also complex to add another layer, so I need the best.  There are many SI patients that have documented their progress, and I want to do the same in order to help other patients that are still searching.

My diagnosis in order by Dr. Weiss:
Severe and chronic sacroiliac joint dysfunction complicated by
32 degree lumbar scoliosis
L5/S1 disc annular tear and bulge, likely caused by the same injury
S1 lumbarization (means the left side of my S1 vertebrae did not fuse as it should have)
Femoral nerve reiinervation (also caused by the delivery)

The scoliosis and lumbarization of S1 are defects in my spine that set me up to have greater trouble with this type of injury and to be more lax in the sacral area.

Vicki Sims, PT, has devoted her career to helping patients who are suffering the disabling and devastating effects of  SI joint dysfunction. The first day I met her I explained my symptoms and how I have altered my lifestyle.. can not pick up a gallon of milk so we buy two halves, never ever bend over, no stairs, no inclines, shower chair, can not stand in one place, and most recently can not go shopping, run errands or really go anywhere because I simply cannot stand up that long.  I am at the point where I would need a wheelchair to do any extended "walking" and am using one when we go to the airport.  That part is one of the hardest...to let others see me in a wheelchair...I wore my sunglasses in the airport the first time.

After she examined me, in her soft but most confident Georgian voice she said, "Go home and know that you will no longer have to alter your lifestyle in this way, we can fix your problem whether it be via conservative measures or by surgery." I met with her over three days, followed by a meeting with the surgeon.  They explained to me in layman's terms that my pelvis is dislocating when I stand or walk or do anything.  There has been damage to the supporting ligaments causing my SI joints to dislocate, meaning that my core is not aligned properly over my body.  I did not stabilize during therapy over six weeks, so we are moving on to surgery next week!  It is not a quick fix, but it will give me a stable base that I can begin building again, the muscles around it and my life.

It has really been unbelievable the support that we have gotten from friends and family that are rallied around us as we prepare to leave.  I had lost touch with many people since I have been confined to the house, so I did not expect it. I also had just stopped talking about it, because there really is no way to explain the way it would feel if you do no have complete nerve innervation in your leg, or how it would feel if your core was not stable.  It is just something you can't imagine.  Thank you all so much - it is you and my Lord that got us this far...

More to come later on:  Post Operative notes, How did I get This, Why Did it Take so Long, What is the SI Joint and What are Symptoms, Lessons Learned