Friday, April 1, 2011 used with permission from Caroline’s Blog: http://goodbyesijd.blogspot.com/
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…
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, this time for Sacroiliac Surgery-
*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 #2, our “free time day”…
DAY #3, Pre-op appointment with Vicki, day before SI Surgery:
Discussed my test results + surgery recommendations and manually aligned my SI Joints..
Pre-op appointment with Dr.Weiss, day before SI Surgery:
Discussed test results and SI Surgery options.
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!
Friday, June 10, 2011
Well, one of the ideas for this blog was to be informative during my recovery. Unfortunately I really wasn’t able to sit long enough to type at length at a computer, so that didn’t really work out until now! Let me start by saying that I am quite amazed with the results before I talk about the recovery that is a little hard. Also, let me qualify my recovery with the fact that I was extremely unstable for eight years.. holding myself up on the right side since I did not have a hold on the left side (ligaments were not holding my pelvis in place). I didn’t realize how weak I had become on my “bad” side, which made my recovery harder. So, many people will not be as bad going into surgery. In talking with other SI patients that had surgery, I found that their condition pre op was an indicator of their recovery. My condition pre op was that I could not stand really for any amount of time without pain. I could not go to store or walk a block.. I had eliminated all activity. I required a wheelchair in the airport to Georgia. I tell you that so you can compare to yourself. I talked to two other Ifuse patients whose recovery did not seem quite as hard as mine, but they did voice the same type pains. I will try to outline it by weeks. It seemed every week, there was some type of concern that may have been scary, but it always resolved within a week or so.
First Days after surgery – Pain was well controlled. I could definately tell a huge difference in the pain of ifuse versus the screws immediately after surgery. I really hardly noticed anything done on my good side with the screws after a few days. Week one I really don’t remember much.. just very sedentary. I was able to take a shower when I got home, using a shower chair (a must). They also ask you to be partial non weightbearing for six weeks on the ifuse side, so I used a walker at first. It was painful to walk, so I was glad I had the walker instead of crutches.
A huge praise during the first week.. along with my back pain and mobility problems I also had intense lower abdominal pain. It would get better with corrections and taping, but if I took the tape off it would go to this enormous 10 pain: pressure like, burning pain in the lower ab/pelvic floor..it was the worst pain I have ever had.. it is a pain that instills panic. In the pre op holding area it was terrible.. after surgery it came back a little as I traveled home and then went away for good. I had talked to one other patient who described the same thing. Incredible!!!
Week Two – I got very concerned because the pain around the implants became very strong for a few days… like a burning pain. It felt like inflammation, trying to settle in..etc. Still very sedentary. I went off the anti-inflammatory after five days, so I wondered if that was why the pain was worse in the second week. Since you are trying to fuse bone over the implants, it was suggested not to take anti-inflammatories as it might interfere with the process. I am still not clear if this is true for ifuse (I know it is for traditional fusion), but we wanted to be sure.
Also, I kept feeling an intense pulling pain in the groin/inner thigh area, especially when sitting or partially sitting. This was very bothersome, but I also had it before surgery. Vicki told me to keep doing the corrections for the front bone, as that could be unstable. The pelvic ring includes three joints: the two in the back that we fixated and the one in the front. Even though we fixated the two in the back, the front one can still be unstable. They say it usually tightens up in four to six months. This pulling sensation got better in week three for me, but I still to this day have to correct it at least once a day.
Week Three – The pain around implants was not nearly as severe. I was able to move and walk around the house more, not alot, but I could tell the pain was better so that was encouraging. It is still too uncomfortable to sit for longer than a few minutes. I really only sat to eat and just for a few minutes at a time.
Week Four – Each week I feel the pain around implants getting better, but it still really hurts to stand much and I am incredibly weak. I started PT and it was really hard.. very painful to do that much activity. I started to get worried. My PT said he wished he had a tickmark for every time I said “I am afraid…”. I found a great PT, very encouraging and very smart. SI patients are so broken and fragile… you really need an encouraging professtional to help you when you get home.. start looking now. I am very thankful for mine.
I started to realize that my new position felt very foreign. I had been out of alignment for so long, and I drug my left leg since there was no hold on that side. Now I was lined up over this leg that didn’t know what to do!! This is the part that may not be as bad for some, since my leg had atrophied due to eight years of not bearing full weight. My muscles are in total confusion and they are so weak. I started to wonder if I liked this new position (now I do!) It was a little frightening.
Week Five – I moved onto crutches after the first few weeks, but still not full weight bearing. I start to feel anxious that I don’t think I will be able to walk unassisted at six weeks. I try a few times and it elicited alot of lumbar pain. My back muscles were extremely tight and just not ready. We set a goal to go to one crutch at six weeks. We worked several times just on how to transition weight over to the left side. My PT says I am going to have to teach you to walk again. I was glad he said it out loud, because that is what I sure was thinking. Again, thankful for a great PT.
Week Six – For about two days, I had alarming pinching feelings in both sides of the groin area. I think it was that front bone trying to stabilize as I was walking around more. I transitioned to one crutch relatively smoothly. However, I am still unable to sit for long periods and very concerned that I am still having to use the crutch. We decide to stick with that until I feel more comfortable though.
Week Seven was the Magic Number for me as far as overall pain. I finally am able to sit comfortably for longer periods..as long as I am able to get myself in a comfortable position. I feel very relieved. BUT, as I started sitting more, the pirformis and glute muscles really started acting up… the piriformis is known to be a problem post op.. and mine happened later, since it took a while for me to sit. With some good stretches, it did ease.. but it was pretty bad. It seems the back muscles are loosening up and…
Week Eight: I take my first unassisted steps! Praise the Lord! They are not pretty but they are steps. As I began to walk more, the piriformis and glutes get pretty angry. I have to say that is my biggest source of pain now. We have found some good stretches that help that. I have a huge network of SI friends and we all exchange tips.. priceless. I love them…another God send.
Now I am two months post op.. and I finally can see that I will be able to enjoy life again. The way I would describe the feeling is that I now have a HOLD on my left side. Before there was no hold and my leg would fall backwards, then my back would start killing me and feeling like it was twisting forward. I would fight with the other side to hold myself up.. I felt twisted…I was twisted. Now I am untwisted, aligned correctly, and I can push through my leg.. wow, an awesome feeling. I feel how weak it is.. it is shaky no doubt. We have started some squats and the muscles are sore.. what a great feeling.. they are working! Now, I have to rebuild all the strength that was lost and correct all of the muscles dysfunctions that happened. I love how Vicki explains the muscle inhibitions in laymen terms that occur with sacroiliac joint dysfunction. The brain tells the body “Hey, we have a weightbearing joint out of alignment, muscles tighten up”…so the piriformis becomes very spastic trying to hold the joint in place. Then the brain tells the muscles that allow movement, the abs and glutes, “Nobody move, she might fall over.” So, they become very weak. Now we have to undo all of that, and build strength back on my left side that I was not fully using. This can not be fixed until you achieve stabilization. I have a firm foundation now and I can do it..
I have just started walking and exploring how it feels to be stable. Today, I am walking very freely around the house and it feels great and solid. I still feel very fragile and not by any means pain free. My back pain is minimal at rest..it still gets aggravated with more activity, but it is not as severe and long lasting. I still have to limit sitting and standing due to the piriformis pain, but I can now see a finish line.. it is pain with a purpose, as Melany would say!! They say that a full recovery is a range of six to twelve months.. and maybe longer for some severe cases, such as mine. I know where I came from, and I could not be more ecstatic about where I am now.. thanks be to God who worked through Vicki Sims,PT, Dr. Weiss, and my current PT, Jeremy Pittman, to allow me to walk normally again, and reclaim my life from the devasting,disabling, and misunderstood effects of sacroiliac joint dysfunction.
This photo was taken the night before my SI Surgery when I was in Gainesville, GA. I am the one in the black shirt sitting down in the front row(in pain!), next to me in the orange shirt is my husband. I am surrounded by other SIJD patients and their loved ones…