On February 16th, I had my new patient appointment at the UCLA Center for Cerebral Palsy. They hold a “lifespan clinic” every Wednesday at their location in Santa Monica, during which they see adults in addition to children.
If you fill out their appointment request form, don’t expect them to get back to you, even though it states right there on the page that they will. If you have your doctor send a referral, don’t expect them to get back to you. Because you’re not already a patient within the UCLA health system, there’s no file for your referral to get put into. That’s what I was told, when I finally made the phone calls and sat through the menu options and spoke to a person. I am in the privileged position of having good insurance, so I didn’t even need a referral, it turns out. I don’t know how long it would have taken for someone to contact me, or if anyone ever would have.
Once I had the correct person on the phone and they confirmed my very good insurance, it was no problem to make an appointment. They were only booked a few weeks out. So, after knowing for several years that a place six hours from me specifically sees adults with cerebral palsy, I was finally going.
I had been told that my appointment would be the typical fifteen minutes. Thankfully, the person who told me that had no idea what he was talking about. We were there for an hour and a half. After the initial intake guy, a doctor came in to take my history, which he would then present to the main doctor. (I don’t know if this was an intern or what, because he introduced himself so fast.) When I say he took my history, I mean he started with my birth. Needless to say, I wasn’t very helpful in this area. I imagine these appointments are usually with the mother answering questions about her toddler with CP. I was premature and I had a cerebral hemorrhage. That’s the extent of my knowledge. I have lots of faded, early 80s, barely readable records in a box somewhere.
The history probably took an hour. When was I diagnosed? What was the doctor’s name? (I don’t know, but since I’m forty-one, there’s a fair probability that the doctor is now dead.) Did you meet your milestones on time? What kind of mobility devices did you use and when did you stop/start each one? When did you start/stop AFOs? How far could you walk as a child? Was it hard for you? Uh…? Thankfully, I have written down my two surgeries and bring the paper with me to appointments now, because I haven’t successfully memorized the 4-in-1 one from 1989. Then, what have you tried for the pain? How much physical therapy did you do? How much Tylenol did you take? (I could not remember everything I’ve tried, so I’ve just now updated that list and will take it with me to my next appointment.)
On the intake form, I had to write down “the reason for today’s visit.” I put right hip pain/labral tear and FAI. So naturally, once we’d covered my history and did a little strength assessment, we focused on the right hip. I would have liked for him to remark on the images of the front and back of a person where I was asked to color in my pain. I would have liked to mention that while the right side is our primary focus, the left side doesn’t feel great either. I told him about the ExoSyms, acquired June 2020, and the very audible pop and tear of my labrum, acquired May 2021. About the discovery of the hip impingement after the arthrogram in June last year. The steroid injection that did nothing but cause pain in August. The refused referral to UC Davis orthopedics.
He went and presented all this info to Dr. Solberg. Finally, the man himself entered the tiny room. He did some physical assessment. His goal was to “recreate the pain,” in order to ascertain what and where the pain is. But pain does not cooperate that way. If my hip/groin pain is already flared, then there’s very little that can be done to increase or decrease it. It is there. Still there. Still there. Then perhaps five minutes after we are done I can tell you that it is, in fact, slightly different, but I do not know what made it that way. Sometimes a movement or a pressure can make it a little worse in the moment, and I’m quite relieved to be able to provide that feedback.
Dr. Solberg seemed very surprised that the steroid injection had not helped. “Not even right after?” No. He seemed a little dismissive of the labral tear and FAI because I also had lumbar pain, pain down the IT band, etc. He said FAI pain is usually just in one spot.
I had hoped that we would somehow move forward with treatment of the tear and impingement. That was my goal. I had done some googling regarding FAI and found this fascinating information from the Nirschl Orthopaedic Center:
The symptoms can be chronic and achy, or sharp and mechanical with certain motions. In some cases, the patients may also have referred pain to the buttocks or down the thigh.
What other diagnoses might be confused with FAI?
- Hip Dysplasia (Adult Form)
- Lumbar Spine Pain (Low Back Pain)
- Lumbar Radiculopathy (Low Back Pinched Nerve, Low Back Facet Disease)
- Sacroiliitis (SI Pain/Dysfunction, back of pelvis)
- Trochanteric Bursitis (Outside/Lateral Hip Pain)
- Piriformis Syndrome (Back of Hip Pain)
- Psychosomatic Pain Disorder (Stress Related Illness)
- Iliopsoas Tendinitis/Tendonitis/Tendinosis (Hip Flexor Inflammation)
- Groin Pull (Adductor Strain)
- Sports Hernia (Core Muscle Injury (CMI), abdominal muscle strain)
- Iliac Apophysitis (Front of Pelvis Pain)
- Quadriceps Hernia/Strain (Thigh Muscle Pull)
- Endometriosis
- Deep Gluteal Syndrome (DGS)
- Hamstring Tendinitis/Tendinosis
- Chronic Pain Syndromes
Can back pain be a sign of FAI?
While the cause is not well understood, patients with FAI often complain of low back pain. This pain is often localized to the SI (sacroiliac joint on back of pelvis), the buttock, or greater trochanter (side of hip). The hip joint and the low back frequently “play off each other,” and compensation for a hip issue can frequently cause increased pressure on the low back, causing back symptoms, and vice versa.
I have bolded the other pain I have from the above list. Imagine if all of that could be improved with the arthroscopic surgery! But here was Dr. Solberg, telling me that my torn labrum and the bone-on-bone inside my hip was not the cause of my pain (or at least not all of it).
“We have to figure out where your pain is coming from,” he said.
I wanted to scream: “We DO know where most of it is coming from! And fixing it could improve a whole lot of the rest!” I wanted there to be a fixable thing. An answer. A clear plan.
But he said I could have a pinched nerve in my back, tendonitis at the front of the hip, bursitis. There’s a lot that could be going on and interacting, and we just don’t know yet. Dr. Solberg is a doctor of osteopathic medicine, a DO, and I think the first one I’ve seen. DOs have a “whole-person approach” and “look beyond symptoms.” I appreciate that this doctor didn’t just move me forward with surgery, since I know that cerebral palsy complicates everything. Very different from the orthopedic surgeon who was ready to go right ahead. Confirms the stereotype that to a surgeon, everything looks surgical.
That same orthopedic surgeon, who did the injection, said I probably have trochanteric bursitis, but as that’s not what I was there for that day, nothing more was said or done. And so, grumpily, I recognize that while other conditions can be confused with FAI, it’s also possible that I have those other conditions and FAI.
Because I am not local to Santa Monica, Dr. Solberg has referred me back to UC Davis in Sacramento. To sports medicine instead of orthopedics this time. Once I’m there, I can be more easily referred to physical medicine and rehabilitation (PM&R or “PMR”) or ortho as needed. To be fair, after the injection, the orthopedic surgeon did also refer me to PM&R last fall, but it was at his same location 40 minutes away without good transit options, and I haven’t pursued it.
The goal, according to Dr. Solberg, before going directly to surgery, is to pinpoint the pain and calm it down, to know its source. I can get on board with that. The problem I have is this: it means more injections. It means trying the hip injection again, maybe using x-ray this time (regarding ultrasound vs x-ray, different sources say different things). Trying an injection in my lumbar, in the bursae of the hip. I tried to explain how both the injection of lidocaine and dye in my hip for the arthrogram and the steroid injection later were rather painful and didn’t help at all.
“It’s not supposed to be traumatic. But we all experience pain differently,” he said. “Maybe for you it’s painful because of tight muscles and scar tissue in the area.” Yes, that could be. Maybe it doesn’t help that my entire leg goes into a spasm during the procedure. You think?
I don’t think it’s uncommon for lidocaine-steroid injections not to work. That’s why people end up having surgery. So–how many of these am I going to have to endure? And if they do help at all, for how long? Don’t steroid injections seem rather Band-Aid-ish?
Just last night, someone in a cerebral palsy facebook group said she’d been diagnosed with hip bursitis. Someone else posted a video about how massage can help, and that video led me to this one:
Lateral Hip or Trochanteric Bursitis – Causes and Treatment
According to the physical therapist in this video, the hip has nine bursae, though it can vary by individual. Most images I can find online show six. A bursa is a fluid-filled sac in a joint that’s meant to reduce friction. They can become inflamed and painful. The image below is not great because it’s a screen capture from the video, but the point is that each green blob is a bursa.
When I got the diagnosis of a labral tear and mixed-type FAI, I was happy because my pain had a name and a reason and a solution. Now I’m looking at all these green blobs and thinking, well, crap. I wouldn’t be surprised if these were all causing pain too. Watch the video. Watch the video with the knowledge that I have positive Trendelenburg and a turned in knee. Two “habits” that I need to stop if I’m to heal my bursitis. Then watch the treatment options section. Exercise to strengthen the muscles around the hip, but carefully because exercising can worsen bursitis. Tight muscles can exacerbate bursitis, but don’t stretch because stretching can also exacerbate bursitis.
All these years that I’ve gone to PT to strengthen my weak hip muscles and stretch my tight muscles, all these things I’ve been given to do, when I report back and say I haven’t really been doing them at home because they hurt… I mean, where does that leave me? It seems to me that my type of CP basically guarantees bursitis and also guarantees that I can’t treat it properly.
And here I am headed to a sports medicine referral. They’ll probably give me a referral to physical therapy. Ha. So, yes, go ahead. Shoot me up with all the lidocaine. I wish I could believe it could provide relief instead of trauma. I hesitate to use the word trauma, because trauma is so weighty. But the facts are that the two times that lidocaine has been injected into my hip have been stressful, painful, and ineffective.
I need to get my history straight for the next doctor, all the pain management I’ve tried. All my issues on the right side began in January of 2010 with SI joint pain (which could have been from something else, of course). We’re in year thirteen now. I would like to remove my leg from its socket and go to sleep.
I think I need to find a mental health therapist who specializes in chronic pain and disability and anxiety.
Although life is pain (“Anyone who says differently is selling something.”), it is also joy. For my birthday earlier this month, my husband took me to a lovely place in Guerneville. We walked a beautiful, accessible trail in the Armstrong State Redwoods Natural Reserve, native land of the Kashaya Pomo people. I am grateful for time among the trees.
What Happened to Your Legs? 