So there's good news and bad news with this post. I had my two week follow up yesterday with Dr. Z and it both surprised me yet confirmed what I really already knew.
Good news:
The FAI portion of the surgery went really well. He showed me the areas he shaved down and showed me how much ROM I have now which is about 105 degrees, which we were both ecstatic about. It might even improve more beyond that! My incisions are healing nicely, no issues there. My lateral thigh/bursa area are extremely tender to touch but it should resolve in the next few months.
Bad news:
He showed me my scope images and what he saw in the hip did not make him happy. My acetabulum (socket) is ok cartilage wise, no further softening since a year and a half ago, just some labral degeneration which he debrided. But my femoral head is looking awful. The cartilage was shredded to pieces. It looked like floating crab meat or parmasean cheese flakes. My femur also had bone spurs on it that reminded me of looking at the knobby part of a dog's chew bone that has the nubs all over it. He ground all the spurs down and smoothed all the cartilage down but overall he was really dissatisfied. He said that I have an arthritic hip and I have to be careful now. Total hip replacement came up a few times. As in, this is the next logical step. It doesn't sound like there's anything left to do to help save it. I asked about the intertrochanteric osteotomy to shift the bad part off the weight bearing zone and he said it'd be a last ditch "hail mary" effort. That didn't sound promising. It's not off the table, but it doesn't sound likely it would be beneficial. My guess is he's thinking it wouldn't delay the THR at this point and it'd be awful to put me through that to only go right into the THR, but we'll see.
It's definately more real now. Last year when the PAO healing was so touch and go, it seemed scary when he said it could be 2 months it could be 20 years before THR, but now after this scope, it's inevitable it's going to happen soon. He's telling me to avoid running and find another avenue of exercise, like swimming. He asked if I was ok with that and I told him no. He conceded to say gentle and very short jogging for 1 or 2 days a week would be "ok" but would really prefer me not to do it at all. So this means 5k's are out. I still plan to ask him if I can run one or two 5k's a year when I see him again in January, so I'll update on that.
Basically right now it's too hard for us to conclude how things are going to turn out because I'm only 2 weeks and a couple days post op. It's to irritated and fresh to know what's happening. He'll have a better handle on it when I come back again and I should know more about the condition of my hip.
At this time, 2 more weeks of crutches then wean. Start PT at 4 weeks post op. I'm cleared to start driving again (yay!) and go back to work at around 6 week mark unless I feel I can go back sooner. Right now I'm not ready for going to work yet. I'm still pretty tired and my leg still hurts alot when I use it more than 5 min.
I can shower without my bench though and I'm able to get dressed standing for the most part. I need a chair if I'm tired and the muscles are fatigued. I'm also capable of light house work (loading/unloading dishwasher and washer and dryer). No vacuuming yet, no bending over to clean bathroom yet.
PT instructions say no squatting or lunges so I won't be doing any type of exercise that requires those motions. I'm still just extremely upset about the no running thing. I really need to reflect on this and decide what is best for me and if I'm willing to give it up for the sake of saving my hip.
Tuesday, November 20, 2012
Thursday, November 15, 2012
Unrestricted
I can flex my hip freely to a little over 100 degrees! This is truly wonderful! This is the outcome I was hoping to achieve and thankfully it happened. I know my husband and family have been grimacing at the thought of "what if this didn't work". Well the hip is definately not a "good" hip anymore but now that I have free, unrestricted movement (which I've never experienced on this side) it is amazing. More so than what my left hip felt like after being stabilized with the PAO! I will report the exact amount of degree of flexion after my follow up appointment. I'm sure it's better than anything I've achieved before. But more than numbers is just truly NO blockage or a hard end point feeling. It's great!
My pain has improved too. It's not bad at all now. When I'm resting (laying down) it aches to the point of distraction, so I'm not sleeping well. Plus if I stand more than a couple minutes I get pretty achy. Moving helps ward it off. I still feel like something catches if I'm bending the hip, so I'm resigned to the fact that feeling will probably always be there.
I got my surgical report back and among the things Dr. Z found were chondrocalcinosis, bone spurs, frayed cartilage and labrum, softening of the cartilage and cartilage fissuring, synovitis, dense adhesions of the capsul and near the bursa and glute muscles, and of course the acetabular impingement. He burred down 7 mm of the impingement and what a difference! Among all the other work he did in my hip, this is what made the most impact, although he feels it's going to be the release of the adhesions. Time will tell. He's usually right.
I'm unusually atrophied in the thigh in my opinion. I think it might be because of all the other surgeries on this hip. But it has made walking unassisted really difficult. I can't go more than two steps without a pronounced limp, pain, and my knee locking up. But I am getting better at walking more "correctly", that is, with my foot pointed straight and not outward. I'm glad that the instructions say to use the crutches for 4 weeks. Even straight leg lifts and knee extensions are too painful and hard right now. My thigh shakes and there is a sharp pain initially with a dull ache afterward. It is only 2 weeks post op tomorrow, but I still have the mentality that I should be up and running by now. Not very realistic, I know. The majority of my discomfort right now is laterally and at the knee, except at night, then it's all the hip joint.
Mostly what excites me is that the feeling I have with this unrestricted hip flexion is that I feel as good about it as my left hip!! Dare I say it will last?? I can hope, what else do I have? 2 week follow up with Dr. Z is on Monday.
My pain has improved too. It's not bad at all now. When I'm resting (laying down) it aches to the point of distraction, so I'm not sleeping well. Plus if I stand more than a couple minutes I get pretty achy. Moving helps ward it off. I still feel like something catches if I'm bending the hip, so I'm resigned to the fact that feeling will probably always be there.
I got my surgical report back and among the things Dr. Z found were chondrocalcinosis, bone spurs, frayed cartilage and labrum, softening of the cartilage and cartilage fissuring, synovitis, dense adhesions of the capsul and near the bursa and glute muscles, and of course the acetabular impingement. He burred down 7 mm of the impingement and what a difference! Among all the other work he did in my hip, this is what made the most impact, although he feels it's going to be the release of the adhesions. Time will tell. He's usually right.
I'm unusually atrophied in the thigh in my opinion. I think it might be because of all the other surgeries on this hip. But it has made walking unassisted really difficult. I can't go more than two steps without a pronounced limp, pain, and my knee locking up. But I am getting better at walking more "correctly", that is, with my foot pointed straight and not outward. I'm glad that the instructions say to use the crutches for 4 weeks. Even straight leg lifts and knee extensions are too painful and hard right now. My thigh shakes and there is a sharp pain initially with a dull ache afterward. It is only 2 weeks post op tomorrow, but I still have the mentality that I should be up and running by now. Not very realistic, I know. The majority of my discomfort right now is laterally and at the knee, except at night, then it's all the hip joint.
Mostly what excites me is that the feeling I have with this unrestricted hip flexion is that I feel as good about it as my left hip!! Dare I say it will last?? I can hope, what else do I have? 2 week follow up with Dr. Z is on Monday.
Thursday, November 8, 2012
This recovery is out of control!
I'm 6 days post scope and already have more to share:
Just some interesting observations I've had in the last couple days:
1) my pain suddenly (not gradually) has become what I think is "out of proportion" with the surgery I had. It is intense and not letting up. It is from buttock wrapped around to almost the groin and down thigh to knee (in front only, butt and just below butt in back). Everything hurts it, movement, weight bearing, touch, thought....ok not thought but then when I do think about it it does hurt more! It's ridiculous. Pains meds don't touch it, ice doesn't work (I've found sitting on ice is the best at this point but it doesn't really do much or last), and heat is pointless. The quality of the pain stays the same. There's an underlying element of soreness, like an extremely bad sprain/strain, but throughout the whole thing is this piercing, throbbing, ache that becomes sharp enough to induce tears if I move too much or just the wrong way.
2) Interestingly enough, I've found that weight bearing flat footed aggravates the pain (I can walk with the crutches, slowly) but I started going back to old habits and placing all my weight on the outer edge of my foot (so pinkie toe down to the floor, big toe up to the ceiling) and standing or walking this way. It really helps relieve a lot of the weight bearing/walking pain. This position also aligns my leg nearly perfectly straight, which I have pointed out to both Dr's Z and T before and they had said it was because of the twist in my bones.
I guess I'll be walking on the outside of my foot til it stops hurting otherwise. I don't know what else to do or think.
The intensity of the pain, being "out of proportion" with what I had done, worries me slightly, but the nurse in me says that I don't have a fever, the area is not red or overly swollen or overly warm to touch, so I doubt it's an infection. The only thing I can plausibly come up with right now is a hematoma and the pressure it would cause and that might make this pain I'm having seem reasonable. Otherwise, I'm at loss. A scope recovery shouldn't hurt about as much as my SDD recovery.
Just some interesting observations I've had in the last couple days:
1) my pain suddenly (not gradually) has become what I think is "out of proportion" with the surgery I had. It is intense and not letting up. It is from buttock wrapped around to almost the groin and down thigh to knee (in front only, butt and just below butt in back). Everything hurts it, movement, weight bearing, touch, thought....ok not thought but then when I do think about it it does hurt more! It's ridiculous. Pains meds don't touch it, ice doesn't work (I've found sitting on ice is the best at this point but it doesn't really do much or last), and heat is pointless. The quality of the pain stays the same. There's an underlying element of soreness, like an extremely bad sprain/strain, but throughout the whole thing is this piercing, throbbing, ache that becomes sharp enough to induce tears if I move too much or just the wrong way.
2) Interestingly enough, I've found that weight bearing flat footed aggravates the pain (I can walk with the crutches, slowly) but I started going back to old habits and placing all my weight on the outer edge of my foot (so pinkie toe down to the floor, big toe up to the ceiling) and standing or walking this way. It really helps relieve a lot of the weight bearing/walking pain. This position also aligns my leg nearly perfectly straight, which I have pointed out to both Dr's Z and T before and they had said it was because of the twist in my bones.
I guess I'll be walking on the outside of my foot til it stops hurting otherwise. I don't know what else to do or think.
The intensity of the pain, being "out of proportion" with what I had done, worries me slightly, but the nurse in me says that I don't have a fever, the area is not red or overly swollen or overly warm to touch, so I doubt it's an infection. The only thing I can plausibly come up with right now is a hematoma and the pressure it would cause and that might make this pain I'm having seem reasonable. Otherwise, I'm at loss. A scope recovery shouldn't hurt about as much as my SDD recovery.
Tuesday, November 6, 2012
Post op hip scope recovery
It's day 4 post op and things are well. I'm allowed to weight bear as tolerated, no real restrictions, can use the stationary bike without resistance, and just need crutches for 4 weeks. I've cheated already and gone to 1 crutch short distances but I'm not ready to go without crutches yet. I have a limp. It doesn't hurt much to put weight down, but lifting my leg hurts. Sitting too long hurts. Actually sitting on my butt is what hurts. I think there's just a big bruise there though.
What's been most painful though is my back. I can't lay on my back or sit for long without it beginning to give me a piercing ache. I can't say what it's from, but I would imagine the traction while in the scope may have aggravated it. The pain is in the right SI to across my mid upper back. It really kind of overshadows the hip pain.
Besides that, a run down of how much easier this recovery has been for me over the SDD/PAOs:
Post op day 1: in hospital, d/c'd by 12-1 pm, home and able to stay awake til normal bedtime, not feeling horribly emotional. Pain is controlled.
Post op day 2: had mom stay the day with me since hubby had to go to work. I literally slept the entire day, didn't really do anything. Took dressings off and showered in the evening, and didn't need any help showering (getting in or out). Used the shower bench to reach lower extremeties but was able to stand majority of time. Hubby helped put on pants and socks because right hip/knee still so swollen from scope fluids.
Post op day 3: on my own majority of the day, taking care of the dogs myself (1 lab, 1 boston terrier). Hubby pre-planned day and made sure everything was out of my way so I could crutch safely and also set up my table with everything I'd need next to my chair. I did really well, tired and sore from more movement, but was able to go on first outing later in the afternoon too and then I came home and crashed.
Sleeping on back in CPM sooo uncomfortable that I finally gave it up at 4 am and turned on my side with pillows. Way better sleep.
Post op day 4 (today): again, alone, phone calls from mom to make sure I'm ok and I am. Really reflecting on things my husband discussed with me that Dr. Z brought up after surgery. I'll elaborate more after my 2 week check up, when I can understand it better.
Crutching is easy, showering is easy and the shower bench is just a comfort measure if I need it. I'm able to bend my leg easier now (still hurts) to put pants and socks on, but do need to sit to do that. My appetite is still poor, but the nauseated feeling has gone away, a lot faster than other times.
All in all I'm much more independent with this recovery. It helps that I'm experienced too, because I remember 3.5 years ago when I had my first surgery ever, a hip scope, which wasn't near as involved as this one, I was slow and cautious to a fault with recovery. Now it's second nature, and things are coming along so much better.
Plan is to send the CPM back this weekend and wait for the post op follow up to talk about the results and how I'm progressing. I also have my ear implant revision surgery coming up in 3.5 weeks to get ready for. I do need to set up my classes for my BSN as well while I'm off work. The great thing about this type of recovery is that I feel stronger both mentally and physically than I did with the SDD/PAOs and feel like I can probably accomplish this, and in a shorter time frame.
This week is about resting though and watching the presidential election unfold.
On a scale of 1-10 for discomfort for a hip scope over an open hip surgery, I'd say I'm at a 3-4, whereas I'd have been about a 6 with the opens. I think the only reason I'm even rating it as high as a 3 is because there is arthritis in my hip and because of my back.
What's been most painful though is my back. I can't lay on my back or sit for long without it beginning to give me a piercing ache. I can't say what it's from, but I would imagine the traction while in the scope may have aggravated it. The pain is in the right SI to across my mid upper back. It really kind of overshadows the hip pain.
Besides that, a run down of how much easier this recovery has been for me over the SDD/PAOs:
Post op day 1: in hospital, d/c'd by 12-1 pm, home and able to stay awake til normal bedtime, not feeling horribly emotional. Pain is controlled.
Post op day 2: had mom stay the day with me since hubby had to go to work. I literally slept the entire day, didn't really do anything. Took dressings off and showered in the evening, and didn't need any help showering (getting in or out). Used the shower bench to reach lower extremeties but was able to stand majority of time. Hubby helped put on pants and socks because right hip/knee still so swollen from scope fluids.
Post op day 3: on my own majority of the day, taking care of the dogs myself (1 lab, 1 boston terrier). Hubby pre-planned day and made sure everything was out of my way so I could crutch safely and also set up my table with everything I'd need next to my chair. I did really well, tired and sore from more movement, but was able to go on first outing later in the afternoon too and then I came home and crashed.
Sleeping on back in CPM sooo uncomfortable that I finally gave it up at 4 am and turned on my side with pillows. Way better sleep.
Post op day 4 (today): again, alone, phone calls from mom to make sure I'm ok and I am. Really reflecting on things my husband discussed with me that Dr. Z brought up after surgery. I'll elaborate more after my 2 week check up, when I can understand it better.
Crutching is easy, showering is easy and the shower bench is just a comfort measure if I need it. I'm able to bend my leg easier now (still hurts) to put pants and socks on, but do need to sit to do that. My appetite is still poor, but the nauseated feeling has gone away, a lot faster than other times.
All in all I'm much more independent with this recovery. It helps that I'm experienced too, because I remember 3.5 years ago when I had my first surgery ever, a hip scope, which wasn't near as involved as this one, I was slow and cautious to a fault with recovery. Now it's second nature, and things are coming along so much better.
Plan is to send the CPM back this weekend and wait for the post op follow up to talk about the results and how I'm progressing. I also have my ear implant revision surgery coming up in 3.5 weeks to get ready for. I do need to set up my classes for my BSN as well while I'm off work. The great thing about this type of recovery is that I feel stronger both mentally and physically than I did with the SDD/PAOs and feel like I can probably accomplish this, and in a shorter time frame.
This week is about resting though and watching the presidential election unfold.
On a scale of 1-10 for discomfort for a hip scope over an open hip surgery, I'd say I'm at a 3-4, whereas I'd have been about a 6 with the opens. I think the only reason I'm even rating it as high as a 3 is because there is arthritis in my hip and because of my back.
Sunday, November 4, 2012
3rd hip scope (has to be) the charm
Surgery went as planned on Friday, and I finally wasn't the last case of the day as I usually happen to be, but it was still a late case. I was admitted at 3 pm and went back to OR sometime between 5-6 pm. The admitting nurse told me I'd be getting a block for this surgery along with general anesthesia. A block is a nerve block in the hip region, so it's much different than a spinal. The anesthetist numbs the front of the hip before finding the nerve to numb after the nurse gives you versed and fentanyl to sedate you and keep the block from hurting. In all the experience was fine, and I remember everything which is cool. The block took effect in my knee and I thought maybe it would get to my hip in time for surgery but it didn't. I woke up in extreme pain, a lot like the SDD because the block did not work. I also couldn't pee again and was straight cathed twice (once in recovery and once in my room on the floor). This bought me a guaranteed overnight stay since urine that is obstructed leads to kidney damage. My recovery nurse was amazing though and I'll be sending in a letter of gratitude to her soon. All nurses should get recognition when they give good care, it's never mentioned enough!
Dr. Z explained to my family that he removed some impingement on the socket and removed a lot of scar tissue around the bursa and underneath the SDD incision, which he thinks will really help. But what my husband felt like he focused on most was the arthritis he found in the hip. He described it as being much more than what would be expected in a hip of someone my age, even with the dysplasia and FAI. He wasn't sure if this scope would help me but also said that some people can have a large amount of arthritis and hardly know it, while others have a small amount and have terrible pain. Basically at this point he told my husband he wasn't going to stop me from running or enjoying other activities that are hard on the hips unless it starts to hurt, then he'd advise to back off whatever hurts. Pain is to be my guide. I will be asking him at my 2 week follow up a bit more on this point. I also need to ask him about the degree of flexion in my hip that he obtained while I was under anesthesia. He saw me the day I was discharged and asked me to flex my hip and see if it hurt. I tried and it was so tight with swelling from the arthroscopy fluid that it was hard to do but I think it did feel less restricted. He had said he couldn't get it to go past 90 degrees when I was under but I don't know if he meant before or after the scope. Being that I only had about 80 degrees before it could be either way.
This scope is easier on my hip in the fact that I'm allowed full weight bearing as tolerated on crutches and have no restrictions to movement. I can use a stationary bike with no resistance right away. I need to use the CPM for 2 weeks, be on crutches for 4 weeks, and originally we had planned 6 weeks off work but after I see him on the 19th for my post op, we may decide I'm ready for work sooner!
It doesn't really hurt much to put weight down on my hip but moving it forward and to the side hurts a lot. I have 3 key holes to make a total of 7 now. I am surprised at the amount of pain it caused initially but now things are way better, at just two days out.
I'm still experiencing the stomach issue where I have no appetite and don't feel well after I do eat or drink anything. Best thing I've found that works is the BRAT diet (bananas, rice, apples, toast). It's bland and easy on the tummy. I've managed a few bites of rice and toast.
I also took my dressings off today and even as a nurse, it disgusted me. It was very bloody, which Dr. Z had said it would be. I'm still pretty swollen from waist to knee. I have a sausage leg! But I got to shower and that made up for it. My husband and parents have been truly amazing again, and I'll never be able to make up for it, but I do love them so much!
I'm going to end this with a running photo. Although I didn't end up running in the fun run in Plymouth the weekend before my surgery (work conflict) I did happen to run a 5k distance (actually just a little further than 3.1 miles!) on the treadmill at home the Wednesday before surgery...and here's the proof!
Dr. Z explained to my family that he removed some impingement on the socket and removed a lot of scar tissue around the bursa and underneath the SDD incision, which he thinks will really help. But what my husband felt like he focused on most was the arthritis he found in the hip. He described it as being much more than what would be expected in a hip of someone my age, even with the dysplasia and FAI. He wasn't sure if this scope would help me but also said that some people can have a large amount of arthritis and hardly know it, while others have a small amount and have terrible pain. Basically at this point he told my husband he wasn't going to stop me from running or enjoying other activities that are hard on the hips unless it starts to hurt, then he'd advise to back off whatever hurts. Pain is to be my guide. I will be asking him at my 2 week follow up a bit more on this point. I also need to ask him about the degree of flexion in my hip that he obtained while I was under anesthesia. He saw me the day I was discharged and asked me to flex my hip and see if it hurt. I tried and it was so tight with swelling from the arthroscopy fluid that it was hard to do but I think it did feel less restricted. He had said he couldn't get it to go past 90 degrees when I was under but I don't know if he meant before or after the scope. Being that I only had about 80 degrees before it could be either way.
This scope is easier on my hip in the fact that I'm allowed full weight bearing as tolerated on crutches and have no restrictions to movement. I can use a stationary bike with no resistance right away. I need to use the CPM for 2 weeks, be on crutches for 4 weeks, and originally we had planned 6 weeks off work but after I see him on the 19th for my post op, we may decide I'm ready for work sooner!
It doesn't really hurt much to put weight down on my hip but moving it forward and to the side hurts a lot. I have 3 key holes to make a total of 7 now. I am surprised at the amount of pain it caused initially but now things are way better, at just two days out.
I'm still experiencing the stomach issue where I have no appetite and don't feel well after I do eat or drink anything. Best thing I've found that works is the BRAT diet (bananas, rice, apples, toast). It's bland and easy on the tummy. I've managed a few bites of rice and toast.
I also took my dressings off today and even as a nurse, it disgusted me. It was very bloody, which Dr. Z had said it would be. I'm still pretty swollen from waist to knee. I have a sausage leg! But I got to shower and that made up for it. My husband and parents have been truly amazing again, and I'll never be able to make up for it, but I do love them so much!
I'm going to end this with a running photo. Although I didn't end up running in the fun run in Plymouth the weekend before my surgery (work conflict) I did happen to run a 5k distance (actually just a little further than 3.1 miles!) on the treadmill at home the Wednesday before surgery...and here's the proof!
Monday, October 15, 2012
Ultrasounds are hip!
Of all the imaging tests I've had done these last few years, the ultrasound is the easiest, least invasive, least expensive, and least radiation exposure....and the most diagnostic. For me at least! The radiologist Dr. Z wanted specifically is amazing. We deduced I do not have hernias, tears in my muscles, or pubic symphysis inflammation. But I do have an enlarged labrum ("huge!" as the radiologist put it), and a good bit of soft tissue being impinged in the front of the hip. My problem is too much bone now in the AIIS, or anterior inferior iliac spine. I *think* this is what Dr. Z was telling me anyway. Without a diagram or model to look at, it was hard for him to explain over the phone. Basically I'll need bone work. He's going to decompress the hip, or shave back some extra bone. He'll also take a look inside, and look at the bursa. He explained there would not be a risk for morbidity (making the hip worse), but the recovery will be more involved than what I'd been told before. Also he did say I have definate arthritic changes, so I won't have complete relief, but should have enough for now. I'm great with that. I am fully aware this hip is not as good as my left but it does have some room for improvement. I'll take anything at this point.
I'm coming up on my 2 year LPAO anniversary next month, and a week following that will be my 3 year RSDD anniversary. It really has just flown by. My left hip feels terrific compared to how it felt before! I do have popping and snapping that hurts but no more giving out. What's weird about the left leg though is that it is still the leg that fatigues much faster than my right, even with my right having a ton of work on it. All in all, worth every moment, good and bad.
I'm coming up on my 2 year LPAO anniversary next month, and a week following that will be my 3 year RSDD anniversary. It really has just flown by. My left hip feels terrific compared to how it felt before! I do have popping and snapping that hurts but no more giving out. What's weird about the left leg though is that it is still the leg that fatigues much faster than my right, even with my right having a ton of work on it. All in all, worth every moment, good and bad.
Wednesday, September 26, 2012
Plot twist
Things have taken another interesting turn for me and have shaken and stirred everything up. But now the dust is settling and I can breathe easy again, I hope! To summarize, I am still running but am unable to get past 1-1.3 miles. My legs simply quit at that point. It isn't the pain that is stopping me (I can mentally block that for a good while) but just purely muscle fatigue. It isn't the same thing as they're "weak" because my muscles are now nice and toned and can harden right up, but plain and simple they just quit working. Then the aches and pains really start. So, besides that I'm still planning to do the Fun Run in October.
A few weeks ago I had a really bad sharp pain in my symphysis pubis when my cat pushed off my lap. It happened a few times with that and a few times with twisting movements. My right SI joint also felt/feels awfully painful, like I need to shift it or pop it, and the pain feels like it's ripping apart sometimes. So since the pubic pain was new, I called Dr. Z about it. He was curious about this and said it's enough to prompt him to order inflammatory blood tests on me. If it's not an inflammatory condition then it's definately malalignment. Blood work was done right away, and a few days later, I got the call that a test called HLA B27 is positive. This is a genetic marker for a rheumatoid disease called ankylosing spondylitis, or AS. Basically it is an inflammatory arthritis that eventually fuses the spine and SI joints, while also affecting the shoulders, hips, knees and ankles. I then had to see my rheumatologist to determine if I really do have AS, and if so, can I still have surgery on my hip?
The rheumatologist is the same who diagnosed my EDS and hypermobility. He eased my worries by telling me that although I have the symptoms of AS, the signs are not there yet (no sacroiliitis on xray, nor spurring or bambooing of the spine). But, if my back/SI pain persists or worsens, then we need to get a CT and/or bone scan because these are more sensitive than xrays, and usually damage takes a long time to show up. Once that happens, then we talk about treatment. But that's another blog, another time.
He said that even if I had active AS, he would/will still clear me for surgery. So the hip scope is still a go.
Dr. Z is fine with it but does want me to come down before surgery to have a pelvic ultrasound. At first it sounded like we would be doing a pubic symphysis injection and rectus femoris and SI joint injection too. But now I'm not sure. This new twist in events has got all of us with our panties in a bunch. I had a pretty long and serious heart to heart with Dr. Z. Beyond him being unhappy that AS could be in the picture, he is worried what he's going to find in the hip and he's worried he's going to make it worse.
Last, I finally confessed I saw Dr. T about my miserable malalignment and the recommendation was for the derotation of the femur and tibias. I wanted to mention this to him because the rheumy felt most of my pain really is from my malalignment. Dr. Z was actually very cool about it. He is glad I saw Dr. T since he is one of the best in the country for derotations. As he put it, two heads are better than one and getting second opinions is a good thing. I mentioned wanting to stick with him (Dr. Z) for the derotations if I ultimately decide to go that route, but....Dr. Z deferred and told me I really should have Dr. T perform that surgery. He told me that if he or his wife were going to have that done that he'd want Dr. T to do it over anyone else.
But, as for now, I've got 4 weeks left before my run and 5 weeks before my scope. I'm very busy, busy, busy in the coming weeks! Lots of changes, lots of news, and lots of self reflection to decide what's going to be best for me in the long run.
A few weeks ago I had a really bad sharp pain in my symphysis pubis when my cat pushed off my lap. It happened a few times with that and a few times with twisting movements. My right SI joint also felt/feels awfully painful, like I need to shift it or pop it, and the pain feels like it's ripping apart sometimes. So since the pubic pain was new, I called Dr. Z about it. He was curious about this and said it's enough to prompt him to order inflammatory blood tests on me. If it's not an inflammatory condition then it's definately malalignment. Blood work was done right away, and a few days later, I got the call that a test called HLA B27 is positive. This is a genetic marker for a rheumatoid disease called ankylosing spondylitis, or AS. Basically it is an inflammatory arthritis that eventually fuses the spine and SI joints, while also affecting the shoulders, hips, knees and ankles. I then had to see my rheumatologist to determine if I really do have AS, and if so, can I still have surgery on my hip?
The rheumatologist is the same who diagnosed my EDS and hypermobility. He eased my worries by telling me that although I have the symptoms of AS, the signs are not there yet (no sacroiliitis on xray, nor spurring or bambooing of the spine). But, if my back/SI pain persists or worsens, then we need to get a CT and/or bone scan because these are more sensitive than xrays, and usually damage takes a long time to show up. Once that happens, then we talk about treatment. But that's another blog, another time.
He said that even if I had active AS, he would/will still clear me for surgery. So the hip scope is still a go.
Dr. Z is fine with it but does want me to come down before surgery to have a pelvic ultrasound. At first it sounded like we would be doing a pubic symphysis injection and rectus femoris and SI joint injection too. But now I'm not sure. This new twist in events has got all of us with our panties in a bunch. I had a pretty long and serious heart to heart with Dr. Z. Beyond him being unhappy that AS could be in the picture, he is worried what he's going to find in the hip and he's worried he's going to make it worse.
Last, I finally confessed I saw Dr. T about my miserable malalignment and the recommendation was for the derotation of the femur and tibias. I wanted to mention this to him because the rheumy felt most of my pain really is from my malalignment. Dr. Z was actually very cool about it. He is glad I saw Dr. T since he is one of the best in the country for derotations. As he put it, two heads are better than one and getting second opinions is a good thing. I mentioned wanting to stick with him (Dr. Z) for the derotations if I ultimately decide to go that route, but....Dr. Z deferred and told me I really should have Dr. T perform that surgery. He told me that if he or his wife were going to have that done that he'd want Dr. T to do it over anyone else.
But, as for now, I've got 4 weeks left before my run and 5 weeks before my scope. I'm very busy, busy, busy in the coming weeks! Lots of changes, lots of news, and lots of self reflection to decide what's going to be best for me in the long run.
Sunday, August 19, 2012
Steroids, knee buckling, and running, oh my!
I had the right hip injected with kenolog and marcaine on Friday by my PCP and wow!! He is smooth! I didn't feel anything, not even the initial poke, and he didn't even use lidocaine. Who doesn't love that?! I do believe I will be going to him for my injections from now on. The steroid injection I had in July by Dr. Z either didn't take, or there just wasn't enough in it, so I had asked if it would be alright for one more injection before surgery. Dr. Z said it was fine as long as I waited 6 weeks from the one he had done and to make sure it wasn't less than 6 weeks out from surgery. I had it done exactly 6 weeks after the injection in July. I think there is a bit of a steroid flare, because things are sore, but my PCP said to expect that. However, my flexion pain has improved. I can bend my right hip further before I feel the deep sharp pain. I still have just a generalized ache all around, especially in the groin and SI joint and buttock. I've also become more aware of my SDD incision site where the muscles were seperated to be quite painful. The hernia site is really bad, which is just south of the scar. I hope Dr. Z was serious when he said we could get Plastics involved once the hip was settled.
The other unsettling thing is my left knee lately. I have had three episodes of complete giving out/buckling when going to stand up and take my first step. I also am having a harder time controlling the knee/leg staying straight on when I walk. It wants to twist way inward and feels "floppy". The knee cap itself has a nagging pain that is not something I can ignore and I try to rub it out, but then it starts to slide too far left or right and it snaps or clunks over one edge or the other of my femur and that HURTS. With each step I take, I feel a click or pop in my knee, more medial or inside, when I put full weight down and the leg straightens through full extension. That's more gross feeling than painful. But I don't like this at all.
And it's frustrating because I am limited to fixing things one at a time due to work and because the OS says so.
We still haven't narrowed down a run yet, but some of our family members are so excited and proud of this goal that they are going to run it too or at least be there to watch it happen! I only have about 6 weeks left to get my endurance and stamina down before doing a run, so God help me, I'm going to need it!
The other unsettling thing is my left knee lately. I have had three episodes of complete giving out/buckling when going to stand up and take my first step. I also am having a harder time controlling the knee/leg staying straight on when I walk. It wants to twist way inward and feels "floppy". The knee cap itself has a nagging pain that is not something I can ignore and I try to rub it out, but then it starts to slide too far left or right and it snaps or clunks over one edge or the other of my femur and that HURTS. With each step I take, I feel a click or pop in my knee, more medial or inside, when I put full weight down and the leg straightens through full extension. That's more gross feeling than painful. But I don't like this at all.
And it's frustrating because I am limited to fixing things one at a time due to work and because the OS says so.
We still haven't narrowed down a run yet, but some of our family members are so excited and proud of this goal that they are going to run it too or at least be there to watch it happen! I only have about 6 weeks left to get my endurance and stamina down before doing a run, so God help me, I'm going to need it!
Thursday, August 16, 2012
Determination and small dreams
It's official. I'm addicted. I am back on the treadmill, my little dream of doing some sort of organized run still alive. My husband continues to inspire me with his run times and marathons, and in some ways, I hope to inspire him by overcoming my "chains" and doing something I didn't think I'd have the strength, stamina, or drive to do ever again...try a 5k. Well, I'm realistic and I know a 5k probably isn't going to happen so I've set my sights on a 1 mile "Fun Run". I'm letting the hubby pick the run, and we'll do it together. The plan is for this fall, probably mid to late October. Actually setting a date/run makes me more determined and encouraged to keep up on my training.
So, with that being said, Tuesday I was jogging and kept thinking "I'll just keep going til I hit a quarter mile" then "I can do half a mile", then next thing I know I've completed a whole mile without stopping! I surprised myself and was pretty pleased. This I know I can do. I'll keep at it and build up my endurance because I don't want to lose any ground I'm gaining for this run. If you have gimpy hips, you know what I'm talking about! Letting even just a few days go by with no activity can set you back to square one.
So how are the hips doing with this? At just over 1.5 years out, left is good, not too many complaints, some popping here and there. At just over a year out, right is status quo, it hurts a lot. It's crunchy and achy. It's just never gotten better. That's why we're scoping in November. Things I do to help my hips/legs through the bad days: I ice and heat a lot, I sleep with a heat pad on my legs, I use Salonpas patches on my quads and just below my knee caps and I elevate my legs as much as I can. I also have knee braces and orthotics for my shoes, but I don't feel the inserts really help. I like to use Bio Freeze gel too and massage that into my legs. That's a nice treat. What's even nicer is getting my hubby to do it, but he hates the smell.
I thought that my hips and miserable malalignment would keep me from being able to run, but my pcp put me on a new pain med a few weeks ago and since the first week went by on it, I've felt like a new lease on life! It has really made a difference on my pain quality, sleep quality, and just overall life quality. This is the same medicine my neuro-sleep doctor was going to put me on because of severe restless leg syndrome/pain, so I am in a win/win situation. This medicine makes my pain tolerable and gives me a glimpse of the life I can have once everything is fixed. It's nice! It's not something I want to be on for a long time though. But I think it's the bridge to getting where I need to be.
So, with that being said, Tuesday I was jogging and kept thinking "I'll just keep going til I hit a quarter mile" then "I can do half a mile", then next thing I know I've completed a whole mile without stopping! I surprised myself and was pretty pleased. This I know I can do. I'll keep at it and build up my endurance because I don't want to lose any ground I'm gaining for this run. If you have gimpy hips, you know what I'm talking about! Letting even just a few days go by with no activity can set you back to square one.
So how are the hips doing with this? At just over 1.5 years out, left is good, not too many complaints, some popping here and there. At just over a year out, right is status quo, it hurts a lot. It's crunchy and achy. It's just never gotten better. That's why we're scoping in November. Things I do to help my hips/legs through the bad days: I ice and heat a lot, I sleep with a heat pad on my legs, I use Salonpas patches on my quads and just below my knee caps and I elevate my legs as much as I can. I also have knee braces and orthotics for my shoes, but I don't feel the inserts really help. I like to use Bio Freeze gel too and massage that into my legs. That's a nice treat. What's even nicer is getting my hubby to do it, but he hates the smell.
I thought that my hips and miserable malalignment would keep me from being able to run, but my pcp put me on a new pain med a few weeks ago and since the first week went by on it, I've felt like a new lease on life! It has really made a difference on my pain quality, sleep quality, and just overall life quality. This is the same medicine my neuro-sleep doctor was going to put me on because of severe restless leg syndrome/pain, so I am in a win/win situation. This medicine makes my pain tolerable and gives me a glimpse of the life I can have once everything is fixed. It's nice! It's not something I want to be on for a long time though. But I think it's the bridge to getting where I need to be.
Saturday, July 14, 2012
Scoping out November
The appt turned into two separate appts. The first one we took the one year xrays (looks the same, really no changes) and did an extra-articular injection of the right hip, or an injection to the surrounding tissue to see if the outer edge of the socket was causing pain when being flexed. I was to call Dr. Z in a few hours to let him know if it helped.
No dice. So he wanted me to set up an appt to get an xray guided intra-articular hip injection at the hospital. I was going on vacation first, then would get the injection done.
The second appt I met Dr. Z at the hospital and was injected in the radiology suite, much like getting an arthrogram. Only the numbing spray he used didn't numb my skin at all, so I felt the whole injection. Ouch! However, the injection really hit the spot and I noticed a difference almost immediately. Same instructions this time too, only call him on Monday since he'd be in surgery the rest of the day.
I was able to sit without pain, lengthen my stride without pain, bring my knee fully against my chest with NO pain at all, and internally rotate my leg while brought up close to me without pain. I'd say the injection lasted about 5 hours. Then the pain came back. I think I will sound really cliche here, but I didn't realize how much pain I've been in!
I talked to Dr. Z about the hip injection working really well for me and he said the only option at this point is MRI (which I can't do) or hip scope. I chose to do the scope. I'm at a point where I feel like I want to try to do something about it. He made sure I understood that he may not be able to actually do anything once in the joint. I reassured him that I know, but I need to try, just to know we've done all we can with the hip. I want so bad to have the right feeling like the left.
The hip scope is set for November 2nd. I don't really expect much, but hopefully he'll be able to clean up adhesions or spurs/HO. I hope it's not just my cartilage deteriorating. Basically that would mean waiting for it to degenerate to the point of needing a replacement. That could take a long time. Or it could be fast. Either way, I'm not ready for it to be my cartilage.
No dice. So he wanted me to set up an appt to get an xray guided intra-articular hip injection at the hospital. I was going on vacation first, then would get the injection done.
The second appt I met Dr. Z at the hospital and was injected in the radiology suite, much like getting an arthrogram. Only the numbing spray he used didn't numb my skin at all, so I felt the whole injection. Ouch! However, the injection really hit the spot and I noticed a difference almost immediately. Same instructions this time too, only call him on Monday since he'd be in surgery the rest of the day.
I was able to sit without pain, lengthen my stride without pain, bring my knee fully against my chest with NO pain at all, and internally rotate my leg while brought up close to me without pain. I'd say the injection lasted about 5 hours. Then the pain came back. I think I will sound really cliche here, but I didn't realize how much pain I've been in!
I talked to Dr. Z about the hip injection working really well for me and he said the only option at this point is MRI (which I can't do) or hip scope. I chose to do the scope. I'm at a point where I feel like I want to try to do something about it. He made sure I understood that he may not be able to actually do anything once in the joint. I reassured him that I know, but I need to try, just to know we've done all we can with the hip. I want so bad to have the right feeling like the left.
The hip scope is set for November 2nd. I don't really expect much, but hopefully he'll be able to clean up adhesions or spurs/HO. I hope it's not just my cartilage deteriorating. Basically that would mean waiting for it to degenerate to the point of needing a replacement. That could take a long time. Or it could be fast. Either way, I'm not ready for it to be my cartilage.
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