Ischiatomy to even out a pelvic tilt/obliquity...

[offthahook]

Okay, here's the story on this one.

I am about a T5 para from a GSW in 1996. I developed HO in my right hip something fierce and had surgery (after it was no longer hot) followed by radiation in 1998. That was on my RIGHT hip. I felt kinda crooked after that surgery, but figured I just needed to get used to all that bone being gone. I also developed horrible spasticity and got a Baclofen Pump in 1998. Lo and behold, my posture being jacked up was now thought to be due to HO in my left hip. In 1999, I had some more bone excised/radiation from the LEFT hip. Still kinda uncomfortable, but figured it was going to take some adjustment. Then, I had more HO (not reoccuring, different spot) removed/radiation from my left hip in 2000. I have had several Dr's look at my XRays and tell me how wonderful my hips look after these excisions, and that they can't tell I ever had any HO growth. My surgeon is very experienced and very thorough. We tried all kinds of seatbacks, cushions, exercises, therapy etc. to find a solution to me slumping to my right side. I have scoliosis, but it is compensatory in nature. Here's why (we think)...

I developed a decube on my right ischial tubrosity in about 2000 from my posture being off-- more weight on my right half. The wound surgeon (again, VERY experienced and thorough) had to excise part of my right IT area. Now, the thinking is this is throwing me off, causing my pelvic tilt and my compensatory scoliosis. I saw the film and my pelvis is hella tilted, lower on the right. The right side is definitely smoother and has less bone than my left side. My spine is actually pretty "straight" for things being as they are, BUT it has to curve to even out the pelvis. If you feel my right thigh/hip area while I'm seated, there is a ton of clearance between my tire and my jeans. On the left side, I damn near rub my jeans. I do rub slightly at times. I just can't ever get straight and I slump forward. The TSLO helps, but it isn't conducive for long term use. I am crooked and I slump forward.

So my Dr. wants to "even out" the obliquity in my pelvis and see what happens. He took one look at me in the chair and said "It's one of two things-- your spine or your pelvis." He said it is a minor surgery and won't really compromise anything long term. He said he didn't want to put me at any risk in case there is a cure some day. He's actually hopeful for a cure; rare from an ortho. trauma older type MD. He photoshopped what he would do to my left ischial area. Basically, he would grind/cut/slice it to match the other side and hopefully make my pelvis straight. He said that surgery would possibly give us a huge improvement for a relatively minor procedure vs. a full on fusion. He wasn't concerned that I would be compromised by having this area cut out. He said 1-2 days in a hospital and stay off it for 2 weeks, then see how it goes. He said it would improve my side to side posture, but not my front to back posture. He was pretty convinced this evening out would really help and he said cutting that "point" of the left IT and making it a larger surface area (like the right side) would be pretty safe. I just wonder if I will slump really far forward since my right side feels like it's not even there right now!

So, any input, thoughts, etc? I know surgery is a last resort, but nothing else has worked. I'm not excited about getting bone cut out, but I trust this guy and he has never done me wrong. EVERYTHING he has ever done, I have checked and researched to make sure he is on point. Dude has always been right and done ALL the possible tests, whether it be this board's feedback, another Dr. in another city (not just his group), PT's, etc. Any feedback is appreciated!

[SCI-Nurse]

Is this a plastic surgeon? I would definitely not want to do something like this without concurrance of your physiatrist, a plastic surgeon and the orthopedist. The problem with ischiectomy, as you have discovered, is causing pelvic obliquity. This tends to lead to ischial pressure ulcers on the opposite side.

The risk with removing both ischiums is that you then end up sitting on your pubic bone...this can lead to breakdown in the perineum, urethral fistulas and other problems.

Have you explored custom seating as an alternative?

(KLD)

[offthahook]

No, this MD is an Orthopedic Traumatologist. He has done some crazy reconstructive stuff on all kinds of patients; his waiting room can look like a freakshow with all the people having wires, rods, etc hanging off their limbs. He is knowledgeable about SCI, but he doesn't necessarily do them all the time. I know he does the HO excisions.

I would agree that it would tend to cause pressure ulcers on the opposite side, which feels like it is bearing all the weight right now. But, in 3 years since my free flap surgery, I have not had any skin issues. I'm uncomfortable as all get out, though! He seemed to think the ischiums would be even and provide a broader base for weight bearing vs. the point I have now on my left side (the untouched side).

I have consulted with a couple physiatrists and they agree that something "to the next level" needs to be done. I've tried numerous backs, cushions, buildups, supports, pressure maps, and on and on. EVeryone says to listen to the ortho MD and let him make the call. Trust me, he isn't just doing this on a whim. The whole thing is when I sit.. my left side is at one place and I keep going down on my right side a little farther (quite a bit actually). I don't think there is anything that will make my right "ass" higher since the issue is an internal one. SO my rib cage is all crooked and my breathing is compromised. Picture a car with one front tire have 10 # of air and the other one having 35 # of air. But, not being able to pump the low side up. I guess that's how I would say I roll...

Here's a little info. on my doctor. If you see something that absolutely jumps out at you, please let me know. He is well respected and well known around here. Thanks again!

http://www.orthoindy.com/physicians/bio.cfm <-- Brokaw, David

http://www.davebrokawmd.com/

[Wise Young]

You write exceedingly well and clearly. Here are my impressions:

1. I am not yet convinced that the scoliosis is due to your pelvic obliquity or to your spinal column. I suspect that it is the former. If you have damage to a vertebral body, it often causes a tilt. In order to keep yourself straight, the spine above and below will curve to compensate. The curvature in your spine may be complicated by seating, surgery, and other causes of pevlic tilt. At some point, it may not be possible to tell what caused what.

2. Your ortho doctor sounds like he knows what he is talking about. He is the person who has studied your problem the most. I agree with him when he says that it is either your spine or your pelvis. But what I am not sure that I understand is why surgery is necessary. Why can't this problem be corrected with change of your seating?

Wise.

[JenJen]

offthahook

I'm a T-10 from a GSW. I too have a severe obliquity and scoliosis due to the structural damage to my pedicles and my ribs. One physician suggested radical surgery similar to what has been suggest for you but I declined.

I have a build up under my roho on one side and supports on my backrest to keep me straight. It's been very helpful. I can sit in my chair all day without pain.

Before surgery, I suggest that you have a seating eval and try changes to your seating. Make sure you get pressure mapped too.

My own build up took place over a period of time because it hurt to have that side stretched out. It also affected my breathing for a short time as all of my muscles had to work differently to support me. I was able to manage the discomfort with ibuprofen. Your mileage may vary.

Good luck!

[611]

I would suggest trying different seating systems before having more surgery. However,you know what's best for you.

[offthahook]

You write exceedingly well and clearly. Here are my impressions:

1. I am not yet convinced that the scoliosis is due to your pelvic obliquity or to your spinal column. I suspect that it is the former. If you have damage to a vertebral body, it often causes a tilt. In order to keep yourself straight, the spine above and below will curve to compensate. The curvature in your spine may be complicated by seating, surgery, and other causes of pevlic tilt. At some point, it may not be possible to tell what caused what.

2. Your ortho doctor sounds like he knows what he is talking about. He is the person who has studied your problem the most. I agree with him when he says that it is either your spine or your pelvis. But what I am not sure that I understand is why surgery is necessary. Why can't this problem be corrected with change of your seating?

Wise.

In my opinion, after dealing with the unevenness for years, the pelvis is uneven. Sitting upright my right side is lower, but the ROHO kinda makes it less obvious to the average Joe. My nutsack is just buried and my right foot really doesn't rest right on my footrest. Looks like my right knee is higher than the left. Also, my right leg and foot absolutely will not stay on the footplate when I do not have shoes on. If I hit a small crack in the concrete or anything uneven, my right leg comes off the footplate when I'm wearing shoes. I would describe it like I'm missing my right hip and ass bone, but the left side is fine (if not higher). So, I think my center of gravity (PELVIS) is off and my upper half can only compensate so much. My lower extremities can't do much except constantly fall off the footplate!

My doctor says we will take the least resistive method to see what will help. He doesn't know what causes what and what would work. I've known him 10 years and he knows me well; he's done 5 surgeries and been in on other stuff just to consult and keep his game up. We have done a grip of tests, therapies, seating options, etc. to try to even me out, but we haven't gotten anywhere. The closest thing was the TSLO brace, which has its own issues.

offthahook

I'm a T-10 from a GSW. I too have a severe obliquity and scoliosis due to the structural damage to my pedicles and my ribs. One physician suggested radical surgery similar to what has been suggest for you but I declined.

I have a build up under my roho on one side and supports on my backrest to keep me straight. It's been very helpful. I can sit in my chair all day without pain.

Before surgery, I suggest that you have a seating eval and try changes to your seating. Make sure you get pressure mapped too.

My own build up took place over a period of time because it hurt to have that side stretched out. It also affected my breathing for a short time as all of my muscles had to work differently to support me. I was able to manage the discomfort with ibuprofen. Your mileage may vary.

Good luck!

I feel ya! I tried the buildups, the different cushions, the lateral supports, the mapping, and all that. For awhile, I went to the seating clinic WEEKLY after demoing different seating systems. I'm on my 5th wheelchair in only 10 years. Each one built to help my posture/positioning. I've been measured by a very capable OT whose husband is a para. and I've done the measuring myself. I've made adjustments as I can. I'm still just on slump on my right side, which messes up the mechanics of propelling a manual chair (shoulders, neck, ribcage). Are you uncomfortable when you lie down or drive? That's kinda why we're going with surgery because I need to be comfortable in other situations as well. I'm definitely crooked when I lie down; my left side (at the hip area) kinda sticks out, but my right hip area is tilted to the right. According to my doctor, this surgery isn't radical. I thought it sounded hardcore, but also that it made sense "on paper" and theoretically. MY breating is compromised for sure. I throw on the TSLO and I can breathe like a champ.

I would suggest trying different seating systems before having more surgery. However,you know what's best for you.

Very true, but we have tried that with very minimal, if any, results. My Dr. has told me to keep in mind that all this feeling of unevenness has predated the wound. We tried all sorts of seating options before the wound. I was uncomfortable then, but we were dealing with spasticity and HO surgeries. We thought those issues might be playing a part in the seating posture. Even after all the "correction", we're still not straight. He said this would be a much easier procedure than a spinal fusion. It's possible a spinal fusion will be needed. It's just hard to know without doing the ischial surgery first. Thanks for the input and keep it coming. I think I can answer any questions that would help figure this out!

[Bonita]

Offthehook and JenJen,

This is all fascinating to read. I too am a paraplegic due to a gunshot wound...with very similar issues. I'm level T-10. Wonder if this is just a coincidnence.

So far, I've only added some extra cushioning on one side that has helped...but hasn't exactly taken care of the problem. I'm 2 years post and first noticed this at about 1 year post. It seems to have gotten progressively worse. I haven't gotten a lot of answers, and the doctors don't seem to be too concerned, but it definitely aggravates my pain...so I guess I'll just have to keep pursuing the issue until I do get some answers/solutions.

Needless to say, I feel your pain.

Take care,

Jennifer

[offthahook]

I always heard that we GSW's get a lot more complications due to the penetrating nature of the wound and multi system failures. But we hardly ever require spine hardware during trauma surgery. HO, pain, spasms, and all that seem to be more likely in the GSW.

Bonita-- Yeah, they tried all that stuff with me, too. You have to ride it out. It made very little to no difference for me. My doctors were concerned, but wanted a lot of trial and demoing of different chairs, bolsters, build ups, lateral supports, cushions, etc. I told them I was going to get a sore on my butt because of how I transferred and how I sat. Then, I get a sore and they're like "Keep the pressure off." Huh, I tried telling you that was the problem. I have not been impressed with physiatrists (drug pushers), but the ortho guys are definitely in my corner. The ortho guys are not going to just jump in on a surgery until they are convinced you ABSOLUTELY need it and everything else hasn't worked. My posture slump progressed over time as well. Pushing uphill is a bear due to my obliquity; I used to be a monster on the hills