H.O. & SURGERY advice please

siskathy · 10-22-2002, 12:40 PM

I am a "retired" nurse as well as a caregiver to my brother who had an incomplete SCI to C5-7 on 8/8/01. His neurosurgeon has recently confirmed that my brother will be a walking quad. Ron is already walking in a therapy pool. He developed extensive heterotopic ossification in his right hip limiting his ROM to less than 50%. The surgeon we saw yesterday is admittedly not familiar with operating on H.O. The xrays/scans show at least 9 inches in length of stabilized bone growth, with the inferior portion appearing daggar-like. The whole hip area appears to be completely involved. Alk. phos. blood levels are stabilized. The doctor told us that the surgery would be very risky, require at least 8-10 pints of blood (need a good vascular surgeon on this case for sure!) & all the other ramifications of an extensive surgery. We are currently residing in No. California. My question to all of you is where we can find orthopedic and vascular surgeons who are familiar with extensive post-SCI H.O.?? Any doctors, nurses, or SCI individuals who have knowledge about this, we could use your help. Any and all help will be greatly appreciated. Thank you.

danw · 10-27-2002, 03:30 PM

SisKathy,

I am a walking quad who had severe HO in both hips. Had surgery to remove at Univ of Ala. Hosp in Birmingham, AL. Did my rehab at Spain Rehab Hosp., also a part of UAB Hosp. complex. I know this is a long way from you, but these people have dont this a lot. Perhaps you can contact Spain Rehab, and ask for a referral to someone closer to you. I'm sure they will be helpful. Good luck.

Dan

KLD · 10-27-2002, 07:18 PM

You should never have surgery on HO unless it has fully matured, as this can have a rebound effect and cause worse HO. It requires serial bone scans to determine this. Even under the best circumstances there is a lot of blood loss with this surgery.

It is such a specialized procedure that I would recommend only having it done by a surgeon who has done a lot of these on people with SCI. If I lived in Northern California I would consider only Stanford (as they work closely with the VA SCI Center in Palo Alto) and Santa Clara Valley Medical Center (San Jose). You can get an evaluation there, or call for a referral to an appropriately experienced physician in that area.

I would assume he is taking Didronel or Indocin now, correct? If not, he should be taking these meds until the bone scan shows no active growth.

Here is some additional good information on HO:

http://www.spinalcord.uab.edu/show.asp?durki=21566

siskathy · 10-28-2002, 04:16 PM

KLD & danw,
Thank you both very much for your input on my brother's HO.
Ron will be contacting the referrals you mentioned and see where we will go from there.
Kathy

10-22-2002, 12:40 PM	#1
siskathy Junior Member Join Date: Oct 2002 Posts: 3	H.O. & SURGERY advice please I am a "retired" nurse as well as a caregiver to my brother who had an incomplete SCI to C5-7 on 8/8/01. His neurosurgeon has recently confirmed that my brother will be a walking quad. Ron is already walking in a therapy pool. He developed extensive heterotopic ossification in his right hip limiting his ROM to less than 50%. The surgeon we saw yesterday is admittedly not familiar with operating on H.O. The xrays/scans show at least 9 inches in length of stabilized bone growth, with the inferior portion appearing daggar-like. The whole hip area appears to be completely involved. Alk. phos. blood levels are stabilized. The doctor told us that the surgery would be very risky, require at least 8-10 pints of blood (need a good vascular surgeon on this case for sure!) & all the other ramifications of an extensive surgery. We are currently residing in No. California. My question to all of you is where we can find orthopedic and vascular surgeons who are familiar with extensive post-SCI H.O.?? Any doctors, nurses, or SCI individuals who have knowledge about this, we could use your help. Any and all help will be greatly appreciated. Thank you.

10-27-2002, 03:30 PM	#2
danw Member Join Date: Apr 2002 Location: Florida Posts: 78	HO surgery SisKathy, I am a walking quad who had severe HO in both hips. Had surgery to remove at Univ of Ala. Hosp in Birmingham, AL. Did my rehab at Spain Rehab Hosp., also a part of UAB Hosp. complex. I know this is a long way from you, but these people have dont this a lot. Perhaps you can contact Spain Rehab, and ask for a referral to someone closer to you. I'm sure they will be helpful. Good luck. Dan

10-27-2002, 07:18 PM	#3
KLD Senior Member Join Date: Jul 2001 Location: California Posts: 865	HO You should never have surgery on HO unless it has fully matured, as this can have a rebound effect and cause worse HO. It requires serial bone scans to determine this. Even under the best circumstances there is a lot of blood loss with this surgery. It is such a specialized procedure that I would recommend only having it done by a surgeon who has done a lot of these on people with SCI. If I lived in Northern California I would consider only Stanford (as they work closely with the VA SCI Center in Palo Alto) and Santa Clara Valley Medical Center (San Jose). You can get an evaluation there, or call for a referral to an appropriately experienced physician in that area. I would assume he is taking Didronel or Indocin now, correct? If not, he should be taking these meds until the bone scan shows no active growth. Here is some additional good information on HO: http://www.spinalcord.uab.edu/show.asp?durki=21566

10-28-2002, 04:16 PM	#4
siskathy Junior Member Join Date: Oct 2002 Posts: 3	Thank you KLD & danw, Thank you both very much for your input on my brother's HO. Ron will be contacting the referrals you mentioned and see where we will go from there. Kathy

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