Heterotypic Ossification

zam · 03-24-2006, 10:06 PM

I sent this to doctors and thought maybe someone else has had the same problem and has any recomindations. I have extensive Heterotypic Ossification and I trying to find the best Orthopedic surgeons, or any surgeon that have preformed this surgery. I have been in contact with a few but most have not performed many of these surgeries and also not as extensive. The bone is growing in both my left and right hip. My range in my hip is about 15 degrees this limits me from being able to put on shoes, lean foward, and perform other normal function of a T2 (with total hand and arm controll). The bone is still growing but it has slowed down since my last scan. I would greatly appritiate any recomindations! I can also be Emailed at zam1795@louisiana.edu
Thank you, Zachary Morris

SCI-Nurse · 03-25-2006, 04:42 PM

Has the HO matured (stopped actively growing)? This must be tested with bone scans. Doing surgery prior to this time can make HO much worse. I assume you have already taken medications to control this (Indocin, Didronel, etc.)?

HO surgery is VERY difficult. I agree you need to find a specialty surgeon who does a lot of these procedures, and even then, complications are common. This includes extensive bleeding and possible infection. You may need to travel to find someone who really knows what they are doing. With HO in the hips, often a girdlestone procedure is recommended over removal of the HO as the complication rate is much lower.

I would recommend contacting the SCI program at Spain Rehab Center in Birmingham, AL (Univ. of AL) as they have had many years of extensive research on HO (started when Dr. Sam Stover was there). I would also recommend talking to someone from TIRR in Houston. Sorry, I don't have any ideas for contacts in LA.

(KLD)

611 · 03-26-2006, 07:51 PM

I know a guy in La. that was referred by his physiatrist to Dallas for HO surgery on both hips.He was well satisfied.

cheesecake · 03-26-2006, 08:33 PM

Don't know about your insurance but there is the Hospital for Special Surgery in Manhatten that I know is very versed in this.

chick · 03-26-2006, 08:34 PM

611, do you know/or find out from the guy you know, who the surgeon/ortho in Dallas was? thx.

KLD, any contacts you are aware of in the midwest? thx.

Wise Young · 03-27-2006, 10:01 AM

Quote:

Originally Posted by zam

I sent this to doctors and thought maybe someone else has had the same problem and has any recomindations. I have extensive Heterotypic Ossification and I trying to find the best Orthopedic surgeons, or any surgeon that have preformed this surgery. I have been in contact with a few but most have not performed many of these surgeries and also not as extensive. The bone is growing in both my left and right hip. My range in my hip is about 15 degrees this limits me from being able to put on shoes, lean foward, and perform other normal function of a T2 (with total hand and arm controll). The bone is still growing but it has slowed down since my last scan. I would greatly appritiate any recomindations! I can also be Emailed at zam1795@louisiana.edu
Thank you, Zachary Morris

Zam,

There are medical treatments for heterotopic ossification. Are you taking them? You should be seeing whether you can stabilize the growth first before considering surgery. For example, non-steroidal anti-inflammatory drugs (such as indomethacin) will reduce the growth rate of the excess bone. Disodium etidronate may also help. http://www.wheelessonline.com/ortho/...ion_of_the_hip

Wise.

611 · 03-27-2006, 10:08 AM

Chick,I called the guy and left message for him to contact me as he is out of town at present time. Will provide name of Dr. when provided to me. This guy regained the abiity to dress himself after the surgeries.

JerryF504 · 03-27-2006, 07:04 PM

I have a doctor's appointment for this same thing tomorrow. I have been taking Didronel for about 3 weeks & it seems to be helping. Before I started taking it when I would lay flat on my back my knees where about 8 inches off the bed. Now when I lay flat my knees are less than 2 inches off the bed.

chick · 04-01-2006, 01:45 PM

611, thanks so much! I really appreciate your time and effort.

Lizbv · 04-01-2006, 02:03 PM

Quote:

There are medical treatments for heterotopic ossification. Are you taking them? You should be seeing whether you can stabilize the growth first before considering surgery. For example, non-steroidal anti-inflammatory drugs (such as indomethacin) will reduce the growth rate of the excess bone. Disodium etidronate may also help. http://www.wheelessonline.com/ortho/...ion_of_the_hip

Wise, any known side effects to these drugs?

Also, what may or may not be issues caused from using radiation? Obviously fertility is a big one. What else? Is getting radiation on hip area more of a challege for females than males?

03-24-2006, 10:06 PM	#1
zam Member Join Date: Feb 2006 Location: Louisiana Posts: 68	Heterotypic Ossification I sent this to doctors and thought maybe someone else has had the same problem and has any recomindations. I have extensive Heterotypic Ossification and I trying to find the best Orthopedic surgeons, or any surgeon that have preformed this surgery. I have been in contact with a few but most have not performed many of these surgeries and also not as extensive. The bone is growing in both my left and right hip. My range in my hip is about 15 degrees this limits me from being able to put on shoes, lean foward, and perform other normal function of a T2 (with total hand and arm controll). The bone is still growing but it has slowed down since my last scan. I would greatly appritiate any recomindations! I can also be Emailed at zam1795@louisiana.edu Thank you, Zachary Morris

03-26-2006, 08:33 PM	#4
cheesecake Moderator Join Date: Aug 2001 Location: USA Posts: 7,522	Don't know about your insurance but there is the Hospital for Special Surgery in Manhatten that I know is very versed in this. __________________ Every day I wake up is a good one

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03-25-2006, 04:42 PM	#2
SCI-Nurse Moderator Join Date: Jul 2001 Location: USA Posts: 41,319	Has the HO matured (stopped actively growing)? This must be tested with bone scans. Doing surgery prior to this time can make HO much worse. I assume you have already taken medications to control this (Indocin, Didronel, etc.)? HO surgery is VERY difficult. I agree you need to find a specialty surgeon who does a lot of these procedures, and even then, complications are common. This includes extensive bleeding and possible infection. You may need to travel to find someone who really knows what they are doing. With HO in the hips, often a girdlestone procedure is recommended over removal of the HO as the complication rate is much lower. I would recommend contacting the SCI program at Spain Rehab Center in Birmingham, AL (Univ. of AL) as they have had many years of extensive research on HO (started when Dr. Sam Stover was there). I would also recommend talking to someone from TIRR in Houston. Sorry, I don't have any ideas for contacts in LA. (KLD)

03-26-2006, 07:51 PM	#3
611 Banned Join Date: Oct 2001 Posts: 559	I know a guy in La. that was referred by his physiatrist to Dallas for HO surgery on both hips.He was well satisfied.

03-26-2006, 08:34 PM	#5
chick Senior Member Join Date: Jul 2003 Posts: 6,680	611, do you know/or find out from the guy you know, who the surgeon/ortho in Dallas was? thx. KLD, any contacts you are aware of in the midwest? thx.

03-27-2006, 10:08 AM	#7
611 Banned Join Date: Oct 2001 Posts: 559	Chick,I called the guy and left message for him to contact me as he is out of town at present time. Will provide name of Dr. when provided to me. This guy regained the abiity to dress himself after the surgeries.

03-27-2006, 07:04 PM	#8
JerryF504 Senior Member Join Date: Sep 2005 Location: Metairie, La. Posts: 128	I have a doctor's appointment for this same thing tomorrow. I have been taking Didronel for about 3 weeks & it seems to be helping. Before I started taking it when I would lay flat on my back my knees where about 8 inches off the bed. Now when I lay flat my knees are less than 2 inches off the bed.

04-01-2006, 01:45 PM	#9
chick Senior Member Join Date: Jul 2003 Posts: 6,680	611, thanks so much! I really appreciate your time and effort.