Comments on: Osteonecrosis or Avascular Necrosis (AVN) http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/ The Bathroom Sink Wed, 11 Jan 2012 03:08:03 +0000 hourly 1 http://wordpress.org/?v=3.3.1 By: sara http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7934 sara Thu, 19 May 2011 02:18:04 +0000 http://ourthursday.com/?p=405#comment-7934 Thank you so much for your website and blog. My husband is 37 and diagnosed with AVN and we have no insurance. We have been to several dr but they will not see us or treat the condition or even give us any prognosis. I contacted Dr Einhorn's office to day and they said to send them our X-rays and MRI's and would look at them for us. I have hope maybe again. Oh yea my husband is self-employed and it is hard to take sometimes. Once again thank you for some support. Thank you so much for your website and blog. My husband is 37 and diagnosed with AVN and we have no insurance. We have been to several dr but they will not see us or treat the condition or even give us any prognosis. I contacted Dr Einhorn’s office to day and they said to send them our X-rays and MRI’s and would look at them for us. I have hope maybe again. Oh yea my husband is self-employed and it is hard to take sometimes. Once again thank you for some support.

]]> By: julia http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7876 julia Fri, 06 May 2011 01:21:47 +0000 http://ourthursday.com/?p=405#comment-7876 @Easa....thanks for the info. I also had the dreaded feeling of same old same old from all the doctors, giving just the ol' adage of THR. I think these docs have all got the THR in their brain as the newest best surgery out there and forgot about what it is to be a patient facing such a huge decision with so few options to choose from to be able to walk again. I think in general most docs are well meaning and really want to help their patients to have a better life. Unfortunatley I have found through this process that the orthopedic surgeons have so much arrogance about them that what they say is the ONLY way for you to go. Mostly none are willing to find other options even when it is something that they would not do or really do not know much about it. To not smirk at you when you mention grafting or stem cell and then try to "sell" you out of making different choices. I have learned a lot through this and even though the choice for my son is to get a new hip, not a choice I would ever want to make for a 16 year old, but make it anyway, I am determined to make this surgery option the best for my boy as I can. I no longer will see a doctor that my son does not like, nor will I ever stay with a doctor who pisses me off so much I want to strangle him. I will not choose a doctor just because someone else lovessss them, I will not pick a doctor out of the phone book because I am desparate to find anyone to help my kid! I will find and interview as many doctors as it takes to have a cohesive mix of intelligence, experience, friendliness, caring and concern and most important for my son....he has to like and trust him. So I may be looking for a while but I do believe I will find just the right person. I really appreciate your information and support and am so happy that you are doing well. I just love that this precedure worked for you and wish you many many years of pain free hip(s)!! Take Care and as always, will let you know how things are going. Julia @Easa….thanks for the info. I also had the dreaded feeling of same old same old from all the doctors, giving just the ol’ adage of THR. I think these docs have all got the THR in their brain as the newest best surgery out there and forgot about what it is to be a patient facing such a huge decision with so few options to choose from to be able to walk again. I think in general most docs are well meaning and really want to help their patients to have a better life. Unfortunatley I have found through this process that the orthopedic surgeons have so much arrogance about them that what they say is the ONLY way for you to go. Mostly none are willing to find other options even when it is something that they would not do or really do not know much about it. To not smirk at you when you mention grafting or stem cell and then try to “sell” you out of making different choices.

I have learned a lot through this and even though the choice for my son is to get a new hip, not a choice I would ever want to make for a 16 year old, but make it anyway, I am determined to make this surgery option the best for my boy as I can. I no longer will see a doctor that my son does not like, nor will I ever stay with a doctor who pisses me off so much I want to strangle him. I will not choose a doctor just because someone else lovessss them, I will not pick a doctor out of the phone book because I am desparate to find anyone to help my kid!

I will find and interview as many doctors as it takes to have a cohesive mix of intelligence, experience, friendliness, caring and concern and most important for my son….he has to like and trust him. So I may be looking for a while but I do believe I will find just the right person.

I really appreciate your information and support and am so happy that you are doing well. I just love that this precedure worked for you and wish you many many years of pain free hip(s)!!

Take Care and as always, will let you know how things are going.

Julia

]]> By: Easa Nourouzee http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7874 Easa Nourouzee Thu, 05 May 2011 15:38:44 +0000 http://ourthursday.com/?p=405#comment-7874 Julia, I did see Dr. Crutcher at Swedish a few times. I heard good things about him from a lot of people but I was disappointed once I met him. He had the same approach as everyone else. However, I don't want to discredit him or persuade you not to go. I think you should go see him because every AVN case is different. I wasn't happy with what he said for me because he left me with 3 options: core decompression, bone grafting, or THR. This really frustrated me once I found out about the stem cell procedure. I told him about the procedure once I learned about it and he said he had never heard of it. I kind of find that hard to believe..... Julia,

I did see Dr. Crutcher at Swedish a few times. I heard good things about him from a lot of people but I was disappointed once I met him. He had the same approach as everyone else.

However, I don’t want to discredit him or persuade you not to go. I think you should go see him because every AVN case is different. I wasn’t happy with what he said for me because he left me with 3 options: core decompression, bone grafting, or THR. This really frustrated me once I found out about the stem cell procedure. I told him about the procedure once I learned about it and he said he had never heard of it. I kind of find that hard to believe…..

]]> By: Brad and Kim http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7871 Brad and Kim Wed, 04 May 2011 16:39:31 +0000 http://ourthursday.com/?p=405#comment-7871 @Julia - I wish I could give you a big hug. I am sorry Jarrod is having to go through this terrible ordeal at at 16. I imagine THR are progessing and improving greatly and will continue to improve. Should Jarrod need a second THR hopefully science will have advanced so far that it will last. I hope he is moving and building those muscles back really soon. We are taking Blake to Texas Scottish Rite in Houston in a few weeks to visit Dr. Harry Kim. Dr. Kim works with kids who suffer from Legg-Calve-Perthes disease (AVN in the femoral heads, ideopathic). I would be glad to ask him if he has any suggestions for Jarrod and what he recommends if you'd like. I think of you and Jarrod often...sending you love and support... @Julia – I wish I could give you a big hug. I am sorry Jarrod is having to go through this terrible ordeal at at 16. I imagine THR are progessing and improving greatly and will continue to improve. Should Jarrod need a second THR hopefully science will have advanced so far that it will last. I hope he is moving and building those muscles back really soon.

We are taking Blake to Texas Scottish Rite in Houston in a few weeks to visit Dr. Harry Kim. Dr. Kim works with kids who suffer from Legg-Calve-Perthes disease (AVN in the femoral heads, ideopathic). I would be glad to ask him if he has any suggestions for Jarrod and what he recommends if you’d like.

I think of you and Jarrod often…sending you love and support…

]]> By: julia http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7865 julia Tue, 03 May 2011 01:06:34 +0000 http://ourthursday.com/?p=405#comment-7865 Hi Guys......It has been a while since I posted about Jarrod (16yo with advanced AVN from acute injury) but I have had to wrap my mind around our treatment finding trip to San Diego. It was a great trip and I found there is another surgery, extreme, but not a THR. It is called a Chiari Osteotomy. Basically the dead bone is cut away from the hip ball then the pelvis is rotated a bit to accommadate the new shape of the femur ball. It uses the bone that you are left with after removal of nectotic bone and then makes a socket able to fit the new shape. You so lose some height as the dead bone is shaved away and there is a chance of a slight limp after recoup. The worse is the body cast to allow for healing without movement but after the cast is off you are good to go and can live your life like before. The operation can draw out the need for a THR for many years, maybe 10-20, although there is always the rish that the operation will not work as long but it gives the patient the ability to hold off getting the THR that in my son's case at the age of 16 will have more than one THR. The doctor said that this Chiari can be converted to a THR although the shift in the pelvis give the THR doc a different socket to work with but not impossible. I was so excited to hear that there was another option using ,y son's own bone to get him weight bearing again and to know that hw could put off the THR for many years. Jarrod was like sign me up:)...this Chiari was optioned to us ny Dr. Wenger at Rady Childrens Hospital, San Diego. After that visit we went to Dr. Bugbee at Scripps Memorial who concurred with Dr. Wenger and thought it was brilliant and was shaming himself for not thinking of the Chiari himself. He felt that it would be a success for my boy. Now comes the but just hold on a minute moment, the following day we went to see Dr. Santore at Sharp Memorial in san Diego. He was completly against the procedure for my son. He thought Jarrod's chance of success was not worth putting him though the operation when he could just go straight to the THR and get on with his life. Jarrod's AVN is about as bad as one can be so trying an operation to be a maybe was not a risk this doctor felt was worth it. Dr. Santore also stated that even though he highly respected Dr. Wenger, he reminded me that he is a pediatric doctor and never would he be the one to convert this operation to a total hip so he doesn't know how how it can be with the shift of the pelvis. So, we are back to square one. Our son's local surgeon tried to fix him so hard that he missed the mark of when the AVN was getting worse at the time when we could have opted for different operations. I.E. compression, grafting, stem cell....but now we are left with only two; leave it alone and walk or limp or crutch on the hip as long as you can or get a THR. We are going for the THR....at 16 years old, unbelievable! We have two doctors in our area that we are gong to see,(For anyone from Seattle let me know if you know about these docs), Dr. Teeny at Lake Ortopedics and Dr. Crutcher at Sweedish. Again we are in the waiting mode but one thing had happened is all the doctors agree that walking on his hip is not going to make it worse so he might as well walk on it. Jarrod tries, but it looks more like a screwed up bunny hop:) He hadn't walk in so long his muscles have recoiled and trying to get them to stretch out and walk is not easy. He tells me now that he is having "discomfort" daily so I know that he can walk on it for a short time but that the statement of "go until you can no longer stand it" is almost upon us. So fellow AVN'ers or parents of one, I will let you know when we do what we do and which surgeon gets the opportunity to operate on my son. I hope all is well and I do read all the posts. Its gets to be overwhelming at times so I pretend that life is normal and ignore all the social media avenues available to me and just remember when...........****sigh********* Julia Hi Guys……It has been a while since I posted about Jarrod (16yo with advanced AVN from acute injury) but I have had to wrap my mind around our treatment finding trip to San Diego. It was a great trip and I found there is another surgery, extreme, but not a THR. It is called a Chiari Osteotomy. Basically the dead bone is cut away from the hip ball then the pelvis is rotated a bit to accommadate the new shape of the femur ball. It uses the bone that you are left with after removal of nectotic bone and then makes a socket able to fit the new shape. You so lose some height as the dead bone is shaved away and there is a chance of a slight limp after recoup. The worse is the body cast to allow for healing without movement but after the cast is off you are good to go and can live your life like before. The operation can draw out the need for a THR for many years, maybe 10-20, although there is always the rish that the operation will not work as long but it gives the patient the ability to hold off getting the THR that in my son’s case at the age of 16 will have more than one THR. The doctor said that this Chiari can be converted to a THR although the shift in the pelvis give the THR doc a different socket to work with but not impossible.

I was so excited to hear that there was another option using ,y son’s own bone to get him weight bearing again and to know that hw could put off the THR for many years. Jarrod was like sign me up:)…this Chiari was optioned to us ny Dr. Wenger at Rady Childrens Hospital, San Diego. After that visit we went to Dr. Bugbee at Scripps Memorial who concurred with Dr. Wenger and thought it was brilliant and was shaming himself for not thinking of the Chiari himself. He felt that it would be a success for my boy.

Now comes the but just hold on a minute moment, the following day we went to see Dr. Santore at Sharp Memorial in san Diego. He was completly against the procedure for my son. He thought Jarrod’s chance of success was not worth putting him though the operation when he could just go straight to the THR and get on with his life. Jarrod’s AVN is about as bad as one can be so trying an operation to be a maybe was not a risk this doctor felt was worth it. Dr. Santore also stated that even though he highly respected Dr. Wenger, he reminded me that he is a pediatric doctor and never would he be the one to convert this operation to a total hip so he doesn’t know how how it can be with the shift of the pelvis.

So, we are back to square one. Our son’s local surgeon tried to fix him so hard that he missed the mark of when the AVN was getting worse at the time when we could have opted for different operations. I.E. compression, grafting, stem cell….but now we are left with only two; leave it alone and walk or limp or crutch on the hip as long as you can or get a THR. We are going for the THR….at 16 years old, unbelievable!

We have two doctors in our area that we are gong to see,(For anyone from Seattle let me know if you know about these docs), Dr. Teeny at Lake Ortopedics and Dr. Crutcher at Sweedish. Again we are in the waiting mode but one thing had happened is all the doctors agree that walking on his hip is not going to make it worse so he might as well walk on it. Jarrod tries, but it looks more like a screwed up bunny hop:) He hadn’t walk in so long his muscles have recoiled and trying to get them to stretch out and walk is not easy. He tells me now that he is having “discomfort” daily so I know that he can walk on it for a short time but that the statement of “go until you can no longer stand it” is almost upon us.

So fellow AVN’ers or parents of one, I will let you know when we do what we do and which surgeon gets the opportunity to operate on my son. I hope all is well and I do read all the posts. Its gets to be overwhelming at times so I pretend that life is normal and ignore all the social media avenues available to me and just remember when………..****sigh*********

Julia

]]> By: Terri http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7847 Terri Sat, 30 Apr 2011 07:16:04 +0000 http://ourthursday.com/?p=405#comment-7847 Also you couldn't pay me to take another steroid medication, especially in my case for just annoying stuff like allergies and acne. Why don't Dr's warn people about this stuff? Makes you not want to ever take a prescription drug again. Sorry, guess I am just ranting and rambling. Terri Also you couldn’t pay me to take another steroid medication, especially in my case for just annoying stuff like allergies and acne. Why don’t Dr’s warn people about this stuff? Makes you not want to ever take a prescription drug again. Sorry, guess I am just ranting and rambling.
Terri

]]> By: Terri http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7846 Terri Sat, 30 Apr 2011 07:10:24 +0000 http://ourthursday.com/?p=405#comment-7846 I asked the Dr about doing blood tests and he said yes, good idea and ordered an arthritis panel?! I am going to get the MRI as I did not see it or the report and I think I should get a 2nd opinoin, especially after reading what some of you have been through. But still having constant pain, So if it is arthritis an Rheumatoligist is who I should see?? As for the shots, No Thanks I think I will pass! Thanks everyone for your input, You have been very helpful and have helped calm me down. Terri I asked the Dr about doing blood tests and he said yes, good idea and ordered an arthritis panel?! I am going to get the MRI as I did not see it or the report and I think I should get a 2nd opinoin, especially after reading what some of you have been through. But still having constant pain, So if it is arthritis an Rheumatoligist is who I should see?? As for the shots, No Thanks I think I will pass! Thanks everyone for your input, You have been very helpful and have helped calm me down.
Terri

]]> By: Brad and Kim http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7842 Brad and Kim Thu, 28 Apr 2011 23:57:20 +0000 http://ourthursday.com/?p=405#comment-7842 @Terri - great news! A second opinion is always valuable I think, however it is likely conclusive. The radiologist reads it and writes the report and the Dr also reads it, that is two sets of eyes on it- you can get a copy too if you want. My other son, Kyle (age 11) has some arthritis issues... ugghh... this has been a tough year! Anyway, we are reasearching his issues (autoimmune disorder of some sort) and he is seeing a rheumotologist, has anyone suggested a rhemo doc to you? It may be nice to know why you have arthritis (if you do). This is just a thought - filter as needed! We are trying to elimate high allergens from his diet - gluten free is often suggested for arthritis. It is an easy diet to follow really (I have been gf for 10 years and it is much easier theses days!). Keep me posted, I hope you feel better soon. @Terri – great news! A second opinion is always valuable I think, however it is likely conclusive. The radiologist reads it and writes the report and the Dr also reads it, that is two sets of eyes on it- you can get a copy too if you want. My other son, Kyle (age 11) has some arthritis issues… ugghh… this has been a tough year! Anyway, we are reasearching his issues (autoimmune disorder of some sort) and he is seeing a rheumotologist, has anyone suggested a rhemo doc to you? It may be nice to know why you have arthritis (if you do). This is just a thought – filter as needed! We are trying to elimate high allergens from his diet – gluten free is often suggested for arthritis. It is an easy diet to follow really (I have been gf for 10 years and it is much easier theses days!). Keep me posted, I hope you feel better soon.

]]> By: Luke http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7840 Luke Thu, 28 Apr 2011 23:32:38 +0000 http://ourthursday.com/?p=405#comment-7840 Many a contributor and reader in these comments found their way here after they took some sort of steroid for an unrelated problem. I would put cortizone off until you are completely sure. Of course you can get second opinions and you would be foolish not to. Another recurring theme in these comments are the doctors who repeatedly mis-diagnose. I myself fall under this category. Many a contributor and reader in these comments found their way here after they took some sort of steroid for an unrelated problem. I would put cortizone off until you are completely sure. Of course you can get second opinions and you would be foolish not to. Another recurring theme in these comments are the doctors who repeatedly mis-diagnose. I myself fall under this category.

]]> By: Terri http://www.ourthursday.com/2009/07/16/osteonecrosis-or-avascular-necrois-avn/comment-page-7/#comment-7839 Terri Thu, 28 Apr 2011 22:48:05 +0000 http://ourthursday.com/?p=405#comment-7839 Hi The Dr said my MRI was negative for AVN, I will admit I was a little skeptical. Is it 100% accurate? He said arthritis. Then told me i would be sure if I got cortizone injections and it relieved the pain even if temporarily. He said something like a pinched nerve would not usually show up as groin pain. I am wondering if I should get a 2nd opinoin? I have been taking naproxen for almost 2 weeks with no change in pain level. I also son't want to do the injections in the hips. Terri Hi
The Dr said my MRI was negative for AVN, I will admit I was a little skeptical. Is it 100% accurate? He said arthritis. Then told me i would be sure if I got cortizone injections and it relieved the pain even if temporarily. He said something like a pinched nerve would not usually show up as groin pain. I am wondering if I should get a 2nd opinoin? I have been taking naproxen for almost 2 weeks with no change in pain level. I also son’t want to do the injections in the hips.
Terri

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