tendon lengthening vs capsular release-Questions

[tnmoore]

I am a 32 yr LOBPI, and I previously posted this question on the adult message board and have received no responses yet. I have a 90 degree contracture and according to Dr. Nath the only procedure he is familiar with is the bicep lengthening. With such a tight contracture it will require mulitple surgeries. My fear is the scar tissue build up and the trauma to the arm over and over. I received a second opinion from a non BPI specialist and he stated that I need a capsular release not a tendon lengthening. I emailed Dr. Nath and he was not familiar with the capsular release surgery. Does any one have any information regarding what is better for someone with a OBPI injury. The capsular release sounds a lot safer for the long haul.
Also I was wondering if it is safe to trust a surgeon who has experience in contractures even though they may not specialize in BPI's. Physicians are telling me that my problem is mechanical and therefore it would be ok to have any orthopedic surgeon perform the surgery. What do you think? The internet seems to talk a lot about the capsular release than the bicep lengthening. Thanks Nicole

[Jenny]

Dr.Kozin from Shriners Hospital for Children is familiar with capsule release surgeries. You may want to email him with your questions. He is very good at responding to emails. Although from reading his article, the capsule release surgery he does is mainly for BPI children under the age of eight. But you can find out his opinion about your individual case. Good luck!

skozin@shrinenet.org

Jenny

[admin]

I would suggest that maybe you call Dr. Nath or speak to him in person (or any other BPI doctor). I know that he (Dr. Nath)is familiar with the caps surgery, as he has done many, including one on my son and on several of my friends' children as well. However, from what I understand, the caps surgery helps with the shoulder issues more, which in turn can help with the slight elbow contractures, but from what it sounds, the contracture in your elbow is so severe that it probably would require the tendon to be lenghtened. Also, studies have shown that in the long run, several of the anterior caps release procedures just do not hold up and either have to be repeated or a completely different surgery has to be performed, as this was our case. I am obviously no specialist, but from the several well known BPI specialists that I have seen, this makes sense. I would also encourage you to see a BPI specialist instead of a regular orthopedic doctor, as they have the knowlegde and experience with so many of the side effects of this injury. Like I said, we have seen several BPI specialists along with regular ortho docs and the difference is amazing. Most BPI specialists say about the same thing, while most non BPI specialists told us many different things and were even confused by our questions or just didn't have the BPI knowledge to answer us. This is just our experience. Good Luck to you and I wish you the best.

[admin]

Just to clarify, Dr. Nath does not do the anterior capsule release so the original poster is correct. The "caps" surgery that Dr. Nath does is a completely different surgery. It is important that we don't confuse the two surgeries. They are used for the same issues but are completely different procedures. I have never heard or read anything about the anterior capsule release surgery not holding. It really isn't about holding anything. I wonder if you are talking about the caps surgery. If there is any reference to studies that you mentioned "several of the anterior caps release procedures just do not hold up and either have to be repeated or a completely different surgery has to be performed, as this was our case" could you please share. I am not aware of any such studies but am very interested in learning more.

Thank you.

[m&mmom]

Nicole,
If I'm correct in remembering Dr. Pearl in CA was performing the capsule release on adults. The results were amazing so Dr. Pearl communicated the results to Dr. Kozin & Dr. Waters. My son had this procedure done a year ago. You could see the results of his mri on www.franklinfamilybpi.com. I would suggest contacting Dr. Kozin and asking him if he knows of a good surgeon who works with adults. I would recommend getting as many opinions as you can. Not all surgeons perform the procedures the same and one may be of a better benefit to you.

Cindy

[claudia]

Nicole:
No, you don't need to only go to a bpi specialist for some of the surgeries, but the bpi specialists do have a better understanding of the mechanics of THIS injury. However, there are so many bpi specialists, I encourage you to check out some of the other specialists out there. If you are in Texas, you should call Dr. Shenaq at Baylor Medical College/TCH. As for the anterior capsule release, Dr. Michael Pearl (in CA) and Dr. Waters (in Boston) both do this procedure.
Also, have you thought of any of the non-surgical remedies first? Botox, splinting...?

As to the guest saying that the anterior capsule release is not holding up, I was in italy at the conference and that is not what their studies are showing. Their studies are showing that the acr is a viable tool in the treatment of bpi. The capsuledesis is a surgery that has been around for a long time and had been used on bpi. This is a surgery that I have heard from parents (I haven't heard of a paper published about it) that it either has to be repeated or is followed by osteotomy.

I think you need to do some more research to make yourself feel better about any surgeries.

Also, there is a medical resource directory on this website, please go look there for the many doctors who have answered the ubpn questionaire.

good luck and keep asking questions.

claudia

[admin]

I am sorry to get off of topic here, but can someone please explain to me the difference between capsolodesis (?sp), caps release and acromioplasty. My son just had the mod quad done and is expected to need further surgeries in the future so I am just wondering the differences and what each one "fixes". Thank you. Andrea.

[claudia]

Andrea:

In answer to your question:
Capsulodesis: this is a shoulder surgery whereby a tendon in the back or the shoulder girdle is tightened in an effort to keep the humeral head in the socket.
Caps release: I am not sure what you mean by this. If you mean an Anterior Capsule Release...then it is an arthroscopic procedure whereby the front of the capsule of the shoulder is "relaxed" to allow the humeral head better posititioning withing the joint.
Acromioplasty (Acromio or Scapular Derotation): a surgery where the acromion (or acromial process) which is a bone at the top of the shoulder is cut or shaved because it is believed to be impinging on the movement of the head of the humerus.

I am not going to give my opinion on any of these surgeries... I am just going to say that you should get more than one opinion. And that, no doctor should be annoyed or bothered that you are going for a second opinion.

hope it helps,
claudia

ps.. check your old Outreach magazines, many (all?) have glossaries.

[tnmoore]

I want to thank you all for your responses. I am in the process of using a dynasplint to see how much gain I can receive, but so far it is not looking good as my contracture has been this tight for 15-20 years with no intervention. I did email Dr. Kozin and as of yet he has not emailed me back, but it has only been one day so I should hear from him sometime next week. Having this type of injury definitely requires much research on the patient/parent end, and I thank everyone for the information on these message boards-it helps tremendously in finding answers. I will wait to see what Dr. Kozin has to say and also contact Dr. Pearl and/or Dr. Waters. Thanks again-Nicole

[tnmoore]

The internet and different articles I have pulled up have mention different ways of approaching the capsules, and all joints have capsules so it depends on what body part you are talking about, and which way a surgeon will go about getting to the capsule be it anterior/posterior/lateral/or medial. In my particular case I am talking about my elbow joint.