We had another consultation appointment for Kevin as we continue to have concerns about his ankle support in the long run. We were really glad we went as there are differences in the approach taken on Kevin's ankles and alignment. Actually even going back to the Institutes, their approach was that he would simply walk out of the issues. We know this to be wrong so we are glad we keep exploring.
This is the second Dr. we have now spoken to about it outside of our Philly Dr. Joe. We met with Dr. Lamendola up near Cleveland - much closer to us obviously. This is his website. http://www.totalfootcares.com. The support Kevin's ankles have or haven't ultimately lead to future development of the alignment of his knees, hips , and spine. See the picture below of the skeleton. So essentially, fixing the ankles and related support fixes the rest of the alignment. The good news is that we are addressing this at the right time in his life and there is a fixable solution which is not a major undertaking of stress on Kevin's body and we are actively pursuing it. And it is not something we need to rush into as we have plenty of time to research.
Concerning Kevin's ankles, we have learned through Dr. Joe in Philly from the Family Hope Center that there is a procedure called hyprocure for the ankles. Check out the website www.hyprocure.com for a complete description which might explain it better than I would. Essentially the surgery is inserting a pin or plug into a certain area of Kevin's ankles between two bones and the plug simply sits in a "pocket" area in his ankles. See picture #2 below of the ankles. The titanium pin/plug is not fused or sewn or screwed into anything on Kevin's ankles. It is simply inserted and left for tissue to grow around it. The plug supports the ankle and puts it in the right position immediately. One benefit is that it can simply be taken out at anytime over Kevin's life without complication due to it simply sitting in the pocket. This procedure is non evasive and has been around for about 5 years now and it has yielded good results for this problem of Kevin's. If you look at Kevin's ankles, you can see that they essentially look like they roll in on each other as he walks even though it does not hurt him. Long term though it might. You can mostly see this in his bare feet. The hyprocure website also has some good pictures of patients in the results/case studies section for a visual. The issue that Kevin has does cause muscle fatigue in that his ankles are not properly aligned so walking longer distances is a challenge. I know Uncle Steve likes to carry him around but dang Steve that boy is getting heavy.Our fear is that over time if we don't continue to work on Kevin's ankle issues that Kevin would continue to be misaligned in his whole body and other problems arise such as dislocated hips or knee problems or shortened leg vs the other or even one foot smaller than the other as we have seen or other things as he would enter his adult life. We have been working on the ankles with all the techniques from Philly and also the shoe wedges and orthotics but it seems not enough ankle progress has been made. So addressing it now with patience and research seems to make sense to us via this hyprocure process. The Dr. we saw today also went into great detail with Kevin's situation and how the procedure works and helps. He examined Kevin and tested his range of ankle motion and what not to summarize it well for us. We were pleased with the discussion as we had a lot of questions. So in short, both Dr. Joe and Dr. Lamendola are recommending this route.I have heard that in the past, adults and kids would undergo major surgery that would work to deal with Kevin's exact ankle issue. Even Dr. Joe said he would do major surgery years ago like this with mixed results. The Dr.'s would cut and shorten ankle side tendons and/or ligaments and sew them back together to help these issues to lengthen and shorten movement for patients. This is an absolute NO for Kevin in my opinion as it is to simply to much, to scary, and to much to consider if things would go wrong to cut through an entire tendon or ligament as I have read up on it. Dr. Joe says he does not do these surgeries anymore as the hyprocure has worked in his practice also as a much better solution in many regards. There are still doctors that do things this way and those Dr's will be avoided in the house of Hudak.So the Dr. we saw today recommended we do one ankle at a time. He would start with the right ankle for Kevin as it is essentially the most rolled and needs the most support. The Dr. says the surgery takes about 15 minutes on his end. Kevin is given some type of sedative and local anesthesia is applied. It would be done at a local surgery center or hospital here and it is a half day deal from checkin to checkout. The sedative might be enough to put Kevin to sleep but that would remain to be seen or asked about more. Right at the end of surgery, Kevin would wear a supportive hard plastic boot to protect the foot like you would see someone wear with a broken foot. The Dr. said he could be walking with the boot in about 3-4 days. I don't recall how long he would have the boot on. Maybe a few weeks? Today Dr Lamendola told us that the key to the surgery is inserting the plug at the right oblique angle. He actually learned this with practice with his first patients on the hyprocure years ago as the procedural training does not teach you this. There is a technique to it that other surgeons may wrestle with that have less experience. An X-ray is done right before surgery as a picture reference and a guide wire is used to guide the plug into the right place in the subtaylor joint region of the foot. He has done thousands of these procedures for his practice as he is well known and renowned in his field. He is a master surgeon for this procedure which is the top level. I researched him before our appointment today and he was actually one of the doctors on a team that helped develop the procedure. There are other levels that other Dr's have that have not had as much training or experience. So Kevin would not be a guinea pig for him.After 5 or 6 weeks Dr. Lamendola would do the left foot. Same thing as described above. However, he is recommending an additional procedure with Kevin's left foot. He is recommended we consider the movement of his left foot as his lateral or up and down movement of his left foot is very tight. His right foot is not tight and has great range of motion. So his left foot being tight is causing less lateral range of motion and contributes to the toe walking which has effected his toes over the years. I can show ya'll this on Kevin and you can see for yourself next time you see him. He is recommending three "tiny tiny tiny slits along the sides of his achilles tendon. I have attached a picture below showing the scope of the slits. The picture being an enlarged version of the achilles tendon and the slits being the small triangles. This would loosen up his achilles and increase his range of motion. He has done this with other patients with the same tightness issues with success. Dr. Lamendola's opinion was that if we don't consider this along with the hyprocure with Kevin's left foot then we would only be addressing about 40% of Kevin's left side issue. He said he would do the hyprocure only on the left if we chose but would like to do his job right and address the bigger picture. This will require more research and questions on our end. I repeatedly asked about worst case scenario with this and he kept saying it is so minor that there is no risk factors but I pressed on and he mentioned on a national level in 1% of cases if one slit was too much or something it would simply heal back over time so nothing major to be really concerned about according to him. Again the achilles is not being cut through - just slit. All the slits get covered over with tissue over time. No stitching or anything like that would be involved with all this. This whole discussion seemed to make sense to Karen as she remembered her achilles being tight as a high school runner and she remembered how her toes got destroyed being a "toe runner". In any event, the hyprocure also makes sense on the left foot and we have to research more about the achilles thing. I think I am to be looking up taylor achilles lengthening which is my next project.Now to Dr. Joe at the Family Hope Center. When we originally met with him and via the last two visits with Dr. Joe, he said he would do both ankles at once in his office. After the procedure on both, he require Kevin to be completely off of his feet for 4 weeks or more. He did not say a boot would be used. This we saw as being a very difficult task. Dr. Joe would also use a sedative or valium or something and and then local anesthesia as the procedure is only a small incision, then a string wire to the right area and then the plug travels down the guide wire and is simply pushed/inserted in place. So the procedure is the procedure and it is the same essentially. My concerns with Dr. Joe is that I don't believe he has done as many of these hyprocures in his practice and his approach of doing both ankles at once and then not bearing weight for a month or more seems impossible for our adventure boy. Not suggesting a boot for protection was also a concern. Also, if we do have to do follow ups, a 45 minute drive to Cleveland seems to be a lot better than a 7 hour drive to Philly. In addition, Dr. Joe has never addressed Kevin's tight range of lateral motion in his left foot and related toe walking. He didn't seem to have any recommendation for a solution. I am not sure I have a solution yet as I need to research but at least I have a recommendation to research. We will be addressing this all with him in November when we visit.So back to Dr. Lamendola. So after the hyprocure, Kevin would get a new type of orthotic to wear. This orthotic is similar to the one Dr. Joe has in his practice, but this one has more ankle roll support that Dr. Joe's does not seem to have. I have attached a picture of an adult orthotic that Kevin would potentially have so you can get a visual. It is called a UCBL orthotic.In general after meeting this Dr. today, I feel more comfortable with Dr. Lamendola's experience, consultation, advice, approach, and time spent with us on Kevin concerning this particular issue.I would like to encourage you to ask questions if you have them or to research if you want. Then if we see a question that we want to know then we can ask. If no questions or concerns - that's cool too.That's it for now. I warned you in the subject line that this was long. The long typing is good for us too as we will copy from here and put all the appropriate notes in our report to the Family Hope Center when we go back in November. If we do go down this route - perhaps January would be a good time to start as winter would be a good time to sit around here in Ohio.Jon
Sunday, November 17, 2013
HyProCure
This is the summary that Jon wrote in October, after our visit with the Cleveland doctor to discuss Kevin's feet and the HyProCure surgery.
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Hi - I found your blog recently. I also do FHC program with my two girls and part time with a local boy. We are in Ann Arbor and haven't found a carbogen source. Would you mind telling me who you used? We are close enough that I would be able to travel for it. Thanks a bunch, Kristine! my e-mail is kjsibert at aol dot com
ReplyDeleteI'm a pediatric physical therapist looking for a solution for a patient of mine, 9 years old, with spastic diplegia, and very severe pronation on the right. I came to your blog by researching hyprocure. I just read this one entry...but I don't see the pictures you said were attached. I'd love to know more about your experience, because the only doctors I'm coming across right now have only done this procedure on adults without CP.
ReplyDeleteI would be happy to give you more information about our experience. Just let me know how to contact you. You can also type in Hyprocure in the white search box in the upper left corner of the blog. The doctor that we chose to do it in NJ is Dr. Joe Picciotti information at http://dr-joseph-picciotti.com
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