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Thread: Daughter's upcoming hip surgery - need advice, opinions, anything ))

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    Default Daughter's upcoming hip surgery - need advice, opinions, anything ))

    Hi friends,

    Wanted to know if there are ‘fellow sufferers’ here who went through the hip surgery with their children w/ neurologic disorders. My daughter’s hip dislocated about 3 months ago (coxa valga) and we had a hard time to find a surgeon here who would actually do the surgery because of all associated risks and Sonya’s diagnoses (hydrocephalus (subcompensated, no shunt), epileptic seizures as a result of meningitis at 3 months’ age (2-3 grand mals per week), precocious puberty (onset at 7 yrs old, have been administering monthly Diphereline (Triptorelin) injections for the last 2 years, asymmetric deformation of thorax, scoliokyphosis, various contractures, right foot equinovarus, left foot equinovalgus. Prior to hip dislocation, could turn over, sit for short periods unassisted, stood on her knees with support, made attempts at crawling. At the moment experiences severe pain whenever she (or we) tries shifting lower part of her body, pulls up her leg, etc. The surgeons are reluctant because of all associated risks during and after surgery (postoperative pneumonia, among other things) and no definite guarantees of Sonya's state improvement after the surgery. The last surgeon we applied to has agreed to do the surgery, but since she has such a high hip dislocation, and her pelvis by now is asymmetric and half-folded inward, he recommends doing surgery in two phases: 1st phase surgery on Sonya's soft tissues, to 'unfold' her pelvis to facilitate subsequent osteotomy - 1.5 month in cast, short break to recover, then varus-detorsion osteotomy in combination with other procedures (TBD). Chief operating surgeon believes these two surgeries will be sufficient and will enable Sonya to at least bear her weight in standing position if we are able to verticalize her later, his assistant surgeon, on the other hand, believes these will be just a prep ground for endoprosthesis replacement which will be required when Sonya turns 18-20 yrs old and her sceleton has been completely formed.

    I’m also worried about Sonya's breathing – it’s shallow, she’s hyperventilating, her thorax is deformed, plus she may stop breathing for a minute or two when she has grand mals, and about her bones' consolidation - two months ago she broke her shoulder (surgical neck) and it took over 6 weeks for the bone to consolidate. Just today the doctor confirmed his diagnosis of osteoporosis and surprised us (as if we can be surprised by anything by now) by yet another one – it appears that Sonya has connective tissue defect (collagen deficiency) – this adds to our concern about her staying so long in casts after both surgeries - any nicks, scratches on her skin take a long time to heal and she's prone to swelling - her feet and shins swell very easily when we try to put her into orthotic devices even for a short period. But, considering her current state, we don't see any other alternative and believe the surgery will improve Sonya's quality of life (will remove her pain, at a minimum) and her range of movements since she was progressing, though slowly, in her motor development prior to her hip dislocation. If left as it is, her sceleton will be deformed even further, up to the point when she'll have increased pressure on her internal organs. The doctors, though, ask us to think twice before we agree to the surgery ((
    I also wanted to ask if there is anyone at this forum who had his child operated with ongoing seizures? Just wanted to know how did you/doctors go about seizures during surgery and recovery period? I weaned Sonya off AEDs gradually because of all the side effects they were causing her (and they didn't help her any, she was constantly in a daze when she was taking them plus acquired kidney, lungs, etc. problems). So I'm worried about strong AEDs they may put her on during/after surgery to prevent her from seizuring, and they might not help any, considering all AEDs that the doctors have already tried on her, and I'm also worried about her having grand mals while in cast - she gets so spastic she bends in half ((
    Sorry, I haven’t meant it to be such a long post, it’s just that we have so many diagnoses and I thought some of you may have encountered similar problems during/after surgery with similar diagnoses! ))
    Last edited by tina_r; 04-09-2013 at 05:55 AM.

  2. #2
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    My friend who had hip surgery has other friend in other state who went through a similar hip surgery. I spoke to her on the phone about it. This person had many deformities in her knees and legs. Her knee had apparently shifted down and was out of the socket in addition to the hip issues. The doctors moved everything into an aligned position and put various metal pins in her legs to hold it together. She said she was very glad she did the surgery because it improved her balance and my friend has had similar positive results. It would be great if Sonya could stand after surgery. What is endoprosthesis?

    I wish I could help more but I know some of the parents here have kids with hip issues so hopefully they can help more. As for info on the seizures I would suggest posting your concerns about that on the Epilepsy forum. I know surgery is scary since I had 2 tendon stretching surgeries myself. I wish you the best of luck!
    Last edited by funnylegs4; 04-09-2013 at 07:40 AM.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  3. #3
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((tina and Sonya))))))

    You are facing extremely difficult decisions with no easy answers.

    My suggestion is to make a chart of the risks and benefits of surgery vs. no surgery to help you weigh them carefully. Sometimes seeing it written and parsed out helps to clarify issues. Especially when there are so many factors to consider, as is the case with Sonya (and all of our children here at CN, actually).

    You can also go on a fact finding tour among specialists, prior to surgery to address all of your concerns.

    In addition to the surgeons, you might want to talk to the anesthesiologist, who will assist in the surgery, ask for any needed tests to make sure Sonya will be safe, provide findings related to her deformed thorax, find out how long she will be under, what the risks are, whether she will be intubated (on a vent) during surgery, and whether her seizures are a concern during surgery.

    Our orthopedic surgeon told us prior to Jon's rod and pins in his rt hip, "Don't worry about me. I'm just a carpenter. I have great tools. It's the guy with the gas you need to talk to."

    Does Sonya have a neurologist? If so, have a chat with the neuro regarding your concerns about Sonya's seizures during surgery, post surgery, while in a cast, etc. Ask the neuro if Sonya's seizures will impact her weight bearing ability post surgery.

    Has a VNS ever been considered for Sonya?

    With regard to Sonya's shallow breathing, you could consult a pulmonologist (a lung doctor/respiratory doctor) for an opinion. You might even ask how to prevent post-operative pneumonia.

    An endocrinologist will be able to discuss with you the options for treating osteoporosis (usually drugs, like Fosamax, which I refuse to give to my son, based on my extensive research, and our trusted pulmo/intensivist agreed with me) and the prognosis for Sonya's surgical success as it relates to osteoporosis. Calcium/Magnesium, and Vitamin D are the safest approaches to strengthening bones, in my opinion.

    The more information and knowledge that you gather, the better informed you will be in making your decisions. So, if it is at all possible to consult with these specialists prior to scheduling Sonya's surgery, you will be fully informed and aware of all the possibilities, medically-speaking.

    I hope you have access to these specialists. Given Sonya's challenges, I would guess that all of them would become involved in her care at some point, particularly after surgery during hospitalization and recovery.

    My heart goes out to you and Sonya, and my prayers are with you ~

    Love & Light,

    Rose
    Last edited by Earth Mother 2 Angels; 04-09-2013 at 06:35 PM.
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    I think Rose has given some really great advice. If you get all of these specialists involved before the surgery they will be fully prepared to follow her post surgery. Because Kathleen has moyamoya there are some things the anesthesiologist needs to take into consideration so I always print up the reccomendations from her neurosurgoen for them and hand it right to them on hte day of surgery(this way I'm sure it goes directly to the actual anesthesiologist that will be with her that day. Many prayers that you will be guided to the right decision for your daughter.
    Mary Grace

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    Calcium/Magnesium might also help Sonya with spasms. I take a Calcium/Magnesium supplement called "Calmax" which is good for some of Sonya's issues.
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

  6. #6

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    Thank you, funnylegs, Mary, and Rose (!) for taking your time and effort to asnwer (I know, it does take time and effort, and compassion!) Endoprosthesis is, in our case, an artificial hip. No, we haven't considered VNS since VNS is most effective when epileptiform activity is limited to certain areas of the brain, whereas Sonya's activity is diffuse, multifocal. We've already been to numerous specialists from different disciplines, including roentgenologist, so I feel like I've got as much information as possible to be prepared before the surgery. Ideally, it would be good if all these experts could get together to have a panel discussion, but this is an ideal, and the healthcare system doesn't work like this, at least in our country. We've prayed so much about the situation and asked God to help/make us hear and follow His plan in all this, not our wishes, to lead us to the right surgeon, so we finally have peace, even though some of the doctors still advise us against the surgeries. The point is in our country, when people with serious neurologic/orthopaedic disorders reach certain age, most of healthcare specialists tend to give up on them and don't see any sense in continued efforts at their rehabilitation, they limit their efforts to palliative care when, in reality, some progress can still be achieved. I don't know if this has to do with the fact that our medical system is underfunded, understaffed, or maybe with the general mind set at the state level ( But it's ok, I'm grateful that we finally have a surgeon and I'm grateful to you for all your support and advice!

  7. #7
    Distinguished Community Member Earth Mother 2 Angels's Avatar
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    ((((((Tina & Sonya))))))

    I just read your post on the other thread, in which you stated that you've been hanging out here at CN since 2006, so I guess you know all of us by now! I'm glad you decided to join in, so we can get to know you.

    The reason I asked about the VNS is because several of our CN children have one. I realize that the VNS isn't the answer for everyone. I suppose you've explored diet changes and charted to determine if there are any patterns to her seizures and when they occur. It's obvious that you are well informed and a wonderful advocate for Sonya. But, until I am more familiar with someone, I tend to toss out everything that I can think of, in case that person is not as well informed as you are.

    So, you've made the decision for Sonya to have the surgery. Your concerns now are what to expect during and post surgery. How will her seizures be managed, how will seizures affect her when she's in a cast, how to prevent irritation/skin breakdown from the cast? I'm recapping to make sure that I understand your needs.

    I'll begin with seizures, as I'm most familiar with them. Michael seized every day for 22 years, and Jon has had some really scary tonic/clonic seizures (last year, ended up in ICU for 10 days).

    I am not a fan of AED's. I've seen the long term damage they can do with my boys. But, seizures are the devil we fight. They basically rule our world, because everything else revolves around seizures. I've turned down Fosamax and Synthroid for Jon's osteo and hypothyroid, because they interact with Jon's AED's, as well as have numerous untoward side effects. Which devil do I fight here? Seizures. They win every time.

    If Sonya's seizures become a concern post surgery, while she is casted, uncasted and recovering, you might want to weigh the potential damage that might occur if her seizures are not abated somewhat. You might contemplate giving her .5 mg Ativan, if her seizure is exceptionally violent or prolonged, and you are worried about her surgical site, hip, cast, etc.

    That said, with Sonya's shallow breathing, you need to use Ativan with caution, as it can repress the respiratory system in some people.

    You might want to consider getting a pulse oximeter (finger) to measure her oxygen saturation (SATS) and heart rate. If you decide to give Sonya Ativan or anything else to control her seizure, this is a helpful tool. If it's possible to have oxygen in your home (I don't know how this might work in the Ukraine), then you would have the ability to administer O2 to Sonya, if her SATS dropped below 90 or her heart rate dropped or elevated.

    If there were any AED's among Sonya's many drug trials, which were somewhat more effective than others, or somewhat less offensive, you might consider giving Sonya that drug for a period of time, while she is recovering.

    I'm not suggesting that you should. I'm just tossing out ideas for you to consider/contemplate as potential options to mitigate your concerns and Sonya's seizures. Believe me, I totally understand why you don't want to give Sonya AED's. But I also know that sometimes, when we're between a rock and a hard place, we have to push something out of the way to make room for whatever is necessary to get out of that space. Throw me a chisel, and I'll carve my way out!

    Giving Sonya an AED to control or minimize her seizures, while she's in a cast or recovering, doesn't have to mean a commitment to continuing that medication, once she has recovered. I'm sure you know all about weaning. So, you can wean her off of any AED if needed.

    Again, I'm not advising or suggesting that you do this. I'm just giving you things to ponder, to rule in or out in your decision process.

    Neither of my sons have been in casts, so I'm of no help to you there. I do know about skin breakdown. The best I can offer as a suggestion is a foam dressing at the sites, where the cast is irritating her skin. Not foam on the cast. Foam on her skin. We use self-adhesive foam pads, provided by Jon's home health nurse. That would add another barrier to whatever cushioning the cast might have to protect Sonya's skin.

    That's all that I can think of for now, but I'll certainly post any other thoughts that come to me.

    Keeping you in my prayers ~

    Love & Light,

    Rose
    Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

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    Distinguished Community Member andromeda31's Avatar
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    Hi!

    I replied on the other post about my daughter...my thoughts...I regret doing the surgery on her. Though for her, her hip was not yet dislocated. The doctors made it sound like it would be this big bad horrible thing if that should happen and that we should proactively fix it. I feel we had a poor outcome and that it reduced her mobility. I wish we would have just waited to see if would have dislocated on its own and then if that happened, then have done the surgery. But your daughter is already to that point so there would not be those regrets! One thing I thought of, was when C had hers done the second time (they took the hardware out of the femur but it turned out not to be good bone and it broke)....they didn't put her into a spica cast, they put her into this giant metal/plastic frame thing. It was just as big of a pain, but it was removable! I took her out of it to give her a bath every few days. Maybe they could do that for part of the time instead of being in a spica cast for months? That way in case of emergency seizures you could take her out of it. This is a picture of it: 2010 January 081a.jpg Hope that is a helpful idea! What a hard decision to have to make! (((hugs)))

    Lisa O.
    Lisa O: mom to Caitlin (14-CP, VA shunt, seizures), Brandon (12), Tyler (10), Logan (7)...my babies are all getting so old!!

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    Thanks for answering my question Tina!
    Cool removable cast Lisa. When casts were discussed for me they offered something kinda like that and called it an "open cast" but we opted for the spica. Wish I got the open removable cast instead. Certainly ask about that Tina. Like Lisa said it maybe could help with her seizure induced spasms and prevent injury. I'm so sorry the medical system basically disregards and gives up on people with certain medical conditions. That is totally unfair. All to often I see a disregard for more severely disabled where they are basically written off and that pisses me off to no end. Who is to say who does and does not deserve care?!
    Mild Spastic Diplegia Cerebral Palsy and bad proprioception.
    My website for my original short films! http://cripvideoproductions.com/cripsnotcreeps.php

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    Thank you so much for your answers! Sorry I've been offline, we're doing now final check ups and tests - the surgery is scheduled for Apr 23 (though, some of the test results are not very good, so I'm not sure, we've yet do discuss it with anesthesiologist ( Rose, it's ok to toss it out, and I'm really grateful for that, seriously! You never know when this or that piece of valuable info that I get here (especially from moms like you who have to deal with such serious special needs of their children daily) comes to mind and proves to be useful at the critical moment! I'm sorry for your Michael seizuring every day of his life (( (he went to heaven the year my Sonya was born) Sonya did it for the first 8 years, despite all AEDs she was taking and it was a nightmare. Thank you for Ativan advice, we have the same drug on sale here, just under different trade name, I'm also considering Diazepam.
    Andromeda, I've read Caitlin's story and how she was definitely more mobile before her surgery ((( This is also one of our major concerns, except that our story is a bit different - she stopped moving altogether after her hip had completely dislocated - I was watching her just yesterday trying to turn over to grab a pillow that she favored and she couldn't do even that - couldn't get past her dislocated hip, plus she's really in pain now ( so we can't wait any longer and just have to do it, despite all apprehensions and misgivings. And.. spica cast.. ugh, tried to avoid it, discuss other options, but it seems to be the only way they do it here, and I'm really reluctant to start the process all over again and start looking for other hospitals since these two surgeons that will do the surgery are real experts in their field - in the worst case, if Sonya feels really really bad in cast, I think we could discuss emergency cast removal and metal frame option. For now we're projecting our thoughts for the better outcome, it's just hard to realize it's only the beginning, the 1st surgery in a row, but, if you could pull through it, we can do it also! Our children are so tenacious, much more, I tend to think sometimes, than us! I remember when Sonya was 4 months old and came out of a month+ coma (meningitis) when everyone else except us has lost hope, our neurologist has told us, Your daughter has decided to fight, so you've no other way out but to go along with her. Thank you all so so much, I'll keep you posted
    Last edited by tina_r; 04-17-2013 at 08:46 AM.

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