View Full Version : Local orthotist - major rant !!!
12th November 2005, 04:10 PM
The local orthotist at our hospital has really been giving me the run around and he also gives me the creeps!!! We picked up the Milwaukee brace on Tuesday and he was very upset when I told him we were going with the Spinecor. I said, we wanted to give the Spinecor a try and see how we do with it for five weeks and also when the Spinecor is washed over night, the plan would be to have Deirdre sleep in the Milwaukee. So...Wednesday night Deirdre slept in the Milwaukee and I washed the Spinecor. She moaned all night long and was obviously in a lot of pain. When I went to take off the brace in the morning, I noticed a large indentation on her chest, which was where the center metal bar had been pressing into her chest. Obviously concerned, I called Art's ( the orthotist's) direct line and left a message. He never got back to me ! So near the end of the day, I phoned the secretary and told him about my concerns and he transferred me over to Art. Art tells me that this is normal and that Deirdre will get used to this. I said "I don't think so, I want this to be fixed right away" He then said, "well tomorrow is my day off, so we'll have to schedule something for next week". I said "FORGET IT, I want to see someone tomorrow !" SO, the following day I see Trevor (another orthotist) and it was determined that there was a nail or peg jutting out at the juncture between the metal shoulder bars and the front bar that shouldn't have been there.... and was also too close to the chest !!! :-o They were all very upset and kind of in shock! Also, Deirdre had been complaining of pain on her right lumbar side when wearing the brace and we found out that there was undue pressure being applied on her right lumbar side - she doesn't even have a lumbar curve - so I'm sure if we hadn't dealt with it, she soon would have a left lumbar curve !!! When we got home yesterday, I phoned Dr. Alman's secretary and told him that I was not too pleased with Art, and also that I would prefer to be seen in the future by Trevor, the orthotist that fixed the problems. We still have to go back next week because the brace is still too tight !! This brace cost $5,700 !!!!! :soapbox:
12th November 2005, 07:41 PM
I'd be ready to rip some new orifices in this Art guy. What a jerk!! Isn't really malpractice to ignore things that were obviously wrong? And so he's off tomorrow - I'd see if I could get him some more time off. Go get 'em Mom.
12th November 2005, 09:04 PM
Thats appalling treatment Sealy, i would refuse payment at leasttill the brace is corrected. I'm with Jean your wel with in your rights to perform major surgery on him
12th November 2005, 09:18 PM
Thank Goodness you're such a well informed parent Sealy.My concern is for other parents who would have placidly accepted his assertion that this was normal.
Frankly, I'm surprised that Deirdre is in a milwaulkee at all, they're orthotic cruelty as far as I'm concerned and is a bit like using a sledgehammer to crack a nut.
My advice is not to wash the spinecor over night but to purchase a steam cleaner and give it quick blast of hot steam and wipe it dry.It shouldn't take more than an hour to dry.Just check with the manufacturer that it can be used on the spinecor.I use steamcleaning for curtains and to freshen my husband's suits etc..A small handheld one is relatively inexpensive.
I'm very anti milwaulkee because I can still feel the pain from my own like it was only yesterday.I'm sorry you had this experience Sealy,I know as a parent it's distressing to see your child suffering as a result of someone elses mistake. Go kill Girl!!
12th November 2005, 09:39 PM
That's a great idea !! I'll see if I can get a steam cleaner. The Milwaukee really is a torture device, Deirdre's in so much discomfort wearing it !! It breaks my heart to see her in pain. I don't see why it has to be so uncomfortable ??? It really scares me to think that some parents would take this man's advice and just leave things be.... not knowing any better. Mark/Jean, if I ever see this man again, I swear I'll spit LOL ! I did complain, but we'll see.....
13th November 2005, 12:01 AM
Hi, I'm so sorry that Deirdre has had such discomfort from her Milwaukee. However, I can't agree with Sins about it being a torture device - if fitted properly (which sadly, hers wasn't) they can be very effective for thoracic curves with an apex above T7. Yes, they're not nice to wear, but considering how well they worked for me, I can't possibly say anything against them. They don't have to be all that uncomfortable either - the neck ring is the worst part - and they allow for more air to reach the skin and for the lungs to expand better than a cast or TLSO would.
Vicki actually wishes she had been given one instead of a TLSO, because she thinks it would have been more effective for holding her thoracic curve!
13th November 2005, 09:41 AM
I totally agree with you ! A well made Milwaukee can be a very effective brace - I think the skill of the orthotist plays an important role here. This Art guy is a total loser and I've already filed a complaint ! We've already paid for this brace because they demand payment as soon as it's picked up. I'm afraid to put Deirdre in it for fear it may cause more problems. The first night she wore it, I had no reason to question this orthotist's work because I thought he knew what he was doing and since he works in that field, obviously cared about the welfare of children with scoliosis ! WRONG !!! Next time I see Dr. Rivard, I'll have him take a look at it. If her curve starts to progress, we have no choice but to put her in a rigid brace and I was thinking that night time wear would be started initially with daytime wear of the Spinecor. Anyway, we're giving the Spinecor five weeks and have the Milwaukee on stand by - hopefully she'll never have to wear it and by then all the kinks will have been worked out !
14th November 2005, 09:32 PM
I'm sorry you've had this experience Sealy. Poor Deirdre. I agree that a milwaukee can be a very effective brace, although I keep telling myself that also to make me feel better about the prospect of it appearing in our lives sooner or later! Unfortunately, as in all professions, there are good and bad and we just need to appreciate the good when we come across them and complain about the bad.Hopefully Deirdre has recovered from her uncomfortable night and you'll not need to use the milwaukee again. Big hugs, it's horrid to see them in pain :squeeze:
15th November 2005, 04:06 PM
I spoke to the people at the hospital - I guess some kind of administrator - and they're investigating the incident. I get knots in my stomach thinking about the pain and moaning she went through that night. I hope it never happens to another child !! I'll try to get some pictures posted later today of the braces.
15th November 2005, 05:09 PM
I've uploaded pictures of Deirdre's Milwaukee into the GALLERY. I'm still waiting for coloured bodysuits before uploading pictures of her Spinecor because you really can't see it with a white body suit :-D
15th November 2005, 06:08 PM
:woe: I saw a milwaulkee
15th November 2005, 06:32 PM
Aw that's a nice little Milwaukee really! The bars are nicely padded and the metal round the neck is smooth and there's no chinpad, and the butterflies are gorgeous! It's a lot different to the bare-bolted metal braces I used to wear, and a whole world away from the appalling unfitting thing Sins had. There's lots of positive things about this brace Sealy....I do hope that it can be adjusted so Deirdre can wear it without too much discomfort.
15th November 2005, 06:44 PM
I guess the Milwaukee stirs up so many different emotions ! For now it's the spinecor full time. If and when she has to wear the Milwaukee, I'm planning on sleep time only and the spinecor during the day. If that doesn't hold her, then we'll see..... I thought the butterflies were nice too :-)
16th November 2005, 10:05 AM
why a Milwaukee anyway, any better, in deirdre's case, than any underarm brace?
why bother in the first place, she's got a virtually straight spine, which is corrected through spinecor 95 % of the time, laying horizontal at night there can hardly be any deforming force, (gravity)
Sins steam suggestion seems very sensible and clever
16th November 2005, 10:07 AM
but i do agree, that orthotist seems dreadful
16th November 2005, 11:14 AM
The reason I wanted the Milwaukee is because it's the brace recommended by all the "experts" for young children because it doesn't cause rib cage compression. Although Deidre's back looks absolutely amazing at this point in time, who knows what will happen with growth :???: Many of the people at the local hospital are of the opinion that she should be in a rigid brace right now, and I'm taking a real leap of faith by putting her in a flexible brace. The way things stand right now, it appears that putting her in the rigid brace will do more harm than good - there are just too many problems with this Milwaukee. Keep in mind that she has just come out of three years of serial casting, so even though the prospect of a Milwaukee for night time wear seems horrible - her lifestyle a few short months ago was much more restrictive. I'm meeting with orthotist #2 this morning so we'll see what happens - if they don't meet my demands I'll ask for a refund :-D
16th November 2005, 03:07 PM
Just seen this post now and I think you have been very restrained :(
I really hope that your complaint is taken seriously and not just filed away. I can only imagine how uncomfortable poor Deirdre was.
16th November 2005, 09:35 PM
Originally posted by Sealy@Nov 16 2005, 10:14 AM
if they don't meet my demands I'll ask for a refund :-D
gosh, are you paying for all this? No statefunded health service in Canada??
16th November 2005, 10:54 PM
75% of the cost of the Milwaukee is covered by the Provincial Ministry and the other 25% is paid for by the patient's family. 80% of the 25% is re-imbursed by any private insurance the family may have, so the total cost to us for the Milwaukee was about $300.00. The Spinecor is not covered by any provincial plan and our private insurance told me that they wouldn't cover "elastic" bracing but I submitted the claim anyway and guess what ???? The claim went through and they're paying 80% for the Spinecor :rox: In total, both braces cost us about $1,000 out of pocket. Without insurance or help from the provincial ministry it would have cost about $9,000.00 for both braces.
I met with orthortist #2 today and he is such a sweetheart !! He's going to make all the adjustments and said that if the brace still doesn't fit, he will do another plaster for a second brace !!!! :niceone:
17th November 2005, 07:56 AM
Sealy, would the Provincial Ministry pay 100% for someone who couldn't afford the 25% share? That's a bit hefty to ask of some families.
17th November 2005, 10:44 AM
I met with orthortist #2 today and he is such a sweetheart !! He's going to make all the adjustments and said that if the brace still doesn't fit, he will do another plaster for a second brace !!!!
That's good news Sealy.You'll have everything sorted in double quick time.
17th November 2005, 02:44 PM
Originally posted by jfkimberly@Nov 17 2005, 12:56 AM
Sealy, would the Provincial Ministry pay 100% for someone who couldn't afford the 25% share? That's a bit hefty to ask of some families.
That's a really good question ! When we did the mold for the brace, they had me sign a document that we'd be responsible for covering 25% on the day of pick up. The document also stated that if we changed our minds and decided not to go with the Milwaukee, we would still be liable for the 25%. We had to pay them $1,600 on the day of pick up and we're still waiting to get reimbursed for 80% of that from the insurance company. What happens if someone can't afford that ????
I'm interested to know what the system is like in the U.K and the U.S.
I feel so much better now ! I have a feeling we're in good hands with orthotist #2 :-)
17th November 2005, 06:09 PM
What a nightmare. I hope it all gets sorted out for you soon.
24th November 2005, 04:10 PM
We saw orthotist #2 yesterday, and he found that the Milwaukee brace was much too small for Deirdre. I'm thinking her rib cage may have expanded after removal of the cast back in October. He basically applied a new mold for another Milwaukee which should be ready the first week of January. If we didn't have the Spinecor, Deirdre would be going all this time without any support for her back or else wearing an ill fitting brace :woe: Such a scary thought......
25th November 2005, 01:21 AM
Good thing you have the Spinecor! How is she doing with it? Any news to report?
25th November 2005, 03:27 PM
She's doing really well with the Spinecor, we're supposed to have her out of the brace for 2 hour stretches every day but she refuses to take it off - I guess this could be interpreted as a sign that it doesn't bother her in the slightest. Clinically, she looks really great! When I ask her to do the Adams forward bend test, her spine still looks like one straight line and there doesn't appear to be a rib hump. We're going for our first follow-up on Dec 8 (must remember to add that to the calendar) and I think that there will only be one inbrace x-ray at that appointment - right Gerbo ? I really wanted to have a back up brace for times when the Spinecor has to be washed or if things start to progress. Over time, if I see that the Spinecor is working out, I could arrange to get additional pieces as backup.
There are so many things I like about the Spinecor brace, the most important being that her rib cage seems to be expanding so I would assume that her lungs are growing as well. If she were in a TLSO or even the Milwaukee version we had, I don't thing her rib cage would be allowed to grow. I am so grateful we have this alternative available to us. I wish it were available to more parents and their children - it's a real Godsend !
25th November 2005, 03:37 PM
Originally posted by Sealy@Nov 25 2005, 02:27 PM
and I think that there will only be one inbrace x-ray at that appointment - right Gerbo ?
that's what it says on the website, saying that, if clinically it looks good, I think you should ask for a good reason to do it now, alternatively why not wait till the 3 months review to re x-ray
still, whatever they suggest
It is lovely to hear you talking so enthousiastically about this brace, and I just pray that in 4 weeks time i'll be able to say similar things
25th November 2005, 06:17 PM
Dr. Rivard told me that the next follow up appointment after December would be in 5 months. I do like your idea of deferring the x-ray until later and if the clinic were close by, I would probably go along with that - it's just that we have to travel so far (5 hour each way) and not get anything definitive would seem like a wasted trip. Does that make sense :???: I'm planning to ask for spare pieces next time we go, in particular thigh bands... how expensive can they be ?
25th November 2005, 06:45 PM
I am sure that dr rivard will tell you whether he feels at this stage that he needs an x ray to assess, and I am sure you will be perfectly happy to accept his advice.
In any case, good treatment now will prevent so many future x rays, why worry.
straps cannot be expensive i would have thought, its just material
26th November 2005, 12:40 AM
Oh, it does sound very positive!
Huh. I never considered the impact of a rigid brace on the rib cage during these early years of growth. Does it have an impact on lung capacity? I'm sure it's not as bad as fusion, but it would have some limiting effect, wouldn't it?
26th November 2005, 04:41 PM
Originally posted by jfkimberly@Nov 25 2005, 05:40 PM
I never considered the impact of a rigid brace on the rib cage during these early years of growth. Does it have an impact on lung capacity? I'm sure it's not as bad as fusion, but it would have some limiting effect, wouldn't it?
I think it would have a very limiting effect on lung growth. Unlike casts, braces are very tight and it would restrict rib cage growth. I really believe that rigid braces in very young children can make things worse. I read somewhere - I think it was a Robert Campbell article - and he described the first eight years of lung growth as a "honeymoon period". In the Mehta article, she also states that pulmonary alveoli reach 300 million (almost adult size) by the age of eight. What's the prognosis for children who continuously wear TLSO's throughout that period ? Do they miss out on this pulmonary growth ? I don't know the answers to this... It's sort of like a catch 22 situation - you want to prevent the curve from worsening and impacting on pulmonary function and at the same time the brace is restricting rib cage growth.
27th November 2005, 11:30 AM
It probably was Dr. Campbell. When I consulted with him earlier this year, he was pretty convinced that even if he could expand my rib cage now, my lungs wouldn't grow to fill the space.
Going back to my case, I don't see why I couldn't have surgery to expand the thoracic cavity and a lung transplant to fill the space. Don't they do full and/or partial lung transplants now? I'm willing to take anti-rejection meds. *whiny*
27th November 2005, 04:24 PM
Great idea Kimberly, but I guess the problem would be in finding a pair of lungs for you - I don't know about the US, but in this country there is always a shortage of organs and people awaiting transplants are prioritised according to need. Sadly, someone who has smoked like a beagle all their life and has got lung cancer as a result would be classed as a higher priority than someone like yourself :(
I never realised that TLSOs are supposed to fit tighter than plaster casts. My casts were always pretty tight anyway! Oh well, it's nice to see a "positive" side to wearing a Milwaukee :-)
27th November 2005, 08:20 PM
i guess TLSOs are tighter partly because they have padding in order to exert pressure on specific points?
27th November 2005, 09:48 PM
As far as I know, Boston braces have pads, but not all TLSOs do.
27th November 2005, 11:43 PM
The orthotist from hell explained to me that braces have to fit tighter than casts - Deirdre's casts were always very loose and comfortable so I can't speak for everyone. I've read accounts of some braces being so tight that the child turns blue :-o I don't think that could be too good for rib cage development. Experts all say that young children 'should' wear Milwaukees.... that's why I chose the Milwaukee as the back-up brace for Deirdre. Given a choice though, I prefer the Spinecor.
Lung transplant seems like such an enormous surgery....is this what you're looking at right now ? I haven't really looked into that kind of surgery, so I don't know the risks involved. It seems very interesting....
27th November 2005, 11:47 PM
Blimey!! Oh well, at least they make Milwaukees without the neck ring now, so children whose curves are low enough can get away without it. I think I'd prefer a low-profile Milwaukee to a Boston anyway - those TLSOs get very hot and sweaty!
28th November 2005, 12:20 AM
No, I'm not looking at it. It's just an idea I came up with in the last several months after I absorbed what Dr. Campbell was telling me. It's not going to happen, but it seems like a solution to the problem. Stem cell research! That's the key. They can custom-grow my lungs, and I wouldn't even need anti-rejection meds.
28th November 2005, 11:37 AM
Originally posted by jfkimberly@Nov 28 2005, 10:32 AM
I've got quite a medical team, but they aren't at all coordinated.
same old story, but indeed you need to do something
for what it is worth, added link to a page with links to some sleep apnoea selfhelpgroups, maybe you van get some useful advice from one of them
28th November 2005, 11:42 AM
Oops, sorry... I split the thread, since this one is about Sealy's horrible orthotist, and the bracing issue in general...
The BiPAP discussion is here (http://www.scoliosis-support.org/modules/ipboard/index.php?s=&showtopic=2533).
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