I need help figuring out where to turn/go next.

[DammitJanet]

I dont know if anyone actually remembers or knows about Cory's physical problems but I will explain and then ask for help.

He was born with a problem with his shoulder not being attached correctly...left shoulder. It was called a scapular winging and was attached with what we were told was a Sprengels surgical procedure...or...he had Sprengels Deformity I am not completely sure at this point in time. My mind is confused now.

He also had a problem with his feet where they turned inward badly and had to have those reverse last laces for almost a year and a half...or two years when he was a baby. You know what I mean...his toes pointed into each other. Also his head tilted slightly to one side but we worked on that with exercises and it grew straighter.

Obviously he had some pretty severe ortho problems from the get go.

Now after the shoulder surgery no one ever said anything about his spine even though that is where they attached his shoulder...or scapula. He grew stronger after the surgery, he was four then. He got much better than they ever thought he would...he was defiant as we all know and showed them! He actually was able to do a push up at age 14 when they closed out his case and called him as done as he could be...about 90%.

Well now we are 9 years from then and in the last 3 years or so it has been slowly getting worse again. If he tried to do anything hard, he was in dire pain. Last year it was so bad Tony tried to work him and he simply couldnt do it. He walks hunched over and a doctor actually found scoliosis on a film that we had never been told about. He cannot bend over and touch his toes. His back is fused. He is in pain ever day and cries during the night.

I had been trying to remember the doctor's name at Duke that did his surgery and just lucked upon it one day while searching the internet. We called them. He isnt doing spines or shoulders anymore but transferred us to a guy who is doing shoulders. We went there yesterday. They acted like they didnt even believe Cory had surgery there! Said they couldnt find his records, hemmed and hawwed over what they were seeing, said it was something they had never seen before...ohhh...haaaa...hmmmm.

I mean you cannot fake a shoulder that will not stay in place and wont raise over his head. It is so obvious. His bones are clear. He is so thin you can see them through his skin. He is in so much pain but they say...oh...do PT and take some tylenol...that will help. Cory is ready to either shoot himself or someone else.

Duke was really his last big hope. If the place that did his surgery...the place that should surely believe him didnt....what hope does he have?

Where can I take him? Who do I turn to next?

 

[slsh]

Janet - Gosh.... I would've thought Duke would be the place to go, esp since he had his surgery there. Since they were rather unhelpful, are there any rehab medical centers around? We've got a rehab hospital here in Chicago, which treats not only folks with- disabilities (like Boo) but also stroke, traumatic injuries, just about everything. Not just doing typical rehab, but all kinds of evaluations for prostheses, equipment, Occupational Therapist (OT)/PT/ST, surgery for orthopedic/neuro stuff, etc. It's pretty much the place to go if you have any kind of physical difficulty. They are far more than what you typically think of when you think "rehab hospital".

Have you tried requesting his medication records? I know sometimes it's near impossible to get stuff that old, but.... goodness, how utterly frustrating!!

I find Duke's response really kind of bizarre.

 

[AnnieO]

Janet, I don't have any answers, but I do have lots of hugs for you... Cory too.

 

[DammitJanet]

Well...thats the bizarre response we got about the medical records. First they said something about medical records that old were in some sort of twilight zone. Too old to be on the computer but too new to be in paper boxes. ????? I think that means they dont want to go look for them.

Then at the end of the appointment they said something about how they would have to see about finding the surgical notes. Uhhh...wouldnt that be the medical records or do they keep them separate?

I thought about getting his medical records about 3 years ago but when I contacted Duke they told me I had to have the exact doctors. name and I didnt have it. I knew Cory's name of course and the date of the surgery. I find it hard to believe they cant pull up a patient by name and date of birth to be honest or even ssn and medicaid number considering his medicaid number hasnt changed in 20 years!

 

[trinityroyal]

I think you're right that the files are not easily accessible, and whoever you were speaking to was giving you the runaround because they don't want to go to the trouble of hunting them up.

Honestly, if any of those people had to live with the levels of pain they slough off in their patients...But that's a rant for another day.

Sending very gentle hugs.

 

[nvts]

Janet! They're fighting so this has to be short...try this link:

http://www.drnathwingingscapula.com/

Also, call the original Dr. back and ask THEM for his records as well. He may have some pull at Duke as well for both the records and referals.

Gotta go! Damn these 1/2 days!

me

 

[DDD]

I think nvts is right on target. on the other hand, his current medical condition would have to be evaluatedindependently anyway so perhaps his original records aren't that important. The part of your post that concerns me more is that they didn't seem prepared to explore how he is in 2010.That I definitely don't understand. DDD

 

[Mamaof5]

go back to referring doctor and tell him what they did. referring doctor may not do the surgery anymore but medication records are supposed to be kept for a length of time - perhaps they'd take the guy who did the surgery himself more seriously?

 

[susiestar]

janet, their seems to be quite a bit of info on Sprengels that comes up on google. I would probably focus on finding an orthopedic doctor who will work to figure out what is going on now. I am sure new tests will have to be done. The original surgery may or may not have been the standard treatment for this when it was done. Medicine may have moved past whatever technique was used then so docs now may not be familiar with the way it was treated back then.

i don't know if records are available after 7 years. I know some of my records from my teens were destroyed because they were only kept for that long. There is little to be accomplished by arguing about the old surgery. Treatment for the present condition would be my focus if it were my child. With ortho problems docs want to do the most conservative things first. Cory may have to go through PT and other procedures before he is a candidate for further surgery or whatever. Often insurance will not fund surgery if PT and things like steroid shots have not been tried first.

Is it possible for him to get a TENS unit to try? They can help with pain from muscle problems and are fairly easy to use. It might be a source of relief. Has he tried the Lidoderm patches? They are the lidocaine patches that are great for muscle problems. Insurance would have to pay for them because they are expensive, but medicaid should cover them. It is well worth asking a doctor about it. Often docs don't even think about them. When I have asked it often has seemed like the docs forgot they existed.

If he does get the patches, have him warm them up to skin temp before he applies them. Otherwise they don't always stick. I hold them between my arm and my body to heat them up. It really helps.

I am sorry he hurts.

 

[DammitJanet]

Ok...some info. Original doctor is still at Duke. He is the Head of Ortho there but only does ankles and feet. One thing I am very concerned about with dealing with Duke at this point is their specific areas of expertise. You see Dr X in Clinic X for the shoulder and he wont even look at the back or spine or consider that it may be part and parcel of the whole condition. Lets not talk about the fact that his feet were involved as a baby. Lets not talk about the fact that he cant breathe well now.

Go to a lung specialist clinic, go to a spine clinic, go to a geneticist clinic. Ok...but lets think big picture too. I think this is all one thing. It isnt that he fell and hurt his toe so we need to see a foot dr, had a car wreck and broke his collar bone, etc. This is all one huge birth defect.

They wanted to act like it had been so long since we had done anything but it really hasnt been when you consider I was also dealing with an out of control mentally ill kid so which came in more important...his mental health or his physical? At the time his shoulder was pretty good so I dealt with the mental health stuff. Their clinic dismissed us. You dont know how ticked off I am...lol. Every time I feel like I have finally gotten to the point I feel like I shouldnt feel some sort of responsibility for Cory's life or problems, something like this pops up. It is agonizing to see him writhe in pain and know that I may well be the cause of it. And I cant do a dang thing about it.

 

[flutterby]

I would go somewhere else to see an ortho at a facility that might not be trying to CYA.

A fresh evaluation is needed, and let the new doctor request Cory's records. I'm sure Duke will respond to a records request from a doctor much faster than from a patient.

 

[susiestar]

They certainly will send records to another doctor faster than you could get them. You need an ortho doctor who is not so specialized. I am sure they are out there. Call other hospitals and ask about their orthos. I am sorry he is hurting.

 

[Tiapet]

Janet, I can offer you a little insight into how Duke is working now and may help you navigate how to get what help you need and want with them there. It may or may not work, I think it will however, based on experiences.

First of all, if you can, get Cory in with a doctor at Duke Family Medicine (the main doctors) on Erwin Rd. My recommendation is to call and get Dr. Truijilo (Director who is good). Don't accept an appointment with anyone else, ask specifically for an appointment with her. She will act as "the gate keeper" and coordinate all appointments and basically be able to listen and "hear" that this is a "big picture" case. Explain to her what has gone on, what is going on, what you've been through. She won't be able to help you with the records though. I will explain that step next. Once you are in with her, she can guide you through and help you get to the right people, the right testing that you will want and need and since I know how strong an advocate you are, you won't have a problem I feel.

Next step. You can go about this two ways simultaneously or take it one step at a time and see which actually works best. I suggest you contact patient relations and discuss with them your problem regarding records access and how crucial it is that you find and GET those records for Cory. It may take them a small amount of time to work on it but they are your BEST allie in getting things done and done right as Duke WANTS you to be happy with what they do unconditionally! I think I understand you "talked" to them about the records but did you actually GO to the records department? It's in the basement of the hopsital (especially if that is where the surgury was done). It seems they have different locations of records based on where and what you have done. For example, if you are in clinics, the records stay within there and if you are outpatient at a doctors office somewhere part of their network there, the records are there but if you have anything to do with the hospital, then of course they are all there. Confusing for sure. I really think though, that the patient relations is going to be your best best to get things done.

It is so messed up how the doctors work on specialties and this one won't think about that or this, etc.. I understand your frustration on so many levels.But I'm telling you, having the gatekeeper that focuses on the over all picture actually gets things done and coordinates everyone and keeps everyone in line with their computer system and notes. A BIG plus is that your account is viewable online and YOU can see every lab, test (like xray, etc) that is done and the results (and yes you can print the report at home too). In some cases, if their is feedback from the doctor, it's there as well (in my case my doctor notes if my levels are ok or what was found on a test is expected or what is being done next, etc..). This is a new way of doing things for them in the last 3 years.

Give it a secod try this way and see if it helps. I feel bad for Cory, I feel the pain and frustration but I'm here to offer some advice and suggestion that might help you on this journey. If I can make it better and more productive, even better! Good luck and if you need anything else, let me know.

 

[Lothlorien]

Hospital for Special Surgery in NY. They are an orthopedic facility that specializes in these "unusual" disorders. Call and ask about a specialist for shoulders and for scoliosis.

 

[DammitJanet]

Tia...thanks for that advice...Im going to attempt that. Gosh this is a LONG distance to travel for care but if it helps, so be it. I dont know if his medicaid would cover out of state care. I know his medicare would, however that would leave the other 20%.

Im gonna go see if I can make an online appointment with this Duke Family Medicine doctor.

Well...I just made an online appointment with that family medicine doctor...we shall see. I also called the medical records dept and they told me that his medical records should still be there! Im gonna see how we can find a way around that one. They want to charge an arm and a leg for the records. Gotta think. His peddoc should have had his notes right? Gosh people just dropped the ball on this and most of all me...I should have copied notes from day one but I just didnt know. I would be much smarter now.

 

[nvts]

Gosh people just dropped the ball on this and most of all me...I should have copied notes from day one but I just didnt know. I would be much smarter now.

Alright! Enough of that talk missy! We've all been brought up to believe that medication. Professionals have nothing but the best of intentions. They'll care for us, keep records, analyze everything from top to bottom and make the appropriate referals and at least a cursory glance at something that may have been impacted by the initial problem.

Besides, your screen name is "Dammit Janet" not "Dammit Janet, M.D.". Stop kicking yourself! You addressed the critical need at the time and then went to town working on the mental health issues - don't accept blame for something you didn't do! There - enough lecturing!

We love you Janet, and know that you did the best that you could! Remember that we're all a lot smarter about these things than we were before!

Beth

 

[DammitJanet]

I know Beth...I just feel so damn guilty about his entire life. I passed on the genetics for the bipolar, the personality disorder and now because I didnt know that I was pregnant when I was sick and had xray's, he ended up with birth defects. Oh the doctors tried to convince me to abort but I told them I was willing to accept whatever was given to me and would deal with it no matter what. Well, now its not just me dealing with it, its Cory. Did I really make the correct decision? Its hard to think I sentenced him to a life of pain.

Sigh.

On the topic of the Family doctor Tiapet...I am too far away. They only accept patients within 60 miles. Sigh. I have to look elsewhere. They were real sorry.

 

[nvts]

Well the alternative would have sentenced him to no life at all.

Look, any number of people in this group have many illnesses, very few would say that they wish they'd never been born except when in the worst pain. Yes, Cory has his bad times and God knows that you've shared the battle with him - but truthfully, when all is said and done, you two have a bond that would never had been if you'd gone along with the Doctors. Think of the number of women who were counseled along the same lines because genetic testing told them that their child would have Downs Syndrome, cystic fibrosis (I was told Evie might), or countless other diseases that gave birth to perfect babies.

I have to say this again: YOU DID NOTHING WRONG!!! Cory would never look at his babies and wish that he'd never been born (well unless they're on his last raw nerve!).

All this is, is life. Nothing more, nothing less. You have to realize that what doesn't kill us certainly makes us stronger. I don't want to be glib or cliche' about it but I'm telling you the truth. Please, please realize this...you are working with what you can - and we're here to let you know that. You are a strong, wonderful, kind and caring woman that's done a wonderful job with her son. Don't lessen that by looking at the past and thinking "what if?". "What if" is one of the most overblown questions that humankind has beaten itself up with for centuries. You're better than that.

Now get out there and fight - it's what you do best for your not-so-little man!

Love ya my friend!

Beth

 

[susiestar]

Beth is right. You have nothing to be ashamed of. Any xray place worth their fee will take precautions if a woman doesn't know she is pregnant - just in case. Heck, I have had to cover my belly up with an apron to help Jess through some xrays. I had a total hysterectomy years before and still they insist!! How could you have known that the xrays would do that? Once you knew you were preg you did the best you could. I know you did.

I bet if you asked Cory he would say that you did the right thing. Regardless of the pain he is in. I know many of my problems were inherited and some may likely be due to the doctor telling my mom to drink a glass of red wine every night while she was preg with me. It seems unfathomable now to think a doctor would have ordered that but they did. The same doctor who delivered me told me I was preg with Jess. He even remembered my mom because I looked just like she did at my age. He even mentioned the red wine, said he would never have ordered it now, but it was the best he knew then!

I don't wish my mom had aborted me. Cory feels the same way.

If the records are sent to another doctor there is almost never a fee. They only charge if they are sent to patients or to an attorney. Any ortho Cory sees could request them. heck, a chiropractor could get them. Not all will let you have a copy, but if you know them they will. Our therapist got all of Wiz psychiatric hospital records for me at no charge. Over 1000 pages. She skimmed them and now I have them. If you are on good terms with your doctor, or Cory is with a doctor, then you can probably get them that way. Around here the charge is about fifty cents a page, so the cost can be huge.

Be sure to request the surgical notes as well as the chart. They are different. That is how I found out what happened during Wiz' urinary surgery at age 2. The surgical notes clearly tell what happened as he woke up during the surgery due to the idiot anesthesiologist not paying attention to the ten places it was written that 2 operations were being done. They even show his heart rate, blood pressure and even pulse ox changing!

this is what it is. So is the bipolar and stuff. It is horrible that it happened, but it is NOT anyone's fault. Period. Don't you EVER let me catch you telling my friend Janet that it is in any way her fault again. You talk nice to my friend. (Or I will come sew YOUR pockets shut and embroider a big neon flower on the seat of YOUR britches! So there.)

 

[Marguerite]

I wouldn't give up on Duke necessarily. Their apparent disbelief could also be "Wow, we can't even see te evidence of past work on his body any more." But not necessarily disbelieving you. Or even if they were - stick around. It's when you walk away that they never learn they were wrong, and continue with the arrogant attitude that got them out of a challenging patient last time.

The records have to be there. Also his previous doctor is there, even if he's not doing shoulders any more. So I would persist and make it clear- if they can't find his files, they have to admit his files are there somewhere. And in the meantime, you have some information plus there is a doctor who may have some recall of what he did from memory. The thing is - he is in pain, he is suffering, he needs help. Surgery done when very young does tend to heal amazingly well. I've heard where babies with mild/low spina bifida can be operated on in utero, and later in life they can't find any scars.

Another button to push - there could be a research paper in this case. A chance to write it up and get some recognition in the peer journals.

But if you need to move on, only do it after you've really tried to educate these guys. Because every time you move on, you have to start the whole education/information thing form scratch. And if a place like Duke are behaving this way, don't expect other places to necessarily be any better.

It's going to take patience and effort on your part. it shouldn't, it's not fair, but Cory needs help so you take the crud you have to take, in order to get him the help.

Touching toes at 23 - he shouldn't be able to do this well by now. Although his range of movement may well be more limited than it should be. But we get misled by various physical fitness videos in the things we're made to feel guilty about not being able to do. But we learned this one from husband's doctor - because husband CAN touch his toes, and the doctor said, "Being able to do this at your age is bad. It is just one more bit of evidence that your joints are too loose and this is causing osteoarthritis." difficult child 1 can also still touch his toes and again, the doctor says it's a concern. This doctor is a rheumatologist. Being able to reach down a long way - yep, we need to do that. But not actually touch the floor, not once we're adults. Unless we happen to be very long in the limbs.
I'm very flexible (especially for my age) but because I'm long in the torso and short in the limbs, I haven't been able to touch my toes since I was about 14 years old.

I hope you can get some help for him. What about getting him into a pain clinic at least, for now? He needs to get his pain under control fairly quickly, it sounds to me. Then let the other doctors get their act together, while Cory at least has less pain to put up with in the meantime.

Marg