Revision Surgery after implants removed. Question before Visit Thursday

[twinsmom]

We visit the doc on Thursday and I have been trying to look up articles and info without alot of luck. So I thought I would ask you all to chime in.

1) M 's body looks like a question mark. Stomach is out like a 2 month pregrancy. Hump over her right shoulder noticable -neck shortened and chin jutting out. I have read about flatback, artheorisis sp? but I don't know if they fit in here. I have also read about ostemoies sp? Not alot of information. Does anybody have any experience with any of this?

2) Our insurance only covers our state. So no out of state consults. Our doc has all the qualifications but young and in the beginning really really nice.But we do have questioons with the revision surgery failure and how he handled the two revision surgeries. I think the next surgery will be a fairly new surgery for him. He doesn't believe in taking out instrumentation. We can go to another hospital an hour away, not as pretigious, where one of his students works. He has no experience in revision but has the year long fellowship. Another older docotor doesn't have the fellowship but belongs to everything and has done revision surgery.

3) Maddie likes him. He has done wonders in working with her and she has matured beautifuly and handling all of this very well. She really deosn't want to do another consult. Hated the last one who suggested surgery. She wanted to wait it out in hopes of keeping the instrumentation in. She was afraid, as was the doc, what would happen with the instrumentation removed.

Any thoughts on going or staying the course?
Any questions I should be asking?
Thanks!!!!!!!!!!!!!!!!!!!!!!!!!!

[LindaRacine]

Hi...

I'm afraid you've gotten me totally confused. Haven't her implants already been removed? (If so, why did you say that one surgeon didn't believe in removing the instrumentation?)

IF the implants have already been removed, the surgery to put new implants in will essentially be just like the first surgery. It could actually be a lot easier because the holes have already been made for the screws.

--Linda

[twinsmom]

Sorry for the convolusion!

Yes, the implants were removed by the surgeon who doesn't believe in implant removal because he was forced to by ID. She had a sinus tract infection in her back that was draining so that was surgery#3.

ID wanted them out right after the first revision surgery to clean her out. His problem was that he did more work - which was great and made her back as good as her sister's - but he didn't know what type infection it was and never planned to take them out. Never told us that was an option. We never checked either.While she was in the hospital after that surgery, ID was saying the instrumentation should have been taken out and should be taken out. While ID was there over the weekend, he was a no show. So they got to us first. Big fight ensued with me involved as well. Not by choice! Phone call from Administration about the fight!

Now her back looks terrible. It looks worse than before surgery. The way she looks is disconcerting. I have tried to research multiple revision surgeries and what they do and I get more medical terms I don't know anything about.

It would be wonderful if it's as simple as you say!!!!!!!!!!!!!!!!!!!!!!!!!! My anxiety level goes sky high with this practice now.

1 The I don't remove ..... statement was said last visit and he told my daughter it was her fault that she developed the infection because it was from her skin.
2 Before the sinus tract infection burst open, 2nd opinion doc questioned whether her back was harbouring infection and both ID docs felt the same.
He didn't feel that was an issue.

I emailed the nurse with my weird issues and concerns because we have had other medical and family issues going on this month. I am not my best with stress these days. Or any day this year.

I guess I am looking for how to handle this. What questions should we ask with this background? Your solution would be great but I think my trust is fading, though my daughter and husband feel we should stick with a known quanity. I do have an appt with another doc in August. Mary

[Back-out]

1 The I don't remove ..... statement was said last visit and he told my daughter it was her fault that she developed the infection because it was from her skin.

I'm up much later than I can afford to be but your post was so disturbing and arresting I had to say something.

First, you have my deepest sympathy and admiration for all you are going through and how you're handling it.

If anything, you don't haven't enough sense of entitlement on your and your daughter's behalves. These MDEITIES are human beings who are being well remunerated for their services and are supposed to be there caring for you and your daughters. This includes after hours (remembering a sad post where you doubted your right to call when your very ill daughter was running a high fever, AFAIR)

Any physician who would say what you quote the one above as saying, deserves stern discipline from an authority above him. When you can, document this in a letter CCed to more than one person in authority including (if he's a member) the SRS. Meanwhile, as an aid to recall, note it down with time, place, and circumstance, including - while you remember it - as much as you can, a verbatim report of what he said.

If anyone else was present, get them to validate it, ideally not family (but it will probably be hard to get a nurse or other staff person to do this). If worst comes to worst, a recording of your daughter's recollection would be good.

It is UNFORGIVABLE, professionally and humanly, for him to have uttered that thought to her. It is not only untrue, but trying to turn this into HER fault (talk about "blame the victim"! AND A CHILD!!!) is far, far over the line of what is tolerable from ANYONE, least of all, the doctor who is the most responsible for her plight. Unless he apologizes for this after you and he have a little tete a tete about it (which would, among other things, be a sign that he hasn't lost his marbles), I would think seriously about whether he is capable of handling her case now - medically and/or psychologically.

That kind of remark is the sort of thing a physician might come out with when he is utterly at his wits' end, and if so, you certainly need to seek more suitable care.

However, don't let him off the hook! Speak to a medical advocate and see what they might advise to obtain and keep objective records of his care-giving. I would advise going to medical records and obtaining operative reports, his own case notes of in-hospital care, and all notes about his care. Nursing notes too, if possible. Regrettably, records are sometimes changed after the fact. Also regrettably, these notes will cost money. If you wait, though, there is a risk that they will be altered. You need professional advice. See notes below on patient advocacy. They might have an idea for how to get them free (if they are sent to another physician copying is gratis, and maybe, with finagling, to them too! There must be a great many notes. The other physician notes should be part of your records too.)

Meanwhile, here are links both to a New York Times article about medical advocates and another for a free service. But the article makes the difference in quality and type apparent.

One of the for- pay patient advocacy training services is based at Sarah Lawrence College (mentioned in the article), and they or another service may give a compassionate reduction to take your case.

Note that services which charge, also do medical research to seek out the best options. It sounds like you could benefit from such an approach. It is possible that you may be able to get insurance coverage to go out of state, under special conditions - for instance, if it looks like your daughter needs such specialized/qualified services that no one in state can do your daughter's case justice (!).

The Atlanta=based Center for Disease Control (CDC) once gave me excellent free advice when I called a toll free number there. Don't know if this service still exists, but they might be able to help in some capacity since an infection is involved. There may be a database of hospital contracted infections too (the very idea of blaming your daughter!! )

In my case, I wanted to ask about about what I suspected were dangerous medical instructions about how to deal with a parasitic infection I had contracted. FWIW it turned out that the advice WAS dangerous and this was an occasion when I witnessed a physician alter his predecessor's office notes about me (crossing out the incorrect advice).

I hope you get good advice from others here, especially Linda Racine who is knowledgeable about conditions, physicians and insurance. How unimaginably terrible that while you are dealing with this crisis, there are other medical and family issues requiring your attention!

You are a remarkable lady! In your stead, I could not write a coherent sentence here, and yet I've seen you have even written reassuring notes to others on this site!

Hang in there! You and your daughters are in my thoughts and prayers. That doctor occupies a special spot in my mind's dungeon where he is getting whipped on the hour - and more!

http://www.nytimes.com/2009/09/12/health/12patient.html

the Patient Advocate Foundation, a nonprofit organization based in Newport News, Va.
800-532-5274 begin_of_the_skype_highlighting**************800-532-5274******end_of_the_skype_highlighting begin_of_the_skype_highlighting**************800-532-5274******end_of_the_skype_highlighting begin_of_the_skype_highlighting**************800-532-5274******end_of_the_skype_highlighting begin_of_the_skype_highlighting**************800-532-5274******end_of_the_skype_highlighting ; http://www.patientadvocate.org/

[twinsmom]

After the visit

Thanks for the support!!!!!!!!!!!!!!!!! I have talked to the hospital patient advocate. No help. I did manage totalk to the Outpatient Social Worker and she was great. Confirmed all of my feelings and thoughts. I used to be a social worker in a teaching hospital and I know very well what can go on.
It has been hard to be on the outside world!!!!!
My anxiety was eased alot this morning!
My daughter's main problem is the kyphosis and she does need surgery. The surgery will be similar to the first. However, they will do a STAT culture to make sure their is no infection and then operate or treat the infection before doing surgery. She will also have months of IV antibiotics through a med port or the p line in her arm. She is balking on that. My sister's med port implementation failed and she had both lungs collapse along with losing the entire volume of her blood. She suirvived but it was a miracle. The girls were young then and helped by playing with their same aged cousins.I don't know if she understands what happened and if this will be an issue. It will be for us adults. When she was discharged she went home to hospice for her cancer. Kicked the nurse out and lived another 18 months.

The doc called the ID and they are really working together this time! Finally, true cooperation. A big relief.!!!!!!!!!!!!!!!!!!!!!
His mood and demeanor was back to the days before the problem with her infection. And that was over two years. So I feel much better, less anxious about staying around. It seems they learned something things.

So now I need help in working with my daughter's issues concerning long term antiobiotics. Any advice would be great!

[Back-out]

I have talked to the hospital patient advocate. No help.

If you read the NYTimes article, they are specific about the limits of hospital advocates. (Conflict of interest). How about giving the free service a call?

So now I need help in working with my daughter's issues concerning long term antibiotics. Any advice would be great!

I am a great believer in therapy. (It's my training). Doesn't mean someone's crazy! They're there to help clients ventilate about fears, doubts, anger, etc. - work through issues and make decisions.
Some specialize in treating adolescents and the hospital should have some to recommend who deal with teens facing major medical issues.

It can be a great relief for your daughter to have her "own" person to confide in - and she should be assured her confidentiality will be respected (Indeed, it is by law if she's fourteen or over! Even parents don't have access to patient records/notes ). There may also even be group therapy there for teens with serious issues if she's able to be transported at all (and exposed to other people's germs)

Sloan Kettering (NY cancer center) has been doing a lot of work lately with cancer patients in group therapy - also have a rec room for patients, special time for younger ones. Professionals aren't allowed! It's THEIR space. Seems to do a world of good. Patients need to relate to other patients to whom they're just people, not their disease.

Her sister undoubtedly needs support of her own too! Groups for siblings of patients exist too, and for that matter one on one, work. She may not be the sicker one, but as you pointed out once, she certainly has a lot of issues to deal with! I think they both need support.

And so do you! Can't keep carrying the world on your shoulders alone! Backs break, in reality and metaphorically. I'm sure stress had a great deal to do with worsening my spinal problems (for many reasons).

Best!

[jrnyc]

hi twins mom
greetings from one licensed social worker to another...some of the best people!

am sending you a private message..

jess

[twinsmom]

MRI and MRI with contrast experience and Sports

Maddie finished her MRI with IV contrast this afternoon. She hates IV's. One trick for kids and adults who like kid stuff is to drink Hot Chocolate before you have the IV put in. I was worried about infection which was confirmed by doc's office however it seems the clarity of the first MRI was an issue. We had to go to the main campus but it went smoothly. We did forget about her belly ring but a wonderful Child Life Staff person helped us out with it. It would have been better just to have it done there so we could have had that other day free!. My Mom had her PET Scan yesterday. No word yet from the docs. I seem to go from test to test hospital to hospital.

Meg has begun thinking about playing HS soccer. She wants Varsity. She has tight muscles and even though she is an excellent player she has been prone to injury for the last three years. She has not played since January and not worked out or practiced. She sees no problem with this approach. I hope the team lists come out the day Maddie has surgery because the moans and groans will be enormous. Both girls played JV this past year.Coaches felt they were having a hard time rising to their past performance. They literally were released to sports the day the season began. Any atheletes out there with words of wisdom for her or me?

[twinsmom]

Ongoing Saga - more of my questions

Hi all,
I need your advice once again. We had our visit and the surgery is delayed until after summer vacation is finished. This has been the plan and gave us time to think about second opinions. We checked out some and were given several but never followed through because of insurance and money. I was looking forward to it as a small mini vacation. My daughter never wanted to go because of fears of money for the family along with the fact that she seemed okay with the doc. She has been angry but feels very comfortable with him. She has actually bloomed in a weird way.

My concerns are the allowence of doubling of pain meds. How does that strike you? Her pain is worse than it has ever been.

She conitinues to shrink - a loss of three inches so far. I worry about that as well.

ID put her on more antibiotics. I worry about that with what is to come.

He seemed politely dettached and focused only on my daughter. Not friendly at all. Which in some ways is good, she is old enough and it's less of a burden on me. We are terrible with questions and prep. I have been getting my Mom placed in Hospice and my mind is still shaky. I have notified the nurse by e-mail all that has been happening just so they know. I called with these questions and he never called back at least yet. Monday would be fine.

Is he putting us off hoping we will go away?

I worry that he is reading this and is angry and that anger will put my daughter in danger. I didn't disquise as well as I should have. Anyone could put two and two together.

I am so confused. It was really helpful to have this forum because no one could understand what we were going through. I feel like I keep on making mistakes and now this is endangering my daughter's life. I am getting angry with this wait. I don't want to cry on the phone nor get out of control. Since my father was a surgeonmy aim has always been keep the surgeon happy. Maybe this is interfering with things.

Any ideas or thoughts would be greatly appreciated. Mary

[jrnyc]

hi Mary
i dont really understand your post...except that you are very upset...
i hope you can stop blaming yourself...and realize that you are doing the best you can, or anyone could, under awful circumstances...to have to worry about your children and your mother at the same time...the stress must be just horrendous!

i didnt understand alot of what you wrote about...
who is doubling pain meds? or asking for it...or suggesting it...not clear...

did you write your questions down on paper, revise them, look them over, before asking them?

the surgery is delayed til the fall? am not clear whether you're happy about that or upset about it...?

jess

[twinsmom]

Undoing the convolution

Here are the questions.

We are so stressed we don't even have questions to ask. My husband is stressed to the max at work and he is a Stage III Kidney Survivor

1) My daughter has doubled her pain meds on her own and they are okay with that. She now has lost 3 inches in height. My concern is that she is getting worse and will need more meds and shrink more before surgery.Why the wait? 16 year olds don't always know what is best for them. Last time before we knew there was infection just loose instrumentation we waited and it had to be done earlier because of the pain factor. I don't want this to happen again.

2) Could they read the forum? The doc mentioned my "blog" on his way out of the exam room so its this or e-mails to the nurse. I can get paranoid under lots of stress. Yesterday the doc made a statement out of the air about taking out instrumentation. which reversed his statement from last time. I don't understand!!!!!!!!I didn't disguise my posts much but how could I with the unique situation. This has been so helpful. I had nowhere else to turn for support.

3) With this long wait for surgery based on ""her desire for summer" are they just waiting for us to leave?

4) Are my somewhat belated questions legit about pain meds and waiting period? Should I expect a return phone call from the doc or should I contact the nurse on Monday?

5) If they did read this - what should I do?

Sorry for the LDishness of the last post. I hope this is more straight forward! Mary

[jrnyc]

hi Mary
if feel so bad for you...no one could blame you for worrying about your kids...but it is beyond counter productive at this point! please try to stop...or you will make yourself too sick to be of any help to your children!
i doubt that the doctor reads the forum...most doctors are too busy and not really concerned...

i believe lost height is regained with surgery...at least, that is what i was told...so the waiting shouldnt be a worry in that sense...
maybe it would be better to communicate with the nurse rather than the doctor...nurses usually have more time...you could ask her "why the delay"...

if the doctor(s) are OK with the increase of pain meds, why are you so worried? you didnt say how many she is on now...? what is your fear? there is a limit to how many actually help with pain.

if you could go to a counselor or therapist......it could be really helpful...to relieve some of your extreme anxiety...
do you think you are at the point of needing some anti-anxiety meds, even temporarily? i dont know how you are sleeping with all this worry and fear..perhaps the objectivity of a counselor would really help at this point...

best regards
jess

[lor6027]

i am going through somewhat the same thing as your daughter. i had 6 failed fusions for scoloisis/kyphosis in 2007. got the mrsa infection. had to get all hardware taken out 8/2009. was on all kinds of antibiotics iv and oral. messed up my stomach big time. now with my spine having no support new doc. said my spine is collapsing. but even with all the hardware taken out infection could still be in there somewhere. so nobody wants to help me. i look like a turtle. also lost height, was 5'5 now 5'1. kyphosis curve was at 80 degrees before all surgerees now at 121 degrees scolosis was 26 degrees now 49. i even consulted an attorney but was told it was just bad luck on my part. your daughter is alot younger than me. i am 46. so that will help her. i wish i could give you some ansers but just hang in there and take it day by day. do not worry to much about the pain meds. as long as they help her let her take them. i have seen doctors in new haven, boston, and new york. and not too happy with any of them. good luck and hang in there.

[twinsmom]

Supports

And oh have I tried to build in help with meds and counselling.


Thanks for the reality check and I will view my concerns through your lens.
I will have my husband do the interactions with them from now on. That will help and get him more involved. Mary

[jrnyc]

mary...are you going for counseling..or are your daughters...cause i think it could really help YOU at this point...

jess