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Old 03-09-2003, 07:48 PM   #1
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Post Traumatized at the Urologist's

When I was seven, I had a lot of urinary tract infections. I ended up having surgery for an obstruction and then was submitted to many cathaterizations and dialations that were pretty painful (especially for a seven year old). The whole experience was pretty tramatic and as an adult I look back on it and get pretty angry about what I went through and wonder how much of it was really necessary and couldn't they have done something about the discomfort. Has anybody else had this experience?

 
Old 03-13-2003, 12:55 PM   #2
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Pfretzsch,

I can understand your anger. I was born with spina-bifida among other problems, and had various tests and surgeries at a young age. I can remember feeling very frightened during some of the tests, even the simple, painless type, mainly because no one bothered to explain what was happening and what to expect.

Years ago, I think the general mentality was that children either could not understand or just did not need to know. Children are not idiots!! I know that much of my fear could've been alleviated had someone bothered to fill me in on what was happening. If left to their own deductions, children will usually imagine the worst.

I hope that things have changed over the years. Children are people too, and have every right to know and understand what is happening to their bodies. I now have a 3 y/o son who is healthy in every way. But, when it comes time for a shot, or whatever, I make a point to explain to him, on his level, what to expect. I do not tell him that "it won't hurt", because shots DO hurt, but I make sure he knows that it doesn't hurt for very long. Before any regular visits (when no shots will be given) I still make a 'run down' of all the things he can expect will happen in the Dr.'s office. I also make sure he knows that we have plans AFTER the Dr. visit, so he is assured that life will go on as usual and I will be with him. (I often thought that my parents were not aware of what was happening to me during my tests).

I'm sorry that you had this experience as a child. So much has to do with the parent giving adequate information to the child, as well as those medical professionals involved. Sadly, a child must often try and decipher bits and pieces of what a Dr. is telling the parents, which is usually in terms a child cannot understand. The child is forgotten in the whole process, or given trite statements like, "now, be a brave little soldier". How I hate that word "BRAVE" as a child. No one ever bothered to ask me if that's the way I really felt. So I tried not to be exposed as an imposter, one who was feeling anything but brave, and kept my fears to myself.

As you can probably tell by all this ranting, I still get angry thinking about how it was for me growing up, in that respect. I am soon to be 45 y/o, and facing yet another spinal cord surgery. I am just now able to tell my family that this time they need to allow me to NOT be brave, because I'm not feeling so brave. They need to let me be afraid, and I need to let them know that.

I can only hope that the medical professions have become more sensitive to the children who are in a scary place, and having scary, strange things done to them. Children are NOT incapable of understanding most medical conditions and procedures, if presented in a 'child-friendly' way.

Good Luck to You,....franjo

[This message has been edited by franjo (edited 03-13-2003).]
__________________
Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.

Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989
Tethered cord release-2003
Fusion with instrumentation with lots and lots of screws-2003

 
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Old 03-13-2003, 01:47 PM   #3
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Pfretzsch & franjo-

I am sorry to hear that you both were treated so badly. I always felt like I was "the only one" and tend to feel to this day (I am 34 eek!) a little "crazy" about medical stuff. I was born with CP (cerebral palsy) and was "tortured" (at least that's what it seemed to ME) as a child. I too was made to feel bad if I wasn't "brave" so I learned to pretend that everything was OK. I too am still VERY angry when I think about the way that I was treated. I have done a fair amount of research in to this topic and have learned a few things that make me angrier still. Apparently, they used to think that babies and young children either didn't feel pain or wouldn't remember it so it was standard practice to perform procedures with little or no pain control (even open heart surgery!). Studies now show that the children who were thus treated have a much lower pain threshold and a hyperactive pain response. I don't think that my fear will ever go away, but I have learned to speak up for myself. I now DEMAND adequate pain control even though I am continually told that I should have had "enough" already. The difference is night and day. For me, inadequate analgesia= nightmares and horrible anxiety after a test/surgery. I have discovered that if I am given proper pain control however I am fine afterwards. I am very choosy about what doctors I will work with because if I don't trust them to adequately treat my pain then I can't deal with tests etc.

franjo, I know how deep down scared you are. When it comes to medical things its almost like I am three years old again and I find it so hard to speak up for myself. I tend to "withdraw" from the situation as a defense as that was the only thing I could do when I was younger. I encourage you to share your feelings with your Dr (if you haven't already)so that he will know going in that you need some TLC.

I think that the medical field still has a ways to go in "treating the whole person", but I believe that today that they try harder with children to make things as painless as possible. franjo, I admire you for advocating for your child. How does that quote go? I used to be fearless but now I just try to be brave. At least I know I'm not alone in my struggle.

 
Old 03-13-2003, 06:00 PM   #4
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Thank you so much for your very thoughtful responses! It really means a lot to me. I feel a bit less alone and a bit more like I have a right to some consideration and understanding when I am in a medical situation. (Though I really wish I had screamed bloody murder when I was undergoing all that nasty stuff as a little kid! I guess that is why I am such a difficult patient now.)

Pfretzsch

 
Old 03-13-2003, 10:29 PM   #5
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Pfretzsch and Shaman,

I don't know about you two, but it's been great sharing this with someone who understands. I've talked with my sister and husband about it, but they don't totally understand, and I wouldn't expect them to. I don't think I was necessarily traumatized by my situation as a child, only confused, scared, and lacking way too much info.

And Shaman, I do understand what you mean by withdrawing as a defense mechanism. A kind of giving in, or making a decision to be helpless in a helpless situation. I do that even today. An "Oh well, here we go again" type of thinking. That kind of thinking has produced a bad outcome for me. In '87 I agreed to a surgery that should've never happened, only because I had such a blind "faith?" in a doctor's ability to "fix" things. They told me I needed the surgery, and I said, "Oh well, here we go again". This time around I'm being more proactive in my own treatment and asking lots of questions. The Spinal Cord Disorders board has helped me tremendously to this end. I can't believe how ignorant I've really been all these years about my own condition.

I believe that every child should be assigned an advocate when undergoing any treatment that may cause confusion or anxiety. Ideally, the parents would play an integral part in helping the child through something like that but, let's face it, not every child has that luxury. Some parents just aren't very good at being strong themselves.

I wish you both the best. We survived---a little bitter maybe, but we made it through. Maybe we were brave after all.

-franjo

[This message has been edited by franjo (edited 03-14-2003).]
__________________
Spina-bifida occulta; Congenital Scoliosis (dextrorotatory and 'S' curve, 42 thorasic and 57 degrees lumbar); Meningomyelocele (split cord @ L1); Diastematomyelia (re-sectioned at L2-3); tethered cord @ S-3; cysts on cord; various developmental abnormalities of the spine: narrowing of all disk spaces, defects in posterior arches, ectasia of the spinal canal and dura, segmental disease, sclerosis in L. iliac bone and adjacent sacroiliac joint, unilateral osteitis condensans ilium, hypertrophic facet disease L4-5 and L5-S1.

Surgeries include, but not limited to:
Lumbar fusion-1968
Fusion with Herrington Rod instrumentation-1970
Femoral osteotomy-1971
Tethered cord release-1987
Rod removal-1987
Chiari-type pelvic osteotomy-1988
Trochanteric osteotomy-1989
Tethered cord release-2003
Fusion with instrumentation with lots and lots of screws-2003

 
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