The blind leading the blind...
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admin
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Re: The blind leading the blind...
Ok I have the space you all are talking about. I have had it for 50 years in my erbs arm and I never had a choise of operation and now you have to many choises.I am happy they can do alot for erbs today just not a cure.I also know how bad you hurt because I had a mother who lived with my erbs to. I am here for any qeustions?Tom
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admin
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Re: The blind leading the blind...
I hear how confusing it can all get, when you have 2 saying yes and 2 saying know. I consulted with many bpi specialists via video/email/telephone calls and saw several others in person. Initially I kicked myself for opening such a huge can of worms and I was so overwhelmed. I had days where my head pounded in confusion and tears filled my eyes. I just didn't know what to think or who to believe. I also felt pressured at times to follow a particular surgeon's advice or what most of my friends were doing, yet in my heart I knew I had to learn and question more.
One day I was about to through in the towel and call it quits, seriously I was ready to almost toss a darn coin. What the heck...it didn't seem like I had anything to lose since this field lacked so much consistency and evidence based treatment was seriously lacking. Luckily I was on the phone with one of my bpi friends in tears crying out of confusion and despair. I was telling her that I have lost it, look how much information I have gathered, look at all the doctors my child has already seen, and sarcastically I said "this is ridiculous, enough is enough, how many more opinions do I need?". She said, "you know what....don't doubt yourself, you need as many opinions as it takes to make sense of all of this and make a decision". I almost thought she was nuts because I already had more information and opinions than anyone else I had ever met, but part of what she said sounded so true and practical.
You know what??? She was right on. With a little more searching, a few more opinions and a lot more questioning I was FINALLY able to put the pieces together. I know you probably don't believe me, but I PROMISE, if you put enough searching into it and figure out what questions to ask and what to educate yourself in, you will find the best answer for your child. I truly believe you will.
The road is rough and the journey is long, but if you are willing to get all the journal articles you can, pull out those anatomy books, speak to many therapists, muscle specialists, anatomy professors, bpi doctors, other parents, etc., you WILL find your way. Don't give up out of pure confusion and feeling so overwhelmed....how can you make an objective and informed decision in that state of mind any ways? Best wishes to you.
One day I was about to through in the towel and call it quits, seriously I was ready to almost toss a darn coin. What the heck...it didn't seem like I had anything to lose since this field lacked so much consistency and evidence based treatment was seriously lacking. Luckily I was on the phone with one of my bpi friends in tears crying out of confusion and despair. I was telling her that I have lost it, look how much information I have gathered, look at all the doctors my child has already seen, and sarcastically I said "this is ridiculous, enough is enough, how many more opinions do I need?". She said, "you know what....don't doubt yourself, you need as many opinions as it takes to make sense of all of this and make a decision". I almost thought she was nuts because I already had more information and opinions than anyone else I had ever met, but part of what she said sounded so true and practical.
You know what??? She was right on. With a little more searching, a few more opinions and a lot more questioning I was FINALLY able to put the pieces together. I know you probably don't believe me, but I PROMISE, if you put enough searching into it and figure out what questions to ask and what to educate yourself in, you will find the best answer for your child. I truly believe you will.
The road is rough and the journey is long, but if you are willing to get all the journal articles you can, pull out those anatomy books, speak to many therapists, muscle specialists, anatomy professors, bpi doctors, other parents, etc., you WILL find your way. Don't give up out of pure confusion and feeling so overwhelmed....how can you make an objective and informed decision in that state of mind any ways? Best wishes to you.
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Natalie M.
- Posts: 53
- Joined: Tue Dec 10, 2002 10:47 am
Re: The blind leading the blind...
Well, we have decided to get the CT scan, send copies to the three docs we have seen and ask them to consult with each other- surely, being professionals and dealing with a child, they will. This is BS.
I have asked several more questions to Dr. Goldfarb in St. Louis and he emailed me back. If anyone would like his answers, please email me at natalie.miller@coxhealth.com. It was interesting but we are still not sure and not eager to run into surgery.
Also, Logan came into us last night and showed us how she can finally touch her belly without her nonOBPI hand helping, she was thrilled. My dh and I looked at each other and cried tears of joy and confusion, heartache. It never ends...
Last, I need Dr. Naths new email address and phone number to his clinic direct, if any one can help, thanks!!
Nat
I have asked several more questions to Dr. Goldfarb in St. Louis and he emailed me back. If anyone would like his answers, please email me at natalie.miller@coxhealth.com. It was interesting but we are still not sure and not eager to run into surgery.
Also, Logan came into us last night and showed us how she can finally touch her belly without her nonOBPI hand helping, she was thrilled. My dh and I looked at each other and cried tears of joy and confusion, heartache. It never ends...
Last, I need Dr. Naths new email address and phone number to his clinic direct, if any one can help, thanks!!
Nat