hi isnt this a surprise to find you all here.
Ill explain my situation. I am the mother of a 17/f/ROBPI. We never dealt with this injury at the time of birth because at that time we had no resources to do so and doctors said she would heal up just fine. well she did not. this has never been mentioned until last year when her doctor offered her the change to see Mr Hems in Glasgow. I think the doctor was wrong to offer this without my permission. now i am gettin all the blame for not helping her through her life and finding her help sooner or explaining what happened.
The truth is, i didnt know. IF any of you have experience of this 17 years ago you will understnad what i mean. Now i am not in a good situation because she wants to go ahead and have an operation and i dont want her to have it because her arm does not affect her anymore and i dont see the point in it. she wlil be going to college and she is getting nervous about people asking quesions but iv told her that they will ask questions anyway because she is not gonna have this op right now and then she will be all strapped up and they will ask about the strapping. i tell her she is being silly, but she insists she is not. i think she is over whelmed by the hlep and she is jumping in head 1st and i just wants her to do what is right for her.
HELP!
Confused
Re: Confused
There are several adults and teeneagers here that are contemplating and have had surgeries later like this. Perhaps they can respond and help you understand from a different angle where your daughter is coming from. Seventeen years is a long time ago and I can't imagine that you got much information about this. We've only been here 3 years and the growth of this board plus the awareness growth in that time has been tremendous. Parental guilt FEELINGS is something you will get much assistance with here.
-
freddysmom
- Posts: 8
- Joined: Fri Jan 24, 2003 6:01 pm
Re: Confused
Hi there
I'm sorry you are having this conflict with your daughter - you must be very upset.I am sure it has been a steep learning curve for both you and your darling daughter.
What I am going to say may upset you, but the reason I say it is to try and offer a balanced point of view, I hope you will read it in the spirit it is intended.
Your daughter is almost an adult, she went to see the Doctor because she wanted to go, she wants to have this
surgery for her own sake - she wants to feel more positive about her arm and if having surgery will help her to feel more positive then maybe it's a good thing.
As a mother I understand your own feelings- really I do - but your daughter has made a decision about her arm. It may well be that in the end you are proven correct, that if she does have the surgery people will still ask questions - they probably will- but she may feel more positive about answering those questions if she feels she has some control over her condition.
You say that her arm "doesn't affect her anymore" well, maybe not physically - but it's obviously affecting her on a deeper level or she wouldn't feel the need to try and make her arm better than it is.
Please please please, think again, don't tell her she's being silly - she's not -try and support her in her decision - even if you feel it's the wrong decision, try and maintain a good relationship with her, she will need your loving support if she chooses to have surgery.
Also remember the Doctor wouldn't have offered her the surgery if he didn't think it was a good idea for her
perhaps if you discuss your concerns about the surgery with the Doctor he may be able to allay some of your fears.
The prospect of your child having surgery is always a terrifying one for parents, but your daughter is old enough to understand the process and all it entails and if she and the Doctor are willing to take the chance, then who knows, it may well work out for the better.
My blessings to you at this difficult time.
I'm sorry you are having this conflict with your daughter - you must be very upset.I am sure it has been a steep learning curve for both you and your darling daughter.
What I am going to say may upset you, but the reason I say it is to try and offer a balanced point of view, I hope you will read it in the spirit it is intended.
Your daughter is almost an adult, she went to see the Doctor because she wanted to go, she wants to have this
surgery for her own sake - she wants to feel more positive about her arm and if having surgery will help her to feel more positive then maybe it's a good thing.
As a mother I understand your own feelings- really I do - but your daughter has made a decision about her arm. It may well be that in the end you are proven correct, that if she does have the surgery people will still ask questions - they probably will- but she may feel more positive about answering those questions if she feels she has some control over her condition.
You say that her arm "doesn't affect her anymore" well, maybe not physically - but it's obviously affecting her on a deeper level or she wouldn't feel the need to try and make her arm better than it is.
Please please please, think again, don't tell her she's being silly - she's not -try and support her in her decision - even if you feel it's the wrong decision, try and maintain a good relationship with her, she will need your loving support if she chooses to have surgery.
Also remember the Doctor wouldn't have offered her the surgery if he didn't think it was a good idea for her
perhaps if you discuss your concerns about the surgery with the Doctor he may be able to allay some of your fears.
The prospect of your child having surgery is always a terrifying one for parents, but your daughter is old enough to understand the process and all it entails and if she and the Doctor are willing to take the chance, then who knows, it may well work out for the better.
My blessings to you at this difficult time.
-
rachelcasa
- Posts: 729
- Joined: Mon Apr 21, 2003 11:45 pm
Re: Confused
I'm not sure if I can help here, but here I go. Welcome to the website. This site is amazing in every way possible. There are so many people out here who are dealing with this and we have never ever really had anyone to talk to about it. I found this site in April and have had great imput from people. I am scheduled to have the mod quad surgery in Texas on Sept.11. 11days!! I too felt as if I were jumping the gun on this. I was so overwhelmed at the time. I was so happy I cried. After consulting with Dr. Nath at TCH I cried again. Its been an emotional roller coaster here. However, I am taking the chance on surgery. I have heard good things about it and the chance of recovery are amazing. I am 31 left obpi. For years my mother felt the same way , like it was her fault etc. Like you said there was no help for it. Not in Montana anyways. (thats where I'm from) Amazingly enough there is help out there. Your daughter is at a very crucial point in her life right now. College, etc. I don't want to hurt your feelings in anyway but I really think you should look into it WITH her. Dr. Nath can evaluate her arm by looking at a videotape. He is very honest and I have talked to people personally on the phone who have had the surgery done. If you want to please e mail me and we can talk more on the phone. I would love to try to help your daughter out with any questions I can answer about the surgery and after I get back. I hope I can help!! Its a difficult decision to make. But having the obpi for 31 years, I wouldn't have it any other way. My arm didn't affect me that much when I was 17 either. Now, I can hardly lift it over my head. Its atrophying and it will continue to get worse if I do not get help now. Let me know how I can help.
Does your daughter post messages here yet? There is also the teen chat night for her that may help her vent her feelings as well.
Rachel
Does your daughter post messages here yet? There is also the teen chat night for her that may help her vent her feelings as well.
Rachel
Re: Confused
I wanted to say a few things too. I know that it must be very scarey for you to think that your daughter wants surgery on her arm. I am a 31 yer old that has had Erb's Palsy since birth. I, like Rachel, found this website a few months ago. I live in Alabama & went to Texas for the mod quad surgery on 8/14. I am less than 3 weeks post-op. No one can relate to how we feel. People has told me before, why have surgery, we hardly notice. That is not the point. The point is that she is wanting to do something that will hopefully help her for the rest of her life. I hope that she will read some of the post on this website. I can't tell you how much I have learned from these wonderful people. If I had the knowledge at 17 that I have today, there would be no question on what I'd do. People do ask me about my splint & I just give them a quick educational lesson. I am sure she might be overwhelmed about the surgery, but make sure she does her homework. I will be doing therapy for awhile. My mom was VERY nervous & excited for me too.
Deanna
Deanna
Re: Confused
Hi!
I'm glad you have found this website. I've been here for 6 years or so. Let me tell you a bit about myself.
I am a 22 yr old female. I have a Right brachial plexus injury. I have been trying to have surgery since I turned 16. So just about the time that your daughter has decided to persue surgery. It was decided that surgery for my shoulder and upper arm were not a possibility and so I decided to have surgery on my hand. On August 7 of this year I had surgery with a doctor from my area. He performed a tendon transfer to my four fingers in hope of finger extension. I get the splint off in 3 days. I am looking forward to seeing if it was successful, which I won't know for months.
I did go through a time where I was mad at my mom and dad for not getting me help when I was younger. But I fortunately have gained a better understanding that there were not the resources at the time and they were misinformed by doctors I saw previously. I am sure that your daughter will learn more and things will be forgiven. Don't beat yourself up about it.
I am fortunate that my parents were supportive of me pursuing surgery. My mom was there when I had my surgery on my hand. I understand that you feel that the injury does not affect your daughter anymore. Obviously it does if she wants surgery. It affected me at that age as well. There was so much more I wished I could do. If my parents were not supportive of me having surgery I don't know what I would do. Please recomsider what your daughter wants.
If you want to contact me feel free to email me. Good luck with everything.
Erica
I'm glad you have found this website. I've been here for 6 years or so. Let me tell you a bit about myself.
I am a 22 yr old female. I have a Right brachial plexus injury. I have been trying to have surgery since I turned 16. So just about the time that your daughter has decided to persue surgery. It was decided that surgery for my shoulder and upper arm were not a possibility and so I decided to have surgery on my hand. On August 7 of this year I had surgery with a doctor from my area. He performed a tendon transfer to my four fingers in hope of finger extension. I get the splint off in 3 days. I am looking forward to seeing if it was successful, which I won't know for months.
I did go through a time where I was mad at my mom and dad for not getting me help when I was younger. But I fortunately have gained a better understanding that there were not the resources at the time and they were misinformed by doctors I saw previously. I am sure that your daughter will learn more and things will be forgiven. Don't beat yourself up about it.
I am fortunate that my parents were supportive of me pursuing surgery. My mom was there when I had my surgery on my hand. I understand that you feel that the injury does not affect your daughter anymore. Obviously it does if she wants surgery. It affected me at that age as well. There was so much more I wished I could do. If my parents were not supportive of me having surgery I don't know what I would do. Please recomsider what your daughter wants.
If you want to contact me feel free to email me. Good luck with everything.
Erica