A place to vent

[Brendalu]

16,

I am so sorry your son and you and your husband have had to go through all of this.  I will keep you all in my thoughts and prayers.  Thank you for your post.
Brenda

[ppearl214]

16,

Nothing to edit... nothing to delete.... I'm sorry to hear life hasn't been all that kind over time... but now that you are here, venting amongst those that understand.... well... yeah.... TGIF huggles.  Hang in there and please tell your son that regardless of what is going on, we're cheering him on as well.  He sounds like a truly courageous soul

Phyl

[Captain Deb]

Ditto to what Phyll and Brendalu said. This is a support forum for patients and family members alike. Thanks for sharing your story--posting it makes it lose some of it's negative power. Thanks also for thinking of me. (I got a letter from my attorney--he's written a rather forceful letter to the judge in my case asking her to s**t or get off the dang pot! It's only been 11 months since my hearing!)

We're here for ya!

Capt Deb

[OMG16]

Thank you every one you are all so kind.  Your right I feel like a load has been lifted just writing some of my complaints.  Captain Deb please keep me informed I will be anxious to know how this turns out you can always Pm me anytime.  Phyl you are so right about how wonderful my son was and is.  He has always been a very happy boy from the minute he was born.  He has been a delight to raise and we have not had any problems with him at all.  He does not deserve this (not that anyone other than the Doctor he had would deserve this) and to find out at such a young age about how bad humans can be, well it just broke my heart.  Brenda I know this is not the correct post but can you PM me with the name of the manufactorer of the androgel none of his doctors or the pharmacist had heard of a gel the you can rub into his shoulders.  Everyone take care and Know that I think of you everyday and wish you the best that life has to offer.  16

[marg]

16 You and your family are in my prayers..  Yes, this is a great place to receive support and care from others who understand.  When the stress of life and unexpected situations get overwhelming..;.. I know that my AN family is here for me... as I am here for them.
   
     We may never met in person -but I feel closer to many of you than the people I see and work with every day.  My boss (who has some hearing loss from ear infections and eardrums breaking in the past ) told me this week  'this is the way things are now and you need to move on' end of story.  I told her that I was only 7 months from surgery and I was still running into new situations that I had to deal with in a new way because of being SSD.  She just doesn't get it.  She must think that some partial hearing loss is equal to : SSD, balance issues  and partial facial paralysis that I deal with (off and on) all at the same time on a  a daily basis ! .   Just because all the health issues I deal with are not visible ... gee - I guess they can't be that tough to deal with.  Sometimes I wish I could touch  these people and they would have these health issues to deal with for a week (especially the bosses) then they would have more understanding of what a struggle it is on a daily basis to continue to do the job you had before surgery  !
    Ahhhh, I feel better venting.... thanks all
Marg
   
     

[pattibobatti]

16,

I hope you can have a nice evening with your son and husband tonight.  I think it has to be harder to have a child go through all of this rather than yourself.  My heart goes out to you.  It iis wonderful to have a caring extended family and I am sure they have been able to lessen your burden. 

Have a wonderful evening.

From one high school sweetheart to another,
Patti

[OMG16]

Marg I do not know how it is personally but while watching my son I can only imagine.  My heart goes out to all of you who suffer with indifferent people who think they know.  We did experience this aspect also.  Everyone in the family who had strokes thought they knew what it was like and how my son should react.  Little did they know that he should have died with the amount of brain damage.  All of them had relationships already developed and had already been through school and had their careers and were able to retire.  Getting through school and trying to establish new relationship is a challenge for any teenager and this just makes it even harder. 

Patti thank you we had a wonderful night.  My son told us last night he wants to become more independant and asked us to help him.  I was so proud.

Off topic here but does anyone know anything about independant living classes and also about SSI vocational rehab.  Or maybe you can point me in the right direction as far as where to post this requests.   16

[Larry]

16,

A terrible plight your son has had to endure. Its also very tough on those around him like yourself. My thoughts go to you and your family.

Laz

[marg]

16  It is so true that we all 'think we understand' if we have something similar...and I try to remember that most people are trying to help.  Having a adult (or almost adult) child live with you and not have a 'normal life'  must be so hard. 

     My widowed sister has a son (a former marine from the first Gulf War) who has been living with her for over 10 years because he is very sick from what happened to him over there and he can't work.  My heart goes out to you, your son  and your family.... for these complications from his surgery  continue to affect all of you on a daily basis.
Marg

[OMG16]

Thank you Larry and Marg.  It can be very difficult on days when he is confused and doesn't understand why someone was able to take advantage of him.  He doesn't always see people for who they are and he trusts everyone.  I hate to be the one that always has to point that out to him.

For the most part most days are great and there are no problems just daily living stuff.  We are almost 3 years post op and have worked through most of our negative feelings.  The hardest part for all of us is we can not give specifics about our situation so not even our primary care Dr knows exactly what happened.  It is so unbelievable that if I didn't see it in black and white I would never have believed it happened.  These sort of things don't happen in the US and if they do they end up on dateline.  The only way I can help others is to direct them on how to research their choice of Dr's and to not put to much faith on patient and Dr's testimonials.  The state Medical Boards do not have the power that most think they have.  Complication rates are hard to obtain if the Dr's have used more than one name and have been  under the hospitals name and/or treatment center names.  I have found that if the Dr's are not interested in doing a type of procedure than there is a good reason for it.  Allot of patients believe it is due to money and that the Dr's aren't interested in learning different ways and that is not the case (in our case anyways).  Sometimes the reasons patients haven't heard anything but raving testimonials is that others that have an experience that is different are not able to say anything including other Dr's.  Have you ever wondered this sounds to good to be true.  These types of Dr's are praying on the most vulnerable of patients.  I have worked for Dr's for 21 years and even they were convinced this was our best option.  We all trusted what we were told and unfortunately it had a horrific outcome for a child and there is nothing we can do about that.  We have to accept what our lives are now and move on.  I believe we have done this in a gracious way and this is whats best for all of us.  I want all of you to know that I am grateful for all of your kind words they mean the world to me.  We as a Family are not depressed, bitter or angry.  We would just like to make a difference in the way that we research our providers and what type of information is available to future patients and then they can make a educated opinion on their own with all information.  Please do not be afraid of what I have said please just be informed consumers.  Take the time and make sure you have made the right decision.  Checking on providers in the usual manner is not good enough go the extra mile and turn over every stone.  I have posted some of the resources available on my other posts.  If you need help I can direct you to the appropriate place to obtain this information.  Have a wonderful year filled with joy. 

Marg I believe your sister has very difficult situation to deal with.  We are fortunate that with a younger child he does not completely understand what he has lost.  He has a great attitude and a smile almost everyday.  This makes our jobs much easier and we may have felt differently if he was angry and depressed.  If your sister needs anything have her contact me and I can at least be a sounding board.

Does anyone know of any teens on this site that have had surgery and my son can talk to via email.  The only ones I have found are bitter, angry and this is not where he is.  He just needs a friend who he can relate to and that is positive and moving on with their life.  He has problems with school due to his cognitive problems and someone with these problems could be helpful also.  16

[marg]

16 thank you for the offer of my sister contacting you... I will be sure to pass on your availability to 'talk' with her.
marg

[Kaybo]

16~
How horrible and unjust for all of you!!  I will be praying for you and for your son in seeking the best options to help w/ his independence.  I wish I knew something to help you in that area.  I hate to ask this - & you may not be able to say - but who is it that has told you that you can't talk about this?  Is it lawyers that are trying to help?  I get the feeling it is the Dr. that did this and I certainly don't understand that...
K

[OMG16]

K thank you for your kind words.  I'm sorry I can not be more specific.  I will answer any questions that you have that I can so always feel free to ask.  16

[Kaybo]

I totally understand that that was a "touchy" question.  I think that I am just going to have my own opinion of what is going on and I am going to pray that you& yours will be able to overcome this situation in a way that is properous beyond even your wildest dreams!!

[OMG16]

We have already had the most wonderful outcome you could ever imagine.  Our family is closer than we have ever imagined possible and we have the sweetest son who has taught us so much throughout this whole process.  He has the heart and soul of an angel.  I'm proud to say that he just 3 hours ago put his own hoodie on and zipped it himself.  We are so proud of him!!  We are just so blessed and thankful everyday that this has been the outcome of a horrific event in our lives.  Thank you again for your kind words they mean so much.  You don't need to worry about us we are better than ever.  I just needed to vent on that day and then have moved on and it has helped to be able to let some of that out.  I only have fleeting moments of sadness, pain and anger and it does not happen often and only lasts briefly but it is part of the healing process and everyone here on the forum are wonderful people and are there to celebrate the good times and help you through the bad times.  So please feel free to contact me anytime and we will get through whatever heartaches or celebrations life has in store for us.  16