first time posting need to vent

Forum for parents of injured who are seeking information from other parents or people living with the injury. All welcome
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CandyJ
Posts: 6
Joined: Wed Oct 15, 2008 5:23 pm
Location: Mansfield, Ohio
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first time posting need to vent

Post by CandyJ »

Sorry if this sounds wierd to anyone. I was involved in a rear end accident where a kid hit me at a stop sign. At the time of the accident I didn't think anything of it had some minor shoulder pain from what I thought was just from the way my arm was when this kid hit me. 2 weeks after the MVA I was crumpled up in pain to the point of my hubby taking me to the ER. I was told at the time I was bruised. After about a month went to see my GP who then sent me for testing EMG, xrays, mri the whole ball. Well the EMG doc told me right off the bat that I had a TBPI and that is why I had the numbness and loss of strength in my left arm and that I needed to see a NS so off to another doc after my GP referred me. This NS looks at my tests and tells me I needed to have my c5-c6-c7 fused that they were extremely out of whack (my medical term, lol), so I have surgery on Jan 09,09. After 6 hrs of surgery doc comes out and tell hubby that while in surgery they found a splinter off my c7 intruding on my spinal cord and that most likely the nerve damage was permanent if after I awoke I still had the numbness in my left arm and hand. Well I woke up and what do you know left hand was still useless. So now I am on muscles relaxers because the muscles in my neck spasm now. I have to wear a splint on my left hand to keep my fingers from curling up on me and locking in that position. I am just curious if anyone else is like me or am I alone. I read all these posts where eveyone is talking about complete paralysis or amputation and I can still move my shoulder just not lift things or hold things. I am a wife and mother so I do housework but have to use my eyes much more so I don't burn or cut myself. I have never met anyone with my injury. I live in a town with not much in the way of specialists or support groups. I would gladly welcome any advice or opinions. i just want to know if his is the way I am going to be for the rest of my life like the doc said that these feelings are pretty normal for just starting out with this. So sorry I rambled just have had alot on my mind about this lately.
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swhite1
Posts: 295
Joined: Mon Oct 16, 2006 4:15 pm
Injury Description, Date, extent, surgical intervention etc: Bad fall in June of 2006
LTBPI
Location: right here in Texas

Re: first time posting need to vent

Post by swhite1 »

Candy- no way does this sound weird. Actually every line I read pissed me off more and more. Not at you mind, but this plight which has befallen you is worse than the plauge. At least you died from that.
I guarantee the only good news you will receive here is that you have struck upon a goldmine of knowledge, support and best wishes. I can not begin to tell you how upsetting it is to me to read that you actually had back surgery and only after which you were correctly diagnosed. I hope I'm wrong on every point but I don't think so.
Other than of course this ubpn.org is a Godsend.
I hope after what you have already gone through that you have a speedy recovery. I believe it has happened before.
Take care, have patience and bear with us as we will you. Here, you are in good company.
My best Candy,
Scott
Kath
Posts: 3242
Joined: Mon Nov 18, 2002 4:11 pm
Injury Description, Date, extent, surgical intervention etc: I am ROBPI, global injury, Horner's Syndrome. No surgery but PT started at 2 weeks old under the direction of New York Hospital. I wore a brace 24/7 for the first 11 months of my life. I've never let my injury be used as an excuse not to do something. I've approach all things, in life, as a challenge. I approach anything new wondering if I can do it. I tried so many things I might never have tried, if I were not obpi. Being OBPI has made me strong, creative, more determined and persistent. I believe that being obpi has given me a very strong sense of humor and compassion for others.
Location: New York

Re: first time posting need to vent

Post by Kath »

Candy
Vent all you want! It helps to vent where people understand and will give you good advice and much needed support.
I don't share your injury exactly because I was injured at birth by a doctor who pulled me out by my head. But I am bpi and full understand the frustrations you are facing now that you have this injury. I wish I could give you some answers about your possible recovery rate. '
I can't imagine how much trauma this has caused you and your family but I am glad that you are here and there are people here to help you through this time and help you adjust.

I'm also a mother and a grandmother I managed to have three children and still help with grandchildren... You will be able to do it... but don't push your self and please give your self some time to heal. You need to be patient with yourself most of all. Frustration is the constant companion of all bpi injured because our brains want to do what our body refuses to do. Cut your self some slack and don't try to be superwoman. You'll make it and get stronger as time goes by.
Kath robpi/adult

Kathleen Mallozzi
CandyJ
Posts: 6
Joined: Wed Oct 15, 2008 5:23 pm
Location: Mansfield, Ohio
Contact:

Re: first time posting need to vent

Post by CandyJ »

Thank you for all the advice so far. I know this is gonna be with me for the rest of my life, just right now I am trying to make my house more friendly to me so I don't have to depend on my hubby so much. That whole process is also frustrating me because where I live we don't have alot of places that offer specialty stuff for people with disabilities. I am also frustrated because I am seeing a change in the way my left arm and hand look compared to my right and that makes it a constant reminder. I am trying to live each day tot he fullest just some days are alot worse than others and to be honest this week has really sucked. I am not normally like this but right now I hurt more than ever and no matter what I do my left arm just doesn't want to do anything. I woke up this morning and it just hung there and of course I got upset so the cycle continues. If anyone has any suggestions on how to make my house easier for me so that way I can cook and clean and do the quote unquote normal stuff PLEASE let me know. I am new to this and want to make it so it is no big deal at home especially for my boys.
Carolyn J
Posts: 3424
Joined: Tue Apr 06, 2004 1:22 pm
Injury Description, Date, extent, surgical intervention etc: LOBPI. I am 77 yrs old and never had a name for my injuries until 2004 when I found UBPN at age 66.

My injuries are: LOBPI on upper body and Cerebrael Palsy on the lower left extremities. The only intervention I've had is a tendon transplant from my left leg to my left foot to enable flexing t age 24 in 1962. Before that, my foot would freeze without notice on the side when wearing heels AND I always did wear them at work "to fit in" I also stuttered until around age 18-19...just outgrew it...no therapy for it. Also suffered from very very low self esteem; severe Depression and Anxiety attacks started at menopause. I stuffed emotions and over-compensated in every thing I did to "fit in" and be "invisible". My injuries were Never addressed or talked about until age 66. I am a late bloomer!!!!!

I welcome any and all questions about "My Journey".
There is NO SUCH THING AS A DUMB QUESTION.
Sharing helps to Heal. HUGS do too.
Location: Tacoma WA
Contact:

Re: first time posting need to vent

Post by Carolyn J »

AMEN!! Everything Kath says is sooo true, Candy.
I am glad you found our UBPN FAmily of support and understanding. Venting is good.
Carolyn J
LOBPI/71 and proud of it.
Carolyn J
Adult LOBPI
Master DIVER TOM
Posts: 759
Joined: Tue May 05, 2009 11:51 am

Re: first time posting need to vent

Post by Master DIVER TOM »

Hi-Candy WELCOME :D I have left erbs at birth injury from the 50s I dove semis with simple lift enough to holed onto a 18 wheeler for years ;) Maybe this might help you :?: You say you do house work , I cook , clean,etc one handed for over 50 yrs. with erbs. Check to see if the theorist can give you a referral to be retrained to do your house work? its like vocational retraining. If this is possible ware you live :?: If not try to find things to retry things you used to do 2 handed ;) GO SLOW, try something small task if you can , but not long . Get a rubber ball to squeeze , try to cushion your arm with a pillows it helps the gravity on your shoulder. This is what I did over the years and I did like to abuse my erbs BIG Time to drive a semi for years. My erbs turned purple unloading my semi driving the semis around Chicago in blizzards . I think one arm it works and many times it does not. My arm never fell off :D I had worries about this to! Then I tried to find things that I could enjoyed, it was also a great way to stretch your limitation ;) Maybe this helps :roll: If I say something hear it is because of my experience not what I think. Your Doctor left you with out a referral to a specialist in your area :!: Get one, you could try here to by setting your town here. :D

Best wishes and trys Stay Strong :D ;)

Tom
CandyJ
Posts: 6
Joined: Wed Oct 15, 2008 5:23 pm
Location: Mansfield, Ohio
Contact:

Re: first time posting need to vent

Post by CandyJ »

thank you all. I really do like hearing from everyone it makes me feel less alone.
Leah 83
Posts: 20
Joined: Tue Mar 31, 2009 4:24 pm

Re: first time posting need to vent

Post by Leah 83 »

Dear Candy,
I'm so sorry that this happened to you. I know how you feel. I wish I didn't have to rely so much on my husband as well. At first I was like you, I just wanted to be normal. But now as my two year anniversary of this injury is closing in, I am resolved to say that I now have a new normal. I too am worried about things not being normal for my 3, and 4 year old children. The best advice I ever recieved was ''even though you can't use your left arm/hand, pretend like you can'' yes I thought that this OT was bananas, but now I see that it was a way to trick my brain. My arm/ hand will never be the same, or look the same for that matter. The hardest part for me was dealing with the effects to my face from Horner's syndrome that occurs when you have avulsed nerve roots. As far as the house work goes, well I used to be a clean control freak my oh my how that has changed. The only way I do it is one day at a time and be careful not to do to much because of over use your uninjured makes it more suseptable to injury. There are things to help one handed people out there you have to search, and keep your eyes peeled at all times. Even things that aren't marketed as one handed. Dycem is awesome stuff, but expensive. I have found grippers in a pack of four at 99 cent only. I would really like to call or email you because I have so much more I would like to share with you. Please stay strong, you are an amazing person. Remember everyday that passes that you are still here is a victory. lejabot83@yahoo.com cell 623-337-2439
God Bless!
Sincerly,
Leah
Lenni
Posts: 478
Joined: Sun Feb 17, 2002 12:55 am

Re: first time posting need to vent

Post by Lenni »

Candy, god bless you and I wish you a speedy and miraculous recovery. My daughter has ROBPI like Kathy was mentioning but still struggles with everyday issues ( backpacks for school as an example ). I wish this damn injury was gone for all of you.

Lenni
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