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tchr012 07-16-2010 03:59 PM

hi im new, nervous and very overwhelmed
 
Hi, I just found this site today and I thought I would introduce myself. My name is Tara and I am 29 years old. I am an elementary education major and want to be a reading teacher someday. I am not new to chronic pain because I have been experiencing it since I was in my teens. It is frustrating because I have lost all my friends because they could not handle all my surgeries and being in the hospital. However, I did recently get married in May and he is definitely my main support and he is very good to me. He gets scared sometimes because now he knows more in depth about my health problems and he gets mad when the doctor won't listen to me.

I was injured in a car accident in spring 2008 and it resulted in horrible burning stabbing pain in my lower back and down my right leg. They did steroid shots, tried many meds, and physical therapy but nothing lasted and in August 08 I ended up with a permanent neurostimulator. I loved it because I could walk all over campus and do most of my normal activities again! It was so great that I did some speeches about it at school and I became a patient ambassador at my doctor's office, I even would talk to people in the waiting room who were thinking about getting one! But, last year in April my leads had moved and I ended up having trouble in both legs and my back.

My doctor did a revision and I was okay again and I loved it because I was not on pain meds either its so hard to do schoolwork while being on meds! BUt In September I had a really bad fall (I had lost feeling in my right leg all of a sudden) and ever since then my stim has been very different and not working right. My doctor sent me to the neurosurgeon who said I had RSD and made me get a sympathetic nerve block and it made things worse! And now the pain is a lot worse and so bad I have to use a wheel chair to get around campus! I went last week to see her for the follow up and talk to my stim guy and he thinks that my device is messed up again and they will have to fix it. Then he left the room and my doctor comes in and says that she is making me see a neurologist because she believes there might be a problem with my brain causing the numbness (which makes me fall) but then I told her that the stim guy just said it was a problem with my device and she would not even listen to me! She just basically said for me to see this neurologist and in the meantime I am supposed to suffer because my stim is not working or even charging properly!

I am also nervous about seeing yet another doctor, I already have to see so many and I always worry about them not believing me because I am so young. I am just so sad and depressed right now because I remember what it felt like when the stim was working and I was doing great and could walk normal and even exercise! I was not even on any pain meds except my neurontin then either but now its like we are back to the beginning again and it makes me very sad! They had to put me on a antidepressant because I was just crying everyday and did not even want to get out of bed. Its hard because I am dealing with other health problems too and they can be very overwhelming. I think it makes it worse when the doctor will not listen to you or take you seriously!

All I want is to be able to get through college and be a teacher so I can help kids ( I even lost my tutoring job because of all this) and then when we are done with college we want to adopt. I try to keep a good attitude through all this but its hard and I feel very overwhelmed right now! I talk to my therapist about it but that only helps so far. Anyway, I thought I would try to join this community so I can talk to other people that are like me. I am sorry this is so long but thanks for reading it!

Alffe 07-16-2010 04:26 PM

Quote:

Originally Posted by tchr012 (Post 676128)
Hi, I just found this site today and I thought I would introduce myself. My name is Tara and I am 29 years old. I am an elementary education major and want to be a reading teacher someday. I am not new to chronic pain because I have been experiencing it since I was in my teens. It is frustrating because I have lost all my friends because they could not handle all my surgeries and being in the hospital. However, I did recently get married in May and he is definitely my main support and he is very good to me. He gets scared sometimes because now he knows more in depth about my health problems and he gets mad when the doctor won't listen to me.

I was injured in a car accident in spring 2008 and it resulted in horrible burning stabbing pain in my lower back and down my right leg. They did steroid shots, tried many meds, and physical therapy but nothing lasted and in August 08 I ended up with a permanent neurostimulator. I loved it because I could walk all over campus and do most of my normal activities again! It was so great that I did some speeches about it at school and I became a patient ambassador at my doctor's office, I even would talk to people in the waiting room who were thinking about getting one! But, last year in April my leads had moved and I ended up having trouble in both legs and my back.

My doctor did a revision and I was okay again and I loved it because I was not on pain meds either its so hard to do schoolwork while being on meds! BUt In September I had a really bad fall (I had lost feeling in my right leg all of a sudden) and ever since then my stim has been very different and not working right. My doctor sent me to the neurosurgeon who said I had RSD and made me get a sympathetic nerve block and it made things worse! And now the pain is a lot worse and so bad I have to use a wheel chair to get around campus! I went last week to see her for the follow up and talk to my stim guy and he thinks that my device is messed up again and they will have to fix it. Then he left the room and my doctor comes in and says that she is making me see a neurologist because she believes there might be a problem with my brain causing the numbness (which makes me fall) but then I told her that the stim guy just said it was a problem with my device and she would not even listen to me! She just basically said for me to see this neurologist and in the meantime I am supposed to suffer because my stim is not working or even charging properly!

I am also nervous about seeing yet another doctor, I already have to see so many and I always worry about them not believing me because I am so young. I am just so sad and depressed right now because I remember what it felt like when the stim was working and I was doing great and could walk normal and even exercise! I was not even on any pain meds except my neurontin then either but now its like we are back to the beginning again and it makes me very sad! They had to put me on a antidepressant because I was just crying everyday and did not even want to get out of bed. Its hard because I am dealing with other health problems too and they can be very overwhelming. I think it makes it worse when the doctor will not listen to you or take you seriously!

All I want is to be able to get through college and be a teacher so I can help kids ( I even lost my tutoring job because of all this) and then when we are done with college we want to adopt. I try to keep a good attitude through all this but its hard and I feel very overwhelmed right now! I talk to my therapist about it but that only helps so far. Anyway, I thought I would try to join this community so I can talk to other people that are like me. I am sorry this is so long but thanks for reading it!

Hi Tara and welcome to NeuroTalk...boy have you come to the right place.

Here is the link for our PN forum...http://neurotalk.psychcentral.com/forum119.html

and here is another link http://neurotalk.psychcentral.com/forum21.html

You'll find great support on these forums. I'm glad you found us!

Alffe 07-16-2010 04:37 PM

Tara...here is another link..http://neurotalk.psychcentral.com/forum26.html

:grouphug:

Leesa 07-16-2010 05:02 PM

Hi Tara ~ I've had the stimulator, and due to unforeseen problems I had to have it removed.

If I were you, I would go to your stimulator "guy" and have him FIX IT. This is probably what you want to do anyway, right? i see NO reason for you to see a neurologist. I think it's ridiculous to think it's something in your brain! That is absurd. Your stimulator is messed up again from the fall, and undoubtedly the leads have moved. Simple as that.

Please trust your instincts, and do what you think you should. Your stimulator worked great once, and there is no reason for it not to work again. God bless, and let us know how you come out. Hugs, Lee

Friend2U 07-16-2010 08:53 PM

Welcome Tara!
 
http://dl4.glitter-graphics.net/pub/...hix95m99ef.gif

I am so sorry about all your pain you are having to endure while trying to go to college. I admire you for getting into education.

I was an elementary teacher for 25 years....and a reading specialist for the last 12. It is a great field to be in. I specialized in K-2 and loved it.

I wish I had an answer for you, but see you have been given some good links! Hope you stay around with us here at NT. I would love to get to know you better!
:hug:

Darlene 07-17-2010 01:24 AM

Great to have you with us, Tara!!
 

Hello and welcome to NeuroTalk. Happy to see you have come to be with us. Just let us know if we can be of any help. There are great number of fellow members here to assist as possible. My thoughts and prayers are with you.

Again welcome, looking forward to seeing you around.

Darlene :hug:

Alffe 07-17-2010 05:33 AM

http://neurotalk.psychcentral.com/thread114142.html

**************

NurseNancy 07-17-2010 11:38 AM

hi tara,

i'm sorry you've gone thru so much and you're in so much pain.
but, congratulations on your marriage.

i'm glad you found NT. there are a lot of folks here who can lend a supportive hand. count me a one of them.

Burntmarshmallow 07-17-2010 05:13 PM

Hi Tara I agree very very strongly with what Lessa has said.
I have a neuro stim also, I have had mine for 8 years. You shouldnt have to go to neuro doc again. I doubt very much there is something wrong with your brain and as far as I know all of us who have stim implant can NOT have an mri so how much can this new visit with a neuro really help..it can only help fatten the pocket book or wallet of the neuro and your doc that is trying to make you go. when there is an issue with the stim it is the reps duty and responsibility to fix. I would go to the stim rep guy ! go with your gut just like lessa has said. The leads have probably slipped and need adjusting that is it !! It is highly unlikely there is anything at all wrong with your brain . :hug:
btw I got my stim after bad accident where trailer truck hit me from behind while I was stopped in school x-ing zone behind other cars. we have some thing in common and I am glad to meet you and hope to get to know you better. Very sorry that your dealing with such pain tho :( I know you will find this place helpful. If I can help please let me know.
PEACE
BMW...Tina

EDIT TO ASK WHEN YOU FEEL DID YOU HIT YOUR HEAD AT ALL????????

tchr012 07-17-2010 06:41 PM

Thank you everyone for the replies!
 
I just now was able to log on again (very busy preparing my first teaching demo on Monday!) and I am so touched wow I, feel so glad that I came here! I really want to thank you all for replying and making me feel so welcome here! I am still trying to figure my way around the site but I definitely am glad I decided to join here! Thank you again for listening and being so supportive and encouraging! I agree with everyone that it is my stim not anything wrong with my brain! My husband called my stim guy back(last night) and he convinced him to meet with me to try to reprogram me again. Right now, I am having problems with my charger and my device being able to find each other long enough to let me even charge properly! I really do like my stim rep he is always really nice and helpful I think maybe its my doctor who is getting in the way. The doctor wants to see if this neurologist thinks I need to have my stim taken out (which I don't want because it is helping my left leg actually just not anything else.) Anyway, I have a lot of homework but I just wanted to thank everyone and let you all know that update. Hope you all have a great weekend and I promise to be back soon and let you know how things go!

sincerely,
tara


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