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4mikee 09-24-2011 06:05 PM

Problems with vestibular and PCS diagnosis- HELP
 
Hello, I'm new and came across this site today and it seemed to be going in a direction I need at this time. Also, I am happy to see the activity here, unlike many others. I need help from those who I am sure have been through much the same as I. My story is long but I will try to make it short.

Two years ago I fell from standing 8 ft on a ladder hitting the ground and lunging backward into a loaded metal wheelbarrow striking it just abouve my spinal column, it in turn went a couple of feet. Not until recently did I believe I was knocked unconscious for a short but undetermined time. I did not seek medical attention at the time but was dazed and confused for a period of time. Not until I "failed" vestibular rehab and the therapist told me I had neurological symptoms as well as vestibular symptoms did this become important. Doctors to this point dismissed it completely.

This began two years ago. After 5 months, I practically dropped, without warning with severe vertigo, vomitting, confusion. Over a few days the vertigo and walking problems stayed with me. I did go to the Doctor who treated me with meds and expected it to go away. Well, it didn't. This went on for a while and I was referred to an ENT (small town) who did testing eventually and found nystagmus. He tried a couple of meds and nothing helped. The ENT said it was over his head. Eventually I was sent to a neuro otologist and convinced to have dex shots which did not work. All he wanted to do was more and afterward I starting having serious balance issues as well as walking, more cognitive problems, tinnitus, etc. Up to that time (6 months) I had about 8 more severe episodes taking days to recover. In total probably about twelve episodes. My vision was becoming impaired, congniton was embarrassing and fatigue was horrible not to mentions nasuea and vomitting. I continue with this today. Now, I have added severe balance problems (use cane), pulsing in my ears, chronic fatigue, brain fog and cognition problems as well as some bad sensitivity to noise. I am very limited in computer use, televison and activities (go figure) and anything requiring dexterity and stability. I had a good job as a cost accountant and did very well as a woodturning artist and just for kicks, remodeling. So I went from 60 to 0 quickly.

Eventually I went to a specialist in Nashville who diagnosed me with SCD after (in his words) I failed a vemp test miserably as well as not being able to get a baseline on a posturography. Six months later I was undiagnosed. He sent me to VRT where the issue of head injury was brought up as well as vestibular and this was passed on to the the Doctor. Well, he dismissed this, undiagnosed my SCD after a CT of my temporal bone. In his words he told me he didn't know what was wrong or what to do. Go back home and let your primary take care of you and if I wanted I could come back in six months I could. Well, the primary just grunts when given information.

Now, I'm very desperate. I haven't been able to work in a year not to mention anything else.

Please excuse my long post but I know questions are coming (hope?) My only alternative is Mayo in Jacksonville where I have and appointment but now I am apprehensive about going there.

Thanks in advance,
Mike

MelodyL 09-24-2011 08:14 PM

Quote:

Originally Posted by 4mikee (Post 808878)
Hello, I'm new and came across this site today and it seemed to be going in a direction I need at this time. Also, I am happy to see the activity here, unlike many others. I need help from those who I am sure have been through much the same as I. My story is long but I will try to make it short.

Two years ago I fell from standing 8 ft on a ladder hitting the ground and lunging backward into a loaded metal wheelbarrow striking it just abouve my spinal column, it in turn went a couple of feet. Not until recently did I believe I was knocked unconscious for a short but undetermined time. I did not seek medical attention at the time but was dazed and confused for a period of time. Not until I "failed" vestibular rehab and the therapist told me I had neurological symptoms as well as vestibular symptoms did this become important. Doctors to this point dismissed it completely.

This began two years ago. After 5 months, I practically dropped, without warning with severe vertigo, vomitting, confusion. Over a few days the vertigo and walking problems stayed with me. I did go to the Doctor who treated me with meds and expected it to go away. Well, it didn't. This went on for a while and I was referred to an ENT (small town) who did testing eventually and found nystagmus. He tried a couple of meds and nothing helped. The ENT said it was over his head. Eventually I was sent to a neuro otologist and convinced to have dex shots which did not work. All he wanted to do was more and afterward I starting having serious balance issues as well as walking, more cognitive problems, tinnitus, etc. Up to that time (6 months) I had about 8 more severe episodes taking days to recover. In total probably about twelve episodes. My vision was becoming impaired, congniton was embarrassing and fatigue was horrible not to mentions nasuea and vomitting. I continue with this today. Now, I have added severe balance problems (use cane), pulsing in my ears, chronic fatigue, brain fog and cognition problems as well as some bad sensitivity to noise. I am very limited in computer use, televison and activities (go figure) and anything requiring dexterity and stability. I had a good job as a cost accountant and did very well as a woodturning artist and just for kicks, remodeling. So I went from 60 to 0 quickly.

Eventually I went to a specialist in Nashville who diagnosed me with SCD after (in his words) I failed a vemp test miserably as well as not being able to get a baseline on a posturography. Six months later I was undiagnosed. He sent me to VRT where the issue of head injury was brought up as well as vestibular and this was passed on to the the Doctor. Well, he dismissed this, undiagnosed my SCD after a CT of my temporal bone. In his words he told me he didn't know what was wrong or what to do. Go back home and let your primary take care of you and if I wanted I could come back in six months I could. Well, the primary just grunts when given information.

Now, I'm very desperate. I haven't been able to work in a year not to mention anything else.

Please excuse my long post but I know questions are coming (hope?) My only alternative is Mayo in Jacksonville where I have and appointment but now I am apprehensive about going there.

Thanks in advance,
Mike

HI there.

My name is Melody and I wanted to welcome you to Neurotalk.

My sister in law was diagnosed with nystagmus in April. She had gotten vertigo and they all thought it was from her inner ear. She went to the eye doctor and he called her husband over to the table and he said "Look at her eyes". They were rolling all around. She had NEVER had this happen before and she is in her 60's. She told me another family member has this also.

Her vertigo lasted 3 months and she is now fine. I can only with the same for you. It's scary, I can only imagine.

Sending warm thoughts your way.

Melody

4mikee 09-25-2011 09:11 AM

Quote:

Originally Posted by MelodyL (Post 808905)
HI there.

My name is Melody and I wanted to welcome you to Neurotalk.

My sister in law was diagnosed with nystagmus in April. She had gotten vertigo and they all thought it was from her inner ear. She went to the eye doctor and he called her husband over to the table and he said "Look at her eyes". They were rolling all around. She had NEVER had this happen before and she is in her 60's. She told me another family member has this also.

Her vertigo lasted 3 months and she is now fine. I can only with the same for you. It's scary, I can only imagine.

Sending warm thoughts your way.

Melody

Thanks Melody. I'm glad she got relief. I had high hopes of getting some good feedback, maybe it is a bit soon. Maybe i posted in the wrong area??? I don't believe Iam alone with my symptoms. The possibility of PCS has me curious.
Thanks, Mike

Darlene 09-26-2011 01:39 AM

Nice to meet you!!
 

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 and caring fellow members here to assist you. Looks like you have been traveling around in NT. Our shoulders are here for support in many ways. Check into the following forum, there members will be there to help you out with vertigo .

http://neurotalk.psychcentral.com/forum92.html

Again welcome, looking forward to seeing you around. My thoughts and prayers are with you.

Darlene :hug:

4mikee 09-27-2011 03:09 PM

Thanks for the welcome. I did check out the link and it's very good information. I was hoping for feedback from some more folks. Do you think moving the post to the link would help?
Thanks,
Mike

MelodyL 09-27-2011 04:00 PM

Quote:

Originally Posted by 4mikee (Post 809746)
Thanks for the welcome. I did check out the link and it's very good information. I was hoping for feedback from some more folks. Do you think moving the post to the link would help?
Thanks,
Mike

Yes, put your post on that link and people will respond.

All the best.

Hope you are feeling better.

Melody


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