Inspired Spinal Cord Injury Support Forum

donnajr
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Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 28, 2015 9:15:02 GMT -8 via Inspired Mobile

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Post by donnajr on Apr 28, 2015 9:15:02 GMT -8

Apr 27, 2015 16:00:18 GMT -8 DJ said:

Apr 27, 2015 5:30:42 GMT -8 donnajr said:

I went to deaconess Hospital.

Seems like a big hospital with a big hospital network. I have no idea why they didn't send you to rehab or educate you more about your injury. I think you should go back and consult with a/your neurosurgeon!

I'm going to see my primary care dr today and bring up this issue to him. Maybe he can refer me to a neurosurgeon dr here. Also will discuss my MRI results that I just done 2 weeks ago. I would really like to know more about my injury.

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Lαrα Global Moderator STAFF Posts: 7,350 Post Likes Received: 3,100 Date Joined: August 2013 Injury: CES Date Injured: March 2011 Member is: Offline Send PM	Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 28, 2015 9:21:06 GMT -8 Quote Select Post Deselect Post Link to Post Back to Top Post by Lαrα on Apr 28, 2015 9:21:06 GMT -8 donnajr,I think its very reasonable to ask that, be firm and don't take no for an answer! Let us know how you get on!
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donnajr
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Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 28, 2015 10:07:12 GMT -8 via Inspired Mobile

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Post by donnajr on Apr 28, 2015 10:07:12 GMT -8

I will let you guys know. One question, should I go to rehab or just have physical therapy? Just really want to figure out what muscle I can regain back or even just maintain what I have now. Just need other people's opinions

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Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 28, 2015 10:46:17 GMT -8

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Post by Lαrα on Apr 28, 2015 10:46:17 GMT -8

Apr 28, 2015 10:07:12 GMT -8 donnajr said:

I will let you guys know. One question, should I go to rehab or just have physical therapy? Just really want to figure out what muscle I can regain back or even just maintain what I have now. Just need other people's opinions

I think you would benefit from an assessment at a rehab centre where they are specialized and understand CES. They may then offer you PT there or in the community but I would start there first

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donnajr New Member Posts: 13 Post Likes Received: 6 Date Joined: April 2015 Member is: Offline Send PM	Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 28, 2015 14:47:01 GMT -8 via Inspired Mobile Quote Select Post Deselect Post Link to Post Back to Top Post by donnajr on Apr 28, 2015 14:47:01 GMT -8 I'm being referred to a back specialist.
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DJ
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Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 28, 2015 14:50:06 GMT -8

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Post by DJ on Apr 28, 2015 14:50:06 GMT -8

Apr 28, 2015 14:47:01 GMT -8 donnajr said:

I'm being referred to a back specialist.

Good! If I were you I'd go to rehab and get the most out of it because with regular physiotherapy, you're most likely going to have to pay out of pocket.

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Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 28, 2015 16:31:48 GMT -8 via Inspired Mobile

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Post by donnajr on Apr 28, 2015 16:31:48 GMT -8

What really blew my mind is that my primary Dr says it's fine and it's not my spinal cord injury that is causing me the problems. Then I asked him why can't I tiptoe, why am I losing muscles in my calf area, why is my feet numb, my feet is curled in, my butt area is numb, I'm having bladder accident all the time. Then he says it's the nerves in your back but you don't have a spinal cord injury. I asked him then what is it called? He could not answer. It's a little frustrating not knowing exactly is wrong with me, I ended up crying. I'm venting out a little bit here, sorry. I don't know who else to talk to that can understand what I'm going through, hopefully I'm in the right group here

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Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 29, 2015 1:22:43 GMT -8

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Post by Lαrα on Apr 29, 2015 1:22:43 GMT -8

Apr 28, 2015 16:31:48 GMT -8 donnajr said:

What really blew my mind is that my primary Dr says it's fine and it's not my spinal cord injury that is causing me the problems. Then I asked him why can't I tiptoe, why am I losing muscles in my calf area, why is my feet numb, my feet is curled in, my butt area is numb, I'm having bladder accident all the time. Then he says it's the nerves in your back but you don't have a spinal cord injury. I asked him then what is it called? He could not answer. It's a little frustrating not knowing exactly is wrong with me, I ended up crying. I'm venting out a little bit here, sorry. I don't know who else to talk to that can understand what I'm going through, hopefully I'm in the right group here

I hate to say but this doctor is talking out of his ass...The issues you are having are related to the nerves that are effected at Lumber spinal level....This is is issue of nerve damage and nerve damage that is consistent with compression at the disc level.

He seems to not want to utter the words ''Cauda Equina Syndrome''..Vent away, we are here to support you and support your in getting the right help too.
I am always happy to email anyone on your behalf if you feel you are getting nowhere with this.

You are entitled to know what your issues are and you are entitled to expert medical input and assessment. If you feel up to it, insist you have a referral to a spinal specialist unit.

Here is a factsheet that has been prepared here by the forum and you could download it for his benefit if it helps, take it with you for your doctor. Also if you have been misdiagnosed, you are within your rights to seek out a malpractice claim.

Spinal Cord Injury factsheet 6 CES.pdf (65.32 KB)

donnajr
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Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 29, 2015 12:06:37 GMT -8 via Inspired Mobile

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Post by donnajr on Apr 29, 2015 12:06:37 GMT -8

Apr 29, 2015 1:22:43 GMT -8 Lαrα said:

Apr 28, 2015 16:31:48 GMT -8 donnajr said:

What really blew my mind is that my primary Dr says it's fine and it's not my spinal cord injury that is causing me the problems. Then I asked him why can't I tiptoe, why am I losing muscles in my calf area, why is my feet numb, my feet is curled in, my butt area is numb, I'm having bladder accident all the time. Then he says it's the nerves in your back but you don't have a spinal cord injury. I asked him then what is it called? He could not answer. It's a little frustrating not knowing exactly is wrong with me, I ended up crying. I'm venting out a little bit here, sorry. I don't know who else to talk to that can understand what I'm going through, hopefully I'm in the right group here

I hate to say but this doctor is talking out of his ass...The issues you are having are related to the nerves that are effected at Lumber spinal level....This is is issue of nerve damage and nerve damage that is consistent with compression at the disc level.

He seems to not want to utter the words ''Cauda Equina Syndrome''..Vent away, we are here to support you and support your in getting the right help too.
I am always happy to email anyone on your behalf if you feel you are getting nowhere with this.

You are entitled to know what your issues are and you are entitled to expert medical input and assessment. If you feel up to it, insist you have a referral to a spinal specialist unit.

Here is a factsheet that has been prepared here by the forum and you could download it for his benefit if it helps, take it with you for your doctor. Also if you have been misdiagnosed, you are within your rights to seek out a malpractice claim.

Curious here, does Cauda Equina Syndrome gets worse if not treated? I always wondered if I'm going to get worse, I mean my spasms have gotten worse to where I have barely any sleep. I wish my body would just be quiet so I can have some decent sleep. The dr gives me baclofen 15mg 3 times a day, and tramadol 50 mg 2 times a day, just started on Vasicare 10 mg a day. The only thing I noticed is vasicare do help with my bladder spasms a little bit. Just trying to get some ideas about what is out there to help me. So far I feel like you guys do understand where I'm coming from, thanks,

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Do You Suffer from Spasms with Cauda Equina Syndrome? Apr 29, 2015 12:40:46 GMT -8

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Post by Lαrα on Apr 29, 2015 12:40:46 GMT -8

donnajr,If de-compression surgery does not happen within 48 hours, then Cauda Equina Syndrome is in danger of becoming 'complete'. Once this occurs, a full recovery of the nerves is unlikely to happen therefor, the symptoms typically associated with Cauda Equina will become permanent.

At this point, the degree of dysfunction and issues related to CES will depend on other factors such as which side and angle of the spinal cord the compression occurred, which nerves were compressed first and then how healing occurs for the individual.

After surgery I cant see that anything else can get worse as such unless there is compression still occurring. There should be at least some improvements.

Other than that, associated issues related to CES can worsen.

numbbum
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Do You Suffer from Spasms with Cauda Equina Syndrome? Jul 28, 2020 21:09:45 GMT -8 via Inspired Mobile

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Post by numbbum on Jul 28, 2020 21:09:45 GMT -8

So hi everyone, I am 3 months in after a rollover accident that damaged l2-l5 I've got 4 fused vertebrae and rods and srews .I have ces and everyone is saying I will get better I cant pee without caths and pooping is a challenge. I'm very blessed I can walk and my back pain is minimal I just got engaged after meeting my girl 4 months ago I can have you know and achieve you know its just weird feeling and my bladder spasms after I cath I peed 2 times on my own about a month ago now nothing.my question 🤔 is since no one has given me any information will this get better or is this my new life? Or like I believe nobody has any answers which is fine my life is actually great and im positive just want to have answers so any advice or assistance would be greatly appreciated thank you.

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bensan
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Do You Suffer from Spasms with Cauda Equina Syndrome? Jul 29, 2020 6:26:04 GMT -8

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Post by bensan on Jul 29, 2020 6:26:04 GMT -8

It's been 12 years since my surgery and I still get those strong pains. Each time it's a different place or a different leg. It drives me crazy. Neurontin works to some extent so I take them every day and extra when necessary

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Do You Suffer from Spasms with Cauda Equina Syndrome?

Post by donnajr on Apr 28, 2015 9:15:02 GMT -8

Post by Lαrα on Apr 28, 2015 9:21:06 GMT -8

Post by donnajr on Apr 28, 2015 10:07:12 GMT -8

Post by Lαrα on Apr 28, 2015 10:46:17 GMT -8

Post by donnajr on Apr 28, 2015 14:47:01 GMT -8

Post by DJ on Apr 28, 2015 14:50:06 GMT -8

Post by donnajr on Apr 28, 2015 16:31:48 GMT -8

Post by Lαrα on Apr 29, 2015 1:22:43 GMT -8

Post by donnajr on Apr 29, 2015 12:06:37 GMT -8

Post by Lαrα on Apr 29, 2015 12:40:46 GMT -8

Post by numbbum on Jul 28, 2020 21:09:45 GMT -8

Post by bensan on Jul 29, 2020 6:26:04 GMT -8

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