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CSF Clinic

Posted by deedles7088 @deedles7088, Sep 9 10:43pm

How long roughly does it typically take to get an appt in the Mayo CSF Clinic in MN. I have been tossed around to a few drs here at home. I have been told I have a CSF leak and I've been told I don't have a leak (Lumbar Puncture showed 7cm of opening pressure) and CT Myelogram was consistent with leaks in the C Spine and the L Spine. I saw a neurosurgeon today who said that my symptoms are not consistent with a CSF Leak. I get neck and head pressure when going from sitting to standing (I have it everyday with some days are uncomfortable yet tolerable and other days to lay down flat because the pressure is so intense and I feel like I could pass out), ringing in ears, Vision issues, off balance, etc.) He said that I would have these symptoms if I went from laying down to sitting up, which I don't. It is always from sitting to standing. The neurosurgeon today said that I have a tethered spinal cord (Lumbar area) and he wants to do surgery as he feels this may help my symptoms.

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dlydailyhope | @dlydailyhope | Sep 10 7:22am

@deedles7088
Did you have surgery on your spine that would have caused CSF leaks? If not surgery, what would cause this? Do your MRIs show what levels there is a leak and pressure in your spinal canal?

Have you been to an ear, nose and throat doctor to check you for dizziness/balance/pressure/ringing in ears (rule out Menieres)?

You may also want to check your blood pressure changes from sitting to standing (orthostatic hypotension).

I have had surgery on my cervical and lumbar spine due to compression in spinal cord/nerve roots/nerves. Your surgeon must show you and explain exactly where he/she believes there is compression. Lumbar spine does not necessarily cause pressure in cervical spine. I just had surgery L3-L5 on 8/2/2024 and the stenosis/neurogenic claudication affected lower back/hips/buttocks/legs/feet, not upper body. Cervical stenosis can affect things below the level of compression.
https://www.mayoclinic.org/diseases-conditions/orthostatic-hypotension/symptoms-causes/syc-20352548

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1 reply
Mentor
Jennifer, Volunteer Mentor | @jenniferhunter | Sep 10 10:37am

@deedles7088 A question that your surgeon could answer is to explain how the spinal cord moves and shifts inside the fluid of the spinal canal as you change body, back or head/neck position. Imagine a garden hose and a rope inside that represents your spinal cord. Now bend the rope and make a curved loop with it. The rope must move inside because of the change in diameter of the curve. If your cord is tethered, it will cause pressure when you try to tug on it or bend it. Surely that must cause some symptoms to increase because nerves do not like to be stretched.

There is probably more complexity to your case than my simple explanation. The lumbar spine is not as flexible as the cervical spine because the neck can move in a lot of ways. Your surgeon should be able to explain how tethering affects the cord in different areas and why it produces symptoms as it pulls on the cord and nerve roots within the boney spaces (foramen) between the vertebrae. They may possibly be some stenosis around the nerve roots too.

REPLY
1 reply
deedles7088 | @deedles7088 | Sep 10 5:52pm
In reply to @dlydailyhope "@deedles7088 Did you have surgery on your spine that would have caused CSF leaks? If not..." + (show)
@dlydailyhope

@deedles7088
Did you have surgery on your spine that would have caused CSF leaks? If not surgery, what would cause this? Do your MRIs show what levels there is a leak and pressure in your spinal canal?

Have you been to an ear, nose and throat doctor to check you for dizziness/balance/pressure/ringing in ears (rule out Menieres)?

You may also want to check your blood pressure changes from sitting to standing (orthostatic hypotension).

I have had surgery on my cervical and lumbar spine due to compression in spinal cord/nerve roots/nerves. Your surgeon must show you and explain exactly where he/she believes there is compression. Lumbar spine does not necessarily cause pressure in cervical spine. I just had surgery L3-L5 on 8/2/2024 and the stenosis/neurogenic claudication affected lower back/hips/buttocks/legs/feet, not upper body. Cervical stenosis can affect things below the level of compression.
https://www.mayoclinic.org/diseases-conditions/orthostatic-hypotension/symptoms-causes/syc-20352548

Jump to this post

Thank you. My blood pressure does not changes hardly at all from sitting to standing . I have not had any surgery to cause my issues. I have not had an issues like I am experiencing until I went to a chiropractor a year ago and he adjust my neck and entire spine. All of my symptoms started roughly a couple weeks after that neck/spine adjustment.

REPLY
deedles7088 | @deedles7088 | Sep 10 5:57pm
In reply to @jenniferhunter "@deedles7088 A question that your surgeon could answer is to explain how the spinal cord moves..." + (show)
@jenniferhunter

@deedles7088 A question that your surgeon could answer is to explain how the spinal cord moves and shifts inside the fluid of the spinal canal as you change body, back or head/neck position. Imagine a garden hose and a rope inside that represents your spinal cord. Now bend the rope and make a curved loop with it. The rope must move inside because of the change in diameter of the curve. If your cord is tethered, it will cause pressure when you try to tug on it or bend it. Surely that must cause some symptoms to increase because nerves do not like to be stretched.

There is probably more complexity to your case than my simple explanation. The lumbar spine is not as flexible as the cervical spine because the neck can move in a lot of ways. Your surgeon should be able to explain how tethering affects the cord in different areas and why it produces symptoms as it pulls on the cord and nerve roots within the boney spaces (foramen) between the vertebrae. They may possibly be some stenosis around the nerve roots too.

Jump to this post

Thank you. That makes a little more sense to me. I just hate the thought of having a back surgery and it not fix the issues - which my main issue is the neck and head pressure every time I go from sitting to standing. Some days are a little better than others. When it's bad, it's pretty intense. I am trying to get in to the Mayo CSF Clinic. I guess because I have been told by a few drs here that "yes, you have a CSF leak" and other drs say "No, you don't have a leak". Thank you for your valuable input. I appreciate it.

REPLY
1 reply
ga29 | @ga29 | Sep 11 3:41pm
In reply to @deedles7088 "Thank you. That makes a little more sense to me. I just hate the thought of..." + (show)
@deedles7088

Thank you. That makes a little more sense to me. I just hate the thought of having a back surgery and it not fix the issues - which my main issue is the neck and head pressure every time I go from sitting to standing. Some days are a little better than others. When it's bad, it's pretty intense. I am trying to get in to the Mayo CSF Clinic. I guess because I have been told by a few drs here that "yes, you have a CSF leak" and other drs say "No, you don't have a leak". Thank you for your valuable input. I appreciate it.

Jump to this post

I hope you can get in to see a doctor at Mayo soon! I suggest your specialist send a request to Mayo for you. I tried calling myself and was turned down. My primary sent in a referral and I didn’t hear back at all. When my neurologist sent in a referral, they called me to send in my MRI results to look at and I was finally able to get an appointment. Wish you a quick response!

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1 reply
deedles7088 | @deedles7088 | Sep 11 8:48pm
In reply to @ga29 "I hope you can get in to see a doctor at Mayo soon! I suggest your..." + (show)
@ga29

I hope you can get in to see a doctor at Mayo soon! I suggest your specialist send a request to Mayo for you. I tried calling myself and was turned down. My primary sent in a referral and I didn’t hear back at all. When my neurologist sent in a referral, they called me to send in my MRI results to look at and I was finally able to get an appointment. Wish you a quick response!

Jump to this post

I'm hoping with them reviewing the results of my lumbar puncture, CT Myelogram and my records that they will agree to see me. Although I've never been seen at Mayo, I've read about their CSF Clinic and I trust them. If they review everything and feel that they can be of no help to me, I will proceed with back surgery with hopes that will resolve my issues.

REPLY
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