I have been having chronic headaches and symptoms for 7 months now. Doctor says i have brain sag and things i have a CSF leak. have had numerous MRIs, a spinal tap, a myelogram and tomorrow a cisternogram. I have had to be off work for weeks now not able to be upright for more than an hour at a time and only once a day if that long. I’m beginning to think i will never be back to functioning. wondering if anyone has dealt with something similar or even not similar at all and just how you deal with chronic situations where you lose hope. TIA
I have been having chronic headaches and symptoms for 7 months now. Doctor says i have brain sag and things i have a CSF leak. have had numerous MRIs, a spinal tap, a myelogram and tomorrow a cisternogram. I have had to be off work for weeks now not able to be upright for more than an hour at a time and only once a day if that long. I’m beginning to think i will never be back to functioning. wondering if anyone has dealt with something similar or even not similar at all and just how you deal with chronic situations where you lose hope. TIA
Hello @cmweston and welcome to Mayo Connect. Dealing with these types of symptoms for seven months must be very difficult. I can understand your concern. We have some discussions on Connect, which you might find helpful. Here are the links to those discussions:
My neurologist who does not treat this suggested a CSF leak is causing my excessive nasal drainage, irritated cough, and feeling like the base of my brain is being squashed by my skull where it becomes my spinal column, as well as intermittent dizziness and faintness. A CT with contrast and MRI without contrast have showed nothing. He says I need an MRI with contrast to start. Is the gadolinium safe? I am 72 and have read bad things about it affecting the brain and being retained. Also the other test option mentioned is the myelogram and having to be turned upside down on a table for the dye to distribute through the spinal canal. That will make me pass out for sure. Lying down is the only thing that helps the pressure. Somedays not too bad and others unbearable. A neurosurgeon that did a C5-6 spinal fusion last year brushed me off when I had new problems. I remember him saying post op that I had a small CSF leak but he thought it would be no problem and would heal up. He says there is nothing else he can fix. I read a test of my drainage can show if I have a leak because of tau protein in it. But what if it is in my neck or further down my spine where I have herniated discs in my lumbar region? How do they test everything?
My neurologist who does not treat this suggested a CSF leak is causing my excessive nasal drainage, irritated cough, and feeling like the base of my brain is being squashed by my skull where it becomes my spinal column, as well as intermittent dizziness and faintness. A CT with contrast and MRI without contrast have showed nothing. He says I need an MRI with contrast to start. Is the gadolinium safe? I am 72 and have read bad things about it affecting the brain and being retained. Also the other test option mentioned is the myelogram and having to be turned upside down on a table for the dye to distribute through the spinal canal. That will make me pass out for sure. Lying down is the only thing that helps the pressure. Somedays not too bad and others unbearable. A neurosurgeon that did a C5-6 spinal fusion last year brushed me off when I had new problems. I remember him saying post op that I had a small CSF leak but he thought it would be no problem and would heal up. He says there is nothing else he can fix. I read a test of my drainage can show if I have a leak because of tau protein in it. But what if it is in my neck or further down my spine where I have herniated discs in my lumbar region? How do they test everything?
I did this so you may more easily connect with other members such as @kygirl58 and @jenniferhunter who may be able to offer you some additional experience of theirs.
How long ago was your surgery when the CF leak was mentioned? Do you feel you may be interested in a second opinion on what can be done?
My neurologist who does not treat this suggested a CSF leak is causing my excessive nasal drainage, irritated cough, and feeling like the base of my brain is being squashed by my skull where it becomes my spinal column, as well as intermittent dizziness and faintness. A CT with contrast and MRI without contrast have showed nothing. He says I need an MRI with contrast to start. Is the gadolinium safe? I am 72 and have read bad things about it affecting the brain and being retained. Also the other test option mentioned is the myelogram and having to be turned upside down on a table for the dye to distribute through the spinal canal. That will make me pass out for sure. Lying down is the only thing that helps the pressure. Somedays not too bad and others unbearable. A neurosurgeon that did a C5-6 spinal fusion last year brushed me off when I had new problems. I remember him saying post op that I had a small CSF leak but he thought it would be no problem and would heal up. He says there is nothing else he can fix. I read a test of my drainage can show if I have a leak because of tau protein in it. But what if it is in my neck or further down my spine where I have herniated discs in my lumbar region? How do they test everything?
@summerstar I am a spine surgery patient, and I have had MRI's with gadolinium. The people who tend to have problems from gadolinium are patients with kidneys that don't function well. You can search the internet and find complaints about gadolinium.
It gave me a headache. I also drank a lot of water afterward to try to flush it out and took antihistamines in case of allergy. I believe that gadolinium will always linger in your body after it is injected. It is a metal that is supposed to be safe. I really don't know, and I question that too. I have had a doctor test me for metals, and it did show the presence of a significant amount of gadolinium in my body years later, so now I always question why it is necessary to use contrast dyes in imaging. It may not be absolutely necessary. Upon asking the question, I have had doctors tell me that they wouldn't allow it in their bodies, and long term, maybe no one knows if it is really safe. There have been some reports of kidney damage which makes sense because the kidneys are filtering out everything from the blood.
Do you have a physical therapist you can ask about this? There can be other reasons for pain at the base of the skull and neck. That happens to me intermittently when my vertebrae spontaneously rotate because of neck muscle spasms. I have thoracic outlet syndrome which causes one side of my neck to be to tight creating an imbalance. It has also caused vertigo and loss of balance before I had cervical fusion surgery and had a collapsed disc in my neck that was causing spinal cord compression. TOS, (thoracic outlet syndrome) can also cause breathing issues, dizziness and fainting in some people.
You may not have a spinal fluid leak, the neurologist is taking a guess and suggesting tests to confirm of deny it, and it is your choice to do the test or not. You can always seek a second opinion elsewhere. You could try physical therapy to see if it will help. My PT also does myofascial release which releases the tight tissue and fascial tightness allowing my body to move better and releasing the pressure.
MFR is Myofascial Release Therapy. There is a discussion on MFR that you might find helpful.
I have had a spinal CSF leak for almost 11 months. A blood patch was unsuccessful and the wait time very long for any further treatment. I’m totally disabled and very discouraged about eventual recovery. I went from running half marathons and a very active life to complete inactivity. The toll on mental health has been very hard.
Diagnosed with CSF leak (cerebral spinal fluid leak)
I was diagnosed with CSF leak by an ENT in Tucson. I am trying desperately to get into the Mayo. I would much rather get the proper procedures done here! Has anyone else here been diagnosed with CSF?
Diagnosed with CSF leak (cerebral spinal fluid leak)
I was diagnosed with CSF leak by an ENT in Tucson. I am trying desperately to get into the Mayo. I would much rather get the proper procedures done here! Has anyone else here been diagnosed with CSF?
My neurologist who does not treat this suggested a CSF leak is causing my excessive nasal drainage, irritated cough, and feeling like the base of my brain is being squashed by my skull where it becomes my spinal column, as well as intermittent dizziness and faintness. A CT with contrast and MRI without contrast have showed nothing. He says I need an MRI with contrast to start. Is the gadolinium safe? I am 72 and have read bad things about it affecting the brain and being retained. Also the other test option mentioned is the myelogram and having to be turned upside down on a table for the dye to distribute through the spinal canal. That will make me pass out for sure. Lying down is the only thing that helps the pressure. Somedays not too bad and others unbearable. A neurosurgeon that did a C5-6 spinal fusion last year brushed me off when I had new problems. I remember him saying post op that I had a small CSF leak but he thought it would be no problem and would heal up. He says there is nothing else he can fix. I read a test of my drainage can show if I have a leak because of tau protein in it. But what if it is in my neck or further down my spine where I have herniated discs in my lumbar region? How do they test everything?
I have been through so many tests and had so many doctor visits since I posted this. I have been ghosted and gaslighted by everyone except the pain clinic doctor who has tried steroid injections and an occipital nerve block. It temporarily got rid of the aching at the base of my skull, but nothing gets rid of the intense pressure, the surges up into the back of my brain that leave me senseless for a few seconds, or the pain shooting behind the back of my right ear, my temple, and eye from the back of my head in the scalp. When I cough it is torture as it stabs me in the eye and temple. Several doctors have refused to order a tau protein test of my runny nose or to prescribe prednisone for vasculitis which I have had before. They don't want to be bothered, they only want quick answers or they shove me away. Today my pain doctor is doing a facet joint nerve block. This whole thing is killer on my emotions. I still haven't gotten the gadolinium MRI because my pain doctor said he wouldn't put that in his body and he is still trying to isolate the area that might be causing pain, but we are running out of options and CSF leak is looking more likely. Not only that but Medicare won't let him do anything new for six weeks between procedures. So this has dragged on forever.
@summerstar I am a spine surgery patient, and I have had MRI's with gadolinium. The people who tend to have problems from gadolinium are patients with kidneys that don't function well. You can search the internet and find complaints about gadolinium.
It gave me a headache. I also drank a lot of water afterward to try to flush it out and took antihistamines in case of allergy. I believe that gadolinium will always linger in your body after it is injected. It is a metal that is supposed to be safe. I really don't know, and I question that too. I have had a doctor test me for metals, and it did show the presence of a significant amount of gadolinium in my body years later, so now I always question why it is necessary to use contrast dyes in imaging. It may not be absolutely necessary. Upon asking the question, I have had doctors tell me that they wouldn't allow it in their bodies, and long term, maybe no one knows if it is really safe. There have been some reports of kidney damage which makes sense because the kidneys are filtering out everything from the blood.
Do you have a physical therapist you can ask about this? There can be other reasons for pain at the base of the skull and neck. That happens to me intermittently when my vertebrae spontaneously rotate because of neck muscle spasms. I have thoracic outlet syndrome which causes one side of my neck to be to tight creating an imbalance. It has also caused vertigo and loss of balance before I had cervical fusion surgery and had a collapsed disc in my neck that was causing spinal cord compression. TOS, (thoracic outlet syndrome) can also cause breathing issues, dizziness and fainting in some people.
You may not have a spinal fluid leak, the neurologist is taking a guess and suggesting tests to confirm of deny it, and it is your choice to do the test or not. You can always seek a second opinion elsewhere. You could try physical therapy to see if it will help. My PT also does myofascial release which releases the tight tissue and fascial tightness allowing my body to move better and releasing the pressure.
MFR is Myofascial Release Therapy. There is a discussion on MFR that you might find helpful.
Thank you for sharing your experience. I appreciate it. I have had arthritis really bad in most of my neck and the top sticks sometimes when I try to move my head and I get a whoosh into my brain when it cracks loose. It is that and the pressure at the base of my skull that is the unusual part of all this. I can get rid of the aching with Tylenol, NSAIDS, or the cortisone injections, but not the pressure and not the sharp pain when I push on my scalp. temple, or the pain behind my eye, or the stabbing pain in my eye when I cough. Also even when I got my nerve block, all around the edge of the numbed area, I was very sore, like it referred outward until it wore off a week later.
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I have been having chronic headaches and symptoms for 7 months now. Doctor says i have brain sag and things i have a CSF leak. have had numerous MRIs, a spinal tap, a myelogram and tomorrow a cisternogram. I have had to be off work for weeks now not able to be upright for more than an hour at a time and only once a day if that long. I’m beginning to think i will never be back to functioning. wondering if anyone has dealt with something similar or even not similar at all and just how you deal with chronic situations where you lose hope. TIA
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2 ReactionsHello @cmweston and welcome to Mayo Connect. Dealing with these types of symptoms for seven months must be very difficult. I can understand your concern. We have some discussions on Connect, which you might find helpful. Here are the links to those discussions:
--Spine CSF Leaks
https://connect.mayoclinic.org/discussion/spinal-csf-leaks/
--Have You Had a Cisternogram?
https://connect.mayoclinic.org/discussion/cisternogram/
@cmweston You mention chronic headaches. Have you had other symptoms as well?
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2 ReactionsMy neurologist who does not treat this suggested a CSF leak is causing my excessive nasal drainage, irritated cough, and feeling like the base of my brain is being squashed by my skull where it becomes my spinal column, as well as intermittent dizziness and faintness. A CT with contrast and MRI without contrast have showed nothing. He says I need an MRI with contrast to start. Is the gadolinium safe? I am 72 and have read bad things about it affecting the brain and being retained. Also the other test option mentioned is the myelogram and having to be turned upside down on a table for the dye to distribute through the spinal canal. That will make me pass out for sure. Lying down is the only thing that helps the pressure. Somedays not too bad and others unbearable. A neurosurgeon that did a C5-6 spinal fusion last year brushed me off when I had new problems. I remember him saying post op that I had a small CSF leak but he thought it would be no problem and would heal up. He says there is nothing else he can fix. I read a test of my drainage can show if I have a leak because of tau protein in it. But what if it is in my neck or further down my spine where I have herniated discs in my lumbar region? How do they test everything?
Hello @summerstar. You will notice that I have moved your post into an existing discussion on the topic of spinal CF leaks, which you can find here:
- Spinal CSF leaks: https://connect.mayoclinic.org/discussion/spinal-csf-leaks/
I did this so you may more easily connect with other members such as @kygirl58 and @jenniferhunter who may be able to offer you some additional experience of theirs.
How long ago was your surgery when the CF leak was mentioned? Do you feel you may be interested in a second opinion on what can be done?
-
Like -
Helpful -
Hug
1 Reaction@summerstar I am a spine surgery patient, and I have had MRI's with gadolinium. The people who tend to have problems from gadolinium are patients with kidneys that don't function well. You can search the internet and find complaints about gadolinium.
It gave me a headache. I also drank a lot of water afterward to try to flush it out and took antihistamines in case of allergy. I believe that gadolinium will always linger in your body after it is injected. It is a metal that is supposed to be safe. I really don't know, and I question that too. I have had a doctor test me for metals, and it did show the presence of a significant amount of gadolinium in my body years later, so now I always question why it is necessary to use contrast dyes in imaging. It may not be absolutely necessary. Upon asking the question, I have had doctors tell me that they wouldn't allow it in their bodies, and long term, maybe no one knows if it is really safe. There have been some reports of kidney damage which makes sense because the kidneys are filtering out everything from the blood.
Do you have a physical therapist you can ask about this? There can be other reasons for pain at the base of the skull and neck. That happens to me intermittently when my vertebrae spontaneously rotate because of neck muscle spasms. I have thoracic outlet syndrome which causes one side of my neck to be to tight creating an imbalance. It has also caused vertigo and loss of balance before I had cervical fusion surgery and had a collapsed disc in my neck that was causing spinal cord compression. TOS, (thoracic outlet syndrome) can also cause breathing issues, dizziness and fainting in some people.
https://mskneurology.com/how-truly-treat-thoracic-outlet-syndrome/You may not have a spinal fluid leak, the neurologist is taking a guess and suggesting tests to confirm of deny it, and it is your choice to do the test or not. You can always seek a second opinion elsewhere. You could try physical therapy to see if it will help. My PT also does myofascial release which releases the tight tissue and fascial tightness allowing my body to move better and releasing the pressure.
MFR is Myofascial Release Therapy. There is a discussion on MFR that you might find helpful.
Myofascial Release Therapy (MFR) for treating compression and pain: https://connect.mayoclinic.org/discussion/myofascial-release-therapy-mfr-for-treating-compression-and-pain/
I agree is is good to be cautious and understand everything completely before you decide. Have you had physical therapy since your spine surgery?
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1 ReactionI have had a spinal CSF leak for almost 11 months. A blood patch was unsuccessful and the wait time very long for any further treatment. I’m totally disabled and very discouraged about eventual recovery. I went from running half marathons and a very active life to complete inactivity. The toll on mental health has been very hard.
-
Like -
Helpful -
Hug
2 ReactionsDiagnosed with CSF leak (cerebral spinal fluid leak)
I was diagnosed with CSF leak by an ENT in Tucson. I am trying desperately to get into the Mayo. I would much rather get the proper procedures done here! Has anyone else here been diagnosed with CSF?
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Helpful -
Hug
1 ReactionWelcome @cody708. I moved your question about cerebral spinal fluid (CSF) leak to this existing discussion:
- Spinal CSF leaks https://connect.mayoclinic.org/discussion/spinal-csf-leaks/
I did this so you can read previous posts and connect with other members like @jenniferhunter @wcf @kygirl58 @janblue @summerstar @cmweston and others.
If you would like to request an appointment at Mayo Clinic, here is all the information to get started http://mayocl.in/1mtmR63
What options are being suggested by your ENT?
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2 ReactionsI have been through so many tests and had so many doctor visits since I posted this. I have been ghosted and gaslighted by everyone except the pain clinic doctor who has tried steroid injections and an occipital nerve block. It temporarily got rid of the aching at the base of my skull, but nothing gets rid of the intense pressure, the surges up into the back of my brain that leave me senseless for a few seconds, or the pain shooting behind the back of my right ear, my temple, and eye from the back of my head in the scalp. When I cough it is torture as it stabs me in the eye and temple. Several doctors have refused to order a tau protein test of my runny nose or to prescribe prednisone for vasculitis which I have had before. They don't want to be bothered, they only want quick answers or they shove me away. Today my pain doctor is doing a facet joint nerve block. This whole thing is killer on my emotions. I still haven't gotten the gadolinium MRI because my pain doctor said he wouldn't put that in his body and he is still trying to isolate the area that might be causing pain, but we are running out of options and CSF leak is looking more likely. Not only that but Medicare won't let him do anything new for six weeks between procedures. So this has dragged on forever.
-
Like -
Helpful -
Hug
3 ReactionsThank you for sharing your experience. I appreciate it. I have had arthritis really bad in most of my neck and the top sticks sometimes when I try to move my head and I get a whoosh into my brain when it cracks loose. It is that and the pressure at the base of my skull that is the unusual part of all this. I can get rid of the aching with Tylenol, NSAIDS, or the cortisone injections, but not the pressure and not the sharp pain when I push on my scalp. temple, or the pain behind my eye, or the stabbing pain in my eye when I cough. Also even when I got my nerve block, all around the edge of the numbed area, I was very sore, like it referred outward until it wore off a week later.
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Helpful -
Hug
2 Reactions