Since my last post, thankfully I have gotten into the Mayo Clinic. I had surgery on June 26th. Unfortunately they found 3 more leaks and will need another surgery. Also bringing in a neurosurgeon to figure out why I have so much pressure building up. With them talking about cutting the top of my skull and pealing back my scalp and 100% chance of losing my smell it gets scary. Then I saw this at the Mayo:
“We treat the untreatable
Fix the unfixable
Cure the uncurable”
Something about that made me feel better. I know I’m at the best hospital with the best doctors! Still scary, but I wouldn’t want to be anywhere else.
i dont know if im posting correctly but i was recently told i have a csf leak based on fluid collection in my cervical and thoratic spine location of leak is unknown right now but the mri al shows i have superficial siderosis which i read a csf can cause has an anyone had the same and does it go away if the csf leak is successfully treated
i dont know if im posting correctly but i was recently told i have a csf leak based on fluid collection in my cervical and thoratic spine location of leak is unknown right now but the mri al shows i have superficial siderosis which i read a csf can cause has an anyone had the same and does it go away if the csf leak is successfully treated
@noellew Hello and welcome to Connect. I don't have experience with your symptoms, but I wanted to share this Mayo story with you about a patient with Superficial Siderosis.
@noellew Hello and welcome to Connect. I don't have experience with your symptoms, but I wanted to share this Mayo story with you about a patient with Superficial Siderosis.
ty for sharing the story i will read it here soon
it was only recently discovered on the 16th of january it the mri says areas of it ,so no treatment has been talked about other than for the csf leak
and today my regular dr tells . e its not a disease or anything to worry about , so . now i dont know what to think
ty for sharing the story i will read it here soon
it was only recently discovered on the 16th of january it the mri says areas of it ,so no treatment has been talked about other than for the csf leak
and today my regular dr tells . e its not a disease or anything to worry about , so . now i dont know what to think
I have had 6 blood patches and none showed a leak. Only 1 in 100,000 have it. Where do you live and who is doing it? Interventional radiologists did mine.
I sent all imaging and info to get an appointment to the CSF leak Center on 2/4/24 and was placed on wait list. My symptoms are getting worse and worse . When I first called I was told late spring early summer. When I called a second time I was told late fall early winter. I have an MRI that shows that I have a leak. I understand there is a wait list but wondering why the dates keep changing. I have been accepted at another major leak center but Mayo is my first choice. Is there anything that I can do to obtain an appointment sooner as my symptoms are getting much worse.
I sent all imaging and info to get an appointment to the CSF leak Center on 2/4/24 and was placed on wait list. My symptoms are getting worse and worse . When I first called I was told late spring early summer. When I called a second time I was told late fall early winter. I have an MRI that shows that I have a leak. I understand there is a wait list but wondering why the dates keep changing. I have been accepted at another major leak center but Mayo is my first choice. Is there anything that I can do to obtain an appointment sooner as my symptoms are getting much worse.
@deltiemh, I'm sorry to hear that you are getting mixed messages on appointment availability. That is frustrating. Over the last few years, there has been an unusually high demand for appointments in many departments at Mayo Clinic. Most departments schedule out three months in advance. Availability within that 12-week window varies based on the number of patients requesting appointments for specific areas or providers.
Are you seeking an appointment at the Cerebrospinal Fluid Dynamics Clinic at Mayo Clinic in Florida? Have you contacted them directly? Phone: 904-953-0856
@deltiemh, I'm sorry to hear that you are getting mixed messages on appointment availability. That is frustrating. Over the last few years, there has been an unusually high demand for appointments in many departments at Mayo Clinic. Most departments schedule out three months in advance. Availability within that 12-week window varies based on the number of patients requesting appointments for specific areas or providers.
Are you seeking an appointment at the Cerebrospinal Fluid Dynamics Clinic at Mayo Clinic in Florida? Have you contacted them directly? Phone: 904-953-0856
Yes, I did and they told me they have such high demand it would be better to wait for an opening in Rochester since it has been over 3 months since I have been on the waiting list at Rochester site. They said they are no longer putting people on the waiting list for now.
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Since my last post, thankfully I have gotten into the Mayo Clinic. I had surgery on June 26th. Unfortunately they found 3 more leaks and will need another surgery. Also bringing in a neurosurgeon to figure out why I have so much pressure building up. With them talking about cutting the top of my skull and pealing back my scalp and 100% chance of losing my smell it gets scary. Then I saw this at the Mayo:
“We treat the untreatable
Fix the unfixable
Cure the uncurable”
Something about that made me feel better. I know I’m at the best hospital with the best doctors! Still scary, but I wouldn’t want to be anywhere else.
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1 Reactioni dont know if im posting correctly but i was recently told i have a csf leak based on fluid collection in my cervical and thoratic spine location of leak is unknown right now but the mri al shows i have superficial siderosis which i read a csf can cause has an anyone had the same and does it go away if the csf leak is successfully treated
@noellew Hello and welcome to Connect. I don't have experience with your symptoms, but I wanted to share this Mayo story with you about a patient with Superficial Siderosis.
https://newsnetwork.mayoclinic.org/discussion/fixing-a-tiny-leak-makes-a-big-difference-for-steve-grinstead/Are you consulting a surgeon about treatment?
Jennifer
ty for sharing the story i will read it here soon
it was only recently discovered on the 16th of january it the mri says areas of it ,so no treatment has been talked about other than for the csf leak
and today my regular dr tells . e its not a disease or anything to worry about , so . now i dont know what to think
@noellew Are you seeing a spine specialist about the CSF leak? That would probably be an opinion that matters.
Jennifer
no i saw a neurologist a blood patch is being tried the 5th , hopeful it will help
I have had 6 blood patches and none showed a leak. Only 1 in 100,000 have it. Where do you live and who is doing it? Interventional radiologists did mine.
I sent all imaging and info to get an appointment to the CSF leak Center on 2/4/24 and was placed on wait list. My symptoms are getting worse and worse . When I first called I was told late spring early summer. When I called a second time I was told late fall early winter. I have an MRI that shows that I have a leak. I understand there is a wait list but wondering why the dates keep changing. I have been accepted at another major leak center but Mayo is my first choice. Is there anything that I can do to obtain an appointment sooner as my symptoms are getting much worse.
@deltiemh, I'm sorry to hear that you are getting mixed messages on appointment availability. That is frustrating. Over the last few years, there has been an unusually high demand for appointments in many departments at Mayo Clinic. Most departments schedule out three months in advance. Availability within that 12-week window varies based on the number of patients requesting appointments for specific areas or providers.
Are you seeking an appointment at the Cerebrospinal Fluid Dynamics Clinic at Mayo Clinic in Florida? Have you contacted them directly? Phone: 904-953-0856
Yes, I did and they told me they have such high demand it would be better to wait for an opening in Rochester since it has been over 3 months since I have been on the waiting list at Rochester site. They said they are no longer putting people on the waiting list for now.