I saw a doctor yesterday, and the first think he said was:
I don’t knoww how you haven’t jumped off a cliff yet.
Told me to read a book on pain.
Said I was too far gone to do anything.
Have you had a lumbar puncture since your surgery?
I don’t know if you have EDS in which case you should be more hesitant, but you need evidence to put pressure on the doctors to provide you the treatment you need.
Or you could advocate for a diagnostic blood patch which could improve your function enough to make the trip back to Dr Hepworth or other center for definitive treatment.
I also am dealing with what I’m sure is a spinal CSF leak but maybe not as severe as what you’re going through.
In my case I’m staying with family and have accepted that I won’t be doing anything the next few months while I take care of this.
It may be worth seeking out a patient advocate since you absolutely need a lot of help with a problem like this.
It absolutely sounds like you have a CSF leak to me. Just keep reminding yourself that these are treatable! There are a lot of reports of people bedbound as sick as a person can be who make full recoveries once the leak is found and fixed.
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I had a blood patch and DSM/Ct meylogram in 2022. I got much worse after those and finally got on disability.
I have sent my records to Dr. Callen and he is trying to find it.
Dr. Hepworth’s office called me yesterday and said they tjink this isn’t good. The believe that I also have nutcracker syndrome as well as the ES and the surgery made my situation worse. They think I am goingninto high pressure and blowing a hole and then into low pressure and it seals and then into high pressure and it blows again over and over. They also think I have developed MCAS.
They have no idea what to do. I can’t even stand, so can’t get anywhere. I am 14 hours away from them in Denver. My family is totally done.
Has the steriord helped. He gave me some as well, just started today.
Tried it before though.
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Steroids have always helped me post op from an ES surgery. I don’t know if it will help if your problem is a CSF leak or Nutcracker Syndrome, but it could. It’s a powerful anti inflammatory. If nothing else it could help reduce some of your MCAS symptoms if you do have that. Any reduction in symptoms could be helpful.
Re: your CSF patch in 2022 - since that was done while you still had bilateral IJV compression, it possibly didn’t help because the high pressure from the compression caused the patch to fail.
What Dr. Hepworth told you yesterday makes a lot of sense. I really hope Dr. Callen can find something that will provide direction for help for you. I’m praying for that!
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This lecture on EDS; its comorbidities, and pain managment might be helpful. It helped me connect a lot of my problems.
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Praying for you @harrisonboy , I hope that Dr Called might be able to help you, & so sorry that the doctor you’ve just seen wouldn’t do anything…try to keep fighting if you can 
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I love all of you, and praying in belief for relief.
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