Ive been through pure hell since the birth of my daughter a year ago.
I had an epidural that turned into a spinal and ive had a spinal leak. I now have a herniation of my tonsillar and HORRIBLE headaches with neck pain. It never goes away unless with strong pain medicine and caffeine or something that raises my blood [pressure .Something is seriously wrong and since it was from an epidural I cant get anyone to help me!
It was at a monster hospital and theyre offering to do a myelogram but im afraid to let them touch my spine again. Im just in so much pain idk what to do. I suffer in pain everyday its so difficult with two young children.
I have bad headaches neck pain brain fog. extreme fatigue hyper thyroid adrenal insufficiency.
Im trying to get into the mayo clinic but just getting my medical records out is difficult. no one believes me my family thinks im over dramatic. its so difficult.
idk whats wrong with me but they think I still have a spinal fluid leak and want to do a myelogram, but that requires another lumbar puncture.
my question is should I have the myelogram im afraid it will make it worse but its the only option theyre giving me. is there a good dr. in pa area I can go to to help me as I think im a liability so upmc is bad
I'm very sorry to hear of all the suffering you have been through.
Having a spinal leak untreated can lead to permanent damage (sagging brain), so you need to have that evaluated.
How has your AI been? Any Crises? If that is OK, go ahead with the myelo, but make sure you talk to your Endo. MD about your AI and if you need to stress dose prior and after it. Do you have Primary AI or SAI? Have you ever stress dosed before? I am familiar with it, but you need to have your Endo. MD write guidelines out for you and preferably have them given to you and faxed to where you are having the myelo. Also, the people doing the myelo. need do know about your AI and what do do if you go into a Crisis.
The myelo. may make the headache worse initially, but you need to remember to lay down and drink plenty of water. Your family or someone will need to help you, esp. with the kids. It's unfortunate that your family is not more supportive, but unless they suffer from a disease that can be debilitating and change your life, many do not understand. Remember, we are here to help support you and I do understand.
As for getting your records, write on the form to get your records that you need them for "Continuity of Care" and the name of the person who needs them. By HIPAA law, they cannot refuse.
thankyou! does anyone know if there is another way to find a spinal fluid leak. I heard there is a mri myelogram or something that the university of Miami does and now at Cedars. I have been looking into other options.
Do you know if I cine mri would show a csf leak?
me AI was diagnosed she just said I had adrenal insufficiency and put me on 20 mg of cortef in the morning and 10 mg at night. I also have hyperthyroid. they think because the leak caused this. so frustrating that I have two disorders in addition to the leak because of a stupid spinal/epidural for having a baby.
There are other methods being used now only at some facilities that involve endoscopic (less invasive) through the nose procedure for evaluation and repair. Yale, in CT does it as well as others...research it online. Having an LP may cause another leak, so this is something to avoid.
I'm sure you have already been told things like not to strain, bend over, etc. as this may worsen things.
If you do have any procedure done, you need to find out from your Endo MD (or get a new one) how he/she wants you to stress dose since this will be stress on your body and you want to avoid going into an AI Crisis.
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