Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.
Without the ability to examine you and obtain a history, I can not recommend specific treatment for you. However I will try to provide you with some useful information.
There are many different causes of spinal CSF leak, including trauma,following surgery, following lumbar puncture, during epidural anesthesia, and spontaneous. Spontaneous leaks could be caused by leakage of CSF from around the nerve root sleeve (the place where nerves normally exit the spine), or small tear that grows as a result of intrathoracic pressure (frequent coughing or sneezing), with fistula formation.
In cases such as yours, confirming exactly where the leakage is occurring is essential. It sounds like yours is thought to be in the thoracic level, but if this has not been confirmed, appropriate imaging with CT myelography, or cisternography. Sometimes when epidural blood patch is not successful, extradural blood patches may work.
Bedrest, hydration with intake of a lot of fluids, and analgesic medication are necessary adjuvant treatments.
In cases of thoracic CSF leak, if there is some sort of traction on the nerves in the thoracic region, it is conceivable that your chest pain may be due to radiation from the thoracic region, so-called thoracic radiculopathy type pain.
If you have been told your leak is somewhere anterior, then an anterior surgical approach may be too dangerous, I can not really comment on the surgical risks as I am not a surgeon, but I assume the hope would be that your tear would seal on its own with due time. Further consultation with a headache specialist (a neurologist specialized in headache neurology), and/or a pain specialist and possibly a neurosurgical spine surgeon at a tertiary care center is recommended if you this is possible).
Thank you for this opportunity to answer your questions, I hope you find the information I have provided useful, good luck
Thank you for your reply.
Yes my spontaneous csf leak is in the anterior thoracic cord region. ( T6-7 I believe)
How risky is it to operate in this area. Have you known it to be carried out before with or without positiv e outcomes? What are the risks of paralysis if any?
Whom and where would you recommend me to go and see. Im in the UK.
I have had 4 different blood patches.3 at lumbar level ( different times of course) and one directly into the sight.None have been successful. The 10 day prolonged strict bedrest with csf drainage supine was hoped to take the pressure off the csf fistula, divert csf to normal pathways and hopefully have a fairly good chance of closing up the fistula connection. This was also unsuccessful. Any ideas?