Spontaneous CSF leak

[oneandonly88]

I was diagnosed with Spontaneous CSF leak nearly  two and a half years ago after being told I was suffering  from migraine. After suffering tremendous violent headaches, vomiting, eyes and ears being effected alongside stiffness in my neck- paying privately  for a brain scan,it showed I had subdural bilateral effusions and compression to my brain stem.  After the diagnosis I was relieved hoping this could be fixed. Unfortunately I have had four blood patches
( lumbar level) and these did not work. The last blood patch was directly into the sight  ( nearly 2yrs later) to be thoracic T6-T7 but chest side ( I also now have slight tethering to my spinal canal?).  The blood due to scaring was unable to reach the leak. Next option would be to have CSF lumbar drainage  for 10 days laying flat in the hope that the CSF fistula would heal, also unsuccessful. I have now been told that there is nothing they can do as to enter my chest side would cause risk of paralysis. Is this true and how high would the risks be? I continue to lay down and manage my headaches etc the best I can. I feel like I am caught in a viscious circle and feel like I am being left to get on with it. Have you ever treated anyone with this condition in this area with sucess or otherwise? This pattern has also changed as laying down now can also cause me to suffer headaches and wake up by them during the night or before I even open my eyes in the morning, I am aware of my head. I am also suffering with backache above and below my leak and pains occassionally inbetween my chest. These can be very intense if awoken by my head and I try to turn over then they eventually ease.Is the backache connected and chest as I never had this before but I feel   Im being told otherwise? What treatment would you recommend and are your patients able to work with this condition?
If you could help in any way I would be most grateful.
Kind Regards

[Neuro Forum]

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

[oneandonly88]

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?