Orthostatic headaches

[paradice15]

I was diagnosed with a CSF leak, resulting from a puncture of the dura during a cervical epidural 14 months ago. Since then I have undergone numerous procedures to alleviate the constant daily pressure headaches, and have been unable to return to my job due to an inability to sit up any length of time, and difficulty with concentration, comprehension and retention.

I have undergone numerous blood patches, trigger point and nerve blocks, been on 22 different medications for the pain, including multiple opiates which I cannot tolerate, and have had limited relief. A recent trial of Prolotherapy injections actually accelerated the head and neck pain. I was glad to finally understand, from this site’s previous entries, the causal relationship between my neck spasms and the occipital nerve pain I also get during each headache, which was very helpful.

I am currently taking Cymbalta, Percocet/ Fioricet, which provide very temporary relief. I have tried Acetazolamide, Topamax and Neurontin, which decrease the production of spinal fluid, but I was unable to tolerate them due to gastric upset. I also take meds for the frequent nausea and dizziness, where formerly I was reluctant to take an aspirin.

My pain management specialist/neurologist has referred me to the Mayo Clinic for a definitive diagnosis and treatment, since all his efforts have been unsuccessful. He recently supplied me with a copy of Dr. Mokri's study on “Orthostatic Headaches with Suspected CSF Leaks”, which is his latest diagnosis for my condition. I would like to know if anyone has this diagnosis, or has any information on how to treat this condition without opiates. Dr. Mokri’s clinical study did not include any treatment recommendations, and on a one year follow-up, only 1 patient had a spontaneous recovery.

I would be grateful to anyone who can shed some light on this situation.

[bstone]

You need to find out if you are a confirmed leaker. The best method of a CT Myelogram with contrast. Dr Morki would do this as well as folks like Dr Gray at Duke.

Dr Gray's info:
http://www.dukehealth.org/physicians/linda_g_leithe

Also, folks like Dr David Adams at the Univ of Miami Dept of Neurology are experienced in treating CSF leak
http://neurology.med.miami.edu/x11.xml?id=P2334

What imaging studies have you had?

[LauraL840]

Since your diagnosis of a CSF leak was attributed to a dural puncture, you may want to avoid invasive imaging studies which may (or may not) contribute to your symptoms. There are some imaging studies that can be done without a dural puncture to inject contrast which may show abnormalities/leaking.

When you say you had a 'recent trial of Prolotherapy injections', what did that consist of?

There are tons of links to articles regarding diagnosing, conservative treatments, imaging types, blood patching, etc. If you're up for reading them, you may find the 'education' is helpful when discussing how to pursue this with your doctor.

[Robbysmom5]

Hi - My son had orthostatic headache from CSF Leak due to an inadvertant tear during a lumbar epidural injection. From what I read, blood patching cervical leaks is trickier than lower spinal leaks. Have you followed up with a neurosurgeon? Have you had an MRI w/ contrast of your head and cervical region since? There is a software option for MRIs called myelographic sequencing. This can sometimes show a leak and does not require LP. (I realize your leak is most likely at the epidural site - imaging it may give more insite to treatment options)

[paradice15]

After my third blood patch, I had an MRI in November '08, which showed evidence of a leak at C7-T1, the level of the 9/08 epidural. An MRV in January '09 showed a cerebral venous thrombosis, possibly a result of the CSF leak, and I was placed on Coumadin for 4 months, until that was stabilized. A follow-up MRV in April '09 did not show evidence of a leak. In October '09 I underwent a Special MRI (high resolution) at Columbia Hospital, and am still awaiting the results of that test. My neuro is reluctant to do a LP, which I agree is not a good route at this point. However, from the comments above it appears there are other options to determine if this is, in fact, a continued leak.

I will definitely review these with my neuro and anesthesiologist - thank you for the suggestions.

As for the Prolotherapy -- it consisted of multiple injections (10 and 16) to the occipital area, causing an inflammation in the ligaments and tendons in order to strengthen them. It served no purpose, but was tried unsuccessfully in an effort to alleviate my neck pain.

Thanks again for your responses, and recommendations on finding additional information. I am very grateful!

[Robbysmom5]

Columbia / New York Presp. hospital in NYC? If so, I will PM you as we also use this hospital now.