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Chronic headache, topamax, weight loss, IV drops, reglan, depakot, DHE, magnesium, LP, blood patch, undetectable CSF during spinal tap, mild ehlher-danlos, chiari malformation. Cure?

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My daughter is 12 years old. She's been suffering with a chronic daily headache f0r 5 months. She was on Topamax until she started losing weight. Has been in and out of the ER with IV drips of Reglan, Depakoat and DHE. She's also tried magnesium. After a week in the hospital (she entered the hospital at a 10, not knowing her name), was finally given an LP followed by a blood patch which cured the headache completely. This lasted 12 days and despite Alleve, Reglan and DHE nasal, she went back up to a 5. We assumed the blood patch failed. BTW, her CSF was undectable during the spinal tap, which is why they agreed to do the blood patch. Now are refusing to do a blood patch. She has mild chiari malformation 1. They refuse to say that it's a low pressure headache and instead want her to go to a psychiatrist. Questions: What are the ramification of not repairing the CSF leak with another patch, if this is the problem? I am willing to take her to a psychiatrist but I am concerned that it is a CSF leak and they are not taking care of it. 2. The anesthesiologist refuses to the do patch but gives no reason. Why would a doctor refuse to do patch when it worked before?
Posted Sun, 6 May 2012 in Brain and Spine
Answered by Dr. Rakhi Tayal 27 minutes later
Thanks for writing to us.
When the spinal tap was done, the blood patch was placed to repair the damage done to the epidural membranes so that the CSF does not leak out. This whole thing happened at least 12 days ago. In this duration, the small hole that might have been there would have healed perfectly by now.
Putting another blood patch means making a fresh hole in the epidural membrane and then sealing it again with a blood patch. This is a futile effort.
Blood patch is applied only immediately after the spinal puncture is done. There is no relevance in doing it after 10-12 days.
A pin prick like hole in the epidura is not like a hole in roof that has to be repaired again and again to prevent the leakage.
You please do not worry yourself about the leakage of CSF as this cannot happen after so many days.
I hope my answer and recommendations are adequate and helpful. Waiting for your further follow up queries if any.

Above answer was peer-reviewed by
Follow-up: Chronic headache, topamax, weight loss, IV drops, reglan, depakot, DHE, magnesium, LP, blood patch, undetectable CSF during spinal tap, mild ehlher-danlos, chiari malformation. Cure? 10 hours later
I understand your answer, however, so many people have patches done more than once. Johns Hopkins' migraine website even says that low pressure headaches often have to be treated with patches several times. I would like to klnow that she does not have a CSF leak, so please answer me this, since I can't find it anywhere. If a CSK leak is left untreated, what happens? What if by some small chance, the patch did not work (which is common according to the internet and with patients with blood patch. She had had a migraine for 4 months and with the patch it went away instantly. Second, how long does it take to replenish CSF fluid? If the patch did work, has the fluid been replenished? She's now going to be on amitriptaline (Elavil) and DHE as needed. The hole was not created by the LP to start. She had virtually no CSF when they tried to measure her fluid.
Answered by Dr. Rakhi Tayal 33 minutes later

Thanks for writing again.

If the CSF continues to leak as you are saying then the head will lose its cushioning effect which might result in extreme headaches followed by gradual cerebellar atrophy. The patient may become comatose.

If a blood patch is placed, the CSF gets replaced within a day or two with good hydration of the body depending on the amount of CSF that has leaked out.

You can try giving her plenty of fluids and see if her headache improves.

Wishing your daughter an early recovery.

Above answer was peer-reviewed by
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