Have any of you had prolotherapy to regenerate ligaments etc in your head? I have an nonoperable avm in my brain and chronic headaches due to a leak. I have tried everything!! Dr is now wanting to do orolotherapy and of course insurance doesn’t cover this procedure: I am curious if anyone has had any experience. Thank you.
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Hey Tina,
I have not heard of prolotherapy before, but upon doing some more research, I have some questions for you. You state “…I have an nonoperable avm in my brain and chronic headaches…” Internally, the brain itself does not have any ligaments, nor does it have any pain receptors. The brain processes pain signals/messages, but cannot, in itself, ‘feel’ pain. So my question is was it explained to you how this therapy may assist? As a treatment for musculoskeletal pain prolotherapy has been shown to be beneficial but as a frontline treatment for acute pain, the evidence is less conclusive. Here’s an extract/summary of a review of prolotherapy A Systematic Review of Dextrose Prolotherapy for Chronic Musculoskeletal Pain - PMC (nih.gov)
It has been shown that musculoskeletal issues can and do affect headache issues. It was explained to me the muscular tension in our necks and shoulders can pull on the base of our skulls and this can cause severe headaches. I was trialled on injectable Botox and although I may have had a sexy, wrinkle free neck and shoulders the benefit for me headache wise was nil. Although prolotherapy may assist with musculoskeletal issues, the question is are the musculoskeletal issues a direct cause of the headaches. Because we both have a biological defect within the skull it can be very difficult to draw a direct line between cause and effect, despite some medicos drawing such a line and professing that only their diagnosis is correct.
By no means am I discrediting prolotherapy as a treatment option, in fact, if it has been suggested by a Dr it may well be worth trialling it, even if that is to eliminate it as a treatment option for you. You never know, it could just be the ‘Key’ you’ve been looking for. Also, in the past I have rejected some suggested treatments only for the medicos to hold this against me with labels such as ‘non compliant’ or ‘has not followed medical advice’, so now, if they suggest an option I trial them all. I still haven’t found my ‘key’ but that one I reject out-of-hand could well be that ‘key’ and I’m only disadvantaging myself by rejecting without a trial.
Merl from the Modsupport Team
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This is what I was thinking of - I did some reading myself after reading the post. And, it seems to assist in a ligament type pain - the head itself, aside from jaw does not have ligaments(that I know of, maybe neck also) - but, like you said - who knows(aside from the MD) if something of the sort may benefit your discomfort
An inop avm is something that not many things compare with. So, it sounds like if it’s within your ability it’s worth a try - unfortunately, insurance doesn’t see it the way a patient does 
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@TinaB2 hello have they tried ketamine infusions?
They first start off with inpatient treatment which is 5 days of constant iv .
I too have tried everything at Stanford Pain Dept at they finally tried Ketamine infusions.
It was the first time I felt no pain for three months.
Then after that they are supposed to follow up with monthly 3 day in a row outpatient ketamine infusions.
This is to reset your pain. But Stanford doesn’t have enough nurses to do it and now they have stopped their outpatient services.
But I do get a low dose script for the really bad days and I am searching for another clinic that does it.
There is a good book on Amazon https://smile.amazon.com/Ketamine-Infusions-Patients-Everything-Before/dp/B086CB14HP/ref=sr_1_2?crid=MSF8KWXYT4BL&keywords=ketamine&qid=1658169120&sprefix=Keta%2Caps%2C122&sr=8-2
There is also a good support group on Facebook.
I think you find clinics www.askp.org but I will double check and come back
Hugs Angela
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Thank you I will have to think more on this.
No one has ever mentioned those to me but I will ask the doctor. Thank you.
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