I have scars from the AVM removal. Do you think this is why I have incredible burning pain?
Joel,
I know nothing about this, other than reading a book on neurology (“The Man Who Mistook His Wife For A Hat”, which is an excellent collection of stories of neurological deficit, of excess and phenomenon). From reading this, I’d say it is quite common to be able to have “phantom” sensations, by which I mean sensations in for example a limb that has been amputated. Sometimes these emanate from nerve damage at the amputation, sometimes in the transmission of information between the limb and the brain; and sometimes in the brain itself. The author of the book cites stimulation or damage to the sensory cortex, especially that of the parietal lobes.
So my guess is that you’re feeling a stimulation in a part of your brain that effectively feels like burning, either caused by the damage your AVM has induced, or as a consequence of an operation.
…just a thought. Best regards
Richard
Very true thank you Richard. I have scarring on my brain. Chemotherapy could help??
You know what? I don’t know what would help. Perhaps nothing, I’m afraid, but always ask a doctor stuff like that.
The book I’ve got is old. It was written in 1985, so it very much reads as a series of neurology stories, where the author (the eminent neurologist, the late Oliver Sacks) tells illuminating stories about his patients. I would characterize “treatment” in the book as “finding a way to cope” rather than anything else; the rest of it is Sacks’ enjoying the wonder of the brain and its deficiencies and excesses, as demonstrated in his patients.
I do love his love for his patients.
If you knew it was false, induced by some damage from your haemorrhage, would it help to cope with it?
Is the pain in your head or does it feel like you hand or arm or some other part is affected? I don’t know how that would help but again, the book gives an example of a person with a prosthetic leg who, with the prosthesis off, feels ghost toes going into spasm, but with the prosthesis on, is less afflicted… as if being able to see “the leg” stops the painful fantasy in his brain playing out. Whether it is merely in the brain or more “in the mind” is one of the questions not wholly answered in the book.
Very best wishes,
Richard
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Thought no 2. The right thing to do is talk to a neurologist about it. If there’s anything to be done, they should know. If it’s a matter of coping strategies, they should know of a string of coping strategies.
Wishing you the best.
Richard
Yes. I’m going to try and see my brain surgeon!!!
He seems to know best.
When u say pain, do u mean pain inside the skull or the skin on top? My AVM rupture happen 4 years ago last month. Did u have a rupture or a just a removabl? My scalp hurt for a while but not to long. The scalp is still pretty sensitive. I do have headaches every day since the surgery. Not for usure his helps.
I had complete left side paralysis. I thought that was for the rest of my life. A dead arm and leg. The feeling eventually came back. With it extreme pain methadone wasn’t enough. I was desperate.
How about go back to your doctor to ask them WHY this is happening. THEN, go to another doctor that is in the same area, & get a 2ND opinion!
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Thank you that is the advice I always give too. I’m seeing the man who removed the AVM after Christmas
The latest MRI revealed a scar near my motor functionality. Permanent unless reduced I fear.
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@Cookster I had a massive rare stroke prior to getting my AVM - DAVF
Called a CVST- Cerebellum venous sinuous thrombosis
I had 5 blood clots all over my brain and went into a coma
Then about 6 months later they found the DAVF
Anyway after I woke up from my coma and ever since almost 8 yrs ago I have had burning like a bad sunburn pain on my brain.
Even though now my scans show no sign of the massive stroke or small stroke I still have this pain and leg pain.
My neuros ( at Stanford) said they believe the small nerves they can’t see on the MRIs got fried .
In February we are going to try ketamine IV infusions to see it will help.
I have tried literally everything else as I am a patient at the pain clinic and see the heads of all the neuro depts.
I will post here to let people know if it helps with pain.
Botox shots at the location have taken it down one notch but that’s it…
Hugs
Angela