Jump to content
Hallucinogen Persisting Perception Disorder (HPPD) Support Forum
Jay1

Brain Surgery?!

Recommended Posts

Today, i went to see my neuro.

We went through the usual.... talked meds etc.... I told him i was done experimenting... I'll take my klonpins and phenobartital, when the occasion is required... otherwise i will battle through. I told him i don't think there is any pharmaceutical cure.

Maybe out of this chat, he could sense my frustration and told me that in Lisbon, they are on the cutting edge of treating epilepsy with brain surgery. He is positive there is a link with my problem and that the right area could potentially be targeted and treated (i would have to do weeks in hospital prior.... MRI, qEEG etc).

Obviously, this would take a huge amount of thinking... weighing up the pros and cons. As of now, it is just the seed of an idea and he has to chat with other neuros and also find out is i am eligible for paid treatment (as a non Portuguese resident).

If they found the right area to target.... Would you guys do it? Have any of your neuros ever even considered the option?

Bearing in mind that I have had this for 17 or so years, all of my adult life.... I think i would probably take the risk.... I think the weeks in MRIs, qEEGs etc actually scares me more.

Share this post


Link to post
Share on other sites

Would love the scans ... but no cutting !!! Perhaps I just don't suffer as you do.

How much and often do you take phenobartital? What does it 'fix' for you?

Am interested though - what EXACTLY is this surgery ??? This problem is system-wide, and certainly in my case, defuse. Yes, people with serious seizures can have spots frozen out with liquid nitrogen (like freezing warts off) ... but there is very high risk. So again, what are the details of this surgery?

  • Upvote 1

Share this post


Link to post
Share on other sites

I have read in the past that people have had large chunks of their brain cut out to cure their epilepsy, having all the types of scans you mention to make sure that part of the brain is not a serious part of your 'self', so as to minimise any side effects.

Surgery has become a lot more common and safer in recent times, with the benefit/risk factor always improving.

Share this post


Link to post
Share on other sites

He didn't go into too much detail.... Like i said, this is a seed of an idea and he needs to check quite a few things before we even give it any further thought, i made the post more out of interest about how people would react to such an offer (i was shocked at the suggestion, but i'm not gonna dismiss it... i'd cut of my own leg to get rid of this shit).... he said that the operations they currently do are to reduce activity in very specific areas of the brain, targeted by the weeks of testing. I raised the usual concerns about brain surgery and he didn't seem to think the risk was high, but said i would need to spend time talking it over with the surgeons.

Maybe you know more than me, but i didn't think there was nearly enough data out there to say, categorically, that HPPD is "system-wide"?

re: Phenobarital.... I don't use it much... just 200mg for panic attacks (i find it works better than benzos) and also as a mild anti anxiety med when i have my occasional 2-3 weeks off Klonopin

Share this post


Link to post
Share on other sites

I read somewhere about a guy who had an operation on his brain for hppd and it actually cured him he said that he had something put inside if i remember correctly to lower the electric activity in his brain

Share this post


Link to post
Share on other sites

I read somewhere about a guy who had an operation on his brain for hppd and it actually cured him he said that he had something put inside if i remember correctly to lower the electric activity in his brain

I think that turned out to be possibly not true. Certainly he gave out conflicting information, making him difficult to trust.

Share this post


Link to post
Share on other sites

I've read about implants to control brain activity, so that part is true, at least.

Scary stuff... But maybe not as scary as looking into the mirror at myself for 10 seconds and only seeing a pair of eyes and a bunch of garbled up hallucinations.

Share this post


Link to post
Share on other sites

I've read about implants to control brain activity, so that part is true, at least.

Scary stuff... But maybe not as scary as looking into the mirror at myself for 10 seconds and only seeing a pair of eyes and a bunch of garbled up hallucinations.

Oh yes, it is certainly true that implants are possible. They can use them to control conditions such as epilepsy and advanced Parkinson's.

Share this post


Link to post
Share on other sites

Maybe you know more than me, but i didn't think there was nearly enough data out there to say, categorically, that HPPD is "system-wide"?

'Categorically' there are likely many manifestations as there is a very individualistic set of symptoms, both which symptoms and their intensity.

The words 'focal' and 'diffuse' are in context of the nature of any particular disorder. Focal causes of epillepsy are those they treat with surgery. I do not think there is such a thing as diffuse causes ... but perhaps there is, such as found in certain dopamine-knockout mice.

Your question/statement is very good food for thought. People can have HPPD like symptoms from epillepsy or visual migraine. The persistance, such as in your case, indicates it is not either disorder. By definition, both are paroxysmal - they present themselves suddenly, go through their course, and then disappears. Both show a slow 'march' of symptoms like an electrical 'wave'. While there is a wide range, migraines 'waves' are typically 15 minutes and epillepsy often a matter of seconds. Then there is often the aftermath, such as very bad headaches for hours or days.

Dr A speaks of "disinhibition in the cerebral cortex" (cerebral hyperactivity) revealed by qEEG mapping. No mention is made of specific areas, but that is by no means conclusive in context of his discussion. It would be a good question to pose to David or Dr A. But the testing offered you would reveal if there is a center (focal) source of 'electrical wave' causing your problems.

If you decided to go through the tests, you would not be obligated to follow through surgery (but be sure to read the fine print). EEG, qEEG, MRI and fMRI seem to not be harmful. CAT scans are X rays - which are known to carry risks. PET (and the like) scans are injections of radioactive material --- the risk of ionizing radiation might be dismissed but such is very much known to increase cancer risks (wouldn't touch unless you are despirate and also have BRCA genetic testing done). Perhaps the hosptal food would be the most dangerous as is it is this country.

Ringo_starr_says_he_loves_hospital_food__JPG.jpeg

Share this post


Link to post
Share on other sites

The thing is.... people lump a whole lot of symptoms in with the term HPPD. Which naturally makes it a more widespread issue.

In terms of the surgery discussed, myself and my neuro are only concerned about the visual issue... nothing more, nothing less. He seems to think there is a chance that the visual issue could be targeted, therefore treatable.

My personal view is all the other stuff, anxiety, dp/dr etc are just offshoots of the stress caused by the visual symptoms.

Yea, the hospital food could be interesting... especially in a country that considers pig's ear as a delicacy :D

Share this post


Link to post
Share on other sites

DBS deep brain stimulation , very effective against depression ocd fybro migrainesand neuroplectic pain, and epilepsy 2-3 hour operation 2-3 days in hospital.

The operation places two electrodes in the brain which regulates the electrical

impulses misfiring , which is widely believed to be the cause of most of the above conditions.

The procedure makes a whole lot of sense as hppd fall into the remit of most of the above.

Ive always felt the condition is disturbance due to electrical activity rather than just a chemical condition.

Thanks Robbie

Share this post


Link to post
Share on other sites

DBS deep brain stimulation , very effective against depression ocd fybro migrainesand neuroplectic pain, and epilepsy 2-3 hour operation 2-3 days in hospital.

The operation places two electrodes in the brain which regulates the electrical

impulses misfiring , which is widely believed to be the cause of most of the above conditions.

The procedure makes a whole lot of sense as hppd fall into the remit of most of the above.

Ive always felt the condition is disturbance due to electrical activity rather than just a chemical condition.

Thanks Robbie

I too have felt it seems to be more of an electrical disturbance maybe because my visual snow looks like sparks sometimes lol

Share this post


Link to post
Share on other sites

BRAIN SURGERY!? SIGN ME UP!

If i dropped enough xanax before i think i could get up on that operating table no problem. We can film it and thenyou guys can view the video to see if i die or not.

Share this post


Link to post
Share on other sites

The story of Henry Molasion is an interesting read (http://en.wikipedia.org/wiki/Henry_Molaison). He had brain surgery in the 1950s for epilepsy when very little was known about the brain. Whilst it did not go according to plan (memories and memory forming skills massively altered, they cut out the hippocampus!), it taught scientists a significant amount about the human brain. He only died a few years ago.

Share this post


Link to post
Share on other sites

I do not know what to say about surgery. I wanted to add that the MRI's and qEEG are not scary. I had both. A couple or three MRI's. They will not show anything if a person only has HPPD. The qEEG did show the activity that was responsible for afterimages and also from what area of the brain it originated.

Share this post


Link to post
Share on other sites

I do not know what to say about surgery. I wanted to add that the MRI's and qEEG are not scary. I had both. A couple or three MRI's. They will not show anything if a person only has HPPD. The qEEG did show the activity that was responsible for afterimages and also from what area of the brain it originated.

Share this post


Link to post
Share on other sites

I'd just ask you to be very, very cautious, Jay. This could destroy your life. Regardless of what they say and how safe it seems, remember that it's a surgery based on incomplete science (as anything involving our brain). I'd not do it without, at least, consulting a few patients directly and asking them about the results and if they feel different after it. Remember: experts make huge mistakes. One word, lobotomy...

But if they have cutting edge methods to map epilepsy, this could reveal something new about HPPD. So, think well about surgery, but, for a community sake, at least consulting them, taking scans and seeing what they've got is a great idea!

I do not know what to say about surgery. I wanted to add that the MRI's and qEEG are not scary. I had both. A couple or three MRI's. They will not show anything if a person only has HPPD. The qEEG did show the activity that was responsible for afterimages and also from what area of the brain it originated.

May I ask you to elaborate a little bit on this one? What exactly does the qEEG show? Is there any technical explanation of this?

Share this post


Link to post
Share on other sites

qEEG having electrodes on certain areas of the head as you know, actually showed a peak on a graph from visual stimulation.  On a none HPPD person that slope peak from the stimulation decreases and disapears,flatens out and goes to zero.  My scan showed the same thing but then even after the peak zeroed out another peak appeared and also eventually zeroed out.  The doc told me that was evidence that the image stayed.  Afterimages when the stimulas was removed.

Share this post


Link to post
Share on other sites

Ive also wondered if oxygen therapy could help, ive heard some crazy success stories with other brain related issues

 

I'll be living in Louisiana for a while and thought about going here to try http://www.hbot.com/facilities

 

I don't understand the link between the two. What sort of brain issues is this supposed to have helped with?

Share this post


Link to post
Share on other sites

Interesting. Possibly. But the site is lacking in information and the few independent research articles I managed to pull suggest the evidence for its efficacy is far from conclusive, especially for neurological issues, and they might be being somewhat misleading about its benefits. Personally, when I see such a long list of conditions that one treatment can supposedly cure, that always sets alarm bells ringing for me.

Share this post


Link to post
Share on other sites

Create an account or sign in to comment

You need to be a member in order to leave a comment

Create an account

Sign up for a new account in our community. It's easy!

Register a new account

Sign in

Already have an account? Sign in here.

Sign In Now

×

Important Information

By using this site, you agree to our Terms of Use.