"Excellent" outcome from PET scan, and as a result, highly likely brain surgery

[Mantis]

"Excellent" outcome from PET scan, and as a result, highly likely brain surgery

:woot:

First of all, I must apologise to a few people here who I should have replied to over the past week or so. I've just been feeling increasingly anxious over this recent hospital appointment. Often when I tried to think of a positive result, my mother told me to "not get my hopes up" and that I may have epilepsy for the rest of my life. Thanks, mum! It's been five years of hell now. I know some have had E for far longer, but this is the best piece of news bar none I've received over those five years. However, it's unlikely things will get better before the surgery. From now until then it's all about endurance, and even so, it's not an absolute certainty the surgery will go ahead. Let me summarise it all in bite-sized pieces (well, from what I can understand of my neurologist's notes since deciphering his handwriting is like understanding ancient scriptures):

• PET scan happened around three months ago
• I was told by somebody that I should have the results in a few days
• Three months later I had an appointment at the Birmingham hospital (a hefty £150 cost for the return tickets, but it was worth it)
• I don't know how, but I was previously told that my brain had legions all over and thus would unlikely be eligible for surgery—however, this was reported to be a mistake at the appointment, and that my brain has had discharges from various parts of my brain but not legions, and thus quite obviously a massive relief
• Apparently, right before the PET scan three months back, I had a focal seizure and the dye that they injected in me produced interesting results that indeed showed high activity in the temporal lobe
• My neurologist will hold a meeting with the surgeons to determine whether they will provide funding for my surgery, but most importantly, whether it is likely that they can single the problem out to a specific area, which my neurologist told me would be likely
• In my neuro's report he has diagnosed me with [illegible] [illegible]... er, well, basically whatever the name was, it means my brain is probably intolerant to AEDs, since I have been given more than six without a positive outcome
• I can't make out one of the AEDs, but I think he's planning to put me on (sorry, Mickey Mouse spam protection bans me from posting links) Vimpat and Fycompa, and I'm being taken off Keppra, mostly because of my complaints of nausea and heartburn
• Considered pre-surgery actions include intracranial monitoring (wiki article on this is slightly worrying), functional MRI scanning and neuropsychology
• If memory serves, my temporal lobe's discharges create a ripple effect that affects just the frontal lobe as well, so whilst the discharges aren't coming from the frontal lobe, it's still, erm... electrified? onder:
• I personally estimate that if all goes to plan, I should be seizure-free by 2015, but you know what the health services are like; whilst I appreciate all of this, things often go pear-shaped

That was quite a long list, looking back at it. But I wanted to write everything down that I could understand somewhere. Like a personal reference for myself, and anybody else who is interested. Half of the information I don't understand at all, and I'm still looking into these new AEDs, which I'll start on soon, and slowly come off the current meds on Monday. You know, I can't quite fathom how life will be if I'm free of these metaphorical chains. I'm not going to miss seizures—not in the slightest!! However, life without having seizures every day would feel strange. Fantastic, but unusual. Actually being able to go out without almost having a panic attack over the fear of having a seizure seems like a pipe dream...

Despite all the pondering... :cheers:

:yippee: :yippee: :yippee: :yippee: :yippee:

That's a thought. I'd be able to drink alcohol at last. And drive. Possibly skydive one day. Get a job. Maybe even become successful and travel to other beautiful countries without needing a babysitter. I ought to not dream about this too much. It's only around a 5-10% probability that I'll be denied surgery, but then again since I'm one of the 0.008% (average) of the world's population with active epilepsy, I'm unlucky enough already. Thanks for tolerating my musings.

 

[sassi]

That'll be great! I'm really excited for you to have the chance to be eligible to have surgery and I really, really hope you get it. Skydiving sounds excellent and if you get to I'd love to see some pictures! If you drink alcohol I'll suggest some beers for you to try from my days drinking! But I know I'm getting ahead of myself with that so I'll just hold onto that.

That's some really exciting news and I hope that it all works out and that you aren't denied surgery because if you get it and the surgery is a banging success... All the things that you can do afterward is absolutely amazing! Keep us updated!

 

[CQ:)]

Mantis,
That's good news that you are looking at being a good candidate for brain surgery, is the PET scan the only pre surgery test you've had or have you had a VEEG?

I had my surgery to remove scarring on left temporal lobe in March 2011, my pre surgery tests involved PET scan, SPECT scan, MRI, Video EEG, neuropsych evaluations.
When I had the VEEG I only had some simple partials so the epiologist wanted me to have an fMRI. For me to have the surgery a team of specilaists involved with the surgery (epiologists, neurologists, surgerons, neuropsych, technicians who did the MRI, SPECT Scan, PET scan, EEG etc) had a meeting to determine if I was a good candidate for surgery. I just needed 1 specialist to say no & I wouldn't have been able to have surgery, the whole team thought I was an excellent candidate & it was safer for me to have surgery as my seizures would eventually get worse.

I hope if you are able to have the surgery then you will be able to remain seizure free but you must remember with brain surgery there is no going back, the surgery helps control the seizures & isn't a cure.

I have no regrets in having my surgery because I think I am one of the lucky ones as I am now 2 1/2 years seizure free, it has helped improve my life.

Good luck with it all & keep us posted.

 

[Mantis]

Just as an update, by chance I came across the name of my new diagnosis. It's called intractable epilepsy, which is another way of saying that the seizures can't be controlled through normal means and that my daily living is badly affected.

That'll be great! I'm really excited for you to have the chance to be eligible to have surgery and I really, really hope you get it. Skydiving sounds excellent and if you get to I'd love to see some pictures! If you drink alcohol I'll suggest some beers for you to try from my days drinking! But I know I'm getting ahead of myself with that so I'll just hold onto that.

That's some really exciting news and I hope that it all works out and that you aren't denied surgery because if you get it and the surgery is a banging success... All the things that you can do afterward is absolutely amazing! Keep us updated!

Thanks a lot. That's very uplifting, and I'll certainly hold you to the beers! I think if there's one good thing about an illness as serious as epilepsy, it's that we're much more understanding and considerate of other people's experiences. I know I won't take things for granted much if I mostly recover.

Mantis,
That's good news that you are looking at being a good candidate for brain surgery, is the PET scan the only pre surgery test you've had or have you had a VEEG?

I had my surgery to remove scarring on left temporal lobe in March 2011, my pre surgery tests involved PET scan, SPECT scan, MRI, Video EEG, neuropsych evaluations.
When I had the VEEG I only had some simple partials so the epiologist wanted me to have an fMRI. For me to have the surgery a team of specilaists involved with the surgery (epiologists, neurologists, surgerons, neuropsych, technicians who did the MRI, SPECT Scan, PET scan, EEG etc) had a meeting to determine if I was a good candidate for surgery. I just needed 1 specialist to say no & I wouldn't have been able to have surgery, the whole team thought I was an excellent candidate & it was safer for me to have surgery as my seizures would eventually get worse.

I hope if you are able to have the surgery then you will be able to remain seizure free but you must remember with brain surgery there is no going back, the surgery helps control the seizures & isn't a cure.

I have no regrets in having my surgery because I think I am one of the lucky ones as I am now 2 1/2 years seizure free, it has helped improve my life.

Good luck with it all & keep us posted.

By VEEG, I assume you're referring to what was called a video telemetry, to me. I was kept in a room with one other epileptic (a nice guy no less) with a TV and my own laptop. I didn't like the idea of being monitored, but I knew it was for the greater good. I had more wires attached to me than someone plugged into the Matrix.

I've had a series of EEGs and MRI scans. (I was sent to one place as a test rodent for one of the newest MRI models.) They are trying to determine the specific area of my temporal lobe needs removing, because a mistake could remove my ability to speak, apparently! Your procedure sounds similar to mine, but I must ask what the SPECT scan is. I'm on my phone, so can't search easily.

I know the risks of brain surgery, but I can't back down now. Sometimes it takes a leap of faith to get to point B. I also know I'll always be an epileptic. It will always be a part of me, but I could accept the occasional seizure so long as it no longer controls my life. How frequent were your seizures before this? Thanks for the informative post. I also wish you good luck for your continued wellbeing.

 

[CQ:)]

By VEEG, I assume you're referring to what was called a video telemetry, to me. I was kept in a room with one other epileptic (a nice guy no less) with a TV and my own laptop. I didn't like the idea of being monitored, but I knew it was for the greater good. I had more wires attached to me than someone plugged into the Matrix.

In video-EEG, you are videotaped at the same time as your EEG is recorded. The recording is carried out for a long period of time, often several days. The doctor usually views the video and EEG images side by side on a split screen. In this way the doctor can see precisely how your behavior during seizures is related to the electrical activity in your brain.

https://www.epilepsy.com/epilepsy/testing_videoeeg

With the Video EEG I had the electrodes attached to my head & all the wires went into a little bag which sat on my waste (it was like a bum bag, not sure what you call it in England), there was a video camera on the wall which recorded me 24/7. I had a big chair to sit in which was direct view of the camera & I had to stay in that chair, only time I was aloud up was when I went to the toilet. If i felt a seizure I pressed a button to alert the staff.
At the monitoring unit where I had my VEEG they had 3 monitoring rooms which were all individual rooms, the room I was in had an ensuite but teh other 2 shared a bathroom.

I've had a series of EEGs and MRI scans. (I was sent to one place as a test rodent for one of the newest MRI models.) They are trying to determine the specific area of my temporal lobe needs removing, because a mistake could remove my ability to speak, apparently! Your procedure sounds similar to mine, but I must ask what the SPECT scan is.

SPECT (single-photon emission computed tomography) shows the blood flow in the brain. A safe, very low-level radioactive compound is injected into your arm, and the particles it emits are measured. The more blood that flows through a certain area, the more particles are emitted. The result is displayed as a picture with different colors representing different levels of blood flow.

SPECT scans obtained during or immediately after a seizure may show increased blood flow in the area where seizures arise.

http://www.epilepsy.com/epilepsy/other_spect

I know the risks of brain surgery, but I can't back down now. Sometimes it takes a leap of faith to get to point B. I also know I'll always be an epileptic. It will always be a part of me, but I could accept the occasional seizure so long as it no longer controls my life. How frequent were your seizures before this? .

Right from the beginning the epiologist told me what risks were involved with the surgery eg - a very small chance it could cause a stroke but that was something like 1 in 1000 but I was willing to take those risks. I spoke to my family about the surgery (parents, siblings) & they were all for me to have the surgery if there was a chance it could help reduce the seizures.
Before the surgery I was given about an 80% chance that the surgery would be a success but after the surgery the surgeons said they felt they got all the scarring & there was a higher chance that I would have good seizure control.
I went into the surgery just hoping that the surgery would help reduce my simple partials which were the main seizures I took so I am really happy with the outcome. The only thing close to a seizure I've had is sometimes when I am really stressed or nervous I will get a funny feeling in my head or hear a strange noise but it doesn't affect me (can still talk, work while I feel this way), the specialists said that is not a seizure but my brains way of coping with stress instead of having seizures.

How frequent were your seizures before this? .

I had my 1st seizure when I was 9 months old & it was a Tonic Clonic, I took Tonic Clonics on a regular basis until I was about 3. I then went 21 years seizure free but in 2002 when I was 24 I started taking seizures again.
My Mum had rung me that morning for a chat but I was making no sense so she rang my neighbour who checked on me & realised I wasn't my usual self so they called an ambulance. I was taken to the ER & had a Tonic Clonic in hospital. I was referred to a neurologist the next day who did an EEG on me & confirmed my seizures returned.

After that I mainly took simple/complex partials, I tried 5 medications but none of them helped control the partial seizures so in 2009 my neurologists suggested I look into brain surgery & referred me to an epiologist in the city.

Before my surgery I was probably having a couple of auras (simple partial) every 2 weeks & a few complex partials a month. I used to keep a record of the seizures I had but only recorded the ones I was certain of (when I noticed something was different or it was witnessed by someone). I live on my own so there is a really good chance that I had more seizures then I recorded.