What treatment to get? Who has tried...results...??

[BIGMAN131307]

** Background Info. **

I've been living with Eplepsy for over 15yrs. Over the years I have been on various meds & med combos.

At one point I was taken off meds. My neurologist at the time said I just had migraines. After a few years of dealing with seizure spells, I had two grand-mals seizures. I was quickly put back on meds. My neurologist then tried various meds. But none really worked for me. Unfortunately he moved away. I then got another neurologist. Soon I was faced with more meds. My med. trail is large. Some meds ended up causing me internal problems. That resulted in me having surgery to remove my gall bladder.
\Here is a general idea:

As a Child:

Phenobarbital
Tegretol

As an Adult:

Tegretol
Tegretol & Dilantin
Tegretol & Neurontin
Tegretol & Lamictal
Dilantin
Trileptal & Dilantin
Trileptal & Depakote (severe stomach/groin pain)
Trileptal & Topamax (severe stomach/groin pain)
Trileptal & Zonegran (severe stomach/groin pain)
Trileptal & Keppra (severe stomach/groin pain)
Trileptal & Lyrica (bloating / weight gain)

************************************************** *********************

After trying various meds & med combos, my neurologist suggested surgery. I've had several of the phase I tests. But I'm not sure if I want to go under the knife. I keep thinking of the 1% that have complications during surgery. My luck is non-existent!

What treatment would you get? If you had any of these done, what was the outcome? Did you have any complications, what were they? Are you the same person (minus the seizures)?

Please help me try to decide.

[Bernard]

Several members here have had surgery with good results. If you are a candidate with a well defined focus, it might be a good option.

That said, I would recommend you try EEG neurofeedback before any of those options if you can swing it. It's non-invasive and there are no known cases of adverse effects stemming from it. It's worth a try before opting for the measure of last resort IMO.

[BIGMAN131307]

Several members here have had surgery with good results. If you are a candidate with a well defined focus, it might be a good option.

That said, I would recommend you try EEG neurofeedback before any of those options if you can swing it. It's non-invasive and there are no known cases of adverse effects stemming from it. It's worth a try before opting for the measure of last resort IMO.

That sounds like something I could try. After some reading on it
I think it would be worth trying.

I'd still like to know what others dealt with on the other side of the knife.

[Bernard]

There is a member here that has had the Gamma Knife surgery. He is the only one I have seen over the last few years that participates in epilepsy forums who has had it: Gamma Knife surgery

There are several members here who have had brain surgery. Here is one thread on the topic: brain surgery

You might try posting on those threads or sending the members a PM if you'd like more info on their experiences.

[Birdbomb]

[shameless plug]For first hand experiance with VNS I 'd like to invite you to my site. With nearly 800 member who have VNS you can get a good idea of the broad spectrum of the results.[/shameless plug] :wink:

www.vnsmessageboard.com

IMHO, I would not rely on information from any site that is funded or financed by Cyberonics (the only manufactor). There is an enourmous amount of marketing puffery surrounding this devise and the studies are highly questionable due to the varing results.

[Nancy]

hmmmmmmm
Well, I developed epilepsy in 1990 that no one knew was caused by a brain tumor in my left temporal lobe which was finally found in July, 2005.

It was removed in Feb., 2006, but ~sigh~ after 9 months my partial complex seizures returned so I had more surgery in May, 2007.

Now I'm waiting to see what happens next. I'm a great fan of brain surgery IF it's preformed in a university hospital.

[1096]

[reply to nancy]
is that because you believe in educating and helping medicine or because if you suddenly start dying for unkown reasons there is sure to be plenty of bright people spectating who together will have surplus amount of beneficial ideas to bring you back to health?[/reply to nancy]

[reply to bigman]
eeg experience... uhm im confused and curious as to how you have such a large, big if you will, drug usage history and havent had an eeg before?[/reply to bigman]

[BIGMAN131307]

[reply to bigman]
eeg experience... uhm im confused and curious as to how you have such a large, big if you will, drug usage history and havent had an eeg before?[/reply to bigman]

I've had several EEG's, MRI's, CAT scans. I also had Video EEG monitoring, WADA test.

Lets see:

EEG: at least 6
MRI: 4
CAT scan: 2
Video EEG: 1 session lasted 4 days
WADA: 1

[POSITIVEPERSON]

Hi : I have had epilepsy since I was 11 yrs old and my body would only accept a few meds and eventually none at all . 2 yrs ago I went for homeopathy treatment because I couldn't afford the nuerofeedback. I am now
weaning off 50 mgs of mysoline and still taking homeopathy med. I am seizure free. The drawback of homeopathy is that its wiser to do when your first diagnosed so you don't have to go thru the adjustments . Which is difficult but doable. Adjustments is kinda like reliving the side effects of the meds to clean the system . You do relive the szs until they disappear,which is so weird. They get weaker and weaker until theirs none. My husband was amazed .
Riva

[bobfolgerjr]

Bigman.......I've suffered with epilepsy for over 20 + years with epilepsy. I've been on the same medications as yourself none of which were much help. By the way I've been diagnosed with left temporal lobe epilepsy, however its still argued by to other neurologist that the seizures are starting on the left and right temporal lobes.....thats why I have'nt undergone the knife myself.

I had my first VNS stimulator installed in 1999. My seizures did seem to decrease somewhat in the beginning. It took alittle getting use to the VNS stimulator because my VNS needed to be set at the highest setting, which gave an awkward feeling in my throat and changed the sound of my voice. I acutually lost my voice for the first 3 months. But my voice did come back.

In 2002, I started having a huge increase again in the seizures and the battery needed to be replaced in the VNS stimulator. At that time it was decided to just update the model my VNS, so I did. No problem with that surgery either.

It's now 2007 and thier is a problem. My current VNS stimulator recently stopped working. After xrays were taken and testing was done. Its learned that the original wiring that is placed from the vegus nerve in my neck to the VNS unit in my chest has a break. The break is in the neck area. The neurologist surgen feels that it is to much of a risk to go into the neck area and try and replace the wiring because of the scar tissue that has built up in the area since my original surgery in 1999. He stated going into that area could cause damage to my vocal chords and the ability to speak for life. So its back to square one.

Do I think VNS is good ? YES Just make sure that they have improved its wiring system. I was one of VNS's early people, they may be new methods. Just investigate them.

Best of luck to you.

[BIGMAN131307]

It's now 2007 and thier is a problem. My current VNS stimulator recently stopped working. After xrays were taken and testing was done. Its learned that the original wiring that is placed from the vegus nerve in my neck to the VNS unit in my chest has a break. The break is in the neck area. The neuro surgen feels that it is to much of a risk to go into the neck area and try and replace the wiring because of the scar tissue that has built up in the area since my original surgery in 1999. He stated going into that area could cause damage to my vocal chords and the ability to speak for life. So its back to square one.

Do I think VNS is good ? YES Just make sure that they have improved its wiring system. I was one of VNS's early people, they may be new methods. Just investigate them.

Best of luck to you.

Is it true that the VNS wiring can never be removed? Or was that when they first started?

[Bernard]

It is possible for the leads attached to the vagus nerve to be removed, but it is a risky procedure as there is scar tissue there from the implantation procedure. There is a higher risk of damaging the nerve.

Doctors do not like to perform this surgery unless its really necessary. The risk/reward equation is not in their comfort zone.

[brain]

Oh boy!

I've had:

EEG, video EEG, ambulatory EEG, qEEG (quantum), QEEG (Quantitative)
MRI, MRI WOW, CT Scan:
Numerous Times - had first EEG beginning 1969.

ISPECT, PET, FDG PET/CT Scan - Performed Once.

1.5 Wada (Wada last year was half done because of
problems half way through it and was called off)

Had several other types of Nerve tests at Shands
but I cannot remember what they were called,
back in the early 1970s.

Drugs:

Dilantin
Mysoline
Klonopin
Keppra
Depakote
Diazepam
Phenobarbital
Tegretol
Trileptal
Felbatol
Zonegran
Ativan
Diastat

I think I got them all covered.

I am allergic to in order:
Phenobarbital, Keppra, Tegretol & Trileptal
(which is Tegretol with Oxygen)

They have discontinued and added Dilantin
which I have been on it for so long as it
has caused severe problems with my teeth
and added it to the allergy list, but I
prefer not to - but to keep it as the
"spare tire in the trunk" as it's "OLD FAITHFUL".

I've normally been on an average of 3 anti-
convulsants (now known as anti-epileptic drug's - anti-
epileptic drugs) but have been on as many
as 5 anti-epileptic drug's and have been on seizure-free
spans as long as almost 5 years, before
the body began to develop tolerance or
resistance to a medication or medications
or it just collapsed.

The medication that worked the best for
me for ages in order if this were a NASCAR
RACE would be:

Dilantin, Mysoline, Klonopin, Zonegran (Rookie).

I haven't used Mysoline in ages, and the Neuros
have been afraid to put me on it because of the
reaction to Phenobarbital and Tegretol. Now
with Dilantin "retired".

I'm now on Zonegran (Rookie) which is the leader
with Klonopin behind him.

This is the FIRST TIME IN MY LIFE - I've ever been
on just 2 anti-epileptic drug's!

However, the Recent epileptologist had added Folate (Folic
Acid) 2 mg - which is a vitamin along with the anti-epileptic drug's.


I was supposed to be scheduled for surgery 3 times
for the Temporal Lobe Region by 2 Brain Surgeons
(in 1980s and early 1990s by one but HMO denied
it even though in spite of all the evidence and the
appeals, and the EFA Chairman in the 80s even came
to vouch on our behalf having to deal with me in the
ER personally multiple times - and we lost - both times).

Then last year - because the Nurse administered
medication that put me to sleep, screwed the Wada
procedure, I was supposed to have it redone in
February this year after the angio-seal healed, but
some issues rose up.

I may still have the Wada done again. I did have
a Wada performed in 1989 in Georgia, and they
were going to perform a brain surgery there, but
we moved back to Florida as our stay in Georgia
was temporary. All attempts to retrieve those files
and films, et cetera have been fruitless.

Edited:
I've been informed I do not qualify for VNS,
however I may qualify for Gamma Knife or
other type of Brain Surgery.

[POSITIVEPERSON]

I am amazed at how many meds we have all tried . And we are still walking and talking !!

The side effects of the meds and the combos is enough to stop an elephant .


Ech !!!! I am so tired of meds , but yet I am realistic enough I may have to substuite
the 50 mgs of mysoline with another med.

When I first got epilepsy when I was 11 the Dr convinced me as long as I took my meds I would be seizure free. I believed him . rofl

Heres to being seizure free with the minium or no meds at all!!!!!!!!!!


Riva