My fear of the "Surgery", with ??s

[BIGMAN131307]

This thread is for fact & opinion finding.

I'm interested in having the surgery. But the thought of someone cracking open my skull to cut my brain scares the crap out of me.

My facts:


I've been living with Eplepsy (Complex Partial Seizures) for 15-20yrs. Over the years I have been on various AEDs & AED combos. At one point I was taken off AEDs. 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 AEDs by a new neurologist. My then neurologist tried various AEDs. But none really worked for me. Unfortunately he moved away. I then got another neurologist. Soon I was faced with more AEDs. My AED trail is large. Some AEDs ended up causing me internal problems. That resulted in me having surgery to remove my gall bladder. My current and only AED I'm taking Trileptal is causing me only one major side effect. It is very unappealing.


My AED trail:

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 (severe night seizures / bloating / weight gain)
Trileptal (severe dry flaky skin on my scalp & face)

Of course I experienced other side effects, but they were minor. The side effects I listed were/are very severe.


Surgery Facts:

Between my current neurologist & my previous neurologist (who I really miss) I have been declared a good candidate for surgery. But my EEG monitoring session is at least 5 years old. This really concerns me. So when I met with the neurosurgeon I told him about this. He told me that he would also like me to have another EEG monitoring session. But my current neurologist says I don't need it. At one time I may have agreed, but since is ranting and raving when I inquired about Neurofeedback & Gamma Knife Surgery, that's no longer the case. I don't feel like I can rely on him anymore. If I could get to my previous neurologist I would do it in a heartbeat. But his new practice is too far away.


My options:

Continue AED treatment
Neurofeedback
Gamma Knife Surgery
Surgery

My fear of the "Surgery":

Well for starters I'm not really afraid of the Gamma Knife Surgery. It has been effective for many people. But those that didn't have good results, didn't suffer from it either. Sense it's non-evasive the risks at lowered. But unfortunately they don't offer it in my area for CPS. If they did my current neurologist doesn't think it would help me. I'm not sure if he's
helping me either.

The "Surgery" really scares the crap out of me. Sure it sounds simple in theory. Have the patient take numerous tests. Locate the defective tissue of brain causing the seizure activity. Then map the patients brains vital functions. Determine if the defective tissue of brain can be safely removed through surgery. That all sounds well in good, if it all goes well. But what if they take out to much or little? What if they damage other parts of my brain? What if they remove the wrong section? This is what scares me and my family. Sure there are patients with success stories that the neurosurgeon will be happy to provide. But what about the patients that didn't do so well or even didn't survive? Where
is that list of patients?

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For those that feel like sharing you can post here, or PM.


I would like members who have/had Complex Partial Seizures coming from the right temporal lobe to explain what they did or would do? Explain how your CPS would effect you. What would you do during them or what others said you did. How long your CPS lasted, and how long after did the effects linger. If you tried alternative medicine or treatments, explain which ones. Tell about there results and how long they lasted. Please explain about any surgeries who had or are planning to have. Explain about the tests prior to surgery you had. I would like to know if the surgery was a success, or not. If you needed to have another surgery, tell about why it was needed. All your information about your experiences
with AED & alternative treatments, or surgery is requested. This information will help me and my family decide if I should go for the surgery.

Yes I know many of you have posted this information before, but it would help me a lot if you could collect your experiences in this thread. It would help me list pros & cons, side effects common to all with CPS, etc. This way I can feel not so isolated by having CPS.


Remember, if you feel like sharing your CPS treatment(s) experience please post here or PM
if you prefer.

Thx,

BIGMAN131307

 

[hawke86]

I had it done and it was unsucessful. My seizures happen on both sides of the brain. My second surgery was a lot better. That's when I had the vagus nerve stimulator put in. I still have seizures and little more controlled, but still have them. Maybe you will have better luck then I had.

 

[Bernard]

... But my current neurologist says I don't need it. At one time I may have agreed, but since is ranting and raving when I inquired about Neurofeedback & Gamma Knife Surgery, that's no longer the case. I don't feel like I can rely on him anymore. ...

The doc is upset that you asked about options? *sigh* I think some doctors have tremendous difficulty when patients challenge their god complex.

My options:

Continue AED treatment
Neurofeedback

You can do both.

Weren't you experimenting with the GARD diet? It's been a few months now, hasn't it? Has it helped any?

Well for starters I'm not really afraid of the Gamma Knife Surgery. ... But those that didn't have good results, didn't suffer from it either. Sense it's non-evasive the risks at lowered.

Some risks are lowered (like the risk of infection). There are some other significant risks with it though.

What if they damage other parts of my brain?

As one doc related to me, the surgery just replaces scar tissue with surgical scar tissue. Even successful surgeries don't gaurantee that seizures won't return after a couple of years.

If you are able to try EEG neurofeedback (ie. there is a practitioner nearby and affordable), I would suggest trying it first. If it doesn't work out, you are only out time and money. It doesn't preclude you from trying something else down the road. :twocents:

 

[BIGMAN131307]

Weren't you experimenting with the GARD diet? It's been a few months now, hasn't it? Has it helped any?

Yes, the results haven't changed much. I'm still having my typical CPS. Although it hasn't helped much, it helped me in other ways. My digestion system has been more effective, not much else.

Some risks are lowered (like the risk of infection). There are some other significant risks with it though.

What other significant risks?

As one doc related to me, the surgery just replaces scar tissue with surgical scar tissue. Even successful surgeries don't guarantee that seizures won't return after a couple of years.

I understand the "bad part" section is removed, then I'm left with a "not-so bad part". But if the surgery is FUBAR, then I can be FUBAR permanently. That's part of the fear.

If you are able to try EEG neurofeedback (ie. there is a practitioner nearby and affordable), I would suggest trying it first. If it doesn't work out, you are only out time and money. It doesn't preclude you from trying something else down the road. :twocents:

There is a practitioner nearby, but my insurance would not cover it. In my current financial situation, I can't pay for it myself. The sad thing is there is a Biofeedback practitioner in the same location as my GP. But it's for only treating people for Incontinence.

 

[Bernard]

What other significant risks?

Going blind for one thing. See here: Gamma Knife

The potential adverse effects of Gamma Knife usually don't manifest until a year after the surgery.

 

[BIGMAN131307]

Going blind for one thing.

Well I already wear glasses for being a little nearsighted. As for the other potential adverse events I already experience most of them already. So I believe that my luck with Gamma Knife couldn't get much worse. If I could get proper testing for it, I would consider it.
A major hospital in my area does do the procedure for cancer patients. As for Epilepsy, I'm not sure. I will have to inquire about it.

 

[RobinN]

The sad thing is there is a Biofeedback practitioner in the same location as my GP. But it's for only treating people for Incontinence.

Would it be worth wearing a Pull-Up? :bigsmile:

 

[BIGMAN131307]

I have enough medical problems, I don't need incontinence. What I would like to have is Medical Insurance provider that wants to help me. I don't need to be cured of every ailment,
just the worst ones.

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Anyone else that has/had CPS with insight on surgery?