Fearing my past...

[cadsgj]

OK, I am really getting nervous as the day back to my neurologist is Friday (just saw him in May). 18+ years in the seizure world, brain surgery three times... after the last surgery (many years back) my seizures had become for the most part 3-4 relatively mild partial (simple or complex) seizures a year. Now here in the last few months (just before joining CWE) something happened and seizures jumped back to too many.

I'm NOT going back for surgery, I'm not. Unless I am basically told it is pretty much a must. Every since I called early in June, my neurologist wanted me in ASAP... so we scheduled an appointment to be in a few weeks. Then my regular doctor talks to my neurologist and they call me back stating they need my appointment to be more time, so we had to reschedule; month and a half later... this Friday. Every since I've had to get in to see him ASAP things have been ok, until last night... my mind is off on it's own. If he says I should, I am not going back for another surgery! I keep telling myself that, and then "what if..." pops into my head, "what if..."

Ok, I am merely venting. And no, I have not been told any surgery is coming, I just fear the days in the past. At least I can do it here and I feel many know this place in life and understand.

 

[Bernard]

Just curious, but how long has it been since your last brain surgery?

... A longer term study shows that seizures can reoccur after a period of years, ...

http://www.coping-with-epilepsy.com/index.php?p=temporal-lobectomy

If the doc is stumped for treatment options, you might consider trying EEG neurofeedback. Your neuro likely doesn't know much about it, but hopefully you can find a competent practitioner in your area.

 

[cadsgj]

Hey Bernard,

Thanks for that link but the thoughts of going through surgery again, that is what is sending my mind in a freaking out mode.

The last brain surgery, last two, was I believe May, into June of 2003. Even though it has been a chunk of time ago I remember many bits and pieces of this time. I suppose it is mostly the bad parts of six weeks in the hospital. I may have stated four weeks before but my parents yesterday told me it was six. Four weeks - six weeks; to me, it just does not matter. Recovery didn't go well as it took a year plus and I was told by my neurologist that much of my brain use now goes to the other side (right side vs left) which is why I repeat many words and it usually takes me 30 seconds to a minute find memory and then use it. When it takes more than a minute, I get frustrated and I pass on to something else

You mentioned a "competent practitioner," what exactly is one who is in this field? I know that I see occupational therapists at a rehabilitation centre and they are trying to help me in ways I can hold on to certain memories, but I suspect this is not a practitioner.

I will certainly read these links a few times... glanced thru them... and see what I may be able to find stepping me forward in a good way. The one thing at the moment I remember most is the caffeine and certain emotional triggers happening in my life... very interesting and well worth reading again and more in depth (with memory notes).

 

[Bernard]

I meant a competent neurofeedback practitioner should you decide to go that route.

 

[cadsgj]

Oh. Thanks. I probably should have known but I chose to come live here in Saskatchewan :lol:

Just kidding. I certainly cannot blame Saskatchewan for what I don't know or remember! I find much of the info via Lobectomy link very good information I can read/look-over and bring in to my neurologist come Friday. Thanks again!

 

[cadsgj]

And at times our past comes back and talks to us...

Went to see my neurologist today and "Fears of my past..." jumps back into my fears of today. Four things he suggests:
1) wants me to get another MRI. 2) wants me to get another EEG. 3) changes some of my drug usage while increasing the one drug I was hoping went away. 4) oh and then he mentions that if this does not quickly clear up my seizures we need to talk about getting back in for surgery to clear this up.

I think after this he saw tears growing and finding a way thru my eyes. Did what I could to hide it, but I suppose it was this fearful thought tearing me up this week coming to life. And on top of all this, the testing of memory did not turn out well as every thing he asked me what it was, I could not remember at the moment... Watch, pen, finger, etc.

I am not going back for another surgery... I am not going back for another surgery... Oh, and medication change on the way home, it is not covered by insurance, it's too new!!!

I am not going back for another surgery... Oh, but that is covered by insurance :dontknow:

Some days are better than others... some.

 

[qtowngirl]

awww friend *HUGS*... i'm still reeling from surgery #1, cannot imagine what you are feeling right now. first and foremost though, please realize how f'ing amazing you are. really. three surgeries? cad i did countless research to decide on going through with one (and yes i'm proud), but three? you put me in awe. and i'll speak for my dear, dear friend 2ndchances, who five months ago went through surgery #2... she'll agree. AMAZING. bigger balls than most men on earth. *tears* we both know what it takes to say 'yes' when we are approached to having this surgery. hardest decision in life and requires strength like no other. and you've put yourself at risk to try and get better 3 times. such a man.
*smile* hey it proves that us from saskatchewan are unbreakable!! and don't you worry about shedding a few tears... much deserved, and real men tear up lots, it's COMPLETELY normal. as well the lack of memory is fairly normal, don't let that eat up your stress, it just 'is.' i was warned, and they were right. mostly verbal memory like you, can't remember the word i want in a sentence etc. but, no seizures. and if your seizures are alot lower, well, remembering words means very little friend.
i'm not going to ask questions, you're a soldier in this so i'm sure i could teach very little, except for the issue with meds. have you decided to go along with the doc re: not helping you get off the drug you want but also upping the dose? *head shake* damn doctors ey, it's up to us what goes in our system and fucks with our heads, not them. if you really hate the stuff (like me and vimpat !&#$&$&%!), then keep pushing him. we know ourselves best right.
you're in my thoughts my dear, very hard decision i know. just keep in mind though... esp. on the shitty days... you are in the dictionary under 'strong.'

 

[cadsgj]

qtowngirl, thanks. It is helpful in my mind the thought of what may be a decision coming. I guess my neurologist wants my EEG to be done in Saskatoon as opposed to Regina... guess he does not trust Regina hospital enough in this field... hmmm. So I guess I get to wait about 6 months or so to get in there for the EEG. After we get that done we will talk about what the choice is IF the new medication does not stop seizures... boy am I hoping there.

Again, thanks for what you have to say! Makes me feel a touch better.

 

[Cint]

And on top of all this, the testing of memory did not turn out well as every thing he asked me what it was, I could not remember at the moment... Watch, pen, finger, etc.

Cadsq,

After the surgeries and experiencing the memory loss, have you been to a neuropsychologist or a speech pathologist? Still years after my lobectomy, I have trouble remembering words, names, etc. at the moment and my neurologist sent me to a speech pathologist for ways to help with memory/word finding.
http://www.epilepsy.com/epilepsy/specialists_speechpathologists

I am not going back for another surgery... I am not going back for another surgery... Oh, and medication change on the way home, it is not covered by insurance, it's too new!!!

I am not going back for another surgery... Oh, but that is covered by insurance :dontknow:

Some days are better than others... some.

I wouldn't go back for another brain surgery, either, but the damage in my brain was too deep anyway to go back in. I would have ended up with NO memory at all if they did go that deep in my hippocampus! Has your dr. considered the VNS?

 

[cadsgj]

qtowngirl, you made a very good point on the meds and docs (neurologists too), and one of the two meds is getting changed. At first my neurologist was going to increase both my meds, I brought up my opinion/concern on my present meds, he thought about it and suggested a med that was new in the states in 2009. Here in Canada I am not sure how long it has been ok to get this drug. Found out that here in Saskatchewan I have to be accepted by someone or some group for this drug and I will find out today if I do get it. It is Lacosamide or Vimpat and when I looked it up it certainly said nothing odd or off-the-wall about it. Anyhow, I cross my fingers here hoping that this drug will clear things up. I sure do feel happy for you

 

[cadsgj]

Cint, me, I am not sure what a neuropsychologist is... A speech pathologist I went to for about a year. After a year of them doing what they could they told me that at that point they have gone as far as they can. They told me that after about a year one's brain would not come back any further - I remember that comment pretty darn well. That was in 2004 or 2005. I guess I accepted that and went on with life from there.

Now about three months ago when my seizures started getting much more frequent I have started going to a health region here in Regina (don't remember how it came about) and they have told me, "NO. That is certainly not true!" And then we had about a two hour, one hour meeting, and they explained to me that there are multiple ways to work with ones memory, to make things certainly to some degree better than where I am at! They were totally shocked at what I was told back in 2004 or 2005. It hasn't really gotten better yet but they still are seeing me every couple weeks and I go to a group of others in the same situation I am.

I have not talked to my doctor or neurologist about VNS and until now (least that I remember) have not heard about it. Does VNS make seizures better? I will write it down in my note pad for my next visit to doc or neurologist and i will talk to them about it. Thank you VERY MUCH for bringing that up. If in any way it can be a choice to keep me from going in for another surgery, that would be great!

I am going to look up that link on I believe speech pathologist and see what it has to say, or what is there. Thanks!

 

[Cint]

I went to see the speech pathologist 10 years after my lobectomy because my memory was getting worse, partly because of the surgery and partly because of the seizures.

Your dr. may not be in favor of the VNS (Vagus Nerve Stimulator), but at least you can bring it up. It's not for everyone and it doesn't work for everyone. But for me it decreased my seizures immensely, since the brain surgery made them worse for me. And I didn't qualify for a 2nd brain surgery. I've now had 3 VNS surgeries and they have all worked well for me. This last one was done in April of this year and I haven't had a seizure! The surgery is a same day surgery and only takes 1 1/2 hrs. The VNS is like a brain pacemaker, so it does take some time before they find the right settings.

Here is their website for more info:
http://us.cyberonics.com/en/vns-therapy-for-epilepsy/patients-and-families