My Response to Everyone's GK Comments

General General TN & GPN (Old Site)
1

To everyone who responded -- Thank you for all the information you have provided. I felt I went to my appointment armed with lots of pros and cons and discussed these points with my neurosurgeon. My neurosurgeon was pleased that I had done my homework. We will proceed as planned.

I'd like to say that I have complete confidence in my neurosurgeon. I feel that he is an expert in this field in this part of the country. Unfortunately, I don't have the financial resources to go any further than the city where I live and am thankful that he lives in this area and provides treatment RIGHT HERE. I know of at least three individuals in this city who have received treatment from him for this condition at one level or another. I have heard nothing negative.

My neurosurgeon offered me three procedures -- rhizotomy, GK, and MVD. It is my understanding that each procedure treats a different level of the condition, and I fit in the middle.

I have exhausted the list of pharmaceutical treatments except for one -- I reacted badly to all anticonvulsants and baclofen. I am taking a low dose amitriptyline and am getting relief. Once the GK procedure is done, I still have this to rely on for additional relief.

Now, for my emotional response to your posts -- While some of you consider yourselves well-read and well-researched regarding this condition, you aren't medical professionals, and you probably don't know everything there is to know. And you certainly don't know each member of this forum personally. I am one of the most outgoing and optimistic individuals you will ever meet. I love my job as a legal assistant and am extremely loyal to the lawyers for whom I work. I will work 6-7 days a week if that's what it takes for our practice to thrive. I am also a musician on the side. I play the piano weekly in my church, sing there whenever possible, and currently sing the National Anthem for Richmond's Flying Squirrels (baseball team) and Virginia Commonwealth University's sporting events, as well as for local organizations when invited. I am the mother of a handsome, bright, and loving 16-year-old son. Since TN has entered my life, it has tried to shatter me -- my personal goals (at 50, I still have some entertaining to do!) as well as my parenting and support of my son's personal goals. I can't pursue a romantic relationship because I don't have the energy to. Every commitment I make is at risk because of this condition. My job is also at risk due to this condition because I can't leave the house when it strikes. I don't want to be a zombie on all the medicines that threaten other organs with their side effects as well as my sanity.

There comes a point in one's life when you have to put some serious trust in the Man Upstairs. Strange and possibly coincidence to non-believers, but everyone I encountered locally with TN is from the United Methodist Church (both my church and the organization at the local and state level). Each of these individuals recommended this particular neurosurgeon. What does that tell me? To trust my God even more. The neurologist who treats my migraines went absolutely nowhere with my TN symptoms; she tried to tell me I couldn't possibly have it. That's when I turned to this neurosurgeon. He listened, tested, and evaluated. As I said, he is a leader in this field in my part of the country.

Do you all ever rely on instinct (following your gut)? Do you have the spiritual gift of discernment? For me, it's more than saying, "I've had it with this condition. I give up and will take whatever treatment any doctor offers." I've done what any intelligent, concerned patient would do -- Gathered all the facts I could find, discussed them, tried the treatments in the recommended order, and now it's time to move forward.

I will continue to remain on this forum to offer my support and experiences to others in the hopes that I can be of help and comfort to others. I respectfully suggest that others take the same course.

2

Please do let us know how everything goes. Wishing you the best once again.

3

CindyLou, you seem to have covered all the bases, and more. Thank you for your thoughtful and inspiring post. We wish you all the best, and hope that you will be back here soon with a report and, hopefully, good news.

Seenie from Moderator Support

4

CindyLou,

Well said. And may I just say that you are a brave and confident woman. Please keep us up to date on everything and we are always here for each other.

I agree that discussions sometimes move off topic on here and it is counter productive for our members that are seeking support. The "backroom" was created just for those types of conversations and that is where they should take place.

Jane

5

Justjane,

I'm not trying to be antagonistic but my opinion is that you are wrong about the back room, in the sense it's purpose should be close to obsolete, except in extreme circumstances which I can't quite imagine what they might be.
If the entire Ben's network is intended to be a lets hold hands affair, why a network? What a waste of money, there are plenty of forums who cater for just that.
Does anyone who responds on this forum mean any harm? There are rules sure, break them post deleted. potentially kicked off, fairs fair. I can't see anyone extending their effort to purposely harm.
The label 'back room' has it's own bias.
Cindlou in her own post, wasn't asking to be cuddled. If she posts such, then why was anything out of place, hardly asks for censorship. As an individual she can, and indeed has made up her mind.
The back room is new, and how many people are going to refer to it when they have listened to their neuro/ surgeon with a bias of their own? If they can even find it.
In a nutshell if anything strays from the; I feel your pain, these are the meds I take, the procedure I've undergone/ intend, Ben's friends needn't bother raising money there are other forums, unless they want to be different. I realise suppport is often needed, but an alternative view is , in my opinion still support. Sure there are ways of saying it.
Case in point, collage/ autoimmune causes were recently brought up, indeed I think by modsupport. I don't think these had been previously been brought to light in any major sense, and initially in a thread. If taken seriously by members it should be of benefit to many. To distance discussion of the 'norm', from general is as good as censorship, and the norm is either hypothesis or symptomatic relief.
People are not stupid, certainly not those who have a computer and join a forum, they read something they don't like and move on.



justjane37 said:

CindyLou,

Well said. And may I just say that you are a brave and confident woman. Please keep us up to date on everything and we are always here for each other.

I agree that discussions sometimes move off topic on here and it is counter productive for our members that are seeking support. The "backroom" was created just for those types of conversations and that is where they should take place.

Jane

6

Aiculsamoth
You mistook what I was saying. I didn’t mean to offend anyone and I’m sorry if my comment sounded harsh. Rereading it maybe it did. I wasnt pointing fingers. I meant it in a general context that when a conversation gets side tracked too much we start to lose focus on what the actual question was…in turn not helping the poster.
You should know me well enough to know that I am a huge advocate for information being power. I fully support varied opinions and healthy debates. I think we need to think outside of the box with this. And how else is progress made?
I think the back room is a great idea. There are some posts that do go way off topic, like whole separate conversation, but are still valid and informative conversations. I read most of them. Anyways, hope that clarifies.
Jane



aiculsamoth said:

Justjane,

I'm not trying to be antagonistic but my opinion is that you are wrong about the back room, in the sense it's purpose should be close to obsolete, except in extreme circumstances which I can't quite imagine what they might be.
If the entire Ben's network is intended to be a lets hold hands affair, why a network? What a waste of money, there are plenty of forums who cater for just that.
Does anyone who responds on this forum mean any harm? There are rules sure, break them post deleted. potentially kicked off, fairs fair. I can't see anyone extending their effort to purposely harm.
The label 'back room' has it's own bias.
Cindlou in her own post, wasn't asking to be cuddled. If she posts such, then why was anything out of place, hardly asks for censorship. As an individual she can, and indeed has made up her mind.
The back room is new, and how many people are going to refer to it when they have listened to their neuro/ surgeon with a bias of their own? If they can even find it.
In a nutshell if anything strays from the; I feel your pain, these are the meds I take, the procedure I've undergone/ intend, Ben's friends needn't bother raising money there are other forums, unless they want to be different. I realise suppport is often needed, but an alternative view is , in my opinion still support. Sure there are ways of saying it.
Case in point, collage/ autoimmune causes were recently brought up, indeed I think by modsupport. I don't think these had been previously been brought to light in any major sense, and initially in a thread. If taken seriously by members it should be of benefit to many. To distance discussion of the 'norm', from general is as good as censorship, and the norm is either hypothesis or symptomatic relief.
People are not stupid, certainly not those who have a computer and join a forum, they read something they don't like and move on.



justjane37 said:

CindyLou,

Well said. And may I just say that you are a brave and confident woman. Please keep us up to date on everything and we are always here for each other.

I agree that discussions sometimes move off topic on here and it is counter productive for our members that are seeking support. The "backroom" was created just for those types of conversations and that is where they should take place.

Jane

7

Knowledge is power, but sometimes discussions morph into something that is OT from OP’s intention in starting the thread, or which no longer shares information that is accessible to the OP. When this happens and we end up with a high-level technical medical debate (the likes of which TJ can follow but Seenie can’t) that’s when it’s appropriate to divert the conversation to the Back Room. Maybe we should have called it The Porch. It’s not censorship, it is merely relocating the discussion.
Seenie

8

I like 'The porch', but thinking about it, sounds like you could be left in the cold and not invited in, how about the Drawing Room?