How many tell others about our group?

[8338]

I just realized how often I am praising our little "family" here and was wondering how many others do it.

-Whenever I am down about not being able to do things the way I use to, I jump right on the computer to check in with this website.
-Whenever I am out with others and having to tell them about why I am like I am, I always tell them about my support group who helps me through.
-Whenever I have a question about something wierd that my body is feeling, I come here to see if anyone's posted about the same thing.
-Whenever I just can't relate to anyone else, I come here.

I've gotten others to seek out support groups online for what support they need help in because of me coming here,and they see the help it gives me.

- I know that I've said this before but thanks for being here-
Barb

[robby]

Barb,
I tell most people. If I tell them about my tumor then its followed by "theres a great online group I belong to". It is a fantastic place to come to.

[Tmasgio]

I find myself tellling a lot of people including my NS who refers patient to this site as well for assistance.

After this surgery there is not really alot of people that know exactly how you feel. I mean even if you go to rehab and and are on the Neuro floor you find most of those SCI are traumatic and then you tend to think your not so bad off.

This has and will be my therapy and focus group. I love you all.

Tony

[cindylee]

I tell just about anyone who will listen and I also mention it on my myspace page. This is a place where I feel at home. I don't feel right when I don't check in for a few days...you guys have become my family. FOr the time that I am on the board I forget all about me and what might be hurting me that day. I love all of you!!! Cindy

[tc]

This group has been wonderful for my mental health! I would feel like a hypochondriac if I didn't know that my symptoms are pretty normal for people with spinal cord tumors. This group helps me communicate with my doctors better, because I know that my symptoms are real and pretty typical for folks here. It is nice to know that I'm not crazy!
Thanks to all of you who take the time to post! It is greatly appreciated. I would be pretty sad without this group. I've met some super nice people here!
Teresa

[susan]

I emailed the link to my neurosurgeon. I hope he will take a look and share it with his future SCT patients. I hope he isn't afraid that it will scare his patients prior to surgery.
It definitely helped me afterwards, especially when I had residual symptoms. There isn't another resource that I have come across on the web that has this content. I had all these odd sensations and couldn't find ANYTHING that verified it was part of recovery from SCT. I was frantically doing repeated searches until I hit on this site. It made me feel better to know that I wasn't the only one, we have all had similar experiences. It gave me hope that if it didn't get better, I would at least be able to learn to live with it.
I also tell friends and co-workers about the site when talking about how I am doing.

[billanschell]

I plug this group heavily in the blog (http://spinalependymoma.blogspot.com/) I wrote about my spinal cord tumor experience, from pre-surgery through recovery. I hadn't found SCTA before I wrote my first entry, but edited it to be sure readers know that it's the single most valuable resource available to pre- and post-surgery SCT patients.

It's also really helped me with replying to the many people who suggest forms of therapy that are really more appropriate for people with disc problems. I just say "I'm in touch with hundreds of people in my situation through a website we share, and none of them have said that it helped them..." I always appreciate the good intentions, but people don't realize that disc problems and intramedullary tumor surgeries create completely different issues.

--Bill

--Bill

[susan]

Bill,
I have had the same issue with people who compare their disc pain with what we deal with. I have a friend & a brother who bring up their sciatic nerve pain or disc pain in response to my issues. I have bad discs in addition to my residual spinal cord tumor symptoms. Their is just no comparison. I know because I have both (my neurosurgeon told me I had the spinal column of a 70 year old, I have arthritic changes and herniated discs).
The line of reasoning seems to be "I have back pain you have neck pain, get over it". They can't imagine the severity of the pain and all of the other abnormal sensations that make it hard to function. You guys know how it feels and what has worked for you to deal with it. Thanks for being there.

And to Bill-is that your pet monkey on your shoulder or do you work with animals? He is cute!

[badtazz]

I have told people that if they can, to look on the internet for a group to help with their particular problem. No group is as supportive and knowledgable as this one is. I never compare my pain to anyone elses, as far as I know theirs is just as bad. I'm not in their body feeling what they feel, or knowing their tolerance of pain. I think eveyone feels their pain is the worst.

Jeff

[susan]

No doubt everyone thinks their pain is the worst, it is them in pain after all. Most causes of pain don't have all the goofy other symptoms to deal with at the same time, compounding the issue.
I just know that for me, this has gone on longer without significant relief than pain I have had in the past, including back pain. I think that people who haven't experienced it can't imagine that. I do think that central cord pain is different than pain from the nerves exiting your cord like in other kinds of back pain.
I haven't voluntarily minimized my friend's/brother's pain the way they have mine either. I've had problems with people telling me why my pain isn't so bad after all.
That is what I appreciate about this group, we don't do that to each other.