[Starr & Dru's Nana]

Not sure if this is the correct forum but I think it is.

My husband has spinal stenosis. He feels that having a support group to communicate with would be a great help to him in fighting this horrible condition. He's way too young to give up on life (he will be 61 next month) but he's been disabled for two years. He really thinks talking with others who have and are going through this would help. We both have looked online and have found a couple of groups but it would be great if we could find one for him locally--Paulding, Douglas or Cobb Counties. Anyone know of one? Or anyone know a spine center locally that might be able to give him some information about a group? We checked with his pain management clinic and they didn't know of any.

[Jetasmom]

just the online support groups ---

http://www.dailystre...nd-action-group

http://www.mdjunctio...spinal-stenosis

[CarolineElizabeth]

I agree with Daily Strength. They have something for everything and people who are going through it too.

And support for their families. SO, you could even get on.

This post has been edited by CarolineElizabeth: 25 May 2012 - 08:32 AM

[LisaC]

I don't know of a support group, but if your husband hasn't gone to Emory to be seen by their neurosurgical group, I HIGHLY recommend them. My dad had spinal stenosis and had it misdiagnosed as arthritis. He was sent to WellStar's neurosurgical group and was told that they wouldn't touch him because it was progressing too quickly. We saw Dr. Cawley at Emory and he was able to remove the bone spurs and stop the progression of the paralysis.

ETA: Shepherd's Spinal Center in Atlanta may also be able to give you information on support groups.

This post has been edited by LisaC: 25 May 2012 - 10:24 AM

[Riograce]

There's a smallish group on Facebook:

http://www.facebook....200245880037091

Oh, and here's a much larger one:

http://www.facebook....ps/91787446139/

This post has been edited by Riograce: 25 May 2012 - 10:50 AM

[Starr & Dru's Nana]

I checked out MD Junction and was not particularly impressed. Although the spinal stenosis group seemed a lot more knowledgeable than the other two groups I read.

I'll have him check out the other one.

Thanks!

Jetasmom, on 25 May 2012 - 08:24 AM, said:

just the online support groups ---

http://www.dailystre...nd-action-group

http://www.mdjunctio...spinal-stenosis

He has not been to Emory since the late 1970s or early 1980s when he went to the pain clinic there.

I had not even thought about Shepherd! I will check them out. Thank you for mentioning them!!!

Hubby's Medicare kicks in in September, so we expect a full work up this fall.

LisaC, on 25 May 2012 - 10:23 AM, said:

I don't know of a support group, but if your husband hasn't gone to Emory to be seen by their neurosurgical group, I HIGHLY recommend them. My dad had spinal stenosis and had it misdiagnosed as arthritis. He was sent to WellStar's neurosurgical group and was told that they wouldn't touch him because it was progressing too quickly. We saw Dr. Cawley at Emory and he was able to remove the bone spurs and stop the progression of the paralysis.

ETA: Shepherd's Spinal Center in Atlanta may also be able to give you information on support groups.

I mentioned to him that Facebook might have one or more groups and he wasn't interested. But I am! I told him he needed to find a closed group, whether it be online or on FB.

Maybe I need to go back to the old alt.med forums and check to see what's out there. I haven't been on an alt.med forum in years.

Thanks Riograce!

Riograce, on 25 May 2012 - 10:49 AM, said:

There's a smallish group on Facebook:

http://www.facebook....200245880037091

Oh, and here's a much larger one:

http://www.facebook....ps/91787446139/

[A Gipper Girl]

I'd try talking to Shepherds Spinal Clinic. I have a friend whose husband beecame paralyzed at 34 yrs old after a diving accident at Lake Allatoona. He was there for many months. They really hooked him up with some wonderful people who helped him so much with the depression and fear of it. He is now a 4 time Paralympic medalist in swimming and skiing.



I totally agree that talking to others going through similar circumstances can make all the difference. It is VERY theraputic. 90% of all therapy is simply talking it out, anyway.

[Starr & Dru's Nana]

I found the support group I was a member of to be incredibly helpful to me. They shared knowledge that I wouldn't have even known where to start looking for it.

A Gipper Girl, on 25 May 2012 - 12:41 PM, said:

I totally agree that talking to others going through similar circumstances can make all the difference. It is VERY theraputic. 90% of all therapy is simply talking it out, anyway.

[Riograce]

Starr & Dru, on 25 May 2012 - 12:27 PM, said:

... I mentioned to him that Facebook might have one or more groups and he wasn't interested. But I am! I told him he needed to find a closed group, whether it be online or on FB.

I agree about the closed group, and unfortunately both the groups I saw were *not* closed. Their admins might be willing to close them, though, if they were asked - IMO, people feel a lot freer to speak if they don't have to worry about the world seeing what they write.

I really enjoy my PH Facebook group. Much of it is venting, but I've gotten a lot of useful information there, too. I'll be starting a new kind of meds therapy in the next few weeks, and I feel a lot better about it after reading what others have to say.

[Starr & Dru's Nana]

Many of the people in the support group I was in back in the early 1990s (on Prodigy, no less) became friends. One of them was diagnosed the same day as me and started treatment the same day as me, so we compared notes after each doctor's visit and each treatment. I haven't heard from him in years but suspect that he long ago passed away. And you're right, it IS much easier to open up if you don't have to worry about what the "world" might think. Another thing about closed groups is there is far, far less "selling" of products and more information sharing.

Riograce, on 25 May 2012 - 03:54 PM, said:

I agree about the closed group, and unfortunately both the groups I saw were *not* closed. Their admins might be willing to close them, though, if they were asked - IMO, people feel a lot freer to speak if they don't have to worry about the world seeing what they write.

I really enjoy my PH Facebook group. Much of it is venting, but I've gotten a lot of useful information there, too. I'll be starting a new kind of meds therapy in the next few weeks, and I feel a lot better about it after reading what others have to say.