Mayo studies and new Peds NS

Have a child with SM/Chiari? Share issues unique to children and their caregivers.

Moderator: pmaxwell

Re: Mayo studies and new Peds NS

Postby heymom07 » Wed Nov 16, 2011 9:52 pm

Gunflint - can you tell me more about your comment. I'm new here and new with this ACM stuff. Our family doctor said for us to go to Mayo - and today I just found out our appointment. Is there a reason to avoid Mayo???
heymom07
 
Posts: 6
Joined: Tue Nov 15, 2011 9:06 pm

Re: Mayo studies and new Peds NS

Postby heymom07 » Wed Nov 16, 2011 9:55 pm

I called today and our appointment is with Dr. Wetjen.
heymom07
 
Posts: 6
Joined: Tue Nov 15, 2011 9:06 pm

Re: Mayo studies and new Peds NS

Postby gunflint » Thu Nov 17, 2011 9:19 am

When I was first diagnosed in June, (like everyone else) I searched the internet for every tidbit of info on SM. One thing that I remember was negative feedback regarding Mayo. I was surprised because I live only about 5 hours north of Rochester. I'm not great at web site searches. Maybe if you look at some of my earlier posts you'll be able to find what I'm talking about. It may have come from other sites. I can't possibly source this as I have read thousands of pages on SM.

I see that razzle has been guiding you. There is none better here and I would listen to what she says over any possible misconceptions I may have had. I couldn't see where you live but if you're close to or from Minnesota and are not happy with the clinic I can give you the name of a couple of NS's in Minneapolis that are very experienced with CM/SM. I got very lucky, as a result of searching this site I found out about the study at NIH and was excepted as a participant. I had my decompression surgery on October 13th. My syrinx didn't shrink as of a week later but that's not unusual.

This whole experience has been somewhat surreal. In April I was a mechanic with a very bad back who kept dropping things with my left had and a burning in my forearm and 100 months to go until retirement. Now I'm recovering from major surgery and battling SSDI. Sometimes I have a hard time wrapping my head around all of this.
gunflint
 
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Re: Mayo studies and new Peds NS

Postby hagiefamily » Fri Nov 18, 2011 12:52 pm

My daughter has only CM1 and we have had great care up at the Mayo with Dr Wetjen and I do trust him and the others we have seen there. We have had a bad experience at the U of I with another Dr and switched up there. You need to do what is best your your own personal situation.

Mom in Iowa
hagiefamily
 
Posts: 21
Joined: Wed Feb 09, 2011 12:20 pm

Re: Mayo studies and new Peds NS

Postby gunflint » Fri Nov 18, 2011 3:35 pm

Absolutely, and I wish your daughter and your family the best.
gunflint
 
Posts: 266
Joined: Tue Jun 14, 2011 8:10 am
Location: Duluth Mn

Previous

Return to Pediatrics

Who is online

Users browsing this forum: No registered users and 4 guests

cron