Dr at stanford?

[mamahobbs]

I seen a docter at Stanford, felt ok about the consulation, but didn't get alot of info, and was told Surgery would be the only help for me. I am looking for anyone who has had surgery at Stanford with Dr. Dodd. I am trying to decide if I am ready for surgery and see how it went for someone at stanford and how there results are. I am diag with the Chiari Malformation type 1 with slight Sygromyelia. But The Sygromyelia is to small to operate on. I am also wondering if CM is genetic, I have three kids and wondering if I should have them checked out. The only tests I have really had is a MRI after my back surgery in Jan. The Chiari was found on pure accident, or luck depends on how you look at it. I am a otherwise healthy 29 yr old, active mom. I have heard so many conflicting stories about the surgery, I am just trying to educate myself before I make i choice. The Dr told me that it isn't urgent at this point to have surgery, but that could change, and surgery would be the ONLY treatment to have any relief from the Chiari. Please anyone in the Northern California Area that has any info, I am very thankful to have whatever advice possible. Thanks!

[selmaS]

  Hi and welcome to the Chiari forum.

I am not sure whom you are addressing your comment to, the original poster?....But this is an older thread and the member you want to ask, may no longer be an active member....

You may want to ask a question by starting a new thread....

Many of us have had this surgery some have done better post op while others continue to have issues....when were you DX'd and have you found a Chiari specialist?

[Sachiwa]

Did you ever end up having the surgery?  If so, by who and where?

[mamahobbs]

Thank you everyone! I am feeling better already. With the consulation I had I didn't know what to do. I am so thankful for you guys and this forum. I have the syrinx, but was told it wasn't a big deal. Gosh I am learning so much. Thnk you everyone!

[selmaS]

Here is the link to the thread......size of the herniation can be diff each time u have a MRI if the machine is at a diff strength, or diff slices r taken....for example...stand a pear upside down and slice it in 3rds....if u look at either side, left or right...it appears small or short...but if u look at the middle slice it appears longer...many times this can be a reason for a tonsil that appears to have shrunk or grown when in fact the slices were not the same view.


http://www.medhelp.org/posts/Chiari-Malformation/LIST-OF-CHIARI-SPECIALISTS/show/1121460

[shanmomof3]

Hi! You have already been given great advice. But the statement about "you couldn't get better than Stanford" that maybe true for some things but Chiari is a different creature altogether! For instance, the Mayo clinic is one of the best in the country for most things, but not so much for Chiari. Getting a True Chiari specialist is the absolute best thing you could do! A chiari specialist will look at the whole picture, like csf blockage, over-crowding, cervical stenosis, tethered cord, EDS, DDD, and syrinx. Instead of just looking at how much your herniation is. As for the list of drs, i will bump the thread up for you, but please research all drs. This is just a list of drs members here have used and liked, it does not necessarily mean they are chiari specialists. Blessings ~ Shannon

[Wvchiari]

Hi and welcome. Selma is correct. You need to be comfortable with your doctor. As far as the herniation goes it is not the herniation that dictates problems, it is the crowding in brain that can interrupt the csf flow which can cause the syrnix along with increased symptoms. I have seen cases of patients that have 5mm herniation and a ton of symptoms then someone like my son who has a 19mm herniation and is pretty much symptom free. Usually syrnix are slow forming (they can be formed rapidly after a trauma ) so you need to find a doctor that you trust and as with any surgery you want to weigh out the benifits vs risks. You have found a great place to read up on Chiari. I always hate to see new diagnoisis but I am glad you found us!  

[mamahobbs]

Oh and I am just learning this site, how do I search for Dr that might be on a list here? And anywhere else i could find something helpful!!

[mamahobbs]

I have alway had symptoms that I really never got any answers from dr. However i had a bad back injury and had surgery in Jan for my back, and due to the strange things going on after my back surgery the Dr asked to do a full MRI to see what may be causing this, come to find out it was CM. This was less than 24 hrs after my back surgery and a 3 1/2 hr MRI. So I have been pretty overwhelmed. I do have alot of the symptoms, but the Dr were I went said that mine didn't measure more than 6mm, or it was 6mm and that isn't an urgent matter for surgery. I dont' know what to listen to or believe.
I was thinking a 2nd opinion would be great, however I am told that since I went to Stanford and it is such a great place that I couldn't get any better than that. I am willing to travel, I traveled almost 4 hours to get to Stanford. So that isn't really an issue, however I don't travel well. It just gets really uncomfortable due to my back injury and headaches. I have three kids and trying to talk the peds to get them checked out, but it just gets really fusterating that Chiair is so unheard of and not listening to me. I am so glad to get any advice and info from anyone that is willing, this means so much to me that others will take the time out to help us confused ones!!!

[selmaS]

HI and welcome to the Chiari forum.

I am not familiar with ur Dr, and I believe that the dr should be a chiari specialist.....plus, u must be comfortable with ur dr so if u r then u should follow his advice.

Most syrinx's r too small for a stent or shunt and r just watched.

Yes, there r several studies going on to show this is genetic....and many families have multiple member's with this /these issues.

U may want to look into other drs to get a 2nd opinion....and keep a journal of ur symptoms....u said this was found by accident, do u mine sharing y u were having the MRI done?....do u have chiari symptoms?

Know u may have to travel to get to a dr, I know of one dr in CA that several members have been to, his name is listed on our list of drs thread.

SO happy to have u join our little family here, so sorry for the reason u had to seek us out.

"selma"