I am so sorry for what you and your daughter are going through. It must be frightening for you both. I can't say whether your neurologist is correct or not. Something I have learned about MS is that no one can say that MS always does just this or that. If I had a child with even possible MS I would want them seen at one of the national Pediatric MS centers of Excellence.
My spinal lesions are all spotty. They tend to coalesce or merge together later in the disease.
Here is the contact information for those centers. The first two to be named are the ones at SUNY and at San Francisco. The others are more recent. Perhaps your doctors could get a consult from one of them before you travel. Dr. Lauren Krupp is known internationally.
The nearest one to you in Texas is probably the one in Birmingham. I would try to get a conference going between her doctors there and one of these centers.
That is my main concern. These are places where the experts in pediatric MS have gathered to pool their information. Pediatric MS is so unusual that I would want specialists in that area. I hope this helps.
Sorry I didn't say how old my daughter. She is 21.
Welcome and thanks for coming our way!
I'm so sorry your daughter has to endure this. Did the Drs explain the syrinx was caused by the malformation? I'm limited in my understanding of all of it, but thought that is why the syrinx forms. From blockage somewhere, as hers was identified as the malformation.
Did the Drs decide not to operate on the malformation for any particular reason? I'm sorry for all the questioning, but it will help us to understand. Also, I'd be curious to know if the malformation and the subsequent syrinx and the disruption of it all can cause lesions. It's a long shot, but I was unable to find this in my research. I researched the causes and problems associated w/syrinx, when it was thought I had 2 that elongated through my entire c-and t-spine.
Keep us posted, sounds to me that you really need an expert center as Quix suggests. If you'd like more than what is listed, please let us know.
Shelly, Laurens Malformation is a type 1 to 2. It is not putting any presurre on her spine. It was checked again on June 30th and will be checked every 6 months. He said there was no way it was causing the syrix. And no way the syrix was causing the swelling in the spine, cause the syrix was to small for the amount of swelling that she had. When we went back to him which was on June 30th she had a MRI that morning and the syrix was almost all gone. I have asked the Nero Surgen and both her neroigist (SP) and they all say there is no way this is all related......GGRRRR I have a call into her doctor right now to ask about this being a rare form of MS. Which I am sure she has thought about. As I said we are trying to get her into the Mayo Clinic or UT Southwestern. Funny to me, MS is her doctors specialty and she is so stumped she is the one who said we needed to go to one of these places. I am so worried because of the agressiveness of it that the longer it takes to get in somewhere so much damage is being done.
How are her spirits? Is she afraid? Are the Drs working to get her into one of these 2 places on her behalf? I'll pray for speed here....
Shelly, its real hard to say if she is afraid or not. She is a very strong person to begin with. She really hasn't said a whole lot. I know in the hospital she had a really bad day one day cause she said they couldn't seem to find out what was wrong with her. Other then that like her Daddy said, it would be harder on us then it is if she wasn't handling it the way she is. And yes, her doctor is the one who sent all the info to UT Southwestern and they called today and asked Lauren to feel out a form that they emailed her and to send them her last MRI CD. As far as The Mayo Clinic, I called them and they wanted a diagnoses, cause they said they do not have a General Neroigist. And I told them well thats why her doctor wants her to come there. I have a call into her doctor to see what she can do.
Ooops, I went automatically into pediatrician mode. I should have asked her age.
I would go to the Utah Center if they have an MS Clinic. It sounds like they are right on the ball.
We have had several dissatisfied people with the Mayo Clinc and some that were happy. There can be a lot of arrogance at a big name place like the Mayo and excellent care is not guaranteed.