Cervical instability and autonomic/neuro symptoms

[DizzyGirls]

Due to craniocervical instability and, well, complete cervical instability, my daughter is going to undergo a spinal fusion from her occiput to T5.  We have found a great pediatric neurosurgeon, who also makes exceptions for adults, at Stanford, Dr. Grant.  We are sincerely hoping that this will greatly improve her vertigo that she has been dealing with for 9 years (hence my username!) and a good chunk of all the strange neurological symptoms as well as some of her autonomic issues.  It has taken us a very long time to put all the pieces together, so much so that I believe it ended up being a bigger fusion than needed to be if it would have been caught early on.  Dr. Grant asked who the doctor was that put all the pieces together, as her MRI alone wasn't remarkable enough for an untrained doctor to think that all of the symptoms would be taking place.  I told him that it was her PCP.  He raised his eyebrows and commented "smart man".  I said yes.  But it was all my harping on him about Ehlers Danlos and Dysautonomia that finally led him to actually look those things up.  He calls me on a Sunday morning a few months ago and says, I think she's got Chiari malformation!  I'm like, duh.  Well, as Dr. Grant said, it didn't end up being Chiari, but all the symptoms pointed toward Chiari and a syndrome called Cervical Medullary Syndrome.  So, in my daughters case it ended up being cervical instability.  Including but not limited to the atlanto-axial junction, clivo-axial, and kyphosis of her cervical area (C4&5 are bad!).  I guess the moral of this update is to always research, be prepared, and keep on those doctors.  Doesn't have to be a rock-star of a neurologist, etc. to figure this all out.  I will be here hit and miss the next few months as we prepare and go through her surgery and recovery.  Please keep her in your thoughts and prayers.  Thank you all for your support!

[Tara B]

Good luck to your daughter, she is lucky she has you to navigate thru a difficult medical system.  Please let us know how she does.  Sounds like a long journey to find C-spine instability as a cause of vertigo.  Does she also have nystagmus on head turn?   

I can share with you a similar case a friend of mine just travelled all over for answers for:   she is in her 50's with EDS, vertigo and a lot of autonomic symptoms.  She thought she had POTS but didn't quite meet the criteria.  She finally had a lumbar fusion, they thought her lumbar was unstable and contributing to her symptoms...but it turned out it didn't help her.  She continued to have vertigo and went everywhere looking for answers, including Stanford...I don't think she saw Dr Grant, however.  Finally they somehow realized that the vertigo was really due to an inner ear problem and not POTS and she needed ear surgery.  They also decided that a lot of her POTS-like symptoms were due to deconditioning,  because she had been in bed for so long...but her vertigo may have developed after her back surgery...from lying in bed so long ...I'm not sure on this....but gradual physical therapy was the answer.  Anyway, I know you are on top of all of this but just wanted to share with you what sounds like a similar presentation so you can be aware of any future issues.  

[Debbie Rose]

Dizzy Girls,

  Did your daughter have the surgery?? I was curious if they found more when they went in?  And was the MRI  a standing MRI ? I have been reading alot since I read your comments on cranio-cervical instability and alot of people mention that Chiari is less likely seen in typical laying down MRI, yet it is very evident on a standing one...Just a thought

I ruptured 2 discs in my neck C-3 and C-4 way back in the mid 1980's and I think that was the trigger for my issues. Also there was an OPRAH show back in the 90's talking about Chiari and I had a MRI done then, but laying down, and it was negative. But I wake up with a headache in the occipital area every morning which may fade on some days or get worse thru-out the day. And they talk about the "bobble-head feeling" and I can attest to this feeling too. Alot of the symptoms of Chiari match POTS (I have the cousin-NCS) and so it is hard to say. I also think I have a mild EDS (if that is possible)

I would love to hear how your daughter did

Debbie