I have lots and lots of questions and I am so glad i found this forum.
My daughter is 25 and was dx just this month Feb 2013 with Chiari 1 by neurologist.
She was previously dx with tourette's @ 9 (facial tics and gutteral throat sounds.
@ 15 they said her H/A's were migranes probably hormonally induced - they seemed to subside in college but then increased again after headon car accident @ 21 (everyone survived, praise the God he sent a person to invent air bags). She walked away apparently unscathed, but her H/A increased in intensity and frequency.
Her GP dx her with hypertension @ 24 and started her on BP meds.
H/A's increased in freqency until she passed out Christmas Shopping
I sent her to endocronologist (migranes and hormones) and a neuorolgist.
They added hypthyroidism and chiari to her diagnosis.
We are now investigating surgical intervention.
Has anyone had decompression surgery via endonasal approach (Pittsburgh University Hospitial) or does anyone have any thoughts on this approach?
Our 1st neurosurgeon appt is with Dr. Hill at Emory University Neurological Clinic.
Funny we end up where we started Dr. Wiseman @ Emory University dx her tourette's.
I believe in 2nd and 3rd opinions (Neonatal Nurse - even experts diverge in their treatments and ideas - as I keep telling my Dad - Medicine is an art rooted in science, so interpretation is everything)
PS thank you for reading my rambling. We are just starting out and there is so much to absorb.
The Endoscopic Endonasal approach is incredible. I do not have personal experience or know of anyone that has used this technique. The science behind it is remarkable. I will still think everything still hinges on the what type of Chiari your daughter has and how advanced it is. I would love to see no one go through even the basic standard Decompression surgeries. Please let us know how your daughter is doing & how we can help you or be there for you in any way and know you are already in my prayers.
My NS is the co-director of the skull base surgery center and specializes in endoscopic-endonasal skull base surgery here in Pittsburgh (University of Pgh Medical Center- aka UPMC). I wasn't a good candidate for that technique, he had to go in the back way lol. I couldn't have a higher recommendation, he is an amazing surgeon and has a great bedside manner (he's actually kind of shy lol). His name is Dr Paul Gardner. I would recommend anyone in his group.
ETA, I have no idea if they use the endonasal approach for ANY Chiari surgeries. I just know he and his group specialize in that kind of surgery in their practice. When I asked about the minimally invasive technique, I was told I wasn't a candidate. I don't know of anyone who has had endonasal Chiari decompression. I see my NS again on Tues, I can ask him if it was just me or if it is possible to have the decompression with the endonasal technique - if you would like
I've been searching the net and I'm not finding any cases where they used this approach for a Chiari decompression. I've seen where it's been used to treat basilar invagination in Chiari patients but those patients also still had to have the regular decompression to deal with the herniation.
Anyone else know of any cases where they did a Chiari decompression using the endonasal approach? It would be awesome if it can be done!
That was my first question when I started researching Chiari - can I have the endoscopic surgery done or do I have to shave my head? :)
Chiari is actually a fairly new idea - before doctors used MRIs about 20 years ago, it couldn't really be diagnosed easily. Like Dr. Ellenbogen says, "What we're finding is we don't know a lot about Chiari and the solutions are evolving." Diagnosing Chiari is new, and the endoscopic approach to surgically correcting it is even newer. It all depends on who is doing your surgery, and how they view your brain. Definitely have your daughter keep an open dialogue with her doctor. Have her use the B.R.A.I.N. technique if she doesn't understand what they're proposing (ask B- benefits, R- risks, A- alternatives, I- intuition, N- nothing... There's a discussion about it if you search the forums!).
Anyway, good luck, and if your daughter has access to a computer, have her join the group! The people here are knowledgeable and supportive. :)
Just for the record, if I am reading this correctly: In the article they are discussing the benefits of going in transnasal, instead of transoral, for odontoid process removal, not for a Chiari decompression. The odontoid process is a different area, it sounds like it is standard procedure to go in from the front because that is the most direct approach. For a Chiari malformation, the most direct approach is from the back.
Those patients mentioned in the article still have to have the Chiari herniation dealt with in a separate procedure.
(at least that is how I am reading it- hopefully Dr Trumble will be along to correct me if I am wrong lol)
There may be some confusion here. this is from the Pittsburgh web site"
When the disease is associated with ventral compression of the brainstem by some other associated anomaly such as basilar invagination, then the preferred surgical treatment at UPMC is the Endoscopic Endonasal Approach (EEA). This innovative, minimally invasive technique uses the nose and nasal cavities as natural corridors to access the malformation. EEA offers the benefits of no incisions to heal, no disfigurement to the patient, and a faster recovery time.
(Now this is me again): You CANNOT decompress a Chiari from the front. There is a little thing called your brain in the way. What you can do, is remove anterior(front) compression(basilar invagination), which is more common in the Rheumatoid population. It is exceedingly rare that an anterior decompression is preferrable to a posterior decompression and there is NO data that this actually helps Chiari patients. Now, in Chiari patients who have both anterior(front) and posterior(back) disease, this could supplement their treatment. Once you start going down this slippery slope, you are marching into fusion territory(occipito-cervical fusion).
Clearly, there are some patients in whom this operation is appropriate(and Pittsburgh is a very good center). It's just important not to get your patient populations mixed up. the Pittsburgh web site makes it clear that the bulk of their Chiaris are posterirly decompressed. the anterior approach is available for select, honestly more complicated patients.
Everyone Thank you all so much for your help. Dr. Trumble I will reread the Pittsburgh site. I have been so overwhelmed it is extremely possible I misread or skipped parts of the article. i am so very glad I found this group, to bounce off of and help clarify things. At this time we are still waiting for our first Neurosurgeon's appt. The internet can be a blessing and a curse -Giving information but unable to clarify misgivings and hilighting bad result over the good results. I will encourage my daughter to join the group.
No, we live in Atlanta, GA. We are going to Emory here in ATL and then we are hoping to get appt at UPMC. From there, she will decide what she wants to do - another consult or chose one of the already visited neurosurgeons or chose to wait.
I am a neonatal nurse here in Atl and know specialist are excellent; however, every specialist/specialty has differing ideas based on experience. I am trying to guide my daughter to experienced specialists, hoping for a good/better outcome.
I was refered to UPMC by a neurology nurse from ATL - her sister actually had the surgery (great results) here in Atl but that neurosurgeon had a hand accident and no longer does the surgery.
So per her direction I investigated UPMC and read good things.
Sounds good, I wish you luck on your quest. If you ever need anything up here in Pittsburgh, let me know. I’d be happy to help in any way I can. I have had excellent experiences with UPMC and all of the neurosurgery staff.