Many Opinions

My 17 year old daughter fainted on the last day of February. She may have hit her head, and after continuing fainting spells, vertigo, and nausea, she was sent for a CT Scan which showed no irregularities. Symptoms increased, and began to include blurred vision, tunnel vision, and passing numbness in her arms, hands, and legs. She was sent to a neurologist who guessed at vestibular neuritis. A full work-up by a cardiologist cleared her of any cardiology related issues. An MRI showed 10 mm Chiari, and a UC Davis neurosurgeon called for a Cinema MRI. In addition to the nausea, vertigo, blurred vision, and numbness, she began getting severe headaches, multiple fainting episodes even while lying down, and at times, her motor skills were affected so that using her hands or walking became difficult. The local neurologist said of course they should consider decompression surgery, as her symptoms were a close match for Chiari. During a bad episode, we headed to the ER and spent three days at UCD Medical Center, where they did the Cinema MRI. She was questioned extensively about the stressors in her life, and they called in a team of psychiatrists when they learned she had recently changed schools, moved to a new house, and that her parents were splitting up. Ophthalmology exams showed 20/20 vision and no problems. The Cinema MRI showed altered CSF flow as indicated by the technician, but the hospital release stated there was no altered flow. She was told to follow-up with a psychologist for counseling. A neurosurgeon at Lucille Packard Children's Hospital at Stanford stated that syncope (fainting) had nothing to do with Chiari, and he took a wait-and-see approach. He suggested she get physical therapy, and biofeedback to learn to deal with her symptoms, and to make an appointment with a psychiatrist. She was instructed to come back in a year for another MRI. At a return visit to her primary physician, I asked if she thought it was Chiari, and she said in her opinion, my daughter's symptoms were all stress related. When the local neurologist read only the neurosurgeons reports, and viewed none of the images, she reversed her position about Chiari, and said the symptoms were likely caused by migraine headaches. At a recent follow-up appointment with UCD Neurology, the doctor thought her symptoms were possibly due to Chiari, but he wanted to try treatment for migraines before going forward with decompression surgery. He prescribed Verapramil (40 mg 2x/day, a calcium channel blocker) which can cause dizziness, fainting, headache, and nausea, and Naproxen (375 mg 3x/day) which can cause nausea, vomiting, ulcers, fainting, loss of appetite, muscle weakness, and numbness of an arm or leg. I question how we will know if it is working if the side effects are the same as her symptoms? Perhaps the medication will help with headaches? She has not yet taken the prescribed medications. We got authorization for another opinion from a Neurosurgeon at Sutter Neuroscience Medical Group in Sacramento, and provided only test results. My girl was not having a good day, and was using her walker with difficulty due to impaired motor skills. This doctor performed an examination, listened attentively, had her try to walk without support, and reviewed the MRI. He stated that all of her symptoms are consistent with Chiari, and that the symptoms are ever-changing due to the pulsations of the tonsils while under pressure and the changing flow of CSF. He concluded that she is an excellent candidate for decompression surgery, and it's time she got her life back. He performs 40-50 decompression surgeries per year, and avoids entering the dura, by using a scoring technique to thin the membrane to allow it to expand, thereby greatly decreasing the risk of complications. Incidentally, he had been partners with the Lucille Packard neurologist for 12 years, and was surprised by his diagnosis, especially since he knew the man planned to retire within the next few months. He described a patient with similar symptoms, that he had just seen for a follow-up on a surgery he had performed several years ago. This patient was doing very well without continuing problems. We are now working to get insurance authorization for the decompression surgery, and trying to come to terms with that reality. If you have any advice for my daughter, or would like more information about these physicians in the Sacramento area, please contact me.

I had my decompression surgery 1 month ago. I'm 26 and have been experiencing severe headaches, tingling in the limbs, blurred vision, and some others for a while, but nothing near as severe as your daughter. My tonsils were 2.5cm long. I did a lot of research before even seeing a neurosurgeon so when I went for my first appointment I had my questions ready. The first neurosurgeon I talked to wouldn't even talk about a duroplasty as an option. He said he does not do that in his practice. This concerned me because I've been reading more and more about people who don't get the duroplasty that have to have more surgeries later on and that happens less in people who get the duroplasty. I decided on getting a second opinion that led me to a pediatric neurosurgeon at Duke in NC. She said she does the duroplasty with every decompression she does so she can see everything and make sure it's ok and as a back up. Go with your gut. After my first NS visit I cried the whole way home and when I went to get the second opinion I felt so at ease and ready to get it done.

With the symptoms she has it would be worth going through the decompression,I went through 28 years without a diagnosis.I am 9 months out and even though things are not perfect after going through this for so long it has been the answer to prayers.Your daughter deserves a chance to get better,I hope she gets the help she needs the surgery was not as bad as I expected just getting there was the nightmare,sounds like she has a good Dr.and that is what she needs.Hope all ends well for her keep us informed.

So sorry your daughter and your family are going through this, there are indeed varying opinions that make it complicated. I will ask you to do some research on the option of duraplasty. It is true that leaving the dura in place reduces the incidence of infection and CFS leak; however, there are several reasons to open the dura. Of course, creating more space for the cerebellum and brainstem is a big one, but also some people with Chiari have other issues in the foramen magnum area created by CFS hypertension and tissue crowding that can only be seen and corrected with the opening of the dura. When my dura was opened my surgeon was able to identify adhesions that bound arteries to nerves and nerves to the cerebellar tonsils, arachnoid webbing, and several neuromas. The adhesions and webbing can be clipped away to free the structures and allow more free-flowing CFS. The neuromas are also from the the congestion and hypertension. Finding a NS that that you feel at ease with is important, just be sure you understand the why and how of your surgeons style before you go ahead with the surgery. I wish your daughter the best of luck and a quick recovery so she can get her life back.
Jenn