Does ur dr have to be at Vanderbuilt?...There is a dr listed on out thread that is in Nashville.....Dr Hamp....not sure on the spelling...see the list of chiari specialists....BUT please research all drs to find the one right for u.
We have several members that have had their chiari surgery by this dr in TN.....and I am sure one may offer info on him.
I am happy to welcome u to our little family here , but sorry for the reason u had to seek us out.
My son had Chiari surgery in 2010. Over 2011 headaches slowly came back and as we entered 2012 they became debilitating. We've been told ALL Chiari patients also have some sort of heart defect (my son has a VSD). Dr.'s believe headaches are related to VSD, not getting enough oxygenated blood to his brain. Anyone have any info. On this?
Not sure who told u that, but it is not true, I had my heart checked out b4 I had my surgery and I do not have ne heart issues....
What they may have meant and said incorrectly is many with Chiari may have related conditions like POTS, or Ehlers-danlos* and some of these other conditions may affect the heart...with EDS* there are several types one being vascular and it can affect the heart....mitral valve prolapse I believe is what it is called...POTS is an Autonomic Dysfunction u may have blood that pools in the extremities, Raynauds Phenomenon, BP issues, heart rate issues....
But not all with Chiari have these issues.
VSD is an acyanotic congenital heart defect, aka a Left-to-right shunt, so there are no signs of cyanosis.
Cyanosis is the appearance of a blue or purple coloration of the skin or mucous membranes due to the tissues near the skin surface being low on oxygen.
Pansystolic (Holosystolic) murmur (depending upon the size of the defect) +/- palpable thrill (palpable turbulence of blood flow). Heart sounds are normal. Larger VSDs may cause a parasternal heave, a displaced apex beat (the palpable heartbeat moves laterally over time, as the heart enlarges). An infant with a large VSD will fail to thrive and become sweaty and tachypnoeic (breathe faster) with feeds.
CAUSES: The cause of VSD ( ventricular septal defect) includes the incomplete looping of the heart during days 24-28 of development.
My mother had Dr. Cheng at Vanderbilt do a decompression surgery in November of '07. He was very good and did four others that day. She had a very good result from her surgery. She had a 9 mm chairi herniation with a 154 mm srynix. Because she was missed diagnosed for so long she had some perminate damage to the spinal cord, but a lot of her symptoms are relieved. I now have been diagnosed and am trying to find a doctor to do the surgery. If Nashville weren't so far away, I would have him do my surgery.
May I ask where u live, what area? Do use the list in the Health Pages to research Drs possibly in ur area.....many of us od have to travel to get to a good Dr, so if u know of one, that is where u may want to travel to, as long as he works with ur ins.
I have a 16 year old grandson with Chiri , he is in need of a good neuro surgen. He had a decompression 2 years ago in Knox, Tn. The dr said he cured him! He is having symptoms again & the dr who did the first decompression says there is no problem because he was cured! In need of help. Any info helpful, thanks, Dianne
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