The name of the doctor I saw was Farrell. He was very nice, just not helpful at all!! Good luck with your appointment though...hopefully it will be better for you!
Ouch....A frame?....I imagine that is similar if not the same as the halo....
How long were u on the OR table that the Dr feels it is from that...goodness....
There are conditions and issues many develop post op as well....this is y I asked if u had the testing, as many NS will rule out non related conditions that have similar symptoms....but not all know to look for related conditions.
Hi, yes they did rule out other conditions before my surgery. I went through 4 months of a boat load of testing before settling on surgery. I did not have a syrinx and I honestly can't remember if there was CSF obstruction as I have a lot of issues with my memory now. I did have my C1 removed & part of C2&3. They placed a Bovine Graph to "protect" the opening somewhat. There was a "complication" in which the A Frame was not properly secured to my scull & when they went to turn me over onto the OR table it sliced my head wide open & it required an additional 15 staples. I came out of it feeling much better pre surgery symptom wise however I have had limited use of my left arm since. My surgeon claims that it is burcitise from being strapped to the table for so long. I had no problems with it before I went in. I have had seriously increasing issues with it lately & was finally approved for an MRI which showed a lot of disc degeneration, bulging disc, as well as herniated discs. I have 2 (c6-7) I believe that are pressing on my spinal cord which is why I am now on the hunt for a new neurosurgeon. I can not travel to NY to the CI.
Hi and welcome to the Chiari forum.
I am not far from Philly and tried locating a Chiari specialist down there was not able to so I went to NY to TCI.....
May I ask, did they rule out related conditions b4 ur original decompression? Did u have a syrinx or a CSF obstruction?
And what all was done? Do u know if u had a dura plasty? Lamenectomy?
May I ask which Dr you saw at Jefferson? I have an appointment there next month and want to be prepared. I had a Chiari Decompression surgery 7 years ago and I am experiencing some issues of late that require me to return to a neurosurgeon but I will not return to my original one at Hosp of Univ of Pa.
Yup and u know when u find a Dr further away u can justify that by saying well I did try.....
I really feel those that try to push symptoms onto other conditions instead of admitting there is an elephant in the room....or a zebra ...they are always looking for horses and they only listen for the hoof beats instead of actually looking. So, the hoof beats could be a horse, but can also be a zebra.
That said, keep pushing for answers and see where it leads u and ur DD.
ThAnk you! I wasn't overly disappointed because of everything I've read. I went in knowing this outcome was fairly typical, in fact I almost laughed when he was giving me the list of diagnoses for my symptoms! Although clearly Chiari causes all of my symptoms & MRI shows the clear herniation, it made much more sense to him to give me a list of other medical issues! But like you said, at least I can now say I tried a NS in the area!
Sometimes we have to go thru the motions regardless of what someone else says so we know for sure we tried all we could...so I do not blame u, but I hope u were not as disappointed as I was.
They just do not understand this condition and how it can and does affect us.
Keep us posted on what u hear from TCI,
So against your best advice, I saw a neurosurgeon from Jefferson. He was a very nice doctor... just not very helpful! He said I absolutely have Chiari Malformation. My herniation is 9mm. But he just doesn't think it's what is causing my symptoms. The headache is from tension & stress, the hand numbness is Carpal Tunnel, & the vertigo and difficulty thinking (I call it my foggieness) is from anxiety. So he wants me to wait a year & have a follow-up MRI. :( I asked him what to do about the near constant headaches I've been having... his answer was to de-stress & relax. Right. Well in the mean time I've missed more work in the past three weeks then in the past three years! & I don't care if my symptoms seem "sudden" to him. I've been having them for years just not as severe. Which I explained to him!!! Okay, rant over. I'm going to download the paperwork for the Chiari Institute now & try to get an appointment with them!!!!
Thank you for the reply. I was worried that there wouldn't be a doctor in the area. I sent you a requests that I can PM you to get more information on your experience with Philly doctors! I'm currently waiting to hear back from U of Penn to see if one of their Neurosurgeons has decided to see me. I ha to forward them my MRI results which they have to review before they decide to see me. The appointment Secretary told me they "are very busy & can't see everyone", which obviously left a bad taste in my mouth. I also am waiting to hear back from Jefferson. But now I'm going to check out the Chiari institute in NY. I don't want to waste time finding a good doctor when I could be getting answers.
Hi and welcome to the Chiari forum,
I am approx an hour and a half north west of Philly and went down there and sorry I can not really say u have neone there I would suggest on the forum,. U can PM(private message) me for details.
I went to NYC...Great Neck on Long Island to be exact...and it was the best thing for me....I would suggest u look at our list of Drs and use it to research Drs while u educate urself so u will know when u found the right Dr for u and having the right Dr is key....they need to know ALL the related conditions and rule them out as well as non related as they can affect how u feel and heal should surgery be the option for u.