Doctors in Philadelphia area

[AMP1226]

I recently had an MRI during a visit to the ER for a persistent migraine (2 weeks) that was accompanied by right hand numbness.  My MRI showed a herniation of 7mm & the report listed the finding of Chiari I Malformation. The ER doctor brushed it off & simply told me I should see a specialist about my hand. I came home & did a ton of research & feel like Chiari is probably the answer to so many problems I've had throughout the past few years. I was always told I suffer from panic attacks because I get lightheadedness and unbalanced on my feet, double & blurry vision, and VERY heavy feeling arms & legs. I've always had aches in my neck, upper back area but I was diagnosed with rheumatoid arthritis as a child so any aches & pains I've experienced I've chalked up to that. And I sleep a lot... until I can't. Then I can go days with not really sleeping at all. Again, was told that was part of my "anxiety issues". I'm now working on finding a doctor who knows about Chiari & who can help me. I know I'll need more testing, but I really don't want to go to a doctor who will just tell me I'm crazy. I'm 30 & have good insurance and live in the Philadelphia area so any recommendations would be great! Thanks!!

[AMP1226]

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!

[selmaS]

  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.

[jgzlos]

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.  

[selmaS]

  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?

[jgzlos]

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.  

[selmaS]

  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.

[AMP1226]

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!

[selmaS]

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,

[AMP1226]

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!!!!

[AMP1226]

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.

[selmaS]

  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.