Chiari Malformation Community
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549269 tn?1236130637

Hello All! I am 4 weeks post op!!!

The past 4 months have been insane and I have only been on here a few months because I have been unable to get online consistantly because I was in and out of hospitals.  

Quick recap.  I discovered my Chiari on September 5th, 2008.  It was confirmed the following Monday by my PCP and then Sept 18th by a neurosurgeon.  The neurosurgeon did not want to do surgery because my case was more complex than what he had handled and wanted to wait and do more tests and yada yada yada.  

I went to the Mayo Clinic which was a COMPLETE AND TOTAL WASTE OF TIME with the exception of the endocrinologist that I saw.  I highly suggest that people with Chiari steer clear of Mayo.  I had to go for other reasons, to rule other things out.

I saw Dr Oro in Aurora, Colorado on January 12.  He did tests January 13th and January 14th talked to me about them.  My symptoms were quite severe.  I had nearly everyone imaginable and also had drop attacks (legs would stop working for no reason) and seizure like episodes (cerebellar ataxia/cerebellar fits).  The initial MRI showed a 1mm herniation but when they did one while i was sitting up it increased to 3mm herniation.  My CINE flow study showed slightly decreased flow but "essentially normal".  

So, lots of doctors would have continued to ignore me and my 31 horrid symptoms because the studies said it wasn't "that bad".  Dr Oro scheduled surgery that day for February 3rd.  When he did the surgery he said that things were much worse than the studies showed and I have some nerve damage from the severe compression.  Hopefully physical therapy will help with it.  They have also given me a TENS unit to use at home for the muscle pain and tension.

But I am absolutely elated to say that 4 weeks post surgery at least half of my symptoms are completely gone.  I have not had a seizure or twitch or fall at all.  My memory is improving and everything is looking up.  I started physical therapy yesterday and hopefully by May I will be "normal".

So, I am back.  I will be around more to share my experiences and talk about Chiari.  I am planning on starting a group here in Nebraska for Chiarians so if anyone is from NE let me know.

I hope everyone is have a pain free (or less painful than usual) day.

4 weeks post PFD
7 Responses
Avatar universal
I didn't know they could perform mri's sitting up. I am new at understanding of the procedures that can be done.how did they know to do that type of mri?  I happy for you that you are doing better.

555358 tn?1292532061
aiMelissa, Welcome to the Zipperhead club!
I'm glad you had/are having a good experiance. Please stick around on these boards. So often people only see the negatives.

jen3boys, Yes there is a type of MRI called Upright MRI or Fonar Upright. Check with your Dr and see if they have one in your town.
620923 tn?1452915648
Welcome Back Melissa!! Glad to hear u r doing so well.
Dr Oro is a very good choice of chiari drs...u had one of the best!!

As Shane said u r now part of the Zipperheads here...add ur name to the thread!!

We all look forward to ur updates and ne info u may have to share with those of us still facing the possibility of surgery.

Avatar universal
I am glad to hear that you are doing so well. I'm 9wks post-op and doing well also. I still
have some arm pain but it is improving. I hope that you continue to do well.

570413 tn?1299532661
Hey, Melissa!  

It's great to see your smiling face around MedHelp forums again.  And to read of your improvements.  

I pray that you just continue to improve every day.  Remember, think of full recovery in terms of a year at least.  It just takes time to undo all of the damage that having a compressed brain can do.

679866 tn?1240005366
This is such good news to me. Thanks for your story Melissa. Of course though, you had our famous and much sought after Dr Oro - no chance of me finding him here in Australia! I just have a neurosurgen - so am hoping that my surgery goes as well as yours. May you continue to improve and feel better everyday.
x Sue
759386 tn?1324562124
I live in Belevue - Omaha and would think that it would be a great thing; I know of another person for sure and we have meet and chatted several times on the phone and e-mails back and forth.

I sent all my stuff to Dr. Oro and he said that the doc s at the Neb. Med. Center are doing all the right things for now.  He would do nothing different - I do not have things quite as bad at this time as you prior to your surgery...

Sounds like things are going fgreat for you - that is AWSOME!!!!
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