Recurrence of symptoms after surgery?

[topherlee80]

I had a laminectomy performed down to the dura but my surgical notes do not mention anything about an opening of the dura or a shunt.  I’ve recently had a bad resurgence of headaches, they’re aggravated by bending/stooping over and especially by laughing.  
My general doctor doesn’t think they’re related to my Chiari as its bee decompressed and referred me to a neurologist. The neurologist I’ve been to see says they’re migraines but did agree to do a MRI to rule out the chance they’re related to my Chiari.  He said my MRI results “are normal for someone with my condition” and I’ve been treating them for migraines.  I kind of disagree and am going to see a neurosurgeon this coming week as my headaches have been going on for months and have not responded to any of the treatments the neurologist have given.
Have any of you had multiple surgeries for your Chiair or what has your experience been? Recurrent symptoms after an extended period of time? For the most part, I’ve been symptom free for the better part of 10 years.  Prior to my surgery, I was having extreme and frequent headaches, and experienced a few seizures.

[selmaS]

That is what I would have expected her to say//BUT make sure EDS is ruled out before going forward, since dura patches can also cause issues post op if you have EDS......and many do ont hink they have it so are not tested and many times they do have it.....so get tested and rule it out.

[selmaS]

Hi and welcome to the Chiari forum.

Luckily for me, I  have only had one surgery, but my dura was opened....when they open the dura it is considered to be a more invasive procedure....when iit is not opened it is less invasive and many Drs that are not true Chiari specialists tend to go this route and many that  have had the less invasive procedure do go on to a second surgery.
It is VERY important that you find a true Chiari specialist as most Drs will not work on you since your brain and spine are no longer virgins....meaning you have had surgery....a true Chiari specialist will help you.

[topherlee80]

Thanks for the response.

We will see what she has to say. Her website says she has experience with chairi.

I wanted a referral to UT Southwestern’s Chairi center but they will not see me without a referral even though my insurance does not.

[selmaS]

Do you have an MRI that indicates /shows your Chiari? If  so, sending a copy may help  as many want to know for sure you have it since that is all they treat. Not sure about the Dr you are looking at...but many do want to see your medical records before they will consider giving you an appointment.

[topherlee80]

Yes, I have the original MRI from 10+ years ago and I have the MRI from last month; however, they still will not accept me without a referral.

We will see what the neurosurgeon’s opinion on Monday is, what type of experience she has, and if she isn’t comfortable treating, I’m just going to flat out ask her for the referral to UT Southwestern.

[selmaS]

Who do they want the referral from? it seems odd.....as they have a NL  most times they work with and can do a work up to see if they can help you.....

Good luck Monday and keep us posted on how it goes.

[topherlee80]

She was totally confused why previous NS did not open and patch dura. She feels the decompression was only partially and is likely the cause for the headaches.

She thinks the headaches are either due to partial decompression or development of scar tissue between my dura and muscle, she ordered a CT to see exactly what all previous NS has done but thinks that the best course is likely to open/patch the dura or to take a wait and see on the symptoms and see what I can live with and what I cannot.