Avatar universal

Looking for new NS for Chiari

Hi Everyone,

I was diagnosed with Chiari in 2008 and had my decompression in 2012.
I was very pleased with my Surgeon and the Hospital staff couldn't have been kinder.
The Post Op care however wasn't at all what I expected.
Last fall I received a letter stating " I wasn't taking my Post Op care seriously  and there for I was being discharged as a Patient" The only Post Op care that was scheduled was for a Cine 3 Mo after and that was it. I had to call if I was having any problems. I have done some research on the NS who did the surgery, although he is a gret surgeon it is common practice for them to release Patients once the surgery has healed.
Now , my symptom's are getting worse and my PCP has no clue. He told me the Chiari's wasn't an issue because I had already been decompressed?
I was also diagnosed with White matter lesion's before my surgery and on a recent MRI , it said they had increased both in mass but in quantity.. My Vision is getting worse, I'm having more problems with Pressure headaches, hearing , ringing in my ears, fatigue ,vision just to list a few, I don't just want to sit back as thing's get worse !
I would Love any leads on a Chiari NS here in Co. , also I am on Disability and have Medicare/Medicaid will my insurance cover an Out of State DR?
Sorry for the long post , I am just tired of feeling so bad everyday and not knowing whats going on..
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620923 tn?1452915648

  Many Drs use antidepressants as a pain management med....it is not that they feel you are depressed.....they work great on chronic pain caused by nerve issues....

If you have EDS as you mentioned is a possibility, it would have been helpful to know b4 surgery as it can affect the outcome of this surgery.....

Many times those with EDS can also have CCI cranial cervico instability...which can worsen after decompression as the C1 and C2 are weakened with the chipping away of some of the bone to make room for the CSF to flow....so we become bobble heads....it is not only painful, but can be nauseating as well....

As I mentioned once you are healed from this surgery you will be released from care...as there is nothing more a surgeon can  do....

You need a Dr that will DX and do testing to find out what may be going on and if more surgery is needed then you go back to the NS.

The problem is there are not many Drs that 1- know Chiari and 2- Chiari related condition.

You mentioned that you had a CINE MRI and a flex/ext xray...but did you have a MRI of the cervical , thoracic and Lumbar spine?

It is possible to have syringomyelia, disk issues, tethered cord, ICP, POTS, ehlers-danlos, sleep apnea...so ALL of these need to be ruled out as well as having blood tests to check vitamin and mineral levels...
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Avatar universal
Thank You for getting back to me,

When they I was told the first time I had Chiari, it was found on the MRI..
Thank Goodness the Radiologist was familiar with it.

When I had my appointment with the Chiari NS, he did a Cine flow, Flex / Ext xray  and blood work. The Cine showed that my Pituitary gland was under so much pressure it was shriveled up and on it's side.
I went from a 5 to an 8 when they finally did Surgery.

As for the Post up follow up , I was given a paper when I was released from the hospital for my 3 month appointment and Cine.
The research I've done with other Chiarian's ( from the same NS) after decompression if they're from out of State there is a different protocol for in State client's. Most in State clients i've spoken to were as shocked as I was when they were discharged from the practice, No referral was given, the same sweet ladies that helped before surgery wouldn't give you the time of day.
I've really had a hard time since my decompression, i will have crazy episodes and at times they're worse then before surgery.

I don't have migraines , just pressure headaches , during that time my right side of my face, ear ,lips and hands go numb, ringning in my ear, right eye gets blurry and has floater's. vertigo, My heart beats crazy and i end up drenched in cold sweat. I've also started dropping weight again.

My Pain doctor was very concerned and thought i should be seen, he even called himself and they still wouldn't take me. I have a very significant past for vascular disease in my family. In fact I am the only survivor besides my kids.
I was admitted to the hospital last ,month while i was visiting my daughter and Grand kid's in AZ. They kept me in for 3 day's ! I was in so much pain it hurt to even touch the outside of my head. I had fluid in my right ear even though I hadn't gotten it wet.
When the results of the tests came back they mentioned EDS or MS.. also I am supposed to see a cardiologist soon...

We all know what happens if we pick a random NS who has no idea about Chiari's , they give us info on how to manage chronic pain and at my last appointment with PCP , i received a call from my pharmacy saying there was a script for me to pick up, It was an Anti depressant? I'M not depressed just sick..

I just want to see someone that knows about chiari and what to look for with related disorder's. I want to stay ahead of all this and not end up with even more permanent damage. I also would love to get it under control so I can get out of my house and not just go from my bed to the couch.

Thank You, Deb
Helpful - 0
620923 tn?1452915648

  Hi and welcome to the Chiari forum,

The one big issue is there is no post op care....once we healed from surgery and there are no issues the surgeon will release you as a patient...as a surgeon only operates to correct an issue....we need to find a neurologist that knows Chiari and related conditions to find post op care.

I am not sure what your letter meant  that " you were not taking your post op care seriously"...Not sure what you were to do that you had not....

My experience was a MRI at 1 yr post op and then I was released...those that have had an issue may have a MRI sooner....

White matter lesions can occur due to strong HA's....so not sure if that is something to be concerned about or not....something to ask a Dr for sure.

May I ask what testing was done b4 you had surgery and what symptoms you had?.....

Did they rule out ALL the related conditions?
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620923 tn?1452915648
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