Chiari Malformation Community
Chiari Malformation
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This patient support community is for discussions relating to Chiari Malformation and Living with Chiari Malformation.

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Chiari Malformation

I was diagnosed with Chiari Malformation type 1 a couple of months ago. I am scheduled with Howard Reichman in Utah for the decompression surgery on Nov. 16th. I have been suffering for over 2 yrs now with the mind set that this will go away. It has been getting worse! I was rear ended at the end of July and since then, things have seem to rapidly get worse from what they have been doing. For my questions, I have been reading a lot on Chiari Malformations and am finding that this usually goes along with Syringomyelia. Does the MRI of the brain show that you have this? Should I be tested for it? Can Chiari Malformations effect your tailbone area? Mine usually flares up during pregnancy, but now it's been acting up a lot more.

I actually called my Neurosurgeon's office to tell them I'm getting worse. They scheduled me for an appointment this Wednesday. I want to be prepared with all of my questions.

Thnx!
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1823499_tn?1370093889
Necessary tests from a true chiari specialist, full spine mris, cine mri and xrays of neck. And many more before surgery. Your ns should know if u have a syrinx or not?! Is your ns a specialist?
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I don't think he's a Chiari specialist but he's done a lot of decompression surgeries and he's one of the top neurosurgeons in Utah. All that I had done was an MRI of my brain. My head feels like it's going to explode a lot of times though. I thought I was going to have an aneurysm before I knew that I had the Chiari Malformation. I am in colorado and I know dr. Oro is a Chiari Specailist, but I have no help in Colorado when I have the surgery, so that's why I was going to Utah to have family support. I'm wondering if I should maybe reconsider.
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1823499_tn?1370093889
I think as long as u trust your ns and he's done the surgery many times. Its only u who can choose a dr u r happy with. :)  u should def ask him about doung a full spine mri and a cine mri, which will let u know if there's a syrinx or csf blockage. Which the pressure in head could be from a blockage or something else. Only u know the right dr for u, don't let anyone tell u different.
My ns is dr oro, I will be there oct 18 and 19. Tho I hate flying, it makes me sick.
Just touch base with your ns and ask him about those tests.
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620923_tn?1416285879

  Hi and welcome to the Chiari forum.

  If u r asking if u should reconsider who ur NS is...I would have to put in my 2cents and say YES!! a NS that has done decompression's is a far cry from a specialist...and u want one that is well experienced.

  Not only should u be tested for syringomyelia, but ur Dr should be testing ur for tethered cord, sleep apnea, ICP, POTS, ehlers-danlos among a few others....a syrinx can form newhere in the spine and most Drs only review the cervical spine for these, when they can be in the thoracic and lumbar spine.

A brain MRI will not show a syrinx, especially if it is in the thoracic or lumbar spine,,,.....or even the cervical spine.....some brain MRI's may show  part of the cervical spine....but many times .

We do have a list of questions for the NS in the Health Pages....http://www.medhelp.org/health_pages/list?cid=186
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Thank you both for the input. I arrived in Utah just before 2am. I see the NS today at 4pm and will ask about all these tests and bring up Dr. Oro in Colorado to see what they say. I don't know if it's a long wait to get into Dr. Oro, but I'm kind of anxious to get this taken care of because of the impact that it has on me daily! It even hurts my head to raise my voice to talk to someone who is farther away, (or getting after my kids) Maybe I can get some testing done while I'm here and have all the tests sent to Dr. Oro and things can move quickly with him from there.
Sexybare, do u know if it's a long wait to see Dr. Oro? So sorry you get sick from flying! That would be hard!
Selma, thanks for your input! This info is very good to know and will bringing up these things at my appt.

Thank you both! :)
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620923_tn?1416285879

  No worries...good luck with the testing....and I do hope they r able to answer some of ur questions.....

  Just remember...surgery is not a cure or a fix, just a treatment to help slow progression and restore CSF flow....u may continue to have some symptoms post op....and it is possible to feel worse...so do make sure all related issues r ruled out b4 u consider surgery and u have the right Dr.

  Please post updates : )
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I talked to chuck at dr oros in jan and my appt was in april. It would have been sooner but I needed to make travel plans.
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So I am getting 4 different MRI's tomorrow.
Another one of the brain (they didn't realize that I had the MRI done before the accident and needs to see if it has made things worse there) and cervical, thoracic, and lumbar. I don't get the MRI's done until later on Friday and need to deliver the films to the doc on Monday. If they see anything pressing they will move the surgery date up. I'm going to try to get the reports of the findings but that may not be until Monday. I guess we just wait and see.
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1823499_tn?1370093889
Well I'm glad your getting more tests done for that will help. But really a cine flow mri is the way to tell if you have a blockage and the full spine mri will show if you have a syrinx. Those r the 2 main reasons for surgery. If you don't have neither, a specialist wouldn't reccomend surgery. This is just my opinion. I have been to both reg ns for first surgery and specialist for a secondbecause the first ns only did the bony decompression. So I had to have it redone to the fullest extent. I just want you to have the proper dxs. Update us on results. Hugs,Dana ;)
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So reading your post got me concerned. I just called my NS's office and they ended up calling radiology. They said with these MRI's that I'm having today should show if there is a blockage!?! I hope that's correct. I'm just thinking more and more that I should go to Dr. Oro. Just don't want to do the whole waiting process to be seen and then wait for surgery starting all over again. With having 3 young kids with my oldest a special needs child, it gets hard with the pain and everything that goes along with it. I will post updates after MRI's if I'm able to get reports.
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1827123_tn?1383868876
yes, you'll need to know if there is any amount of blockage. I think when it comes to our health, we all have a "gut feeling" as to what to do and when to do it. If you are feeling uncomfortable in the current situation, then I think you have already answered your own questions. IMHO, I would get a second opinion. If you feel that should be Dr. Oro, then make the call and send the films/mri and anything else he requests.  It never hurts to hear anothers opinion or approach to your health.  Then once you have additional info, make your decision.  If you choose to have surgery away from family, understand that you'll only be gone a few days. Once your released, you should return to the family in Utah for the added help. You'll need plenty of help so you can get as much rest as possible. Especially with the kids, a moms first response is to ignore our own needs and take care of theres, and this is when you really need to be able to hand those reins to another and make yourself your first priority.
If there is any blockage, you'll more than likely get a quick response from which ever Dr. you choose.  Keep us posted with the results.
Jiggle
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620923_tn?1416285879

  Do u know if the type of MRI is a CINE MRI?

Good Luck today : )
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1823499_tn?1370093889
Remember this is a major surgery and a major decision. I believe you should at least send test results to dr oro for a second opinion. This is your health we r talking about and yes your kids need u. If dr oro sees any reason for u to be seen they will let u know. I would suggest the second opinion, for I didn't for my first surgery and ended up seeking out a specialist. Now I have permanent symptoms and nerve damage. Please do this foru and your family hugs,Dana ;)
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Well I got the MRI's done and they said they were doing a cIne MRI. I am going to see if I can get the reports tomorrow. I am anxious to find out if it's more going on than the cerebellar tonsils going down and if there's more to it than that. I have decided that I'm going to see Dr. Oro for sure. I just feel better about that. Plus, my mom said that she will come to Colorado to help if she needs to.
Thank you for all your input, and hopefully I will have results tomorrow!
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Do u know the length of the herniation?
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Ok. I got the findings. My herniation was at 5 mm but now since the accident it's at 6.5 mm. I also have some other things going on but I don't understand the findings. Herniated disk I know, some sort of tumor that I think is benign. Some cysts. There is no syrinx. There is a fissure of some sort too.
I'm taking the disc of all the tests to Dr. Oro and go form there.
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620923_tn?1416285879

  Glad u got the findings....and I am sure Dr O will be able to help u sort it all out.

  Keep us posted.
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I wanted to let u all know that I am scheduled with dr. Oro's office  on nov. 26, 27, and 28th. I know that it sounds selfish, but I am on a cancellation list, and I'm hoping someone cancels. Chuck was telling me that you are usually scheduled for surgery about 2 weeks from the time you see Dr. Oro. This would put me about mid December, and I'm really not wanting to feel crappy for Chirstmas. Oh well, just hoping I feel a lot better after I recover and am able to do more of my daily things without me head feeling like it's going to explode!
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620923_tn?1416285879

  Hi....thanks for the update and  do let us know when u have a surgical date.

Good Luck with ur bump up list.....
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