Let me start by saying I hope everyone is feeling well today!
I am new to the forum and still new on learning about chiari. I apologize in advance if I mispell anything. I have been diagnosed with Chiari type 1 for a year now. My neurologist found it incedentaly on a brain mri and instantly dismissed that any of my symptoms were related to it, calling it a "type of migrain"
My herniation is 7mm on the right & 3mm on the left with no seen csf blockage. After the intense back of head pressure and neck pain persisted I got my Rheumatologist to order a mri of the cervical spine last week to make sure I didn't have a syrinx.
I just got the report today for the cervical MRI with a few findings and had a few questions about if anyone has similar findings and if they believe it is related to Chiari Malformation.
I have a mild reversal of the normal cervical lordosis and a small focal disc protrusion at C5-C6 midline which causes mild thecal sac indentation. I have heard disc protrusion is a normal part of aging but wasnt sure if in my case the cervical protrusion and lordosis is linked to the chiari being a risk factor?
I would love any advice and to know if anyone has had similar symptoms related with any of these findings. I see my doctor next week and a neurosurgeon in April to discuss everything.. I wanted to make sure I was fully prepared on understanding chiari.
I haven't been in a vehicle accident which led me wondering the cause of lordosis. I also have a condition called Ehlers-Danlos syndrome and thought maybe hyper mobility could have played a roll.
I have been to physical therapy which seemed to help posture temporarily but not the pressure in the lower back of my head.
I thought my doctor would have ordered a whole spinal MRI and was a little disappointed that it was only cervical. I was a tad worried a syrinx could be in the lower thoracic and lumbar region maybe they will order me a different one next year.
Maddie, u can also get lordosis or soldiers neck from the way u hold ur self..such as one in the military they tend to have this issue from standing at attention and holding there heads the way they do.....hence the name soldiers neck.
It is very possible the EDS is playing a role...I also have EDS and had whip lash , and reversal of the cervical lordosis....mine was corrected with PT long b4 I knew I had chiari....and it is not 100%, but much better than it was and I felt soooooooo much better.
U have to work on the muscles in the shoulder area to get them to return to the proper position and it will allow the lordosis to somewhat return as well......
Symptoms of a syrinx all depend on where the syrinx is located in the spine....
Hello and welcome! First of all it is not uncommon for NL's to dismiss CM as a "no big deal". Did they do a Cine MRI to determine that there was no blockage? Have you had an MRI in the last year? Having a cervical spine MRI is only part of it if you are trying to rule out a syrinx. They do most commonly occur there but they can occur in the thoracic or lumbar spine. Some of the members here do have them.
DDD is common with Chiari. I have it as well. My cervical MRI reads about like yours. The NS that you are seeing is he a Chiari specialist? There is a difference between a NS who occasionally sees CM and a NS who devotes his practice to this disease. If not then I would make an appt with one. It will save you alot of stress and frustration. You will see the difference when you dont have to try to validate that your symptoms are caused by Chiari. When I saw mine he said I was like 99% of his other patients. You dont get that with a doc who doesnt specialize...instead you have to try to prove that CM is the reason for and not migraine or something else....or better yet they just dont know how it relates. I have been there too. There is a list here in the forum of docs other members have used and liked. It is meant as a suggestion not as a referral. Please check out any docs you may decide to see. Be aware you may have to travel.
Again, welcome! I hope you find the support and answers you need here.
My Cervical MRI was about 2-3 weeks ago exactly a year from my brain MRI. I figured the NS I am seeing in a couple months may not have much to tell me since he does not specialize in CM so I decided to make another appointment for a second opinion.
A few days ago I was able to make an appointment with Dr. Green a chiari specialist in Miami. I figured it would be best to get a second opinion. The only thing is I wasn't expecting to get into him before my other NS appointment and I did!!
That was great news, but I'm a bit scared about the contrast with the cine MRI. I'm allergic to Iodine and almost anything that enters my veins. In a post I wrote earlier today. Im having second thoughts with whether I should make the long trip to Miami. My husband and I are both worried about possible side affects from contrast, cost and the ultimate decision I may have to face on whether I need or am offered surgery. I think my husband is as scared as me with thinking about all of this.
Im going to read up more on DDD also I heard somewhere the link between ddd & chiari. I will def. bring that up to my doctor tomorrow. Im thinking this bad neck pain is a mixture of EDS, Chiari, and the slipped disc. Now to get my doctors to listen to me..lol
Hi...if u r allergic to the contrast they will use one that does not have the same ingredients or not use it at all....a DR will ask if u can tolerate the contrast bcuz of reactions to them.
Next- get info on if u have a CSF obstruction...just having a cervical spine MRI will not rule out a syrinx as they have been found in the thoracic and the lumbar spine.
DDD is part of the natural aging process...everyone will experience it...only we as chiarians deal with it a tad sooner and on a diff scale.Plus since u have EDS, u may have a bit more issues with DDD.
Having a true chiari specialist is much better than a big named facility.....but this is ur choice, u have to be comfortable with the dr u see.
To make a choice to have surgery or not should be based on how it is affecting ur overall health and ur quality of life and what ur dr feels will best suit u.
I'm in Florida too! I live in SW florida. I went all the way to Baltimore to see a Dr. who I knew already instead of driving to Miami. I've heard there's another specialist in Gainsville too. I also have hyper-mobility and some bulging discs and some arthritis in my neck from whiplash from a MVA. I too think my pain is a combination of everything.
I will def call and ask about the contrast again. No one really explained much to me about the tests I need done so I will make sure I get a thorough answer until I'm comfortable with what they tell me over the phone.
I will put off thinking about surgery for now until I get a few more opinions. I'm glad I found this forum. All of you have been wonderful and such a huge help on helping me to better understand what we deal with.
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