So upset! CSF study came back normal?!

Question

I've dealt with 3-4 migraines weekly since December 2008. We were in a car accident,rolled 2 1/2 times and I was not seatbelted. I went through 4 back surgeries and we spent so much time with my back injuries that we never dealt with my neck. I had an MRI about a month ago and the Neurosurgeon noticed a Chiari Malformation. He had another MRI scan to check the CSF flow and that came back normal. I've had a straight migraine and bad headache with no relief for over 2 weeks. I was told to just follow up in 4 weeks because the CSF fluid study came back normal there is no need to be referred to a surgeon. I'm at the end of my rope,I have to kids to take care of and I cannot handle this horrible headache for the rest of my life?! I honestly dont understand how the fluid study could be normal with this headache being so bad and coming from my neck! I'm confused....Did this happen to anyone else? What did you do? Where are you now?  I dont know what to do

bekah0656 · Answer

Thank you Resa :) My Pain management Dr made me a referral to Dr Gilmer in lower Michigan. I will no longer be seeing this Neurologist. Its going to be a long drive but I'm looking forward to seeing a Dr that actually knows what she is doing. I will be writing a list with my symptoms and my questions as well.

Resa181 · Answer

Hi, my name is Resa.  Do you have a family Dr. involved with your treatment that can make an emergency referral for you?  That is what my family Dr. did for me after my first Neuro was not helping me.  Also sit down and make a list of all your symptoms that you are suffering from and then print out the symptom list for Chiari and take both with you to the Chiar specialist.  That will be helpful and you might even show it to your pain Dr.  Even tho I have a super family Dr., me and my husband had to be proactive in my medical treatment and continue to do so.  I hope this suggestion helps even a little, I know what it is like to think that no one is paying attention to you.

zygy2 · Answer

Just curious about the pain when you sneeze, cough or cry??? Is this cough headaches you are talking about?  My biggest problem was cough headaches and why I ended up at an NL to begin with.  They went from one here and one there to not being able to do anything without these terrible pains!  I don't even think they should be called headaches, I described them as ten seconds of a car being dropped on my head! Sometimes longer and they did create lasting headaches but I was also dealing with tons of headaches possibly migraine and also had things they thought were some type of cluster headache!  After surgery I have very few headaches and no problem with coughing, sneezing and screaming.  I could not even bend down to get things out of the dryer or pee, it all caused those pains!  My advice is just to find another Dr.  I will have to check your page to see if you have posted your MRI images, I would be curious to see them.  There are LOTS of Dr.'s that say they know what they are doing but don't really understand Chiari well enough.  There are lots of people that complain too much and create an environment where Dr's don't know who to believe and that creates problems for people feeling real pain!  You can't see a headache and that too seems to contribute to getting someone to listen.  My fist NL told me " we don't do surgery to fix headaches"  I found another Dr.  She didn't know what it was like not to be able to laugh, cry, pee, bend over, sneeze, cough, lift things, or LIVE!  If she had lived a day with my head she would have never said that to me!  Find a Dr. that listens to you!  I am sure the back issues make this so much more complicated for you.  So sorry for all you are going through!  If you find the right Dr. they will help you navigate the craziness of Chiari!  -Zygy

bekah0656 · Answer

I apologize I haven't been back on here,I have not been feeling well. 
I have not gotten anywhere with my Neurosurgeon,he refused to change meds,or refer elsewhere. I saw my Pain management Dr yesterday for an office visit and today for some injections in my spine. He is going to refer me to Dr Holly Gilmer at the Head and Spine Institute of Michigan. Praying it will not be too long of a wait. Something is wrong! There is pressure,and a lot of it! I am used to pain,I've handled it for years,and especially since 2012 since my Neurosurgeon botched my last back surgery,I'm familiar with pain. To sneeze or cough or even cry is so painful. Turning my head the wrong way. I appreciate your comments,thanks so much <3

kristy12 · Answer

No :) It's very restrictive at the cranio-cervical junction (chiari). What I mean is that even though the flow is "normal" still nerves constriction by the cerebellum tonsils can occur. Basically the cine flow study is not relevant and not acknowledged by many drs.

selmaS · Answer

Yes I agree with you....as you pointed out it is restrictive as they only view the cervical spine for an obstruction when we already know a syrinx can develop in the thoracic and lumbar spine indicating an obstruction in those areas....

kristy12 · Answer

It can still be a pure chiari causing it. This is what I meant. The flow study is set very restrictively.

selmaS · Answer

Hi...sorry to ask you questions but is your INS one that you need a referral or are you just wanting another Dr to approve it?

 As Kristy indicated above the pain you are having is indicating an issue regardless of they feel the CSF flow is not an issue at this point...there are so many  other things that can be going on....CCI, retrofelxed odontoid, a kinked brain stem...

 Finding the right Dr is key...keep pushing for answers.

kristy12 · Answer

>Did this happen to anyone else? 
Yes
>What did you do? 
Saw the right neurosurgeon
>I dont know what to do
Saw the right neurosurgeon

A negative flaw study means that it's not *that* bad to cause hydro or pressure headaches, but the neck pain can still be induced by the obstruction

Elisaandbucky · Answer

Hello again. I am sorry to hear about others' almost dismissal of your very real pain. I am not aware of where you are in the country, but I am in Charlotte, NC. My neurologist here sent me to a surgeon - not a chiari specialist - who seemed to chuckle and told me I didn't need surgery. My family is in the northeast, so my search for a specialist brought me to NewYork (chiari institute in Great Neck on Long Island). The plane fare has been a stress, but the surgeon there is operating on me on Tuesday 7/29. But when I come home I will also search for a new neurologist. I hope you find some place closer than 9 hours away. Do you think your pain management doctor will do the referral? As for wondering about the wait to be able to see a specialist, I called and called again. It is sad that people who have chronic pain are not taken more seriously. I hope my response to your post brings you a little comfort, knowing someone understands your frustration.

bekah0656 · Answer

Thank you,I just dont know what to do at this point. The Chiropractic adjustments had me to 3 migraines per week,its funny that I thought that was miserable. I've had this constant unrelenting headache and migraine since the 7th. I just dont know what to do at this point. The neurologist just said "see you in 4 weeks". No referral elsewhere,nothing. I'm trying to find Chiari specialists,I found the thread here and it looks like the closest is 9 hours away from me. I dont know how long of a wait it is to get in to see her. But I am going to have to ask my Pain management Dr to refer me to see her. I think its time to see a different Neurologist as well.

Elisaandbucky · Answer

I really can feel your frustration through the words of your post. My biggest challenge is taking care of my son, but you have 2 little ones who I can imagine need your attention no matter how you feel. I have no words of medical truth or relief to give you, but I do want to let you know that after reading your post, I am sending good karma and prayers for some relief to your challenges. Try to keep in touch because I know that I have found great comfort from the people who are part of this community.

selmaS · Answer

Hi...it is possible to be symptomatic with Chiari but no CSF obstruction....many with Chiari also have other related conditions that can cause the same HA's and symptoms.Surgery is done to restore CSF flow so if there is no obstruction there is no way surgery can be of help...BUT if you have a related condition it is possible to get relief .

 There is more testing you will want to have done....check for and rule out ALL related conditions.....

Stopping the chiropractic adjustments is the right decision, even tho I know it gave you relief....

bekah0656 · Answer

To clarify something....the reason why I've gone over 2 weeks with no reprieve is because I was going to the Chiropractor 1-2 times weekly and that was helping my migraines considerably. It was the ONLY thing that would give me relief. After my Neurologist got the MRI report,and reviewed the pictures,he stopped my Chiropractic adjustments. And now here I am with no relief,I just dont know what to do at this point.