stage 1 of chiari malformation does it get worse

[lollypop28]

type 1 chiari malformation, does it get worse and is it heredity?

[selmaS]

  Hi and welcome to the Chiari forum,

Medicaid should not drop u until u had coverage with ur DH's job....I was not aware they could do that.

Surgery for this condition is not a cure and many continue to have pains and issues even post op...surgery is to restore CSF flow and slow progression.

Do u know if they ruled out other related conditions?....Did a CINE MRI, a thoracic and lumbar MRI?

Related conditions u need to have ruled out is tethered cord,ICP, POTS, sleep apnea and ehlers-danlos.

One thing u may try is the clinical trials....they DX and treat at no or little cost....we do have a link to the trials....use the search this community feature.

[LaurenWelch]

I have had a fairly normal life with some mild headaches but everything changed in march. I suffered a ruptured aneurysm on march 16th and spent over a month in ICU. Since my craniotomy and clipping of aneurysm I've had horrible headaches, weakness, fatigue, memory issues, diziness, seizures, nausea sometimes with vomitting especially around time of seizures, insomnia, loss of feeling, neck pain, back pain, and all over pain really. My neurosurgeon referred me to a headache specialist who put me on the max dosages of pretty much everything and nothing has helped. I'm currently on 7 meds. He did EKGs CTs and finally sent me for an MRI and found out I have chiari malformation 1. I was then referred to another neurologist who also specialized in chiari and he spoke with me went over my mri showed me my herniation and recommended decompression. He was ready to set a date for surgery before i left his office but As soon as I told him I was dropped from Medicaid because my husband got a job he wouldn't touch me. He said I have to have Medicaid or insurance in hand. I cannot even begin to tell you the dozens of people we've contacted for help from hospital charities to voc rehab and etc... We've been fundraising for a while now. I just really don't know what else to do. I am 25 years old. I'm married and have a 4 year old boy and twin 1 year old girls. I just want my life back. I want to be the wife and mother I used to be, not the one who's hurting all the time.  Can you offer me any advice? Thanks in advance.

Lauren

[selmaS]

  Hi and welcome to the Chiari forum.

It is not easy to do ....u may want to try heat...and see if it helps....
.
What u should do b4 u decide u do not want surgery is find out how ur Chiari is affecting ur overall health....

U need to know if u have a CSF obstruction...this can make ur health issues worsen over time....

Surgery is not to rid u of all the symptoms, it is to restore CSF flow and slow progression....and that can also help some of the symptoms....

Find a true Chiari specialist and allow his/her to guide u as to the best course of action for u.

[shayblades]

If you have Chiari Malformation type 1 , what is a good way to make the neck pain go away ? I havent had surgery and dont want to have it. But i would like the neck pain to ease up a bit

[selmaS]

  Hi and welcome to the Chiari forum.

The pons /ˈpɒnz/ is part of the brainstem that links the medulla oblongata and the thalamus.

I do understand ur stress over the loss of ur job as I lost one too and I had mine for 15 yrs....

Getting disability is not easy as Chiari is not a well known condition .....so sometimes it is some of the other related conditions that may help u get disability, it can take up to 2 yrs from the time u apply.We do have a link to secrets to wining Disability.

U will want to get more testing to see if it is ur Chiari or a related condition causing ur HA's....u need to know if u have a CSF obstruction....syringomyelia, ICP, POTS, tethered cord, ehlers-danlos, sleep apnea and low levels of vitamins and minerals....and a auto immune thyroid condition.

[january_junebug]

Hi! I am new to this forum and I have read all of others posts and some were very helpful to me! I am so grateful there are places like this available! I have so many questions and this seems like the most knowledgeable place to get them!

About 6 months ago, I began having SEVERE headaches. Some of those headaches lasted up to 4 days and OTC headache and migraine meds did NOTHING! This is also when I began having constant neck pain but during my headaches, the neck pain was almost just as severe as the headaches. Shortly after the headaches began, I started having vision problems (blurred vision) and fatigue. This is when I started having to call in to my job pretty often. (A job I have had for nearly 5 years and RARELY called in sick)  A couple months ago, I began experiencing other symptoms in addition. The left side of my face would fall asleep and I would have numbness in my head (like a falling asleep feeling) And this numbness "falling asleep" happens very regularly - about 3 times a day. This affect my vision and my speech even more.

When this started to happen, I went to a Dr. and had an MRI done. MRI states I have 7mm of cerebellar tonsillar ectopia consistent with Chiari Type 1. The MRI summary goes on to say . . . "The posterior pons is somewhat small in size."   . . . What does that mean? What is posterior pons?

I lost my job about 2 weeks after the MRI due to too many recent call-ins. This all started 6 mos ago and just gets worse over time and new symptoms have arrived as well. My other question is: "Would Chiari Malformation type 1 qualify me for disability?" I am absolutely terrified about my recent financial issue! I lost a job I had for 5 years b/c of this! And my fear is trying to find a new occupation when I have so many unbearable headaches and neck pain and vision problems.  CAN YOU HELP? THANKS!