pregnant and scared

[soulmeetsbody]

I was diagnosed with cm1 in June 2012. I had a baby in November 2011, and symptoms began at the end of my pregnancy. This was my second child and second vaginal delivery with epidural. Chalked symptoms up to hormones until panic attacks began 6 months postpartum. My symptoms that sent me to Neuro were tingling, limbs falling asleep, numb nose and throat, buzzing sensations, and feeling dizzy/off balance. I was terrified of MS. My Mri came back perfect...except for "slight" chiari. Referred to neurosurgeon who said my herniation was mild (4 mm I believe) and since headaches weren't my primary concern, surgery was not needed (I should note that I have a lifelong history of headaches, but not daily or extremely disabling). I was so relieved at not having MS that I skipped out of his office happy to remain on paxil (for my anxiety/panic) and move on. Paxil did help me (I was in a constant state of paralyzing anxiety during this time).

I became unexpectedly pregnant in March 2013. I had to go off paxil, and my symptoms came back big time. I realize I need to investigate my chiari further, but being pregnant pretty much prevents that. I feel like I am going to pass out while eating, and I get serious head pressure and sometimes headaches unless I lay back. I have digestive issues, racing heart, dizziness, anxiety, you name it. I don't even know what doctor I should talk to (Neuro, ob, gp). I am scared and practically live at my parents house while my husband is at work. I often feel close to passing out though I never have. Any advice?

As a side note, my migraine type headaches started at age 9 when I took gymnastics. I got a headache after every lesson...

[soulmeetsbody]

Pregnancy seemed to be my trigger. I felt great with my first, had a few odd symptoms (that were easily blamed on pregnancy) with my second, developed symptoms 3 months postpartum, was diagnosed, got unexpectedly pregnant again, and symptoms have been bad since 8 weeks in. I think pregnancy exacerbated my chiari and led me to my diagnosis.

[stactheacetx]

I recently had my 4th child and never had chiari symptoms until after she was born. Even now its just headaches and muscle joint pain. I have an 11mm herniation. My dr has asked me several times if I have had any trauma but I haven't. Could pregnancy be the trigger. I was diagnosed May 8 and have an appt with a chiari specialist June 3.  

[soulmeetsbody]

Thanks again! I feel so lost right now...

[selmaS]

  Depends if the NL knows about it...when I went to my NS, I saw a NP and a NL all at his office b4 I saw him...so they all work together...and that is where I got my EDS DX.

Not ALL Drs even rheumatoid Drs know how to test or feel it is needed, just like Chiari they feel u had it ur whole life it is incidental now...ugh....

But a well informed NL, NS, and rheumatoid Dr should be able to DX this for u,

[soulmeetsbody]

Who does the eds testing? Neurologist?

[selmaS]

  Then get the testing/eval for EDS...and make sure ur OBGYN understands as much as possible about ur DX.....

I know u r ambivalent of the C-Section, but they would plan it for b4 u go into labor to avoid that issue...but do find out if u have EDS as that can change thoughts on this too.....

Ask ur OBGYN about using a stool softener like Senecot....so this is not an issue for u...but I know what u mean as I was DX'd yrs ago with IBS...so...I can commiserate on that issue.  

[soulmeetsbody]

I do plan to discuss delivery with my OB, but I am very hesitant about a c section. I have quick labors (4 hours with my last baby) and he was out in 2 pushes. Sorry for the tmi, but I have had more trouble with bowel movements than I did with either labor. I am set on no epidural though.

[selmaS]

  Seems u may have some positional issues so POTS may be a possibility...the related conditions can sometimes cause us more issues then Chiari alone...and the Drs that are not specialists do not know to look at these to consider there is something that is demanding attention....

Many times a spouse or a parent will appear disinterested bcuz they feel they should be able to help or fix the problem and they can't so guilt and other issues cloud them and they are just as lost and scared as we are....

[soulmeetsbody]

Thank you! I could cry at being able to talk to someone who understands. Some days I feel like I'm dying. My husband is wonderful, but he hates talking about my health issues. I think it scares him. He has type 1 diabetes, so you would think he'd be more sympathetic :)

Oh, and my symptoms seem much worse when sitting. Standing is okay and laying down is best. Sound "normal"? Church and waiting rooms always make me feel shaky and near passing out...

[selmaS]

  Hi and welcome to the Chiari forum.

Congratulations on ur pregnancy :)

Many of us were told the Chiari DX was an incidental finding...it is the Drs that do not know or understand how Chiari affects us that say that.....Chiari is not covered  in Med school so the Drs really have no idea unless they r doing research on it or reading the research others are doing.

There is a nurse that works with a Chiari specialist that wrote articles on Pregnancy and  Chiari her name is Diane Mueller...if u google her name u will find info.

Most will suggest u have a C-section to avoid the strain of child birth which can make ur symptoms worse.

The best thing u can do for u and ur baby is try to relax as stress will make those symptoms flare.

See about being tested for some related conditions like Ehlers-Danlos as it is not a MRI or nething invasive as to affect the baby....this will help u until the baby is born and then u can proceed to meds or more testing to see how ur Chiari is affecting u.

Know that all the symptoms may be heightened as u are pregnant.

Did u have a CINE MRI yet?

I do not agree with Drs classifying a condition like Chiari as mild...as that  degrades what u r feeling and I am sure u would not agree that how u feel is mildly affected....ugh....the term should be used to describe how u r affected and not the length of the herniation as that has no bearing on how u will feel it.

Someone could have a severe 13 mm and no symptoms while someone with a 3mm feels it severely...this is y a CINE MRI is needed to see if ur herniation is causing a CSF obstruction...this will affect u more the how long it is. As it can be long, but thin...and no CSF will be blocked and a smaller or more mild herniation can be 4mm but wider and cork it all up.

I had much of the numbness u mention is my left pinky...at times it would spread to more fingers...I found much of that may be from my EDS DX.

So do research a Dr that knows a bit more, find articles on Chiari and pregnancy to share with ur OBGYN and see what they say....

Relax and try to enjoy this pregnancy...I know it is not easy...but try.

  Keep us posted on how u r doing <3

[soulmeetsbody]

Oh, and I have apparent ulnar nerve compression in BOTH arms (numb pinky  and half of ring finger). My Neuro is super nice and supportive and caring, but I only had a brain and cervical mri. Could syrinx in lower spine cause bilateral numbness? My chiari is considered an incidental finding, and I think my Neuro and neurosurgeon are taking it lightly because of lack of experience and the fact that it is mild according to the textbook definition.