Chiari - Suggestions / Next Steps

[Bobbigirl1]

Hello,

Here's my back story:
I"m a 33 female, and in August I went to my family doctor for a yearly physical as suggested by my chiro. When I got an adjustment  i would become short of breath, and get hot flashes and dizzy.  My family doctor thought I had MS, and sent me to an NS.  Along with sending me to urologist for incontinence.  My NS said I did not have MS and do try PT , and see him two months. Well Two months past and PT did not help.  I had a follow up appointment with my family doctor last week.  In our meeting I told her that my pelvic floor specialist believes I have Chiara.  So on Monday they did an MRI and today they came back saying everything is normal.

headaches
pain in bottom of skull, top of neck, some times it feel like my head wants to burst
nausea
dizzy with vertigo
slurred speech or messing up sentences when talking, reversing words
forgetfulness
tingles in feet and arms ( even when walking)
pains in legs
tightness in chest, specially when taking a deep breathe. I easily get short winded, even in talking at times.

Any suggestions on what I should do next?

[selmaS]

  There r a few Chiari Drs in TX....and  if there is one thing I have learned about Chiari it is NOT rare, but Drs that r well informed about it are.

Do look at our list for Drs in TX and use the list to research the Drs the list is not a referral and not all may be true Chiari specialists, but they did treat a member here successfully.

I like the way u think : )

[Bobbigirl1]

My neurologist is not a Chiari specialist. My doctor sent me to him, when she first thought it was MS.   I saw him in October, he says "get the needle in the neck, if it does not work, come back. I know we are looking at something more rare"  I was just thinking  "well why dont' we look into things instead of sticking my body with meds to numb the pain, I want the answers" but i was too scared to say anything.

I'm doing some research to see if there is one in Texas.
Thank yoU!

[selmaS]

  I know it is possible to have both Chiari and MS, but there r more Drs that feel Chiari could not cause symptoms and will try to pigeon hole it....they will rather call it MS then Chiari for some reason....but as I said it is possible to have both, but if u do not have demylation u do not have MS....

The CINE MRI will help see if u have an obstruction...

R u seeing a Chiari specialist?  

[Bobbigirl1]

I have my brian MRI.  They have not seen any marks on my MRI.  the doctor said that there is only one part of my back that they have not MRI/ Xray yet. I'm wondering why we have not looked at that area yet.   My doctor did say"you could still have MS and not have the scars show up on your scans, it rare but you could still have it".
Its comments like this that confuse me.  

The report said nothing, I did not have a CINE MRI.  Should I ask for one?

My doctor is moving at the end of the month,so I do have a get a new one.

[selmaS]

  Many times Chiari can be misdx'd as MS since the symptoms r similar, but with MS they should see Demylation...a LP is done to confirm the demylation and see if there r "rings or bands " in the CSF...

If a LP is done and not done right it can cause more issues for those with Chiari...so it is not something u should readily have done unless it is to dx and or treat ICP.

Have u posted pics of ur MRI? DO u have a copy of the report? Did u have a CINE MRI?- Rule out related conditions?

[Bobbigirl1]

I had another neurologist( I sent to Dr. Oro) look at my MRI of my brian. He said no Chiari!  good news right!?  Well I'm not sure what the next step is.  A friend of mine with Chiari mentioned that i should have a cervical MRI to confirm.

The last time I saw my family doctor, she said it could be MS (which sees been saying since day 1) or Chiari. When the MRI can back good. Her nurse called me to tell me and when I asked what the next step, they suggested I get a needle in my neck. But its not my neck that is hurting, its the base of the skull, some times the neck is but that's if i'm have a bad day/ flare up.

Thoughts?

[Bobbigirl1]

My family doctor sent me to a urologist. We found out that my bladder was not empty,
I was not getting the sensation to go, and when I do.. its an urgent have to go now kinda felling, and that I have a high pelvic floor resting
tone.  To help manage that I started to see the pelvic floor specialist. She
works in the same office as my urologist.   14 visit later, and i'm finally starting to contract.  My muscle would not contract before. So this is a big win, small steps = big rewards!
I've not heard of CHOP before. I do get really bad pains in my right side by
my hip and lower, it does hurt alot and can stop you if you are walking or
curl over. I was told that i get this cause my muscles are shorten because I
cross my right leg over my left leg.  So now I try not to cross my leg or cross at the ankles.

I hope that this helps.

[Viva001]

What is the pelvic floor specialist called?

I have had sever spasms in that area, Very painful!; a friend who also had them called it CHOP:  charlie horse of the privates.

[selmaS]

  LMAO....deff do not want to do that...lol...

[Bobbigirl1]

I hope to have answers soon.  If my pelvic floor specialist hunch was right, I just might have to hug her... but not squeeze too tight.. I don't want to pee my pants!  :)

[Bobbigirl1]

I'm going to call Dr. Oro office tomorrow to see if I can send me scans to them to review.

Thanks you for your support. I appreciate it Until I found out about Chiari and found this site.. I felt like i was crazy with my list of issues.. Now i feel like im not the only one and that there is an answer

[selmaS]

  No, I left that job right when that happened....my DD was very small age 5 and she will be 28 next week...so, it was a long time ago..lol...

Well breathing issues can be Chiari too, many of us do have issues with breathing so much so that we r encouraged to have sleep studies done for sleep apnea....

[Bobbigirl1]

awe.. thats horrible. I'm sorry you had to deal with that. I hope you are no longer in that environment.

I don't think i had an exposure to stuff.  The breathing problems started when  I started to have other issues like incontinance.

[selmaS]

  Yrs ago I was dx'd with restrictive lung disease and had a puffer too....kind of odd now that u mention ur issue, but I did have an over exposure to pesticides at work.....my boss was an idiot and caused it....and I had no way to fight that  one ugh,....

[Bobbigirl1]

I'm nervous about the shots.
I've told my doc and NS that i don't always get headaches when I have the pain in the base of my skull. Its about a 75% of the time.

Today was a tough day. My head  is getting tingley, its mainly on the middle  right side on the back of the head, and I since I now have Asthma ( that's what my doctor thinks and gave me a puffer for it) I had an asthma attack after walking up a flight of stairs at work.   Its embarrassing as this happened in a meeting

[selmaS]

  Shots in the neck are not always a good idea as they can hit ur herniation.,... unless it is being done by ur NS or someone well informed about Chiari and what u have going on.....JMHO

[Bobbigirl1]

My family doctor called me today and recommended that I get a shot in my neck and to see a pain doctor.
Any one ever have the them?  

I've called my NS, waiting for him to call me back.

[Bobbigirl1]

Thank you for that information

[selmaS]

  They do MRI's of ur complete spine and a CINE MRI to check CSF flow....if MS was ruled out then u have no worries there, same with Lymes and lupus...that is blood work....with thyroid, many only look @ TSH and u need them to also look @ free T3 and free T4 and TPO antibodies....as we r prone to autoimmune thyroid issues and also connective tissue disorders....

With all the MRI's they will rule out a syrinx in all area's of ur spine as they can appear newhere in ur spine, disk issues, tethered cord....

[Bobbigirl1]

Next what other testing did they do, did they rule out MS, lymes, lupus? We all go thru testing for those as the symptoms r so similar.

My NS said that  I dont have MS, and told me to come back in two months after PT. When I went back in, he said stop with the PT and get needles in my neck. His words were "if they do not work, then we know we are looking for something rare"   the pain is not always in my neck
its mainly in the base of my skull

U will also want to get more MRI's to make sure u do not have other issues with ur spine, disk issues, or tethered cord or syringomyelia.

Good suggestions. I'm waiting for my doctor to call me back, I"ll call her again tomorrow
and talk about next steps

Then neuro exams for other related conditions like ICP, POTS, and ehlers-danlos.....sleep apnea, even vitamin and mineral levels as well as thyroid all need to be checked,

In August, they ran some blood work and found that my ferritin and Vit D is low

[Bobbigirl1]

my report said everything was fine.

I've compared my scan to a friend who has chiara, we look like brain twins!

[Bobbigirl1]

Thank yoU!

[Bobbigirl1]

Thank you for your reply.

She had another patient who has the same symptoms that I do.
She suggested I talked to me doctor and my doctor agreed that we should test for it.

I do have a copy of my MRI and the report, the report says things are good.
But I believe that they need to look at the tonsils? the report says nothing about the tonsils? Am I wrong about this?