This flare up is lasting forever

[Mandyb08]

Hello! So I've been experiencing this flare for more than a month. Muscle weakness/numbness, fatigue, weakness in hand, lump in throat, strange muscle vibrations in the middle of the night, vertigo, visual disturbances, the whole package. I know I have a mild form of chiari and I'm hoping that it is chiari I can blame for these symptoms. My question is, other than surgery, what can I do to get past this flare up that won't seem to pass? Side note: i've been very physically active. Should I stop exercising? Any advice would be helpful:)

[kgperry]

I posted on the old post first. Thanks for the info!

[lasel22]

Silly me, I just realized this was an old post.  I have an excuse, I'm recovering from brain surgery

[lasel22]

I also live near NYC and had similar symptoms that you have. Once they flared they never went back down to an acceptable level.  I did the whole "Chiari runaround" that you are doing right now probably. I went from being extremely athletic to bedridden, so cutting down on exercise would probably help.  For over one year I saw neurologists and inner ear neurologists, infectious disease specialists, prominent NYC neurosurgeons that claim to specialize in chiari (top hospitals in NYC), and I even sent my images to the chiari institute and they all blew me off.  TCI sent me a letter saying there was no pathology. Everyone was saying I had a mental problem, anxiety, depression, etc.  As a final last attempt I sent my images to Dr. Bolognese of NSPC and Dr holly Gilmer at Beaumont neuroscience in Michigan along with a description of symptoms.  They both agreed Chiari was the problem and I just underwent surgery with Dr b and so far I had a great experience at the hospital and Dr b has been great too.  I am already seeing some benefits one week out but still feel pretty bad too. He said it takes 6 months to feel 90% of benefits and one year for 100%. If you would like to know the names of the chiari specialists that mistreated me in the NYC area send me a private message and I'll give you their names.  Some of them are even listed on the site as a recommended doctor.

[kgperry]

I just had a baby and was diagnosed a week ago with Chiari after having two stroke-like "episodes" (one early in the pregnancy, one post-delivery). Very overwhelming, especially since stress from the diagnosis itself, on top of prolapse, thyroid growth (found in CT in ER), and possible 3rd melanoma all found in the last four weeks is a lot.

Any recommendations on getting sleep while waiting on approvals/referrals to local NS (no specialists in UT, but still need spinal and CINE MRI, with my neuro symptoms, etc.). I feel like a ticking time bomb that will self-destruct in 5 . . . 4 . . . 3 . . .

[selmaS]

@kgperry - Hi and welcome to the Chiari forum.Congratulations on the birth of your child....boy or girl?.... All medical conditions and issues can be frustrating and overwhelming.The stroke like episodes can very well be Chiari related..and more testing is a must with everything else you have going on,, you will want to rule out ALL related conditions as well.Yes, you need to have more testing but you will want a local NL not a NS at this point to get the testing....once all tests are done then you will want a true Chiari specialist and you may need to travel as they are few and far in between..Try to relax and enjoy your little one and we will try to help you with answers the best we can.

[AmyFS]

It is ironic, right?  Sad, but true.  I also have 2 little ones so I know exactly what you mean.  I think there are quite a few moms with young children on this forum.  It seems like alot of us get our diagnosis at this stage of our life.  Bad timing for that, huh?  We have enough going on already :)
Hope you're feeling better.

[Mandyb08]

AmyFS, I think you hit the nail on the head. I have a baby and toddler so I haven't been sleeping or resting much. That plus the rigorous excerise I've been doing must have pushed me over the edge. How ironic that working out to get more energy has robbed me of my ability to walk down the block. Ha!

[AmyFS]

I can sympathize.  I am going through a flare up now, too. I'm having almost all of the symptoms that you're experiencing.  I find that my sleep pattern (lack of ! ) really can make it so much worse for me.  That sounds trivial & obvious but it magnifies my symptoms drastically. I am 2 years post op.  Some extra rest and taking a break from the exercise may help at least a little bit. Hey, some relief is better than none :)
I agree with the others, seek out a specialist.  So many of the NS, even the ones that are quite notable, really don't focus on chiari the way we need them to.  Its a very complicated disease and they leave us frustrated.  You said that you're close to NYC.  Can you look into the Chiari Institute on Long Island?  If it is possible for you, I would reccommend skipping the other docs and go straight to the best specialist that you are able to get an appt with.  Too many of us waste time and energy muddling through useless appointments until we finally get to the right doc.
Good luck to you!!! You'll be in my prayers.

[selmaS]

  If u r close to a Chiari specialist I would most deff go, they now take ins and that may be a help, they did not when I went.

They will test for EDS and all  the other issues.....

[Mandyb08]

I've been everywhere. Rheumatologist for a positive ana- everything normal there; endocrinologist, again everything normal. Do you think I should skip going to a third neurologist in my immediate area and just go to new York city to the specialist listed? I live really close by.

[selmaS]

  The fact u had the wrong Drs to begin with  may have misguided u.....there r related issues that can add to how u feel and if u have a CSF obstruction that leads to the formation of a syrinx , and that left untreated and causing compression can also lead to perm nerve damage.

With out pursuing this how will u know?

Do u have a PCP u go to on a regular basis?...have u had blood levels checked lately?

[Mandyb08]

I don't have a specialist because each neurologist I've been to has downplayed my diagnosis and called it a "non-consequential" finding. Part of me still thinks I'm suffering from some terrible and progressive disease that just hasn't been diagnosed yet and the other part wants to cling to chiari since it's a livable condition, however uncomfortable. I don't know what to do except read your helpful comments and surf the web for answers. I'm so scared it's not chiari (als) that I almost don't want to pursue a chiari specialist.

[selmaS]

  Hi...deff stop what ever u r doing as some activities can trigger symptoms....since u r in a flare that will not go away, u have to look to what u r doing.

We do have a list of activities to avoid with Chiari and Syringomyelia in the Health Pages -http://www.medhelp.org/health_pages/list?cid=186

U have to listen to ur body, some of us may be able to do some things while others may not..we r all different.

And if u feel this bad,how can u say u have mild chiari,,...that was a Dr that gave it that term....and in  my book it is how it affects u that denotes mild or severe, and if u have a month long list of symptoms then how mild is it really?

Do u have a Chiari specialist?