How fast does this progress?

[TLW03]

Hi everyone. I am new to the forum as I have just been diagnosed with a 17mm herniation and a syrinx. My question is how fast does this progress because every day I feel worse. I no longer work because I shake so bad and get so dizzy. Do people still work with all the symptoms? I feel like head is going to blow!

[KerriC1]

Sure sounds like you've hard a difficult time especially with a newborn. I can relate to the biopsy scare. I had 2 emergency biopsies for ovarian and uterine cancer, which thankfully came back good. Turns out I had a prolapsed uterus. That was way before I ever heard of chiari. But I can see how you should be concerned with EDS. It sounds like it warrants further investigation.

And the neck positioning during the procedure could certainly have triggered symptoms. As hard as it is, try not to stress terribly because that affects this also. I know it's easier said than done. The best thing you can do is take your time and find a specialist who will guide you in the right direction!

I hope and pray your biopsies come back negative and relieve that terrifying stress on you! Prayers sent your way

[kgperry]

In my area. Not neighborhood. Brain fog much?

[kgperry]

My road to diagnosis started because I was diagnosed with prolapse after having my now 10 week old baby. Worried a little bit about EDS because of that,  and the lack of specialists/awareness around Chiari in my neighborhood. Also had a thyroid biopsy a week ago, and my symptoms have been pretty consistent since having my neck reclined back so far two days apart (one for ultrasound, one for biopsy). If it is cancerous, I'm worried what thyroid surgery will do to symptoms/Chiari with my head back for hours. Hoping I'm one of the 85% that come back benign so I can focus on getting in to the right docs so I can get my imaging ordered and move forward. I'm counting my blessings that I have found some amazing support in the few weeks since diagnosis and at least have manageable symptoms where I don't feel rushed into surgery and can shop around for the right doc. Hard to avoid lifting with a newborn, though. :/

[KerriC1]

Yes it's very possible. I didn't have a syrinx but had lots of neurological symptoms. Tingling and numbness in hands and feet and sporadic other places. I'm only 3 months post op but was undiagnosed for 15 years. My brainstem was kinked and caused a multitude of symptoms.

It also depends on what coexisting conditions you have and it's very important to have them ruled in or out. I was diagnosed with EDS before surgery and now am dealing with cranio cervical instability.

It's not all bad news, most people do rather well if you know and understand your limitations, and have a chiari specialist.

[kgperry]

Is it possible to have neurological symptoms (tingling, stroke-like symptoms, etc.) Without syrinx? It doesn't sound like it. I've only had brain MRI scheduled by PCP. Waiting on referral to NS to go through, but no Chiari specialist here.  Even with surgery, sounds like things won't get better and could get worse. Not very encouraging with new diagnosis. :(

[selmaS]

I had tingling and did not have a syrinx, so I would say yes. I had surgery and an doing better....but this is the best I have been since and b4 surgery and I am 6.5 yrs post op.Key to success is find a true Chiari specialist and make sure ALL related conditions are ruled out and dealt with.

[KerriC1]

I also have hyper reflexes. I assumed it was caused from chiari, but since decompression it hasn't resolved. Could be too soon for me yet, or EDS, or CCI, as I'm dealing with all of the above right now...

@tattooer601 you can google the Brighton scale and test your hyper mobility, but not all EDS'ers have that aspect of it. There are other markers for diagnosis. I'm very hyper mobile and along with other signs and symptoms gave me the diagnosis. I'm currently awaiting a geneticist appt next month to be typed. Good luck to you both

[tattooer601]

Fo you have any links...etc,regarding what test are done for Ehlers-Danlos?
  It would help me,thanks for your time.

[selmaS]

http://www.medhelp.org/forums/Ehlers-Danlos-Syndrome/show/417

[tattooer601]

I know you are ready for relief, it's my hope it comes for you soon.
  Please keep us posted & try to take it easy on yourself

[selmaS]

@TLW03- Hi and welcome to the Chiari forum.
Everyone is different as to how Chiari affects them....I do not work...as I was out too long and used up all my FMLA time. I also did not have a syrinx, I had surgery to help prevent one from forming since I did have a CSF obstruction. Has your Dr ruled out ALL the other related conditions? Do you have a true Chiari specialist?
The symptoms of Chiari cycle....they can come and go....so you can have times where symptoms flare and get really bad to feeling like they went away....but with a syrinx symptoms can develop rather quickly or very slowly....some of the related conditions can affect how quickly symptoms can intensify.
It is possible to return to work after surgery and a period of healing which can be longer then the typical surgical recovery period.Know you are not alone <3

[TLW03]

Hi Selma, no I haven't been checked fir related conditions yet but my doctor told me I also have hyperactive reflexes, is this also related to chiari?

[selmaS]

Hi yes a spinal cord injury or issue can cause hyperactive reflexes....Many with Chiari also have Ehlers-Danlos which is a connective tissue condition....which can cause issues should you go forward with decompression surgery and precautions are not taken .

[tattooer601]

I'm sure everyone is different,but I can't work.
  Each day for me is different with the exception of constant head pressure.
    My head hurts so terrible that I've learned distraction technique to help me keep my sanity.
   I hope you feel better.
Have you had surgery?

[TLW03]

@tattooer601, no I haven't had surgery yet I'm scheduled to see a neurosurgeon on the 27th. I'm ready for some relief!