Can I join this community?

[Patchoulimama]

Recently dx with CM1 (7mm herniation w/o syrinx). Daily sx's include constant headaches varying in intensity from moderate to severe in occipital region and sides of head. Extreme neck pain with swelling in left side. Fatigue. Elevated heart rate which increases with positional change or activity. Shortness of breath. Leg and arm pain. Tingling Fingers and toes with dx intention tremors. Tinnitus presenting with muffled ear, ringing and whooshing sound. Vestibular issues such as misjudging distance and hitting arms on doors. Dizziness and spinning sensation while lying down. All of these sx's occure daily but the only constant is head pain and neck pain. Have had sx's for 2 years since MVA. Increased 6 months ago resulting in inability to work full time and withdrawal from graduate school. Married to a RN who suspects POTS. I am also concerned about EDS as I have some signs. I've seen a NL who confirmed some sx's of Chiari but thought mainly migraines. Last week saw Dallas NS who dx'd with intention tremors and said i have some chiari sx's but does not recommend surgery because my sx's are more from tension headaches. Since meds taken have not sustained effectiveness he recommended chiropractic threapy!!! He was not a specialist nor recommended to me by anyone. I live in OK and am seeing a recommended NS tomorrow. Also not a specialist but has been recommended by a CM1 patient. I have no had a CINE MRI. Have had Brain, T Spine and C Spine MRI. showed some mild foraminal narrowing caused by bone spurring (as per report) also disk bulging. I have conducted rigorous research but still have many questions, namely what can help me return to normal living!! I see Dr. Oro in July when my husband will be able to add me to his insurance which will open up many more options in physicians as my present insurance provider is extremely limited. I'd love some direction related to finding docs who can rule out EDS and POTS as I do have some sx's of both. Thank you :)

[Patchoulimama]

Thank you for responding! It helps to know there are people out there that are kind and willing to help!

[selmaS]

  Hi and welcome to the Chiari forum.

I agree, u should rule out POTS and EDS...as they can affect how u feel and heal should u move forward with surgery...

AS much as u research to locate a true Chiari specialist u will have to do this for an EDS DR too....I was DX'd with EDS but unable to find a Dr locally that knows enuff to DX me more or treat...so I have to wait to go out of state....

Keep in mind in seeing a Chiari specialist...many of the NS's do not work with ins for the office visits but the NL and hospital staff and such usually do and they accept much of what many ins comps offer to pay...I had little out of pocket in using a NS with this set up...so do look into how they bill etc.....

U do seem well informed....u said u have the cervical and thoracic MRI as well as the brain MRI...all u need now is the lumbar and CINE MRI's and an eval for ehlers-danlos, and sleep apnea, tethered cord,POTS,ICP,and ur vitamin levels and minerals all should be checked...many of us have an auto immune thyroid condition called Hashimoto's......

We r always glad to welcome neone that comes, but so sorry u have had to seek us out.

[Sara_Jane19]

Wow it sounds like you have done a lot of research already! You are right to want to rule out POTS and EDS. As well as these make sure you get a lumbar MRI to check for tethered spinal cord. I am just beginning my journey with other related conditions so I may not be the most helpful, but I will try!

I do have POTS and suspected EDS as well. For the POTS diagnosis I went to an electrophysiology-cardiologist (EP-cardiologist) at a major teaching hospital. I live in Chicago Land so there were many to choose from. Depending on where you are from this may be more difficult to find a specialist in dysautonomia. I know there are dysautonmia clinics at Vanderbilt university, Cleveland Clinic, and Mayo Clinic if any of these are possible to get to. I was not satisfied with the first doctor I saw as he did not specialize in dysautonomia and just put me on meds without any testing so I am going to get a second opinion later this month.

As far as EDS I suspect I have it since I have been diagnosed with hyperflexible joints that are hyper extendable, but I do not have an official diagnosis yet. I just made an appointment to see a rheumatologist at the end of this month for official testing. You would have to do research as to a knowledgeable rheumatologist you felt comfortable with. Dr. Oro might be able to help you as well to get a diagnosis for that.

Good luck and let us know if you have any other questions!
Sara