Hello all,
I was diagnosed with a Chiari back in Dec. 2010 (7 mm); a new MRI on Jan. 2014 revealed that my cerebellar tonsils descended to 13.7 mm. I also have a huge cyst on my brain. Last week I was diagnosed with Ehlers-Danlos Syndrome, Type 4. The doctors sent me to the cardiologist to have some more tests done because I’ve been having palpitations since long time ago, but they gave me the appointment and follow-up until January of next year. Should I wait that long? I’m totally new to EDS. I have read very little about it. I don’t have medical insurance in the US so that’s why I’m having my appointments in a very good hospital with excelent doctors but the “waiting list” is extremely long. I will be waiting for my decompression surgery eventually too. But I need to Know if it’s ok to wait and how long should be reasonable to wait…
Hi Abby,
Thank you very much for the information! It is very useful!
Lourdes
Abby said:
You can have your GP ask for a tilt table test. Many of us Chiarians with EDS, have dysautonomia. Please read about it below. I suspect with you having Chiari and EDS, you also have dysautonomia with those heart palpitations. There are medications that make you feel better. Go to DINET.org and look at the symptoms and treatments.
Keep in touch and let us know.
Do you experience any of these symptoms:
Severe headache and neck pain
dizziness
lightheadedness
nausea and/or vomiting
vertigo
palpitations
difficulty swallowing
visual disturbances
ringing in the ears
sleep apnea
impaired fine motor skills
and/or muscle weakness?
If you do, please continue reading.
You may have Ehlers-Danlos Syndrome and the resulting cranial settling.
Ehlers- Danlos Syndrome (EDS) is a genetic disorder affecting every connective tissue in the body. The body of an individual with EDS cannot properly form collagen, the "glue" that holds the body together. The resulting weakness causes many debilitating symptoms and an array of disorders may accompany EDS. Individuals with EDS can also have Cranio-Spinal Instability (CSI), a lack of stability of the neck and skull. Because of this lack of stability the skull may sink down onto the brain, forcing the cerebellum out of the skull creating a condition called cranial settling. This condition can mimic Chiari 1 Malformation (CM1). The resulting pressure on the cerebellum and the brainstem progressively damages both structures over time. In addition to this, the odontoid bone in the neck, due to lack of stability, may push backwards into the brainstem, causing further damage. The cerebellum controls the body's sensory processing center. The brainstem controls the autonomic nervous system, or all the body's functions that you do without thinking about. Dysautonomia, or the dysfunction of the autonomic nervous system, often results from damage to these vital parts of the brain. This can affect all of the body's organ systems. All of these disorders can occur in conjunction with each other, and combined they can cause all the symptoms listed above and many more.
Hello Nykki,
I tried to get the Obamacare and/or Medicaid and I was denied both. I am unemployed in the US, when I applied for the Obamacare I was unemployed too and the lady who was helping me filling up the application told me that I was over qualified to obtained the Medicaid but I was denied. So, that’s why I came to México because as Mexican we have free insurance; the problem is the little too long waiting lists with this free process… I mean, the neurosurgeons that are treating me are excellent, they are the same that charge a lot at their private hospitals and that travel to the US and other countries to perform surgeries and then go to this hospital that I go and don’t charge anything. But I don’t have money to pay for quick consults and all that. And yeah… I already had a paralysis back in December of last year.
Thanks for responding Nykki!
Nykki said:
Hello Lourdes,
I am very unfamiliar with protocols regarding patients from other countries. Are you able to obtain medical insurance in the US? I would think that if your Chiari has caused you to become paralyzed in the past, then it should be addressed surgically.
Take care,
Nykki
I know,a I always try to find a way and stay positive but it gets very frustrating sometimes…
I really didn’t know about the clinical trials! It sounds good! I will definitely look into it!
Thanks!
Take care,
Lourdes
Nykki said:
Lourdes,
My heart symphathizes with you. I have been homeless and unable to care for myself. And sometimes in this great country of ours, those without money are treated like second class citizens regardless of ethnicity. Have you ever considered participating in a clinical trial? Here is some information regarding some open clinical trials that are acttively recruiting particpants.
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Official Title:Dural Graft Equivalent Comparison Trial
Further study details as provided by St. Joseph's Hospital and Medical Center, Phoenix:
Primary Outcome Measures:
Complications encountered during the subject's post-operative care [ Time Frame: 2 years ] [ Designated as safety issue: Yes ]
After the 12-month follow-up is completed on the first 100 subjects there will be an interim analysis of the results in order to determine whether one of the treatments has a statistically superior outcome. If a statistically superior outcome is noted, the trial will stop after being reviewed by a data monitoring committee. If no statistically significant difference is seen at one year, the study will continue until the 12-month follow-up is completed on the 200th patient.
Estimated Enrollment: 200
Study Start Date: January 2012
Estimated Study Completion Date: December 2018
Estimated Primary Completion Date: December 2018 (Final data collection date for primary outcome measure)
Eligibility
|
| Genders Eligible for Study: |
Both |
| Accepts Healthy Volunteers: |
No |
Criteria
Inclusion Criteria:
- Minor or adult males and females
- Symptomatic Chiari Malformation
- Greater or equal to 6mm descent of the cerebellar tonsils below the foramen magnum
- Headaches and/or neurologic findings (e.g., arm pain/weakness, myelopathy, etc.)
Exclusion Criteria:
Please refer to this study by its ClinicalTrials.gov identifier: NCT01667770
Contacts
Here is the link to this trial http://www.clinicaltrials.gov/ct2/show/NCT01667770?term=Chiari+Malf...
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This is a way for you to receive the surgery in the states and have follow up care up to two years without insurance.
Hope this helps
Take care,
Nykki