Chiari Malformation

[aiMelissa]

I was recently diagnosed with a Chiari Malformation.  I am wondering if there is anything that I can do to help relieve my symptoms until I am able to have surgery.  The minute I found out what I had and what could be done for it, I knew I wanted to have the decompression surgery.  I have very severe symptoms and at the top of this list are my headaches (in the occipital region) that feel  like intense pressure.  And pain everywhere.  I also have balance issues and since having a spinal tap done (before we knew about the Chiari) my symptoms have gotten worse and I have to have a cane to walk because it am too wobbly.

Sorry to be long winded, my question is.....how can I feel better for now?  I am miserable.  

[Esteban Cheng-Ching, MD]

Thanks for using the forum. I am happy to address your questions, and my answer will be based on the information you provided here. Please make sure you recognize that this forum is for educational purposes only, and it does not substitute for a formal office visit with your doctor.

Chiari malformation is a structural abnormality in which the lower part of the cerebellum (organ that controls balance), descends through a foramen at the bottom of the skull. This abnormality may be or not related to symptoms, and there are many many people, even with severe Chiari malformations, who do not have any single symptom, whereas there is people with small Chiaris who have symptoms.
It may go completely undiagnosed, and one day be found in an MRI performed for some other reason. The problem with this is that people many times have nonspecific symptoms including headaches and generalized pain, and eventually a Chiari is found, but there may not be relationship between the Chiari and the symptoms. This gets difficult to elucidate, and close observation and evaluation by a neurologist may be necessary to determine if there is no other cause for the symptoms.
In your case it seems that you have already had extensive evaluation and you are considering surgical treatment. Regarding Chiari, once is thought to require surgical intervention is because of the presence of symptoms, and medications may provide only symptomatic relief.  For the symptoms of pain and headaches, regular analgesics help, and sometimes there are other manifestations that may require physical therapy and supportive therapy. There is no specific medication to cure the symptoms. Some patients find huge relief in Chronic Pain Treatment Programs, with multidisciplinary approach including pain management, physical therapy psychology and group work.
It is difficult for me, without a detailed history and a physical examination, to tell you if your symptoms are or not related to the Chiari, and as I said there is no specific medical therapy for these. Each symptom may require a different medication.
It is very important that you understand that in order to correlate the symptoms and the need for surgery for a chiari malformation, the best is to see a physician who has experience seeing patients with Chiari, in order to avoid surgery if not really needed, or to have it promptly if required.
Regarding Ehlers Danlos syndrome, it is a condition that affects the connective tissue, which is the tissue that provides support, stability and structure in the body. There are multiple types of Ehlers Danlos Syndrome, and characteristically patients have skin hyperextensibility, tissue fragility and joint hypermobility. There may be other features depending on the type of Ehlers Danlos, such as easy bruising from capillary fragility, abnormal scarring, poor wound healing, bony abnormalities, etc. It is a genetic condition, and there are genes that are the culprit. The diagnosis is usually made based on the patient’s medical history, family history, and physical examination. For some types there are genetic tests, but this is not commonly done.
There are no classic associations between Chiari and Ehlers Danlos, this does not mean that they cannot occur together.

As I said before, I cannot really tell you what specific treatment there is for your symptoms, and without a good history and a physical exam I cannot say what the cause of your symptoms is. I think you should discuss with your neurologist the pros and cons of surgery for Chiari in your case, and decide based on a benefits and potential complications.
I hope you find this information useful. Thank you for using the forum, and good luck.

[Maureen101]

Correction to previous post.  First paragraph should read Closed Head Injury.

Thank you.

[Maureen101]

I have recently been diagnosed with Borderline Chiari Type I Malformation touched
off by a whiplash (car accident) injury.  There may also be a Closed Injury.  I am
awaiting further testing.

Since I have been disabled with a prior TBI and chemical exposure dating back
to 1985 along with other whiplash injuries, plus Hashimotos, I am no candidate
for surgery now or in the future.  Plus I am a senior.

I am managing symptoms.  Take no medications.

Do you think its possible to manage symptoms for the rest of my life and not have the Chiari progress?

Thank you for your reply.

[aiMelissa]

Thank you for your time in answering my questions.  I sincerely appreciate it.  I am awaiting more tests (Cine MRI) and then will have a surgery consultation.  I was hoping that there was something I can do in the mean time.  Thanks for your suggests and info on Edhler danlos

[aiMelissa]

ALSO....there is a condition associated with Chiari called Ehlers Danlos Syndrome (?).  How do you check to see if you have this as well?