Just Diagnosed

Welcome Greetings and Introductions
1

Hello all.

I was just diagnosed with Chiari malformation yesterday with a 6mm herniation. I am concerned and believe I will move forward with surgery very soon. But I have not scheduled it yet and still am trying to take everything in. I have so many questions.. If you have the time please answer them below.

Life insurance and disability insurance: I don't have either of these yet.. Is there a possibility to qualify after being diagnosed?

Surgery: How long does it take to recover? How intense is it? Any tips before going in? Is there any other way to treat this disease?

Should I wait or get the surgery now? I hear that the disease can get worse and my chances of recovering the symptoms get smaller the longer I wait. I also hear that the disease gets worse as your get older. I am only in my twenties and am concerned if I get the surgery now it will get worse in my 30s..

What symptoms did the surgery fix for you? My neurosurgeon is convinced that Chiari is only causing my head aches and numbness. I also experience brain fog, full body twitches, memory loss, and blured vision, also chest pains and difficulty swallowing..

2

Goodness, you have lots to digest after a Chiari diagnosis. I hope that you find some answers both here and through your doctors.

In regards to life insurance, you will probably not qualify as you have a diagnosis of Chiari, have symptoms, and surgery has been suggested. An insurance company will not offer coverage to you until one year after surgery and that is if you do not have symptoms. If you do have symptoms (other than a headache) they will charge you more or disallow you. This has been my case anyways.

My opinion on surgery is the soon the better after a diagnosis if your health can support it. The brain does not always bounce back from continuous pressure. Just my thought with no basis on scientific knowledge!

In regards to your symptoms, I have always thought of Chiari as have a two tiered system of symptoms. Headache, numbness, muscle weakness (with others too!) on the first tier. This first tier the doctors typically understand, can fit into their knowledge base of Chiari, and can often measure.

The second tier becomes more variable between clients and includes what you listed above - brain fog, body twitches, memory loss, vision changes. I would put the swallowing difficulties in the first tier. This second tier seems to cause the most problems in terms of dealing with medical professionals as there does not appear to be a direct neurological or anatomical reason to explain all these funny symptoms. Nor do doctors have much to offer to alleviate symptoms. This is no doubt why Chiari clients often get painted with the crazy brush!

My understanding from talking with medical folk is that these second tier symptoms are not necessarily specific to Chiari but are shared by people under neurological stress (MS, dementia, tumors, brain injuries...). The brain becomes over-stressed and some areas start to underperform. Reasearch people are starting to identify frontal release signs or re-emerging primitive reflexes as contributing to these symptoms. We, as Chiari folk, experience this as vision problems, fatigue, temperature regulation, and balance issues.

I guess that in a way your doctor is right that Chiari is only causing the headache/numbness as that fits within his knowledge base and understanding of Chiari from what he learned in school.

From my reading, surgery does a better job of correcting the first tier of symptoms but less so with the second. I found that exercises to extinguish primitive reflexes have helped with some of those. I have yet to master the fatigue issue but I keep hoping!

Good luck, again, in finding the information you need to relax with your diagnosis and the scariness surgery can seem to be

3

Mallisa, I’m going to copy an earlier post that I think is relevant since you are newly diagnosed :slight_smile:

There are common themes that come with Chiari as far as related conditions/ diagnosis. Not trying to overwhelm you with this, just want you to be informed.

Vitamin d deficiency (high daily doses of D3 can help with symptoms)

Magnesium deficiency (non-citrate magnesium daily)

Vitamin Bs deficiencies

Syringomyelia /syrinx- cyst within the spinal cord as a result of CSF hypertension/blocked or partially blocked CSF flow.

Ehlers Danlos syndrome- google the Brighton Critetia and the Beighton Criteria. This can cause cranial cervical instability. CCI further compresses and damages your spinal cord and has the same symptoms as Chiari. This should absolutely be ruled out. If you have EDS and CCI, get the decompression surgery done without correcting the CCI you may continue to have the same symptoms or worsening symptoms- a second surgery will be required. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.

Dysautonomia- Dinet.org (this is a big one for anyone with brainstem issues!)

Tethered cord syndrome

Sleep apnea- dangerous, especially if Cranio cervical instability is involved

I am glad you found us,
Jenn

4

I agree with the other answers here. Definitely take some time to think it through and let it all sink in. Don't rush into surgery by any means! And definitely get to know your neurosurgeon. He/she should be able to answer many questions for you that are more individual and unique to you personally. Make sure you are comfortable with him/her and trusting.

Insurance: will depend greatly on the plan and/or where it comes from. Often times employer's insurance policies are more relaxed and accepting. Mine wouldn't cover a pre-existing condition for one year from coverage.

Surgery will depend greatly on you and your body. Have you had any other surgeries? Are you in good overall physical health? Are you healthy weight? Surgery is very intense. I don't want to downplay this, but I also don't want to scare you. It's a big decision with many possible and a few probable outcomes. Surgery itself generally includes opening the area at the base of the skull, removal of a piece of the skull, then POSSIBLY a removal of portion of the vertebrae, opening and patch placed over the lining of the brain, and tonsil shrinkage. The last ones depend on your herniation and CSF flow generally. So it's very invasive and recovery is intense. Surgery one treatment of the condition. There are ways to treat the symptoms, but if you have a limited CSF flow, there aren't a lot of options. There is no cure for Chiari.

Whether to wait or do it now is really a question you should have with your neurosurgeon. Chiari can get worse, but it can also plateau. Recovery from surgery, in general, is more difficult with age. HOWEVER, it also has many risks and side effects. That's why I say it's more of a personal and individual decision to talk to your surgeon about.

The results of the surgery vary greatly as well. Some people have to have repeat procedures. Some don't. Remember when you are looking at a support site, it is often times people just like you, seeking help, encouragement, and support through a difficult time. Those that have huge success often never look or come back for support so they are often not active in discussion.

For symptoms-surgery has alleviated many of my symptoms including headaches, stabbing pains in my head, fatigue, balance & coordination, and hormone imbalance. It has not changed my memory loss, word jumbling, or brain fog. However, I am also aware that the former can return slowly in the future.

Sorry to be so wishy-washy and not give you direct answers, but I hope this helps!
XOXO