Intestinal pain?

Sorry. I am new to all this and have alot of questions. Does anyone else experience intestinal pain with this?

Ogott, yes many of us have intestinal pain and issues with Chiari. IBS, digestion issues, nutrient malabsorption, ect… Can also be a sign of Ehlers Danlos syndrome, which is a fairly diagnosis along side Chiari. There is a lot of info about Chiari, symptoms, and related info in the “understanding Chiari” tab at the top if the page.

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

Magnesium deficiency

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.

Dysautonomia- Dinet.org

Tethered cord syndrome

Sleep apnea

I am glad you found us,
Jenn

Have vitiman b deficiency. Very bottom of scale. Just started shots for it. Have sleep apnea. Wake up every hour and a half like clockwork. Thank you for the info and forum. You are a blessing

Do you take a lot of OTC pain meds like aspirin or Advil? When taken often those can really wreak havoc on your stomach lining and cause gastritis or ulcers.

Rarely. Because i dont like taking pills and nothing seems to work anyway. Intestinal pain may not be related to chiari. Have had issues in past

I was diagnosed with GERD before chiari. It always seemed very inconsistent and hard to pin point triggers. Medication also did not control it well. A doctor has not said but after doing some research I’m pretty sure it is from the chiari.

I have IBS, I must avoid certain fruits (mostly stone fruits) and sweeteners, such as honey, corn syrup, and sugar substitutes. I also need to avoid dairy, but not as much as the fruit. I get horrible stomach cramps if I eat those items. This is actually what first started with all my symptoms just a couple months before all the other Chiari symptoms started. I think it is all linked together. I went on this extremely strict diet called Foodmap diet and that is how I found which foods bother me. Now after about 6 months of avoiding the trigger foods I rarely have any problems. I hope you too can find which items bother you and eliminate them so that you can feel much better in one part of your life.

My 13 year old daughter has a lot of stomach pains with hers. Every time she eats, she can only eat a small amount before she has to stop.

My daughter was just diagnosed with Chiari today, and she has had a lot of stomach pain and intestinal issues. We have seen doctor after doctor trying to get a diagnosis for her medical problems. Unfortunately up until June my husband was in the marine corps and we were forced to see military doctors who had no clue what they were doing and instead of trying to help us they kept telling us that her pains were all in her head (ironic huh?). I took her to the ER this morning after a severe headache that she has had since tuesday and they found the chiari on a catscan and confirmed it with an MRI. She has had episodes where she can hardly eat anything because she says it hurts so much and at one point she lost so much weight she went from 30% bmi down to 9%. Last school year her pain was so bad I had to pick her up early from school 3-4 days a week.

Jsksnll, lots of us have Ehlers Danlos Syndrome which can cause intestinal problems.



Abby said:

Oh Jsksnll, I am so sorry about your daughter. I am glad your here with us because we understand what she is going through. I hope you can get your doctor in to see a knowledgeable doctor who knows about chiari. A lot of them simply do not know, they do not study it much. Most regular doctors only study one paragraph or a short seminar on Chiari, so they really are unaware what to do for us. I am thankful you took her and had her tested, now you know and can start treatment she needs. If you need anything, please let us know. Most of us on here are mothers, and believe me, we are mother bears when it comes to our cubs. Praying for you both.

Jcksnll said:

My daughter was just diagnosed with Chiari today, and she has had a lot of stomach pain and intestinal issues. We have seen doctor after doctor trying to get a diagnosis for her medical problems. Unfortunately up until June my husband was in the marine corps and we were forced to see military doctors who had no clue what they were doing and instead of trying to help us they kept telling us that her pains were all in her head (ironic huh?). I took her to the ER this morning after a severe headache that she has had since tuesday and they found the chiari on a catscan and confirmed it with an MRI. She has had episodes where she can hardly eat anything because she says it hurts so much and at one point she lost so much weight she went from 30% bmi down to 9%. Last school year her pain was so bad I had to pick her up early from school 3-4 days a week.