Arnold-Chiari Malformation Support Group

Mine:
-High Blood Pressure (Family-genetics)
-Breathing problems
-Chest Pain/ palpitations
-Acid reflux/throat issues
-Anxiety
-Fatigue
-Dizziness
-Pressure in head
-Pain in back of head
-Tingling fingers and Toes

Wow, wondering if I'm forgetting any....Sad!

Oh I didn't put all mine down, lol.. There are some syptoms that I have read about on websites but others I haven't found. I have really bad acid refux, depression/anxiety (I have family history of it), tingling and numbness in hands and feet and last night my mouth got numb?

Yes, sensitivity to temperature, breathing problems (not necessarily asthma) and low blood pressure are all symptoms. FYI: a chiropractor is not a good idea if you have Chiari. The manipultations can make your symptoms increase/worsen. I do have the 3 symptoms above, among others. For help with low blood pressure, read about POTS and dysautonomia. You can increase your intake of electrolytes and sodium to raise your bp. Hope this is helpful.

I have seen all of the symptoms you are experiencing listed on at least one list or another. As I am recently dx'd with Chiari 1 Malformation myself I am doing the research & am amazed at all of the symptoms I have had. In the past, I have passed them off as "getting older," arthritis, stress, sinus issues, 'sleeping wrong,' etc... Having joined this community & another, I now realize that the MS-type symptoms & the 'stroke-like episodes" my dr's insisted I was having are Chiari related.

Now, just to find either a primary care physician, neurologist and/or neurosurgeon (have seen all 3 since dx in Sept) to take my symptoms seriously is the battle I am fighting.

I too have been advised about sessions with chiroprators & even lumbar/spinal taps/injections as they can pose serious problems for Chiarians. Can you check any of this out with your PCP until you can see a neurologist? How did your diagnosis come about? ***Jean

well unfortunately my PCP has not been very supportive and I have only lived in Ohio for a little over a year and haven't found a good one. I basically had to finally convince him to refer me to an ENT because of my allergies to see if was sinus/allergy related since I was always getting what seemed like sinus headaches. The ENT did a CT of my sinuses and said they looked fine so he said I needed to see a neurologist. It took me about 2 mths to see them, but right when I told them my history and systems, especailly about the excruciating headaches and vision problems they scheduled me for an MRI.

I will definetely not see the chiropractor until talking to a dr but I have had this tailbone pain for a few years and the only thing that seems to help is going to the chiropractor and doing some yoga. Just sitting, driving, etc make it hurt.

From reading on many different websites, everyone can have MANY different symptoms... Mine include migraines, pain& numbeness in right arm, dizziness, memory loss, back pain, floaters in my eyes, ringing in my ears, etc. Then about 3 weeks ago I was in a bad car accident & my spine is REALLY screwed up now. I've had to put my Chiari "quest" on hold to deal with the effects of this accident.

Pinkanything-

I'm very sorry to hear about your accident. I know it must be very hard with 3 kids, I have 1 and it's hard enough. I was just diagnosed a few weeks ago and I haven't even gotten to see my neurologist. They just called me, gave me the result of the MRI and basically told me I had to keep my December appt. I haven't gotten advice from them on anything. I have all those symptoms you mentioned and a lot of other things that don't seem related to Chiari but may be. What happened to your spine?


Sarah

mssarah79, because of some of your symptoms has your doctors checked to see if your chiari has caused a syrinx in your spinal cord? Go to www.conquerchiari.org there is so much info on this site. It keeps you up to date on all findings. Follow your instincts and those of the ones you have found that have gone through the same as you (like people on here). I have found so many doctors to be quacks (found another today) and have found the ones that really know because that is all they do, or they have learned from experience. Good luck. Your symptoms are not out of wack. I would say as long as you have knocked other major things out you should be fine to say Chiari is the problem (It normally is)

Thanks. They haven't done any other tests on me besides the MRI. How do they check for a syrinx in your spinal cord?

they check for a syrinx by doing a full length MRI, Sarah...you should demand this in your situation. Good call, Joy.