I have been lurking this site for a couple of months and finally joined. My story is like many here. I am 39 (almost 40) and recently diagnosed with Chiari type 1 with a 11mm herniation and moderate crowding.
I was diagnosed with pigmentary dispersion syndrome in 2007 which can cause glaucoma if not watched so I see an ophthalmologist regularly. I am have been in the Navy for 20yrs and recently changed doctors since I moved from Virginia to South Carolina. My new ophthalmologist was concerned about a repeat small visual field defect in my left eye so I was referred to a Retina Specialist...who found nothing wrong with the health of my eyes. I was referred for an MRI and the diagnosis was Chiari (nothing to do with the visual field defect). I was seen by a NS already and although I do have some mild symptoms he gave me his card and said to call him if I wanted to discuss surgery at some point...he was nice but I felt rushed as he was running over an hour late that day...he didn't seem overly concerned about my diagnosis.
I am just managing my symptoms right now which consist of headaches, neck aches and some dizziness upon waking in the morning. I also have some fatigue issues and occasional IBS. I have flare ups of lower back pain...but I don't know if these are linked to Chiari or not. I thought my headaches were work related (occupational hazard) since I sit at a computer most of the day...guess I was wrong. I go in for mini physical next month and was planning on asking for a CINE MRI and a sleep study. Should I have any other tests to base line or to see if there is any thing else?
Does anyone have any relief from seeing a chiropractor? what about pain management with acupuncture? I would have to pay out of pocket for a chiropractor but there is a specialist for pain management I could see and she uses needles.
I am due to retire from the military in a couple years...just weighing my options to have the surgery while I am still active duty or not...I don't want to have surgery if I am not having any severe symptoms.
Fsuchic, glad you joined. There are many people who choose not have surgery, and as long as you don’t have a severe situation- like breathing issues /sleep apnea or a syrinx it’s ok. I’ve heard that some people have had results with acupuncture, but chiropractic adjustments are a big no for Chiari patients, it’s dangerous because of the herniation and also because many people with Chiari also have cranial cervical instability.
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. Finding a surgeon who screens for CCI is tough- not all Chiari surgeons have started screening for and treating CCI.
Thank you ladies. The NS actually said that if I get relief from a chiropractor that it was ok. I always thought my neck issues (stiffness/soreness) were from being in two car accidents over my lifetime or just occupational due to my administrative job. I read up on all the other things and I don't know if I fit any of those. I will look again. I do have carpal tunnel and have been through PT twice for it. The PT tech wants me to get a nerve conduction study but with all this Chiari stuff at the same time I was finishing PT for my Carpal Tunnel she told me to call when things settled down with appointments and such and then she would put in that referral. I recently started having joint pain in my fingers on my right hand so need that checked out. As for my low back issues I have had those almost 20 years...no MRI ever done on my low back but the last xray was two years ago and the orthopedic doc told me I just have rust on my hinges back there...another PT tech told me my right hip is higher than my left...so don't think it Chiari related or a disk issue. I don't have any neurological symptoms when my back hurts...pain usually lasts 3-4 days and I feel better...but when in pain I can barely walk let alone upright.
My PCM is great...I have no doubt she will refer me to anything within her ability so that I can get answers. So for now I will ask about the nerve conduction test for my carpal tunnel, a CINE MRI, a sleep study and maybe a tilt table test.
I have had to take vitamin D3 before after a blood test a couple years ago showed low levels...so will ask about that too. Ugh...turning 40 in January and falling apart.
Welcome! I am a former lurker as well!! I have found that there is a HUGE difference in a Neurosurgeon and a Neurosurgeon who has EXPERIENCE with treating Chiari. Many are able to SEE the herniation, but they are leery of treatment and the risks. With only having an MRI of the brain/head, you should DEFINITELY wait for the chiropractor. Obstructed flow of spinal fluid can cause a slew of problems and if you have a syrinx, it won't show up on the brain scan. The chiropractor can then cause irreversible damage if it is ruptured. I would seek other opinions if you can.
Many neurosurgeons want to treat based on the anatomy alone. I had a 10mm herniation (which my NS said wasn't outrageous, but was significant.) The CSF flow study for me showed NO flow in the posterior of the canal and limited in the front. I recently had the surgery due to the fact that it was causing likely irreversible symptoms. I have always suffered joint pain, exhaustion, things that seemed to never be "caused" by anything. Then I began having shaking/trembling hands, loss of coordination and balance, I even have lost some of my short term memory. My language skills have become impaired-I slur, stutter, grasp for words, and lose what I was saying altogether.
These symptoms were something that I personally was NOT willing to just mask. I didn't want to be 35 and demented with ALS type symptoms. I'm just telling you this because the symptoms are SO varied that it is so hard to compare them from one to another. It is also difficult to tell what is and what is not caused from the Chiari. My NS links 90% of my symptoms to the Chiari due to the restricted flow-causing pressure on other parts of the brain. He even mentioned that it may be contributing to other things like thyroid, reproductive, and emotional issues.
Where ever you are, try to seek out an in-network Chiari specialist. There are several on the recommended dr's list here. If there are none in your area, look at the larger hospitals NS list. They will have Chiari listed as an area of interest. If you can't find them, at least look for one who treats Spina Bifida (this is what all of my treatments are coded as because they don't have an actual code number for Chiari yet!)
ok, I think you all have convinced me not to seek out a chiropractor. I did had my last neck adjustment about 8mos ago before I knew I had Chiari. My MRI was post-chiropractor. The MRI did not show a syrinx.
Becky-Kelley, reading your post explains a lot to me...things that I would never think I could contribute to something else maybe they are attributed to the Chiari? How are you now post surgery?
I will talk to my PCM...I think the NS I saw was the only one in my area (Charleston, SC) that has any experience with Chiari. The hospital MUSC was on the list of Chiari recommended Doctors...but no specific doctor name was on the list. Being AD military I don't know what my options are with my insurance.
Welcome! I'm glad you decided to join the site! I'm also glad you've decided against the chiropractor. It's sadly just not safe for chiari patients.
Everyone has given great advice as to what to ask for! Since you are having low back pain Rebecca's idea of a full spine MRI is a good one! They should also evaluate you for a tethered cord as that sometimes goes along with or even causes Chiari!
I hear you on the pain tolerance. Mine is really high and for the longest time I thought I was normal and other people were just big crybabies (not really but kinda, lol).
Rebecca said:
Beeba, That is a really good post and point!
I thought EVERYONE had headhaches. My brother who is 4 years younger than I - we are extremely similar in everything. We both have insomnia, we both have similar tastes and habits, etc. I guess I assumed he had headaches. When I first was diagnosed with Chiari 1 I just happened to ask him how his sleeping and headaches have been going. He replied,
"I never have headaches."
Now, I never cuss. But the I mentally said, "WTF?!" Then I got to talking to other people. And, you know, most people don't get regular headaches. The ones they do get were no where near the type I get. I was floored. And for some strange reason, angry.
I then realized that my pain scale is severely shifted to the right. What I consider painful - I guess a lot of people would be passed out or headed to the ER. And all these years, I had no idea.....
I come from a long family history of many symptoms with no cause or diagnosis. My surgery went well and I’m recovering well. I attribute it to a couple things. Age-I’m only 28. My surgeon-specializes in minimally invasive neurosurgery, he made the smallest incision possible, moved muscle instead of cutting, etc. My health-I’ve always been a “healthy” person as far as diet, exercise, weight, injuries and illnesses. I’m 3 weeks post op and currently baking cupcakes. I know this is not necessarily the norm. I have about 80% of my range back and still taking tramadol for pain. I likely won’t be able to go back to work quite yet because of driving, but I’m hoping soon. I also don’t sleep well. I take 3 different meds, but post op I just can’t get comfortable for long.b But keep in mind there are a lot of people who have Chiari, the surgery done, and life is good so they don’t seek out support. Many of the wonderful people here are at the same stage as you, have had more troubles post op, etc. So when you scroll through, remember the people who did great and left the group. I know some others here have had good results too. Just something to keep in mind.
I had a head and orbits MRI with and without contrast. So should I ask for a full spine? Again, as far as I am aware no severe symptoms. I do not have any incontinence when my back flares up, no dimple and no birthmark. I also don't get headaches during a bowel movement. Most of my headaches are in the morning and I attributed them to TMJ headaches as I have a history of dislocation in that area. The oral surgeon back in the day could not find anything wrong with my jaw...so that was when I was referred to a chiropractor initially...that was in 2003. I did get relief from headaches after that...I was also fitted for a night guard and they never helped and seemed to make my morning headaches worse so I stopped wearing it altogether. Now looking back...maybe they were Chiari headaches all along. I always seem to have a slight headache...have only ever had 3-4 headaches in as many years that I would consider a migraine.
They say Chiari is congenital...any cases of it being acquired? The reason I ask is because when I retire from the military I do not think they will provide a disability percentage for a congenital defect...however having had two car accidents where my vehicle was inop after and a backwards fall...I have to wonder if it was acquired vice congenital. I joined the Chiari military group but did not see anything to answer that question there.
jenn