I am posting this in hopes of those of us who have been diagnosed with Chiari can share what our symptoms are and which ones we still have or don't have.Since many neurologists can't seem to agree on whether the symptoms are related to the Chiari or not I thought it'd be a good idea for anyone interested to share what their symptoms are so that it would give us all some light on this diagnosis. I have a 6mm herniation that was found on MRI in Dec.2006. My symptoms were1.dizziness(gone)2.off balance(gone)3.weakness in hands,arms,legs,feet(much better now)4.bad headaches(gone)5.anxiety(only occasionally now)6.pain in legs(gone)7.tinnitus(only once in a while now)8.loss of fine touch(much better now)9.trouble walking(gone)10.cold temperatures would make me feel disabled(much better now)11.feeling "spaced-out(gone)12.pin 'n needles in hands and feet(gone)13.cold hands/feet(only occasionally now)14.skin sensitivity(gone)15.red,sore tongue(gone)16.fatigue(still have)17.nausea(occasionally)18.shakey when bending forward(still have)19.trouble swallowing(only once in a while and I noticed it's after I've had a sinus headache when I have the post nasal drip)20.feeling of fullness in head(occasionally have this)21.urge in continence(occasionally)I know this is a long list,but I'm very curiou to find out how everyone's symptoms match or don't match...what's gotten better and what hasn't.Also it seems like ALL my symptoms started when I was entering menopause.Plus I am being treated for B12 borderline deficiency(which neurologists at the university said was causing my symptoms and NOT the CHIARI).I hope some ofyou will share your symptom lists so that we can better understand this Chiari.THANK YOU ~~~~Scout
Sorry...I forgot a few other symptoms.....heat intolerance(still have)....facial pain(sometimes)....numbness in an arm,leg or on side of head(sometimes)...weakness after using hands a lot(still have)...electric-shock type pains in different parts of the body(sometimes)....problems with vision(occular migraines)(had them quite often,but now only every few years(mostly if I eat foods with nitrates in them)....I think that's all of them. Scout~
There are many symptoms of Chiari. Many of us have similiar things and many are different. Here is my history of symptoms:
In my early 20's I began having tingling in my right leg. I was dealing with something very traumatic so my Dr was quick to come to the anxiety conclusion and I was given an antidepresant. Though my tingling persisted, I never went back because I assumed Lifes "stresses" continued as did my tingling.
About 4 or 5 years ago, I started having severe bowel issues with alot of pain. My dr sent me to a gastologist because he knows I don't complain unless theres a problem. All the tests they did, they found nothing, though my pain and severe constipation worsened. I know this is a personal issue but it was a big one for me. I had to use enamas to keep things moving. Why? They could tell me.
Then I started having severe heart palpitations. My blood pressure would soar, so again, my dr sent me to a cardiologist. Fatique also was getting bad. All I wanted to do was sleep and over exersion would put me in bed. So I really believed something may be wrong with my heart. I had every test they could possibly do and again, nothing. At this point, I could feel something was wrong but drs werent finding it.
Finally, the cardiologist decided that I may have sleep apnea. sure enough, FINALLY, they found it!! Sleep apnea can cause severe fatigue. So I had my answer. But, things worsened. The strange tingling now spead to other areas of my body. Now into my back.
I hadn't gone to a gyno in a couple years so off I went. Had a good exam, everything was fine so I fealt better. But I was getting weaker by the months. I started having cognitive issues and just simple tasks like making out my bills made me tired. I couldn't think straight.
Then my legs started getting weak as did the rest of my body. So I went back to my dr and he said that MS is something we should look into so he refered me to a neurologists. Had MRI's, fine. Then I had a lumbar puncture which was the beginning of my end!!
I got a headache, worse than you can imagine. I was in the hospital for 3 days on morphine and it didn't touch it. The pain radiated into my neck, shoulders and arms, down to my fingertips. They did a blood patch saying I had a spinal headache and sent me home.
Those headaches never left me. And because of the severity of them, that led to my chiari diagnosis. Once I learned about chiari, I realized that so many things that were happening in my body were not normal. I had thought everyone had these things but once I started questioning family, I found out that these things weren't normal.
!st thing I found out was sleep apnea is a common symptom of chiari. As well as bowel and bladder issues and heart issues too. It all started making sense. I have had headaches my whole life but I had always thought these were sinus related and popped tylenol a few times a day. But here are some symptoms I've lived with for many years, thinking they were normal;
Headaches that worsened when bending, straining, laughing coughing
head is sore to the touch, hurts to shampoo
Neck stiffness (I LIVED at the chiropracted for this, now finding out this can cause more damage to Chiarians)
Pressure in ears ( I would think I had ear infections but my ears would be fine)
Sensitivity to load noises, ringing in the ears, decreased hearing
Throat tightness, snoring, shortness of breath
tingling and spasms all over my body, prickling and numbness in extremities
burning pain in exremities, stiffness and weakness as well as pain
frequent urination, incontinence
crinic fatigue, memory loss, irritability
Numbness in face, head and tongue
Electric shock feelings all over
pain in head and neck when upright, eases when lying down.
There are probobly more that I've missed but the list is long. And some things come and go, some are steady and persistant and have worsened with time.
Some things are chiari related and some are from related disorders such as tethered cord and cranio cervical instability. There are other related disorders thankfully I have not been diagnosed with but not healing quickly is one that comes to mind. Bruising easily and hypermobility, like being double jointed as people call it, can be related to EDS, a connective tissue disorder.
I tried to give as many as I can think of but of course, my memory is not the best!! LOL I hope this helps.
Hi there Cindy! I am sitting here crying after reading your post...I'm so sorry that you have to suffer so much.I hate this chiari thing.I know I want so much to blame my symptoms on anything but chiari.Anyways I feel very CONFUSED about all this.It's hard,because I have other things going on...like the low B12 and being post menopausal.I just can't help thinking that the menopause brought all this stuff on,because that's when my lovely symptoms all hit me,funny though,isn't it?Anyways I don't know how to put my words into paragraphs(I'll askmy daughter-in-law to show me how....soon!...so you can read my type easier...sorry.)Hope you are feeling better this week>I REALLY MEAN THAT!<Take care Cindy.....thank you for answering my post....Scout~
I am so sorry that your having to deal with sadness and frustration. I can certainly relate to how that feels. I have days, too that I just cry and say that its just not fair and I wan't my "normal" self back. But after I cry it out, I feel better. And you will to!!
Ya know, not everything we have wrong with us always has to be blamed on Chiari. We have bodies that can have other medical issues as well. And your symptoms might be from the B12 or menapause related as well. So its always important to look at the whole picture. Thats one reason to seek out a chiari specialist so you can seperate whats really going on.
This is very tough to go through but you'll get through it!! You just have to find things in your life to bring smiles to your face and love into your heart. That helps, trust me!!
Thanks for wishing me better. I'm learning to take the good days with the bad. But I appreciate your warm thoughts!!
Hey Cindy....how are you doing this week?I think about you and HOPE you are doing much better!I have been doing really good(only a couple days here and there where I get that "disabled feeling").
Please let me know how you are...I REALLY CARE!
Guess what?I finally called my old neurologist today....and Iam so glad I pulled all my confidence together to do that!They said his nurse will call me back in 24-48 hours to go over everything and give me an appointment.
Cindy I will let you know what happens at my doctor visit.I amgoing to write down ALL the questions I have before I go so I don't forget.
He is one of the best neuros around....my hematologist said that doctors consult him when they have neurological issues.He helped me before...maybe he'll help me this time!
You really sound great and I'm really happy to hear that!! Sounds like you've pulled it together and are ready to get the answers you need to hear. When we're not well, it takes alot of our energy to make those calls and get back on track. So I'm really glad you did that for yourself.
And it sounds like you've got an attentive Dr on board. Thats great too!! Writing down all of the things you want to ask is a big help. Nothing worse than getting home from an appointment and forgetting to ask those important questions.
And thanks so much for asking about me while your dealing with your own issues. I do appreciate your kindness. I'm muddling through these days, trying to get all of my 16 year old daughters school shopping accomplished. The one thing I have learned in dealing with Chiari is not to overdue. So today I'm laying low and resting up. If I push too much, I'm in trouble!!
So, please let me know what your neurologist has to say. I'm rootin' for some good news for you!!
I didn't realize that an lp made your chiari go crazy. Same here! I went to the ER with the worst headache of my life in the back of my head. Since I had a slight fever they did an lp. I'm on the heavy side, and the dr acted like he had never seen an overweight person. After a needle breaking off in my back and some of the worst pain in my life, he got the fluid, but never bothered to check the pressure. Within a day, I was pretty much disabled. I was hospitalized for a week with this mind blowing headache, and when they couldn't think of anything else, they did a blood patch and sent me home. It was unreal that all those symptoms could appear pretty much overnight.
Here are my symptoms, most have returned now that I have this lovely cerebellar slumping.
extreme headache when yelling coughing straining
pressure in head and ears
constant stiff neck/headache ~better when laying down
brain fog/forgetting things
slight dyslexia (just started recently)
intolerance to cold/heat
burning tingling in feet
legs and arms are very weak
sharp jabs all over body
I'm sure there is alot more, but with my memory, those will have to do.
It is truly amazing how one LP can change your life over night!! I've never heard anyone else with chiari have that experience. Dr's have said the LP can mess with the pressure but this was a changing point in my life.
While they were doing the LP on me, something strange happened and it was like I was losing oxygen. The next thing I new, they were calling out my name. I finally came to and didn't know where I was. They were thinking I had some sort of seizure. It was freaky!! They refused to continue because they didn't really know what had happened to me. They claimed they didn't break through so I didn't need to lay flat after so I went home and the next day, bam!!
During my stay at the hospital the next few days, they did another LP before doing the blood patch. the pain was so bad in my head and it radiated to my neck and down my shoulders, to my arms into my fingertips. They were giving me morphine which helped my arm pain but never touched my head pain. I remember my neurologist coming in with someone he was training and he said "don't ever underestimate a spinal headache" Little did he know the damage it had done.
I had been experiencing MS like symptoms prior to the LP and always had a headache daily but had never even mentioned my headaches as a symptom because I was so used to it. A couple tylenol and I was good. But after the Lp, I am now disabled because of my head pain. If we knew then what we know now!! I'll never again let another person put a needle in my back unless they are aware of my chiari and can guarentee me that they can do it without causing more problems.
You poor thing!! That needle breaking off while they were doing the LP must have been so scary!! It sounds like this person was inexperienced and was blaming his inability to do it right on your excess weight. Weight definately shouldn't be an issue. I'm sure with the broken needle and all, they made a large hole in you. I had a second LP done the following day at the ER and the person doing it was shocked at the size of the hole the 1st one had left in my back. So I can imagine what they left you with.
All of your symptoms sound familiar to me. Its definately a difficult life dealing with all of this. So what are you going to do about the cerebellar slumping? Are you going to get a revision? You definately don't want to cause more damage by leaving it alone.
Hopefully you have a good chiari specialist monitoring everything. I hope you get some relief soon!!