I'm new here looking for some help (sorry its long )

I am a 29 year old mom of 2 dealing with pain issues for almost 5 years now.

I am currently in the process of finding out if what I suspect as Chiari is actually the real thing. I have always had neck and back problems growing up and was always told by my family dr that all my aches and pains were because I was over weight and if I lost some weight I would feel better and shouldn't have pain anymore. So i never really thought more about it .

5 years ago after the birth of my first child I was getting the neck and head pain and these nasty pressures in my head so I decided to go to the chiropractor and see if they would be able to help me. After a bunch of test he said a bunch of stuff was wrong and wanted to start a 3 year plan that I would have to pay up front for! At this time I didnt have the 7000$ he wanted to charge so i ran out of there thinking he was a quack and just to get money from me. But while I was in there he did tell me that I had sway back and that a normal person is suppose to have a +30 degree backwards curve in their neck and mine was currently sitting at a-1 degree curve and my skull was starting to tilt forward ( i think he called it military neck) I had degenerating disks and a couple other things I cant remember. I know he wanted to sell me some cervical traction unit to help restore the curve in my neck. So walking away from that with no answer because I didnt have the money and I had also just found out shortly after that I was pregnant with baby #2 and already had a 2 1/2 year old at home. So I went on about life dealing with any pain issues as they would come along the best I could.Thinking that most aches and pains were due to pregnancy.

6 months after having my second daughter I was forced to go back to work because my husband was laid off. I ended up getting a good just that I enjoyed, but when I would come home I would have two kids wanting attention, the house was a mess, dinner had to be made,bath and bed time, I was lucky to last until they went to sleep as I was so tired from the every day. I eventually got sick it started in my right abdomen first they thought tubal pregnancy because I had my tubes tied, then they thought maybe it was kidney infection or something to do with my girl parts, so they did test after test after test. With everything that was going on I was sleeping like crazy had all over body pain neck and head pain, shoulder and arms, the right side of my face was numb or burning . Eventually I was diagnosed with fibromyalia was given a bunch of medications (elival, cymblta, percocets,tamazapam) I was still getting this nasty pressure and pain in my head that wasn't a headache or migraine. The pains were always stemming from the lower right side of the base of my skull/neck area. the pressure was hard to describe as it felt if I hung myself of a meat hok right at that spot it would make me feel better.

My dr ordered more test and decide to try me on lyrica for fibro. shortly after I started the lyrica I decided that my pain was the same whether I was taking these meds or not so I stopped taking them. I was dealing with thepain the best I could there was no sense in taking medication that isn't doing anything for you. Shortly after this I started to have these weird black out seizures. ** description of episodes.

#1 the first time I had an black out it happened while I was bbqing. I had got out of my chair to go and check on the stuff i had on the girll, and I started to get this weird feeling come over me and felt really dizzy and spacey, then the next thing I know I was laying on the ground the bbq was moved about 5 feet from the fence I guess I grabbed it on my way down but I was dizzy withringing in my ears and my body pulsating to the whooshing in my head. until the dizziness stopped i was unable to move I just held myself into a ball until it was gone...

#2 I was standing in my kitchen with my mother and best friend chatting my mom and giirlfriend were on either sides of the island and I was over at the other counter acrossed the kitchen that is not very big. I started to get the funny spacey feeling again and my tonuge started to feel funny, tried to get over to my mom and when I stepped forward i didnt have any control of myself and bumped right into her, she thought I was playing around by bumping into her and asked me if I was ok, I tried to answer her but I couldnt she seen the look on my face and knew I wasnt ok, and at that same time my legs and body gave out and it was lucky they caught me before I hit the floor or I would have hitten my head off the island, and again the same thing as when I was bbqing, the dizzy spacey feeling and then that ringing in my ear, the convolsions in my body and not being able to control anything other then sit there in a ball until it was over, the episodes never really lasted more then a few minutes. Once the dizziness went away and my confusion was gone I was ok. Except this time since,someone else was there with me I noticed something that I had not noticed before and this was the my pupils were HUGE they were so big that you could barely see the blue in my eyes anymore just black pupils.

My dr at this point ordered a head ct, took my drivers license (for 8months!) said it was probably the lyrica (that I wasnt even taking but I would have told her anything at this point to get my license back) When the neck ct came back it showed that I had a 5cm mass in my chest I was freaking out she sent me to a thoratic surgeon who then told me it was a thymus gland and that it was nothing to worry about. Also found that I had a mucus retaining cyst in my right sinus woohhoo lol

But nothing out of the normal came back from the test, everyone kept telling my all my pains were due to the fibro. She had also ordered a head mri since i was still having these crazy head pressure painful headaches that just knocked me on my butt!And when this MRI came back it showed that i had 1mm tonsil on the right side but put in his report that it was not CHIARI. So also during all this time I was waiting to see a neuroligist ( the appointment i first showed up for a YEAR early!!!!) so when i finally got in I had done some research since I wanted to know what these tonsils were and when I had read about the symptoms of chiari I was convinced that it was I had it was like they were talking about me when explaing it on the differeent sites. so I waited the year to get into the neuroligist and was so hoping for some answers because I knew this head pain pressure I was having was not fibro it had to be something else, i know the fibro pain and this wasnt it. I ended up waiting almost 2 hours to see him, he spent 10 minutes looking over my file doing his poking exam and looks at me and says you have fibro your drs treating it i dont need to see you again.
I was devisted I thought he was the last person I had a chance with to tell me it was something that I could fix because the head pressures were crazy!! I asked him wasnt there herniation of the tonsils yes but only 1mm its not chiari.

I went home after that appointment feeling like I had lost all hope, I startred to just tell myself it must be fibro everyone else seems to think so. Taking all the meds they had told me to made no difference other then to help me sleep Dealing with the pain all the time thinking thats just how its suppose to be. Any time I went to see my dr and complained of headaches or pressure she would tell me thats part of fibro. so I just took there word for it. But lately the pains getting worse and I have been doing a little research and I am not convinced that I have just fibro. I believe that with the mess of a neck I have and the little herniation that it is in fact chiari just not sure if its 0 or 1 where i am at.

If you have any input as to what you think may be my issues or that will help me along my way to finding some reliefe please feel free to comment. Id love some support of this also another weird thing i had happen once a couple years back that I was curious about and seem a possibility on a message board of someones story. I was sitting on the couch one day and went to stretch arching my back and bringing my arms up when all of a sudden on my right side I heard a pop and a gushing feeling of warm down my neck, I was unable to move my head for several minutes, then it started to ease up and with in an hour I had my normal range of motion.

any ideas on what that may have been? I read that it could have been a cyst?

This summer has been brutal for my head pain pressure, couple weeks ago I was at my girlfriends and I was feeling fine she has a beautiful pool and the kids were swimming so i decided to dive in too and enjoy the pool, which was my worst mistake ever! I dove in at the deep end under water by the time i surfaced in the shallow end I knew I was done for the pressure started in my head immediatally. so im thinking that he pressure of the water on my head pushing my head back (which hurts on a normal day) must have pinched something because I was done the pain was so bad I just wanted to go home and lay down. so the week after that I was at her house again, taking the kids for a swim this time I was being smart becasue I wasn't about to jump in the pool after the last episode, so I sat pool side for the afternoon, by 5 the pressure pain was getting bad we got home from the pool I managed to heat up some left overs with this pounding throbbing

pressure at the base of my skull behind my eyes all over the right side of my face my neck and shoulders hurting like crazy it was hurting so bad all I could do was lay there any cry (if i lay down it seems to take the pressure off however if I stand up too soon and can still feel the throbbling pressure it comes back as soon as I stand up only 20xs worse) I couldnt even sit up the throbbing was that bad. My husband had to go to work and I got up to get his keys and the pounding was
crazy, and my kid had left stuff on the kicten floor so I bent down at my knees to get it and I thought the pounding throbbing pressure was going to make my head explode off all I could do was just cry I couldnt even think staright it was so bad. Had hubby not had to go to work would have gone up to the emergancy department, as i had taken eveything under the sun and probably taken way too much but i didnt care I jst wanted this evil pain to stop. After he left I just went to bed because I knew if I could get to sleep and lay down I could take the pressure off my head and thankfully when i got up in the morning the pain was subsided it was there for weeks as a dull pain that you just know if you do too much or move the wrong way you were in trouble because it was going to flare up..

I have had many days like this and i just push through the best I can and the last time I was at my drs which was monday I told her about everything that I just posted above and told her I thought it might be possible that I could have this and requested an mri ( currently a 117 day wait).So now I guess its a waiting game for me. I think either way I am going to ask her to refer me to chiari spcialist to see what they actually have to say since reading different sites you dont have
to have a 5mm droop to have symptoms.

Thank you to anyone who took the time to read my novel and I am hopeful for some help.

Thank you


So sorry you are going through all of this. From what I have learned..the '5mm rule' no longer is the protocol from diagosing Chiari..in other words...size doesn't matter..it is the symptoms and the CSF flow..cerebral spinal fluid flow. that is..there is a test to see if your CSF is blocked or obstructed...it is called a CINE MRI...pronounced..cinny..like minny ..mouse!

I would suggest you see a neurosurgeon and bring in all reports along with a detail list of all your symptoms. I, personally, never got help from ANY neurologist that I have seen...In my opinion, they do not see enough Chiari patients to know what to ask the patient and what to look for.

Let us know how you are and don't give up....it is so sad..but most of us here had to go to many doctors to get the right kind of help.

Keep us in the loop.


I would try to get a CINE MRI to see if you spinal fluid is blocked. If it is, then the chiari is causing your symptoms despite not being 5mm.

Thank you guys for replying. I will ask for a cine mri. Question do you think its better to go to the ER next time I have a flare up so they can see it in action.

Thanks ladies. I was thinking the same thing about the laying down giving a wrong reading since laying down is the only way I can get pain relief. I think the next time I have pain I’m going to go in and try to get some answers. I can’t live with these pains all the time. I can’t function or think straight when I am in pain. Do you think the curve or lack of might be playing part too? Sorry just so frustrating being in this situation

Hi Vanessa,

I have to agree with what everybody here has said to this point. Definitely get the CINE MRI to see if there is blockage also check to see if you can get a full spine MRI to check for syringomyelia (a syrnix). Also with chiropractors, be on the safe side if you use them, do not let them manipulate your neck that could make the situation worse, until you are sure that neck manipulation will not cause any damage.

Finally welcome to the group and know that we understand. All of us here either are in some place in our Chiari journey or we are taking care of loved ones who suffer from Chiari.


Thank you :slight_smile: its nice knowing that someones listening because I’m sure the people around me are sick of hearing about it and no I’m not seeing a chiro practor right now. Haven’t been to one in about 4 years.

Got a call for my MRI today my appointment is for oct 22. Seems so far away but at least I can be thankful its a step in the right direction :slight_smile:

They run mri’s 24/ hrs a day here. When I first looked it was 117 day wait. So it wasn’t a far off estimate

Yay :slight_smile: I put myself on a cancellation list for my MRI which was suppose to be Oct 22 and got a call today to go in for my mri. It was only a head one but I’m also going to get her to order a cspine and a tspinewhen I see her in 2 weeks to get my results. But I know this time to call and put myself on the cancellation list it goes much quicker. Was just so happy to get A step in the right direction sooner then expected :slight_smile: