Headaches,Pain,Syrinx,Chiari?

[Mommi007]

Okay, I need your help. My name is Trish, I am 26, married and a new mommy to a 5 month old boy Aidan. I am becoming increasingly frustrated with this head pain that has been going on for over 2 years. Let me tell you what is going on, first here is my history:

25yo female

Height 5.7"

Weight 140lbs

Umbilical hernia repair age 5, C-section May 2008



In September 2005 I began having some strange symptoms. I started feeling very week. I was very weak with walking and just felt like I was dragging. I started having these strange prickly sensations across my back and chest when I was in heat, or when i would experience temp changes...cool to hot. For example if I was in the shower and the steam would hit my body- not even the water, it would feel like thousands of little thin needles all across my upper back and chest. This would also happen when I would go to open up the house door and I would be standing between the storm door and house door and the heat between the two would give me the prickly sensations. I had no clue what was going on. Well then my legs started to tingle and I really thought nothing of it, maybe it was postural. I knew something wasn't right when my legs started to feel like each one weighed a hundred pounds and it felt like I couldn't pick them up. So to the doctor I went, had every test under the sun, moon and all the planets ordered....Lyme, Epstein bar, you name it. I had a nerve conduction test done at one place that was "normal". Well my doc sent me to a neuro and he looked at the nerve conduction and said "for a 23 year old, these contractions are not what they should be". And he wanted to do his own nerve conduction test, and an EMG. He told me if he did not like the results of his tests he would send me to the hospital for a spinal tap. These were more normal. He ordered a Cervical and Thoracic MRI with and without contrast. The only thing that was found other than some cervical degenerative disc changes (as mentioned a neurosurgeon I saw later) was a thoracic syrinx from T5-T8. A small thoracic syrinx 1mm in diameter, central canal etc.etc. Well, my neuro said he thought I may have Syringomyelia and the MRI showed no textbook Chiari at the craniocervical junction, so he said he thought I did not have Chiari, based on the absence of a nice herniation. I was sent to and saw a local neurosurgeon to see what he thought and he took a look at everything and evaled me and said he thought the syrinx was an incidental finding. Also that I had some degen disc changes from C3-C4 to C5-C6. He believes nothing else was warranted and recommended a six month follow up for an MRI. Well these symptoms were getting better and seemed to resolve. I made sure not to lift anything heavy or you know to keep this syrinx in mind. I moved from New York to South Carolina in '06 and in the summer of '06 I started having these weird headaches. At the time I was a smoker and it would aggravate it also, so I quit! I started to get nervous because now when I would climb stairs or jump around with my dog it would spark these weird headaches that would spread to my face and jaw. I would have this ringing in my ears. From morning to night, dizzy spells. I had a cardiac workup done... I can't tell you how many EKG's, cardiac enzyme blood tests, echocardiagrams, holter monitors. My doctor here in SC said it was Anxiety. Well anxiety would make it worse, but I didn't understand how anxiety would give me these weird headaches while climbing stairs!! Have I developed a fear of stair climbing!!! Please! I nicely turned down the anti-anxiety medicine he wanted to give me!!! Pretty Scary! So I thought-well maybe this is anxiety and forgot about it. Still wouldn't go away. 06 turned into 07, I got married and moved into a home----with stairs!!!!! Guess what still hasn't gone away? Yep the headache and face/jaw pain. Once again I went to my doctor and he said he thought the syrinx would not be of cause. My husband and I got pregnant in August of 07 and I was so excited but in the back of my mind-literally is this lingering pain. This pain did not get worse when I was pregnant but was always there. I would get dizzy spells, but you know that happens when you’re pregnant too. I worked at a hospital and I would have to climb up a hill to get the mail. I thought I would die. The headache after climbing and the face pain really was scaring me. What’s funny is that once the headache/face/ache goes away there is lingering pain in the area below my head and at my neck. I demanded that something be ordered from my OB/GYN and based on my symptoms and pregnancy she was concerned about it being cardiac and ordered a workup...EKG, holter monitor for a month, and I even had an exercise stress test at 20 weeks pregnant and passed everything. So this can't be cardiac. Well I figured if this was cardiac and it didn't show on the tests it would have complicated my pregnancy-and nothing. Climbing upstairs was hard enough with the pain before and being 9 months pregnant and 45lbs heavier is even a huge struggle but I would have to stop mid stairs (12 stairs) and pause and my head would be throbbing and I would get to the top of the stairs and the headache would be there and lessen and linger in the back of my head and top of my neck. I would take a Tylenol and it would eventually lessen even more and go away. May 14th I gave birth via C-section to a 10lb baby boy. No complications from C-section, I even told the anesthesiologist I had a syrinx and he gave me a spinal. Well here I am now 5 months and not only is this stupid head pain gone, but I have been experience little waves of tingles on the outside of my legs from time to time and I've been having some weird tingling on my right side from my neck to shoulder around to the front of my chest. What is going on? Why hasn't this stupid head pain gone away? Why is it brought on by me climbing stairs, or anything strenuous? Now although it doesn't happen all the time, not every time I climb up the stairs, but I would say 80% of the time. Why does it start out in the head, then face, then ends up and stays in the back of my head and neck? I pulled out my MRI's from '05. I know there have been some questions in diagnosing Chiari Malformation as opposed to years ago. I know that CFS flow obstruction by less roomy posterior fossa and not nesessarily herniation through the foramen magnum is used now by SOME EXPERT DOCTORS. Upon looking at my MRI I'm looking at my cerebellum and the foramen magnum and I know everyone’s anatomy is to their own (I am a nursing student), but compared to a normal MRI of craniocervical junction or of a brain MRI mine looks a lot lower, like its almost sitting on the Foramen Magnum-this MRI was 3 years ago. Anatomy and Physiology I know, MRI technology I don't. I can tell you planes ect and the organs, and what regions we're looking at as far as cervical, thoracic etc. Well I have heard of Chiari 1 even Chiari 0 can cause symptoms. I really believe, no...I know there is something that is not right. My head pain, dizziness that I get, almost like an equilibrium problem, can be when I turn my head certain ways, usually to the side, the ringing in the ears, occasional choking on liquids upon swallowing. This is all getting to the point where it is interfering with my life. My son takes his naps upstairs and although I do not get the head pain every time, it happens 80 % of the time. The dizziness is scary and it does not happen a lot probably in the last year it has happened about 5 times, but the one time I was holding my son on the bed and my husband had come in the bedroom, I looked up at him and I think look down at the baby and I had to tell my husband to grab the baby because I was violently dizzy. I am afraid to driving with my son because I am scared it will happen in the car. And no I am not post partum depressed, besides these headaches, I llove my life, my family, and besides this pain I am extremely satisfied with my life. I would like your advice on how to go about this. I do not think the doctors here in SC are very experienced with Syringomyelia or Chiari...and I am not saying I am or have either....but I know something is not right..and with syrinx and these symptoms..it is adding up... Should I go see a Neuro here in SC and have an MRI ordered, Cervical, Thoracic and Brain....WWO contrast? I know Thoracic for sure, because it has been 3 years since that MRI. I want to be a pain free, be a "mobile" mom, and get to the bottom of this!!!! Anything would be great. Thank you so much for your time and service, and expertise.





Sincerely

Patricia H. Tolan

[MG (Admin)]

Please could you tell us what the neurologist found the last time you had a full neurological examination.
Please forward us the precise wroding of the MRI report and attach a picture to your reply if possible

thanks