What does this mean??

[fibo]

Hello everyone. This is the first time I have ever asked a question on a forum and new at this so please bare with me. I have been in chronic pain since childhood. It has been just a big mystery. I would have sever headaches along with joint pain, muscle spasms,nausea,vomiting, etc. They always told my mother it was growing pains and a deformed tailbone.  I'm only 5'1" if this was true I would be a very tall person. When I was in my 20's I was still in chronic pain and diagnosed with degenerative disc (more degeneration than for someone my age) and a broken tailbone (not deformed and had to ask Doctor to take a second look he stuck his head in the door and yelled it out and took off). I also had sever menstrual cycles. I would explain to the doctor and he would just say oh I've never heard of that it's just cramps. I was married and could not get pregnant for 10 yrs. In my 30's I finally demanded that he find out what was wrong and that it was not in my head. They did a laparoscopic and surprise it was Endometriosis. He said it was the worst he had seen ever and he was sorry for not listening to me. One ovary left, fertility drugs, a shot to kill endo, then again sever joint pain. Sent to RA doc said you have Fibromyalgia see you in 6 months. Endo back in 6 months had to have hysterectomy. I thought for sure some of the pain and symptoms would stop. Still nausea, vomiting, headaches, sever muscle spasms, joint pain ,back pain, etc. I had a spinal fusion L4L5. Still not much relief. I go to work everyday in agony until 2 weeks ago. I was having dizziness,incontinence, headache, blurred vision, etc. I was lying in bed and my head would feel so funny. I sat up on side of bed for about 4-5 mins trying to get a grip I got up and hit the floor. I had no legs. I Just kept trying to move until finally the feeling came back some. When I got up they felt like jelly. I have fallen a couple more times in the past and always got right up. The last day I worked I feel twice for no reason. I have been in the worst pain ever especially in my head and neck area. Neurologist did a complete exam, Mri Blood work and I don't have the results from him yet. I also had to see a Neurosurgeon ( said not much as usual been to him before not that happy with him) said it was tight muscles (cervicalgia I had to read his diagnosis on the physical theray slip) and the base of your brain is lower than normal see you in 4 weeks. I am just realy dazed and it did not register until I left his office. I looked it up and Chiari Malformation popped up. I do not want to jump to conclusions but I need some answers. The neuroligist had already told me it was not fibromyalgia I can hardly function the pain in my head is just so sharp, it shakes or twitches at times along with other sysptoms. Waiting on the results from the good neurologist it is agonizing waiting and I need advice on how to approach him about Chiari Malformation. Thanks for any advice.

[selmaS]

  Sorry u r dealing with the same inept NS .....hope u can find one that is a true chiari specialist and works with ur ins.

  Good luck

  "selma"

[fibo]

I really appreciate all of the info.  It is true about your body telling you something is wrong. It is frustrating when it takes years to get answers.

I had an MRI in 2006 that showed a ruptured disc. My DR sent me to this same NS. He said oh you don't have a rupture. It's Fibro. I suffered for 3 months when my Dr sent me to Orthopedic. I made my mind up to just be blunt. I told him  I am in pain, this is not in my head, if you can not help me please do not waist my time and I don't want to waist yours. He told me he knew what was wrong, that he would help me and he did. I hate to be this way but this is the only way I've gotten answers. As far as this NS goes he has been a waist of my time. When I saw him this week I let him know about the ruptured disc. I told him I suffered because he let it go. The man just said oh it ruptured later. I said no it was ruptured when I saw you.  That is why I just went blank asking him about the base of my brain being lower than normal.

I will use the info ya'll have given me and thanks so much!!!!!!!

[2009Zipperhead2009]

Wow. I am a Charian. A lot of what u r sayn sounds familiar. My Chiari was found through a CT Scan of head due to migraines.

I wish you the best. I know how frustrating it is to not know. It took years to finally find a doc that would listen to me.

Remember. Docs have the gifted hands, but no one knows ur body more than you do.

Peace!  

[linnielou232]

Hi there.  Yes please make a copy of the question list and any other question's that come to your head as you think of them.  I know when I would go to the doctor's I would leave and think Oh I forgot to ask this or that.  I also have found in my experience it is good to have a family member or a friend go with you because they can vouce for the thing's that have been going on with you.  Some dr's I have gone to, when I left they made me feel so crazy and so confused when they were finished with me.  When I finally had a health partner to go along with me to visit's all this stopped because my family has gone through the ordeal with me.  I wish you the best and I pray you get the answer's you are looking for.

[selmaS]

  U r welcome...we also have a list of questions to ask the NS...http://www.medhelp.org/health_pages/Neurological%20Disorders/Questions-for-a-Chiari-NS/show/1155?cid=186

Just remember the Dr works for u, and u can fire them at netime....

     "selma"

[fibo]

Thank you so much. I will make a note to ask the neurologist about the EDS, the CINE MRI, and the CSF. It is hard enough to explain to them  your symptoms. I have started writing down my history and any advice that I get from anyone is helpful. This will give me the knowledge and the confidence to ask and demand answers. We pay a high price for health insurance to keep getting the run around and bills from doctors.  Thank you sooooo much. I hope to have answers soon and trust the Neurologist that I saw a week ago. I will keep ya'll posted.

[selmaS]

  Hi and welcome to the Chiari forum.

let me start by saying, I know just how u feel...it seemed to take forever to get pregnant with my DD...I only was blessed with 1 and I am sooooooo happy that I have her, but would have welcomed more...that said, I now know I my body most likely would not have been up to dealing with more pregnancies.

The fact u were told u had endo is a good indication u have ehlers-danlos syndrome....(see- http://www.ncbi.nlm.nih.gov/pubmed/9420859)

EDS would also explain ur muscle spasms, joint pains etc.....not the fibro they r telling u...do ask to have EDS ruled out, especially if u r told u need surgery...u need to know this b4 as it can affect recovery.

Most of what u mention could be chiari....but, until u get the review from a true chiari specialist..u should wait...and do make sure u get copies of all MRI's and tests along with reports sou can more easily go for a 2nd opinion. More testing will be in order...full spine MRI's ...cervical, thoracic and lumbar....and a CINE MRI to see if u have a CSF obstruction and overcrowding.

  Do keep us posted

    "selma"