Not quite a question

[Cryxus]

  I'm not sure this is the place to put this,but I just had to get this off my chest, and hope this makes sense to someone else. I am 39 now to put this in perspective. This all started when I was 20 when i was in a car accident. I started getting what I call my daily headache. I also started to get my severe headaches about once a year. I tried going to see a Doctor, but he just had me take Tylenol. After a few years and alot of complaining it was suggested that I take one tylenol and one ibuprofen, as directed. When I was 25 I started to get my severe head aches about twice a year, and since I was in a different location I found another Doctor. This Doctor was a backwoods country Doctor and I loved him, he didnt fix it but I felt he was truly trying. Also at this time I started an apprenticeship as a blacksmith, instead of going to college. My severe headaches increased, little did I know that bent over an anvil shaping steel with a hammer was causing my headaches (not to mention lifting the heavy steel.) After my 5 year apprenticeship ended I started a job as a farmer. I moved and lost my country Doctor. My severe headaches went back down to about 4-5 a year, I started to work for a hospital as a laundry tech. I was lifting 100 lb and more bundles of linen onto tables regularly. My severe headaches increase and the dizziness started to show its ugly head. I worked there for 3 1/2 years and luckily they got 12 sick days a year because I used them. I also noticed that I stopped breathing when i slept.  It all started to unravel when I started to bleed from the other end. I went to see a Doctor, which at this time I no longer trusted because I believed they all must be quacks if they cant find out whats wrong with me, and they all look at me like there is no way I can have those symptoms. This doctor sent me to several tests and informed me to stop taking ibuprofen for my daily head aches because it was causing the bleeding. Since my grandmother died of brain cancer I was sent to get an MRI and to see a NS.The NS informed me that I had a growth that he wasnt concerned about but I had degenerative disc disease in my neck. I started doing as he prescribed and started on sick leave as needed at work. It didnt work and I lost all trust in Doctors. I lost my job because my severe head aches started to be once a week on average. I went 3 years without seeing a Doctor, and applied for disability, since I couldn't find a job that would let me have a sick day about once a week. Of course disability denied me. I gave up, I was lost and didnt know what to do. One day my girlfriend asked me to go see a Doctor who she had seen at the grocery store. Yeah right what would he know, after all no other doctors can find anything wrong with me. She finally nagged me enough to go see him. I didnt have an appointment but we called and he said he would fit me in on a certain day. I went and waited 3 hours and finally went into the room, I waited and hour in the room, at which point a nurse came in to tell me the Doctor wasnt able to see me and she would. I got up and said no thank you I'm done and walked out. I was in the parking lot when the Doctor came out to tell me that he would see me and the nurse didnt know that. I didnt want to but i grudgingly went back in, sat down and told my story to him. He looked at my disc with the MRI on it and asked a few questions then stated, you have Arnold Chiari. Its 9 mm and I want you to see another doctor and make him your primary care doctor. I didnt want to but I went to see him, I must say I have never looked back. He is a godsend, he takes the time to listen and believes when I tell him this or that. He had me have another MRI to see if it had grown, which luckily it hasnt. I'm having a hard time finding prescriptions that fit my conditions but he is open to my problems and is willing to try others. I cant believe how many things that I thought was normal at 39 aren't. I have gone through a whole battery of tests only to see I am one of the most healthy person he has seen. I finally asked why do you keep testing things if you cant find anything and you believe it to be ACM. He looked at me and said I'm proving that its what you have, no one will ever doubt it when i am done. I have numerous conditions mentioned on this forum but not all. Which I am finding out not every ACM has all the same contions.It is so great to see a community of people that know what I am dealing with. Sorry, my post is so long, but I hope someone understands what I wrote and got off my chest.

[pamk5]

Hello and welcome! If it helps we have all been there.  Not being able to find a doctor that will listen or even admit that CM can cause symptoms.  Alot of us have also had doctors diagnose us in such a nonchalant way that we believed CM was no big deal or an incidental finding.  Alot of us have also had some type of trauma that precipitated the symptoms.  I am glad you have a great primary care doctor but what you need is a CM specialist that can offer you surgery if you need it.  There are tests that need to be done like a Cine MRI to rule out CSF blockage and an MRI of your spine to make sure you dont have a syrinx.  You have a significant herniation but the size is not important it is whether or not you have blockage or crowding.  There is a list here in the forum of CM specialist who the other members have seen and liked.  Be aware that you may have to travel.  We share alot of the same symptoms as Chiarians and a specialist will recognize those symptoms and validate them.  

It took me quite a few months to find my specialist and I will be having the surgery in a few weeks.  The only treatment for Chiari is surgery.  There can be some meds that help minimize the symptoms.  Surgery is not meant as a cure but a means to stop progression and hopefully resolve symptoms.  I have an awesome PCP too, but all he can do for me is manage medications and refer me to specialist if necessary.  Since Chiari compresses the brain stem it can cause a host of symptoms.  It is not uncommon to have to see cardiologists, urologists, ent, gastroenterologist... it can affect so much.  Most CM specialists will be NS's and they will focus their practice on this disease.  

I hope this helps.  Again, welcome!  I hope you find the answers and support you need here.  

Pam

[trdofbeingtrd]

This is an important post, and I think it would be a great thing if people can keep it up for a long time so that it's understood that it's about having the right doctor. Thank you for sharing.