Need answers....

[Devin215]

Well here is my update. I got my mri done last week of my entire spine. I almost didnt get that cus my doctor didnt put in the complete order. Luckily I saw that and called my doctor before I went in and he ordered MRI's of the thoracic lumbar and cervical spine. I got a call from them today and they told me everything looked normal but that's what they said before my neurologist found my Chiari and they both looked at the same MRI of my head. Out of sheer luck I had booked an appointment with my neurologist last month for tomorrow at 3pm which I forogt about and will be going to for him to double check my Spinal MRI and make sure my regular doctor is correct about it being normal. As for my symptoms I think I am starting to get worse. The pressure in my head elevates even when I turn sides too fast while laying down. Sometimes I will be at work and sitting down and it just flares up. It feels like my head is going to explode.This morning I had pain in my back, legs and neck, spasms in my arms and legs , a headache, blurred vision, and pain in my ears, I also felt like my tight arm was not attached to my body, I kinda had to concentrate just to hold a bottled water to my mouth and drink it. The ringing in my ears is coming and going day to day. I couldn't feel my arms the last 2 mornings I have woken up either. I think I am finally starting to get scared about what is happening to my body and a bit overwhelmed. Today I think is my breaking point. I haven't cried once about my diagnosis until today when the nurse told me my spine looked normal which I am thankfull for and I really didn't want them to find anything but it kinda just confirms for sure I gotta get surgery or it could be worse and I dont want that. I am so frustrated and I think mentally am taking things as they come like "ok this is it... it will go away after this" but I look at my journal entries and it kinda seems like I am just forgetting all the past days I have written and those symptoms. So I gotta tell myself no it wont go away and buck up and get the surgery not as a cure but for a better quality of life. I am so scared. Does anyone have some advice for me?

[selmaS]

HI Devin,

U may want to send a message to redkim, she is a member that had surgery by the same dr.

If u use the search this forum and type in redkim....it will bring up posts with her in it...u can then click on her name and send a message ect....

Make sure u r comfortable b4 u do nething...u must b in the right frame of mind for ne kind of surgery.

"selma"

[Devin215]

Hi Selma,
Thanks for giving me some insight. I am dealing with Dr.Won in Fontana Kaiser and my neurologist told me today he is the specialist and pretty much the only Surgeon in Kaiser that handles Chiari cases. I already had my consult with him about 6 weeks ago and he did recommend surgery based on my symptoms. My Neurologist Dr.Pham at kaiser is the one who told me of the Chiari and bulging disks today and he really emphasized  that I need to see Dr.Won from here on out about the Chiari and I should get the surgery sooner than later because he saw no other evidence of anything that could be causing my symptoms. Dr.Won told me a few weeks ago he is not so much concerned about the blockage o CSF but resolving or at least releaving some of the symptoms and the surgery will fix the blockage if there is any. Now I am concerned about DDD with the bulging disks....I kept telling him I want all my bases covered before I do the surgery.... Any more advice?

[selmaS]

Hi Devin,

Yes, this is stressful just to get to a dr that listens to us and knows what to do for us.I also have bulging disks and spinal stinosis.

I would suggest trying to get the MRI reports .....U also need to know if u have a CSF blockage and if u have overcrowding.....it seems the dr is not a chiari specialist.I had drs give me anxiety meds yrs ago too....they just do not know what they r looking at.

Outside of going to a chiari specialist....all I can tell u is try diff methods to try and relax...stress can and will make u feel worse. Accupuncture and or accupressure can be helpful.


Yoga or meditation....whatever works for u.

"selma"

[Devin215]

Hi Selma,
They didn't do a flow study but I grilled my neurologist and he told me I have bulging disks (mild) in my c2-c5 vertebrae....Which is news to me since my regular doctor didn't tell me about it. He tried to tell me that he thinks all my symptoms are stress related.....I in a way told him to shove it.....Maybe he is right this whole thing is stressing me out but before my diagnosis I was still miserable with the headaches and a mild deterioration of my quality of life..He recommended more anti-anxiety meds which I declined then he recommended another anti headache medicine for people with nerve pain or nerve damage...I told him I will try it but if it doesn't work I am not going to take it. He said ok but basically said in a way also that if I don't want to take more pills there isn't anything he can do for me and further appointments need to be with my neurosurgeon. What else can I do?

[selmaS]

Hi Devin...did u get copies of the report?....it does help to have the copy to see what it says...sometimes the dr will only read the impression and there is more info in the body of the report that may shed light.

Did u have the CINE MRI? do u know if u have restricted CSF flow?

I know most of us can relate to how u feel....and talking with others that do understands helps soooooooo much.

Are u seeing a chiari specialist?.....I know that seeing a NS is not the same as they r going by the little they were introduced to in med school...things have changed as how chiari is viewed and treated...so u really need a dr that has his/her focus on chiari and chiari related conditions.

"selma"