nervous

[pm64]

Ive already been to 2 neurologists who say my syrinx cant be causing the pain and symptoms I have. Thursday im going to a neurosurgeon who specializes in the chiari and syrinx. Just worried I will hear the same thing again. I do have fibro also but dont think all my pain is just from that. I picked my granddaughter up yesterday just one time and that caused alot of neck pain and a headache. Ive also been getting a numb feeling in my face, sometimes the whole thing and sometimes just on one side, im also very clumsy lately and drop things. Most of my pain is in my neck, shoulders, arms, and legs, and sometimes my chest and ribs. I have gotten very weak to, even a gallon of milk is really heavy to me. Are these some of the symptoms everyone else has? I lost my password for this sight so I havent been on here for quite some time.   pm64

[pamelalg]

This is my first time here. My 31 year old daughter has just been diagnosed w/Chiari 1 Malformation and Syringomyelia. We have had two surgeons recommend surgery.

It is my understanding that given she has developed the Syrinx, though her symtoms aren't too severe yet we should have decompression surgery.

I would appreciate any suggestions/input regarding this.

Thank you-

Pamela

[rod44]

Hi pm64, vent away, we understand the need to vent. It can be very frustrating when you are dealing with so much ignorance and lack of a desire to understand No one can begin to understand what having this illness is like.
I have had many different diagnoses over the past few years, everything from Menears Disease, Benign paroxysmal positional vertigo to Peripheral neuropathy. One doctor will come up with a DX, I will be sent to a doctor who specializes in this illness, this new Dr will say no it is not that and so the cycle begins again. Eventually when I got my DX it was very obvious on my MRI so the Dr's could not deny the DX. This did not change anything because now they say my symptoms are not consistent with my DX yet they cant say what is causing my symptoms, add insult to injury they dont seem interested in finding out what is causing my symptoms.
OK now I'm venting lol

You should ask if there are any other abnormality's on your scans.
If you have had any injury to your neck in the past you need to make your Dr aware of this.

Ray

[selmaS]

  Hi...if u have the copies of the MRI's and they were done less than 6 months ago take them, most ins comps will not pay for more in a short time frame...so, take what u have and if u have old ones that were done get copies of those as well so he can compare them.

If they r the wrong slice or magnification they mayu be able to ask for new MRI's under a diff code that the ins will have to accept, so no worries about the small town hosp.....

I am so glad u r getting the support u need from the site it was my rock and salvation as well...the friends u make here r lifetime friends : )

   "selma"

[pm64]

Thanks for welcoming me. I dont have this site all figured out yet, still clicking on everything so I know. It is SO nice to talk to people who do understand, family and freinds just dont get it. They know you hurt but have no idea what its really like. This morning I took pain pills at 10am, went and took a shower, did a few dishes and back on the couch I am. So much pain and presure in my neck, shoulder area. I dont get alot of terrible headaches, just have a little one most the time. But I do take alot of ibuprofen so who knows. I just hope and pray that this is the doctor I need, anxious for my appointment. Do you think I should take a copy of my mri's or just let him do new ones. The ones I have were done at a rinky dink small town hospital, where im going they have all the new technology more so. Even talking for to long causes me pain in the neck, ugh. Thanks so much, this site is awsome for support.

[selmaS]

Hi and welcome to the Chiari/Syringomyelia forum.

It is unfortunate but many drs many of us see mis dx us with conditions like fibro, lupus..etc...and they tell it is not our chiari or syringomyelia is not the cause of our pain/symptoms.

The forum here is for u to vent , crab, get it off ur chest...and know we all understand : )


   "selma"

[pm64]

Hi Ray, thanks for your input, all this is just crazy. And you can tell I dont know a whole lot about it. I just know when I lift anything it can take days to get over it. And I feel like its all getting worse. The pain meds only take the edge off, I take them daily just to get thru the day. I wrote down all my symptoms that I could think of and the questions you suggested. If you think of anything else before thurs please let me know. Im so fed up with doctors that say its nothing to worry about. Ive said all along that I dont really feel I have fibro, maybe true, maybe denial. I just know my whole world was taken away from me and I hate not having much of a life. Im just venting, not crabin at you, lol. Take Care and Thank you so much!!!