cervical or craniocervical fusion

[irislita]

Been thru a lot tried pt,injections everything.the word has been put on the table and next year i am most probably to have cervical or craniocervival fusion...i am scared to death of losing so much mobility and that it wont help...but i jusy cant live like that anymore.

[Rahe28]

Iris, I am so sorry my sweet friend !!! I hope this is the answer you have been seeking and that it really does help. So sorry I have not been here. I miss you and our messages so much. I have not been doing so well. THe fatigue, and the headaches, the head pain, the tender neck, loss of roange of motion in my neck, and now the numbness is back in my hands. I am devistated to hear that you will need another surgery, but I am hopeful that this will help. I still think you have EDS as well my sweet. I am so happy to hear that you are going to spend some time with your family !!! Love and hugs to you my dear.

[irislita]

thank you all...actress so sweet to cheer me up.i would have craniocervical fusion to c3 :-( my 3rd vertebra on flexion falls almost completly out. i am now just thinking that i might be better with that :-*

[actressmouse]

I was scared too....but I'm so very glad I went forward and had my fusion along with the decompression....no more headaches, sleep improved dramatically.  
Stay strong.... :)

[selmaS]

  So glad u r able to recharge....

     <3

[irislita]

i just booked the flight and feel better just from that.i will have my time of and then be able to fight more...wow never thought i could be so exhausted from sth like this...hugs for all of u

[selmaS]

  ((hugs)) u do need ur family and I hope that helps u with so much more then just the physical issue u have..u need the emotional strength to push forward too...and this visit will reinvigorate u...

keep us posted <3

[irislita]

I hope so too.i called my daddy crying and crying.which i have never done!!! I told him i am so exhausted.he was sooo sweet.i cant wait to see my family and dog...i really need them now.thank u sooo much.i will try to get deeper into eds with my doctors

[selmaS]

  Hi...sorry u r still having these issues...and I know it is not an easy decision especially since u can not get a EDS dx from Drs.....

Take a break,m use ur collar and relax...

Hoping ur Dr is able to come up with some ideas that will help <3

[Rylanesmom]

With what you have said previously and since the collar helps it really makes me wonder...  I am glad your Dr. is willing to look into it.  Have you tried printing different documents on EDS and what it does and taking it to the Dr.?  That is often how I get them to take me seriously as they really don't know what it is and often dismiss you.  It is a big deal and can absolutely be what is making you feel bad.  It sounds like they are finding you need the fusion and not finding the cause. (which would still result in you needing a fusion it sounds like) hugs and prayers!

[irislita]

Good luck for u and ur daughter,really!!!!i am praying.i mentoined eds but nobody sees it as an issue,but i know i have some type of eds for sure.my orthopedic doc is soo loyal to me and almost like a father.he tries everything to makr me feel better.he is looking up ns with me tomorrow.i will spend xmas with my family and will start the journey next year.i need a little break to breathe....keep us updated about ur family

[Rylanesmom]

iris were you ever diagnosed with EDS?  I know it came up in previous discussions and I know this is something used to treat EDS.  I think that is how we often end up choosing surgery...can't live like this anymore. Hugs and prayers.  My 14 year old has been diagnosed with cranial instability and EDS.  (no chiari...as far as I know....for her)  We are seeing the spine clinic at children's mercy today.  I am hoping there are other options for her.