6mo Po. can anyone relate to this discussion?

My life has changed so drastically over the past 41/2 yrs.I keep going from hoveround to walking and back to the hoveround.i had my decompression on May 7th 2012 .Im about to undergo another surgery.Im having the L-4-5 fused in my lower back.I still suffer from the Chiari.I can’t hardly vacuume the floor.Im using one of those small electric brooms still.If I lift over 10 lbs it sets my Chiari off.It seems like anything I do with my arms sets off the arm and neak pain.I have went to 20 sessions of speech therapy and still have my Dysarthria spastic as well as atlas tic.Its alot better but not gone.My nerves are jumping pretty bad in my hands and feet.Its so hard to tell what’s what because Im bone on bone right now with a protrusion pushing on my nerve sac in my spinal colum.I have adhesive arachnoiditis pretty bad along with my malformation.How many people had a decompression where they didn’t put the basket in just cleared the hole and left the hurniation alone.Im just wondering why I still have these symptoms after such an ordeal.Its hard to believe that Im in this state.Constantly fighting.There were times I wanted to die.Today is better than that.There are days I want to do everything I do and I pay.When I do too much I go down for a couple days.I can’t win here.I still feel like Im losing the battle at times.I still haven’t made an eye or dentist appt.Shoot when do I have time.I told speech therapy I had to hold off till surgery.Even after that I won’t get to go.I have physical therapy to go to. Im sorry I haven’t been on here.Im supposed to be a greeter.I haven’t even been able to focus on my art work.Plus when I do I can’t sit to long because my arms and part of my drawing hand will go to sleep.+ my protrusion causes spasms lol everything dose.When I speak I have spasms the minute I start talking.Well there is some of it.Can anyone relate to any of this.Or am I being a baby?

Hi Twana,

No you are not being a baby. Have you ever considered nerve blocks or ablation for your neck & shoulder pain? The right side of my neck down my right arm doesn't hurt at all now. I think instead of a dental appt, maybe you should see an ENT since you are having spasms.

I know you have struggled so long. I am so sorry, you are such a kind person. Just know I keep you in my prayers.

Please keep us posted on how you are doing,

Tracy Z.


You are not being a baby. You are an amazing strong woman. Many people could not deal with what we deal with. I had surgery in 2001 and had a very short time of feeling better between a really difficult recovery and what I know now was scar tissue build up that completely blocked my CSF flow at C2. I spent years and years looking for answers and being blown off over and over again. I ended up giving up for a few years and then finally spending a year and a half getting answers. The key for me was a CINE MRI. I asked for one for years and was ignored and blown off. I should have changed doctors years before I did. Now I am trying to decide whether to have surgery because so much damage has been done and they don't know if I will see improvement.

The reason I tell my story is a cautionary tale. Don't give up there are answers out there. There are people that can help. Tracy and Emmaline have great advice. I would look for different doctors if the ones you have now aren't giving you what you need. We are always here for you.


Your not a baby, we are fighters! I agree with wendyanne, if your not getting answers or help, move on to a new doc! Ive struggled and am finally working out my unknowns! I had surgery in 09 and still have a big lump on back of my neck. After being blown off and not having a mri in over two years (cause I didn’t it) I said my goodbyes to current doc.
You have a lot on your plate and my thoughts are with you. Hang in there the best you can, one day at a time!