Jacque
Senior Member
- Messages
- 424
- Location
- USA - California
A Phoenix Rising member (Sushi) recommended that I post my experience on the Surgery for Chiari Malformation and Congenital Cervical Stenosis.
I have been ill for over 35 years and have been diagnosed with RA, CFS, FM, EBV, Hashimotos, Lyme, Biotoxin Illness, Chiari Malformation, and now ME.
I am one of those type A's that never gives up on a Correct Diagnosis... Came across a website abt FM being caused by Chiari Malformation. Got the MRI and had two "specialists" look at it and it confirmed Chiari Malformation and CCS.
I was so ill that I was happy to get the diagnosis...and quite honestly I would have let him cut my damn head off and sew it back on...to get rid of this, head to toe, constant pain.
My son is also in a lot of pain...had him get an MRI and his Chiari was worse than mine was. So we BOTH went in on the SAME day 2 1/2 years ago in Vegas, for our surgeries.
I had a 5 level laminectomy and my son had the brain decompression. TALK ABOUT STRESS!!!
Thank GOD we both lived through the procedures. My son ended up with Chemical Meningitis 2 weeks after surgery and was admitted back to hospital. It was HORRIBLE... Especially when I was dealing with all nerves and muscles in the back of my neck SCREAMING... A month of feeling like a swarm of hornets had landed on the back of my neck... There were not enuf pain killers for the pain of that surgery...and I have had a few surgeries.
So now I have the back portion of 5 of my vertebrae missing (essentially my spinal cord is now right under my skin just a ways..when I push gently it sends electric shocks through my body - SCAREY S**T!) I did have a LOT of migraines prior to surgery and they disappeared after surgery..only to return 1 year later, but not as many.
NOTHING...I mean NOTHING got better other than that... All I can say is that the surgery lit a match that I cannot put out!!! The surgery was the last straw for me. Have felt very close to death many many times in the last 2 1/2 years... All my life I have dealt with pain and suffering...but this has been BEYOND words... It completely set my immune system into a tailspin... and I don't know if it will ever be corrected.
Aside from that I now take the majority of pain meds bc of horrible burning pain in my neck...that nothing seems to help but opiates.
So, I have a few less migraines, but 10X the suffering and immune dysfunction.
My son....NO change really altho really don't talk about it because neither of us want to admit that it was probably a failure on both of our parts.
They cannot do both of the surgeries at once. I still need the brain decompression and my son still needs the laminectomy. I would literally DIE...If I had that done. And I will NEVER encourage my son to do this. The guilt that I carry as his mother passing this crap on to him is... HUGE.
I now believe what he really has is LYME and ME. He has all symptoms...but I just can't go there with him. He is 23 years old... cannot tolerate alcohol...is in bed by 9... has NO social life except hangin with his GF.
I am guessing I just didn't want to believe that I passed the Lyme spirochete to him invitro and thought the Chiari would be a quick fix... WRONG.
I did EXTENSIVE research before having our surgeries. I would NEVER do it again.....
If you have CFS/ME and are considering this surgery, I can only say based on our surgery that it is NOT going to cure your ME... and will in all liklihood make you much worse.
My surgeon just smirked when I told him I had CFS and Lyme... I asked him if it would affect those.. he said NO.... I want to say he is and IDIOT... however as you all know they are just IGNORANT about our illness.
If you do decide to go forward with the surgery, I hope your experience is more positive than ours was.
Jacque Simmons
I have been ill for over 35 years and have been diagnosed with RA, CFS, FM, EBV, Hashimotos, Lyme, Biotoxin Illness, Chiari Malformation, and now ME.
I am one of those type A's that never gives up on a Correct Diagnosis... Came across a website abt FM being caused by Chiari Malformation. Got the MRI and had two "specialists" look at it and it confirmed Chiari Malformation and CCS.
I was so ill that I was happy to get the diagnosis...and quite honestly I would have let him cut my damn head off and sew it back on...to get rid of this, head to toe, constant pain.
My son is also in a lot of pain...had him get an MRI and his Chiari was worse than mine was. So we BOTH went in on the SAME day 2 1/2 years ago in Vegas, for our surgeries.
I had a 5 level laminectomy and my son had the brain decompression. TALK ABOUT STRESS!!!
Thank GOD we both lived through the procedures. My son ended up with Chemical Meningitis 2 weeks after surgery and was admitted back to hospital. It was HORRIBLE... Especially when I was dealing with all nerves and muscles in the back of my neck SCREAMING... A month of feeling like a swarm of hornets had landed on the back of my neck... There were not enuf pain killers for the pain of that surgery...and I have had a few surgeries.
So now I have the back portion of 5 of my vertebrae missing (essentially my spinal cord is now right under my skin just a ways..when I push gently it sends electric shocks through my body - SCAREY S**T!) I did have a LOT of migraines prior to surgery and they disappeared after surgery..only to return 1 year later, but not as many.
NOTHING...I mean NOTHING got better other than that... All I can say is that the surgery lit a match that I cannot put out!!! The surgery was the last straw for me. Have felt very close to death many many times in the last 2 1/2 years... All my life I have dealt with pain and suffering...but this has been BEYOND words... It completely set my immune system into a tailspin... and I don't know if it will ever be corrected.
Aside from that I now take the majority of pain meds bc of horrible burning pain in my neck...that nothing seems to help but opiates.
So, I have a few less migraines, but 10X the suffering and immune dysfunction.
My son....NO change really altho really don't talk about it because neither of us want to admit that it was probably a failure on both of our parts.
They cannot do both of the surgeries at once. I still need the brain decompression and my son still needs the laminectomy. I would literally DIE...If I had that done. And I will NEVER encourage my son to do this. The guilt that I carry as his mother passing this crap on to him is... HUGE.
I now believe what he really has is LYME and ME. He has all symptoms...but I just can't go there with him. He is 23 years old... cannot tolerate alcohol...is in bed by 9... has NO social life except hangin with his GF.
I am guessing I just didn't want to believe that I passed the Lyme spirochete to him invitro and thought the Chiari would be a quick fix... WRONG.
I did EXTENSIVE research before having our surgeries. I would NEVER do it again.....
If you have CFS/ME and are considering this surgery, I can only say based on our surgery that it is NOT going to cure your ME... and will in all liklihood make you much worse.
My surgeon just smirked when I told him I had CFS and Lyme... I asked him if it would affect those.. he said NO.... I want to say he is and IDIOT... however as you all know they are just IGNORANT about our illness.
If you do decide to go forward with the surgery, I hope your experience is more positive than ours was.
Jacque Simmons