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Posted By : Jewlsy2 - 7/8/2013 10:45 PM
I was just diagnosed with OPLL. i am a 43 year old caucasian female. I am very distressed as I know nothing about this disease. I have had neck pain, shoulder pain, stomach pain that affected my nerves and also headaches for years and no one could figure out what was wrong until my recent MRI of my neck. If there is anyone who can talk to me about this or tell me if surgery is my only option I would be greatly appreciated. I just recently had a episode of sweats and dizziness and throwing up and I couldnt walk straight and it really freaked me out. Any info would be greatly accepted. Thanks

Posted By : teddybearweiser - 7/8/2013 11:31 PM
Hello Jewlsy2 Welcome to HealingWell,
I have never heard of OPLL. Somebody on here may no about it.
I just wanted to welcome you.
I was diagnosed with Crohns Disease 1992 . I also was diagnosed with Rheumatoid Arthritis.

Meds: Enbrel: Once a week injection, Vitamin B-12 injection monthly, Vitamin D :Once a week.



FORUM MODERATOR: RHEUMATOID ARTHRITIS

Posted By : Chartreux - 7/9/2013 7:16 AM
First so very sorry with what your going thru as it must be very scary for you, many prayers and well wishes on that.
This is a very rare disease of the spinal canal and you might get a better response in the Chronic Pain forum, as most of us in the CP Forum are dealing with back issues, some rare some not so much...so try reposting in the CP forum on here for better responses...Then google everything you can on OPLL Disease to find out more information.
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* So many dx's I could write a book* "It would be nice if we could use the edit button in real life"...
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Posted By : Chilliwack13 - 1/11/2014 11:07 AM
Hello Jewlsy2

My husband was also diagnosed in 2013. He is only 48. You are the first person I have heard or validate the dizziness part. He is cervical stenosis surgery a year ago and we could not figure out why he was not getting any better. A ct scan exposed opll. He deals with dizziness, chronic plan in his arms and legs and bad headaches. Has not worked for 26 months and not sure what will be next. The neurosurgeon does not want to do the opll surgery because of the risks and not so great expected outcome. It has been a long journey.

Posted By : maximuslee - 9/14/2014 9:55 PM
I had Opll in c2-3. Had surgery with dr. Joh institute back in 11/2013. Since it uses laser to penetrate ligament and remove ossification. I have no post op symptoms like fusion. I researched about the disease for a year and decided to get the surgery. Due to dr's mistake, I had two surgery in one day, but the surgery was the best option for me. I now can live normal life without losing range of motion in my cervical spine.

Brandon

Posted By : Lynda666 - 11/10/2014 2:56 PM
Hi
I have OPLL but in my thoracic spine T5-T8 which is even more rarer than cervical OPLL. I also have multiple spinal problems. I have only just joined this forum and have been looking for a support group. I cannot find much information on this disease. Would be nice to chat to others that have this.

Posted By : marti68 - 11/12/2014 8:50 PM
I just found out today that I do indeed have Opll. Surgery is scheduled for November 20th for posterior fusion and bone graft of C-1 to T-3. My neurosurgeon is in Savannah Ga and the only one familiar with this disease. My surgeon told me that my symptoms had worsened substantially in the past month and I am now having lots of difficulty walking. I am so thankful to have found you're group and I don't feel so alone. I will update you all with my progress after surgery and thank you all for your input and words of encouragement. God bless you all.

Posted By : marti68 - 11/12/2014 9:27 PM
I am also Caucasian, 46 years old. I have systemic lupus, autoimmune hypothyroidism, fibromyalgia and high blood pressure. Do any of you know if there is a connection between Opll and lupus.

Posted By : Jim Hill - 12/3/2014 9:17 AM
I am a 62 yr. old caucasion male. For the past 2-Years I had experienced increasing dizzyness, headaches, and numbness on left thumb and index finger. Both arms began to loose muscle, strength and coordination. I was diagnosed with OPLL in Aug. 2014. The calcification of the ligaments was choking out my spinal chord. On 9-24-14 I had spinal fusion of C3 thru C7. My doctor, Dr. Bono of the Michigan Spine and Brain clinic removed the calcified ligaments inside of the spinal column between C3 and C-7, remove 2-herniated discs, and a performed a laminectomy fusing 5-cervical vertabra. My surgery was posterior through the back of the neck. Now, 2-months after surgery I am feeling better. No dizziness or headaches.

The worst part was that going posterior was that they had to cut the muscles covering the spine. Post surgery my right arm was basically paralyzed. I have been doing light stretches and have regained approx. 50% of the movement of the arm. Now I am in physical therapy to get the shoulder muscles unfrozen. The nerves were not damaged, but the trauma to the cut muscles was very painful. Dr. Bono said with Physical Therapy, I will regain my mobility and strength.

I will get to where I need to be to function again so for those diagnosed with this condition there is hope. It is not without a lot of pain, emotional turmoil and work but I am hopeful of a full recovery.

Jim Hill

Posted By : Lynda666 - 12/7/2014 4:45 PM
Hi
Hope you are all doing well. I was supposed to have lumbar multi-level fusion and laminectomy. Was told on 1 August that i should have this op. Had my pre-op tests the same day and was told that the maximum time i would wait is 18 weeks. The 18 weeks has been and gone and ive had to put a complaint in as ive heard nothing. Its taken over 3.5 years just to have an MRI, some pain killers and a epidural injection. All this could have been done in one day, but no, the NHS in the UK is totally useless.
I dont have lupus so cant comment on if OPLL is related at all to lupus. I do have lots of spinal issues and cant understand why my surgeon wants to lumbar surgery when i have spinal cord compression in my cervical and thoracic spine. Its so frustrating as i cant seem to get any answers

Posted By : Ate Vi - 4/18/2016 8:15 PM
Hi to all,

New member as I call it, I am a Filipina (female Philippines) and living here in New Zealand. 50 years old.
My disease OPLL in C2 -C4 with stenosis in C3 with level 10mm was seen accidentally when I went through CT Scan because I had neck and shoulder pain resulting to bumping my head to scaffolding with no fracture in head and neck. Initially, the emergency doctor told my about the abnormality they found on my spine and it was not the result of my bumped but it was already there years ago.
I don't have any idea about this disease until I tried to research and also found this forum.
It has been years that I am experiencing only mild pains with my shoulders( GP said that this is only "frozen shoulders") and knees. I have an appointment with an Ortho tomorrow and this would be my first with him/her. I will give you an update tomorrow.

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