OPLL

Looking for people with OPLL

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I have just found out I have have OPLL, also have discogenic disease and arthritis in my spine. I have had 3 spinal surgeries in my lowere back. My neck started really hurting badly about a year ago and was getting worse really fast. I thought the discogenic disease was getting worse and was really surprised to find out I have another disease in my spine. I am a 60 year old white female and have been dealing with terrible back pain since I was 18. It took many years of the doctors thinking it was all in my head, finally the discogenic disease was seen and the arthrits as well. I have been told by my surgeon Dr. Park at Stanford that this is very serious and is rather rare. If any one has OPLL I would like to hear from you. I don't know of anyone who has all three diseases in the spine at once.
Thanks, Nanajani

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hi nanajani,
There are other posting about opll already on this site, so please look them up and u will c that a lot of us are dealing with opll. And, we would like for you to join us

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i am diagnosed with thoraxic opll and i would like to share with u my experience

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i am malaysian.female 56yrs.i was diagnosed with thoraxic opll 4yrs ago.at that time iwas having chest compression and spasm from chest down until i cant breath.i had sugery done.laminectomy and fixation fr T1toT6.Imediately after op i become paralysed.i am suferring fr severe pain and spasm everyday.even with medication the pain is unbearable.most of my life i spend in my room

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Dear Hally, I have opll and ossification of the ligamentum flavum and facet joints throughout my thoracic spine. I have had pain in my middle back for a couple of years, and was disagnosed a few months ago with all this stuff in my thoracic spine. I have OPLL in my neck as well and had surgery c2-27 in 12/06. I good portion of the operation was called a laminoplasty from c3-c6. At levels c2 and c7 I had a partial laminectomy according to the surgical notes from my Neurosurgeon.
After the middle back started hurting back this past October, then I started getting tinging/heaviness/numbness and weird creapy crawling symptoms off and on in my chest that radiates around my back too. I had my heart checked out to make sure it was ok and it was. I have had two steriod interlamina THORACIC injections this past month. The last one was last monday, Feb 22nd, 2010. Seems like the episodes in the chest are not happening as frequently in the chest, however I had a painful spell that affected my breathing last Wednesday, Feb 24. I decided I was feeling pretty good last Wednesday and decided to clean a 8 feet by 11 feet rug with my carpet cleaner. Not a very big rug really and would be like vacumming. I cleaned have the rug and the pain in what seemed the middle of my middle back started. Dummy me wanted to get the rug done, so I kept pushing and pulling on the carpet cleaner for a few more rows. I had to stop because the pain wrapped all the way around my back and front of me on both sides of my ribs and I could not breath if I tried to continue to push and pull on the Carpet Cleaner. All I could do was sit down and not move at all for hours so I could breath. I couldn't hardly move the next day without pain and trouble breathing. Each day has gotten better since then though, and right now I am having pain in my back, but now pain that felt like it has for months and not affecting my breathing. I have had a few other days where my ribs hurt too and it hurt to breath, but last Wednesday episode was the worst so far as far as struggling to breath. The Wednesday cleaning episode felt like somebody sqeezed
me so hard around my middle that I couldn't breath.
You are the first person I have found on the internet with the thoracic opll in alot of your thoracic spine. I have found another site with 8 other people that have opll but they all have opll in the cervical spine mainly. A few have the opll like at t1, but not at other levels of the thoracic spine. You can find these people if you go to Goggle page and look for google groups. Then search for OPLL at Goggle Groups.
I am being told by my Neurologist and my Neurosurgeon that there is crowding throughout my thoracic spinal column, but that I do not need surgery for the thoracic spine yet, because my spinal cord is not being compressed to much yet. After reading that you are paralzyed and in more pain since surgery, I am really discouraged to think about having surgery. When did you have your surgery? You stated you had a laminectomy i believe. Did they put any metal or rods or anything besides doing the laminectomy? What area of your body is paralyzed? When did the paralzing happen. I have so many questions. Have you been to other surgeons since your surgery to see if they can do something to improve your symptoms? So glad to find you here. Hope you see this and get back with me. I am a fifty year old woman who lives in Kansas in the United States.
Pam.

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Hi i have OPLL, and hello hally. i have opll thruout entire spine cervical at c2 and c3 and THORACIC. its pressing down on spinal cord and the dr says its too excessive and too extensive and they cant do the surgery. i live in tennessee, ive only found one other person in my area that has opll and strange but we went to school together,but hers is no where near as bad as mine. im frustrated because they say get used to the pain meds u will be on them for life but thats all we can do for u. they have tried all the injections in upper and lower spine and none helped more than 2 days. they tell me i will be paralyzed in all four limbs. i also have a tumor in my neck and because of opll its too risky to go in and check so they have to watch it for growth. ive read lots of stories from the surgery helped to the surgery made them worse. but not even given the option really makes it hard.i have a strong faith and a terrific family but even they have their limits and are all having a hard time as well. my little girl is only 6 and not being able to do all the mother/daughter things with her is heartbreaking. then i have a 21 and 14 yr old boys that are special needs. the pain is unbearable most of the time now even the pain meds only work to an extent. i do however love to get on the computer when i can and reading about your stories are helping me. im so sorry that anyone has to go thru this, but it does help to know im not the only one.

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hi Nanajani i also have all 3 i am 45 and just found out about theopll i also have had back pain and was alway told to get over it for it was all in my head i know what you are going trow i wish you the bested
mayze

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so now ive been down for two days with new symptoms severe hip and leg pain. it hurts so bad to even move just laying here with hope that i can get myself to dr tomorrow and seriously thinking about going to e.r. the pain meds are not helping,i hurt so bad,,,my 2 youngest and myself have fever they have to go to dr in morning so i hope i can get them there. i hate not being able to do the things i need to do.

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Hello!

My husband has OPLL. I never thought to look here for it! He's had two anterior cervical repairs and two posterior cervical repairs. He's fused from C4-C6 and has a strut graft (from Dr. George Sypert, the inventor of the strut graft!)
He's pretty stable now.

~~shimfee

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