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Has anyone have experience with OPLL (Ossification of Posterior Longitudinal Ligament)

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Posted 4/9/2009 2:40 PM (GMT 0)
Thanks for reply George. I live in Oregon. I also have a congenital fusion which may be putting pressure on the disk above and below. I am fairly frustrated by my previous NS. He knew That I had a congenital fusion but during a posterial foraminotomy I had last June (suppose to be least invasive) he had to do interoperational xray and still couldn't figure out with area to decompress. He ended up cutting a 4.5 " cut in the back of my neck. I got about 50% decreased radiating pain initially but my back/neck never did feel any better. And now its all back to the same as before. I do have intermitent tingling in my r arm and numbness of my left hip thigh. Could this be from OPll? I do show inflamation in both shoulders, left hip, both mid feet and my cervical spine area on my bone scan. I think this is just Osteo. i am fairly frustrated and would like to really figure out what is going on what I can do to increase my wellness. Right now I am the breadwinner as my husband had double bypass, he can work but his business is slow because of the economy. More later as i must work.
Nancy
Posted 4/10/2009 2:44 PM (GMT 0)
Hi Nancy,
I was frustrated by my first neurosurgeon. He was very arrogant, and had no rapport with people. At my 2 week post op visit, he informed me he was moving to Atlanta. I was fortunate enough to follow up with my present neurosurgeon, Dr. Skidmore. He is very compassionate, and actually listens to my complaints of symptoms- this helped him decide where and what is being compressed by OPLL, along with MRI and physical examination. With my last c-spine surgery in 2007, he was going to try to do a foramenotomy to decompress my lateral nerve roots, but couldn't due to extensive stenosis. He knew his limitations, and didn't endanger me, trying to decompress my nerve roots in a very tight space. I have had some deficits with my hands and feet, which have been there on and off since my first diagnosis of OPLL.
You ask about tingling in your right arm and numbness in your left hip and thigh. Yes, these could come from OPLL. Before my first surgery with Dr. Skidmore, I had intermittent numbness and tingling in both hands- it was driving me crazy. He prescribed Neurontin for me- it helped, but my co-pay was $50. After a few months, the numbness was more tolerable. I put off having surgery for about 2 months, because I was worried about losing my job. By the time I consented to have the surgery in Feb. of 2004, I could barely walk, was dizzy as a drunk, and had a feeling of a sunburn on the right side of my upper back. These were all caused by cord compression from OPLL. After the corporectomy, my left deltoid muscle wasn't firing- I could move my left arm, but couldn't lift it above my head. I had an emergency CT after I awakened in recovery and this was discovered. The CT scan was normal- the hardware was where it was supposed to be. Dr. Skidmore thinks the sudden decompression of the cord caused the temporary paralysis of the deltoid. I had PT to regain use of the left deltoid, and by my 3 week post op visit, I could lift my arm over my head. The left deltoid remains weak, but I can use it to reach and lift small weights above my head. Because of the compressed lateral nerve roots, I have lost some of the function in my hands(fine coordination) and I am disabled because of this. I drop things at times, and it can be frustrating, but I think of others who are not as fortunate, and it sets me in the proper frame of mind. I receive SSDI, and my wife works and carries our health insurance. Our son is nearly 16, and has had to take over my jobs around the house. He is a blessing, and doesn't complain, because he knows that I can no longer do these things. If you are frustrated by your neurosurgeon, can you find another in your area of Oregon? I hope and pray that you can find someone to help you find some relief and comfort. Hopefully, your husband's business will pick up, and you can have some of the stress removed from your shoulders. Be well, reduce your stress, and keep moving and stretching- I find this helps me.

Big George
Posted 4/10/2009 3:29 PM (GMT 0)

Big George,

Thanks for your support and help. You have really had some complicated surgeries. I will go to the websites that you listed. Did you ever have watering eyes and blurred vision? Mine water at night. I've noticed puffiness beneath my eyes too? I thought this was from working on computer all day.

Thanks again!

Birgitta

Posted 4/10/2009 6:50 PM (GMT 0)
Wow George you have been through a lot. Its really nice to hear from someone so positive as you seem. Some days its so easy to be negative when life throw you a curve. I wish I could find a NS or some kind of Doc who understands OPLL and the other problems that I seem to have. My PCP is willing to help with pain control and refer me to other specialists. In the US it seems most docs are specialists and its hard to find someone to look at the whole person and figure out whats going on. Gosh I wish that I could retire soon! Sorry, I am having a bit of a pity party today. TGIF 2 days to rest and enjoy the family. I also love camping. We have a travel trailer and just got back from a 10 day trip to sunny Arizona. I really look forward to getting away and relaxing. Have a great weekend.
Nancy

Brigitta,
I have been researching OPLL for awhile. I haven't seen any symptoms of puffy or watery eyes. I do have the same problem though. I think mine is allergies and/or maybe some kind of autoimmune condition. There are some interesting research articles at http://www.ihop-net.org/UniPub/iHOP/bng/93476.html?ORGANISM_id=1 if you like to read med speak. You may have to type in the search OPLL. Have a great weekend!
Nancy
Posted 4/10/2009 8:20 PM (GMT 0)
Birgitta,
I agree with Nancy, I think it might be allergies, as this is the prime time. I have had asthma and allergies since I was a child-controlled with an inhaler. My son also has allergies- his eyes get watery and puffy when he is around cats. I just get watery eyes that tend to itch- I use eye drops and they help. When I was first diagnosed, none of my family and friends knew what OPLL was, and I felt all alone. It has been therapeutic for me to post on this site. I have started an OPLL cause in facebook, and I hope to get OPLL some publicity. The link is : http://apps.facebook.com/causes/266734?m=714b0a78 Be well, and have a wonderful weekend,

Big George

Nancy,
I have been through a lot, but I am not going to let this disease get me down. I have learned to adapt. I used to think I was like Superman, and have been humbled by my limitations. I now have learned to ask for help, and my friends are willing to help me-no questions asked. I am truly blessed. I can't tilt my head back to look up at the sky, but if I lay on my back in the grass or on our deck I can see the blue sky and watch the airplanes leave their jet trails across the sky. I use a grabbing stick to get things from the higher cabinets in our kitchen. I can't stand or sit for any length of time, but if I recline or lay down for a few minutes, I can get up and go some more. I love to spend time camping- I think campfires are therapeutic. I am happy to hear you went to Arizona- sometimes sunshine and fresh air are therapeutic, as well. I am able to drive, and I have a handicap parking permit, which allows me to park closer to the door, and I use a cart like a rolling walker to walk throughout the store. We are all entitled to our little pity parties, but you can't let the party go on for a long time. Be well, and Happy Easter.

Big George
Posted 4/11/2009 6:49 PM (GMT 0)

Hello.

  I have just been diagnossed with OPLL (yesterday). I have already had an Anterior Disectomy with Fusion due to and injury that compressed my spinal cord at C6 approximately The injury occured about 2 1/2 years ago with an asymptomatic presentation and after finally finding where the problem was steming from surgery was preformed 2/07. With symptoms returning intermitantly after Decmeber 08  I followed up with my Dr, a CT and MRI were prefomed, besides finding that the fusion has a non union posteriorly it has also showed the OPLL. Needless to say I am a little frustrated. I am 42 years old and a county paramedic, needless to say I have a job that requires me to be to very active and do a lot of lifting. I am also currently going to school for RN, and now feel like this is going to "derail" all my plans for the future.

Thanks for listening I dont mean to wine,

Posted 4/11/2009 8:07 PM (GMT 0)
Hey, Watchguy
What has your Doc. decided to do for your OPLL? I don't think everyone needs surgery for it immediately but you do seem to have some other problems that will probably need treatment. Have they told you how much OPLL you have? Does it cause you pain or other symptoms? I am still having a hard time finding a Doc. who seems to be knowledgeable about this condition. I had OPLL before my surgery, not even one yr ago but now I seem to have it in my thoracic spine also. Keep in touch and try to not stress to much about it. Whine if you need to we understand!
Nancy
Posted 4/12/2009 1:06 AM (GMT 0)
Thanks for responding Nancy, My Dr want to fix the non union from the first surgery by adding two screws posteriorly to C6 he said that as far as the opll it was something we would worry about in the future (I dont know how long in the future as I ususally dont think to ask those questions till after I leave the office). I have read that it cannot be observed on an MRI until it is 5.4mm in width, and it was not present on the MRI 2 years ago. I would highly recomend my Doc he is here in northern Delaware about 20 minutes outside of Philadelphia. I have a constant ache, annoying mostly, feel weak alot in the morning when I get up and late at night (when fatigued) I just feel like its tough to move, like I am moving in slow motion, but the worst is the extreme numbness in both hands and fingers...it seems to be profoundly worse when exposed to cold, cold weather, drinks in my hand, ect. I have also found that I seem to have a diminished ability to type...its like my fingers have a mind of their own. I use to be pretty proficent and type almost 50-60 words a minute but now I am always hitting the wrong keys...I dont know maybe its just my imagination.. Oh yea I dont know if its related but when I get up sometimes I get very dizzy and on a couple of occations I have ended up on the floor.
My original symptoms were extreme weakness of my left leg and it would spontaniously give out on me resulting in my falling to the floor without warning and upper extremity numbness/weakness.. I would also like to blame my spelling of whine like the drink earlier on the illness but I think it was just lack of proof reading........lol
What symptoms are you experiencing and how did they find the extension in the thoracic region? (symptom changes or preventitive testing?)

George
Posted 4/12/2009 9:35 PM (GMT 0)
Hey,
When I went to my new Neuro I asked him to check my Thoracic area too because my previous MRI said he wasn't able to determine what was going on at T-1&T-2 because it wasn't taken in all planes but something was there. I don't think I am going to get any answers from this Neuro but I think I will see what the EMG says then get referred to another Neurosurgeon. I am worried about going back to NS because I am not really looking forward to another surgery. I am the insurance carrier in our family. I do have summers off but I really don't want to spend it recovering again. I am trying to be in denial. I will write more later as I am making Easter dinner. I am really glad we all have found each other here because it is lonely and frightening not having people who understand.
nancy
Posted 4/13/2009 5:44 PM (GMT 0)
Hello watchguy,
Are you a George also? Welcome to our little group. Is your surgeon a neurosurgeon? Most docs do not know how fast the OPLL will progress- everybody is different. My neurosurgeon hoped it would be several years between surgeries- he didn't know he would be doing more work on me within 2 years. I know your symptoms- especially the numbness and dizziness. When I first started having symptoms, we had just returned from a cruise in the Caribbean, and I attributed the dizziness to the ship's motion. However, it persisted for several weeks, instead of just a few days. I went to an ENT, and he couldn't find anything wrong with me to cause the dizziness. I worked as a microbiologist in a clinical setting, and after my last c-spine surgery, lost the fine coordination in my hands ( it is difficult to pick up a coin, separate the pages of a book, and take a credit card from my wallet)- that left me disabled as I couldn't do the intricate aspects of my job, and have difficulty walking or standing for any length of time. My disability went through without having to appeal- that is incredible in this day and age. I have had to make some changes in how I do things, and I have had to ask for help, but I am truly blessed to be here and hope that I can make a difference. I continue to drive with some modification and I can enjoy life- even if my life has changed. I hope your surgeon gets your hardware fixed, and you can get some relief from the cord compression. I find that if I recline or lay down, it takes some of the pressure off my c-spine, and helps relieve some of the symptoms. We are here for each other, because with OPLL, you can feel isolated- it is so rare in caucasians. You can find a great deal of information about OPLL on the internet,and hopefully it can give you some insight as to surgical treatments. Be well.

Big George
Posted 4/14/2009 1:18 PM (GMT 0)
Hey Nancy,
Is there more than one neurosurgery group where you live in Oregon? There are at least 2 big groups here in the Greater Cincinnati area. My doc is in the Mayfield group which consists of about 20 neurosurgeons, interventional radiologist, neuro intensivists, pain management, physical medicine and rehabilitation,and nurse practicioners. These docs practice at all the major hospitals in the area. I hope you are as fortunate as I, when it comes to neurosurgeons. I can't say enough about Dr. Skidmore- I credit him with keeping me walking through life. I hope you had a great Easter.

Big George
Posted 4/17/2009 9:53 PM (GMT 0)
Hello Everyone,

Thanks for all of the information. It really helps to know that I'm not alone. I did find an article titled Disorders of the Cervical Spine: http://www.wiserwiki.com/Disorders_of_the_Cervical_Spine

The article did bring up eye symptoms similar to what I've been having. I've never had allergies before, but do know they can occur at any age.

Lately my left shoulder blade has been itching. No bites, bumps or marks are present. Other than that I've been staying about the same. Right shoulder hurts at night, neck hurts at work, right foot hurts and I get tired easily.

Is there anything that can slow the progression of OPLL other than surgery? Are there different rates of growth for the ossification of the ligament? I've seen some average rates for the diameter and longtitudinal growth, but have been wondering about this. I know weight bearing exercises help to form bone. Are there exercises that should be avoided? I'm assuming the OPLL keeps us from doing those types of exercises. Are we really born with a recessive gene or is this aquired or both?

After surgery were any of you able to go up and down stairs? I live in an apartment on the third floor and there is no elevator. The San Francisco area is so expensive. Also, I'm the major bread winner. If I were to have surgery, I doubt I could afford to live here while recovering. I gave up my car after the auto accident, but wonder if I'm going to need one to get around after the surgery. What about sleeping after surgery? Did you need a hospital bed? If I have the surgery, while I be disabled or can I return to work in a few months?

What were the symptoms that you just couldn't live with before having surgery? I know balance and walking was a big one, as well as pain. What about sexual, bladder or bowel disfunction? What one happens first?

It seems with this OPLL there are so many symptoms that are similar to other medical conditions. I feel frustrated and have a terrible sense of doom. It's like a big black cloud is over me and everything is about to change.

I really appreciate all of you and thank you for your thoughts, prayers and advice.

Birgitta

Posted 4/18/2009 4:33 PM (GMT 0)
Hello Birgitta,
It's interesting that this can occur to the eyes, since the optic nerve and vision center reside in the brain. OPLL can cause many different symptoms, because no two people are exactly the same ( there are minute differences even in identical twins). I know my symptoms were weird and difficult to describe to my neurosurgeon. I had the feeling of a sunburn on one half of my back, near my scapula. I thought my dizziness was coming from my inner ear, and was told by my neurosurgeon, that it was probably from compression of my cervical cord and brachial nerve plexus. I can have dizziness, if I turn my neck too far or turn too quickly, but I don't let it hinder my life. The itching is another symptom, that I had, along with numbness in my hands and forearms. I was prescribed Neurontin, which helped for a while. Now that I've been decompressed at several levels, I don't have as much numbness ( only the tips of my fingers and toes), and not as intense. I have learned to live with it, now that it is not as severe.
After surgery, I was able to go up and down stairs, but had to wear my cervical collar, and was told to be very careful. Your surgeon and the nursing staff will give you information when you are discharged from the hospital. For the first week or so, I had to sleep in a recliner, as I had muscle spasms in my upper back and shoulders. After that, I slept in my own bed. Pain medication and muscle relaxers are given in copious amounts to help you through, and every person is different. I was able to remove my c-collar to shower, and while resting, as my wife washed the removable padding- it can get a little funky from sweat and body oils. I was able to return to work after 3 months and was able to work for 2 years, until I needed more surgery.
As for bladder and bowel problems, I haven't had any, other than getting up in the middle of the night to empty my bladder- I look at that as part of the aging process. I am a diet controlled diabetic, and I know I don't get enough cardiovascular exercise, but I walk a little, and can go up and down steps slowly, because of the arthritis in my knees and hips. I don't know any information about slowing the progress of OPLL, and surgeries are done to decompress the spinal cord an keep you functional. I know the San Francisco area is very expensive- I live in the Northern Kentucky/ Cincinnati area, which is much more affordable. We have several great hospitals- University of Cincinnati is world renown
for research and training. My neurosurgeon, trained here, knew about OPLL, but didn't have a patient with it until I came along. The Mayfield Neuro group is the top group here in this area.
I went as long as possible with the cord compression before I had my corporectomy and fusion. By the time I consented to surgery, I could barely walk and couldn't walk in a straight line by the end of the day. I was exhausted by the end of the day, and had to lay down when I got home from work. My stenosis and compression extend to my lateral nerve roots, which couldn't be decompressed without doing more damage to them. I have lost some function in my hands, and I am disabled because of this, but I manage- I continue to drive, and can get around. Don't despair, everything will be better after surgery- sometimes it takes some time to heal, but it will be better than suffering with pain and all the weird symptoms caused by the cord compression. I will continue to keep you in my prayers, as I do with all of the people in this thread with OPLL. Be well, be strong, and get better.

Big George
Posted 4/20/2009 2:30 PM (GMT 0)
Hey,
I went to the Neuro for the EMG. All he found is some signal in my elbow area. He said emg wasn't good at checking out the shoulder. He had me turn over because he was going to try to check my neck but when he saw the scar he said that because I had surgery the finding would be unreliable. He showed me my MRI and said he only sees min. to mod. compression and that wouldn't cause my symptoms. He recommended that I see a Orthopedic doc. The only one he knows is in the same clinic and doesn't seem to have spine on their website. I just don't know where to turn next. I could got there and see if I have a shoulder problem that is causing radiating pain and tingling? I really would like to get some answers. Have anyone found PT to help. I have done it 3X before but not recently. I may try a different clinic to see if they can teach something else.
Nancy
Posted 4/20/2009 5:22 PM (GMT 0)
Hey Nancy,
It seems your neuro doesn't want to help you. EMG's measure nerve transmission, and if you have cord compression, the nerves are being overworked. I didn't have an EMG, but my wife did, when she had a disc problem in the mid nineties. Is your neuro doc a surgeon, or neurologist? If I was in your place, I would look for a reputable neurosurgeon. OPLL can be treated by an orthopedic surgeon, who has experience with spinal surgeries. It seems like this guy is giving you a runaround. PT helps if it is merely a disc herniation causing nerve pressure, but if you have OPLL with cord compression, you need to be decompressed in order to find relief from the tingling and radiating pain. Have you tried a search on the net for a neurosurgeon in your area? I would search, and find a reputable neurosurgeon. Good luck.

Big George
Posted 4/21/2009 12:17 AM (GMT 0)

Big George,

Thanks for sharing. You have been very helpful. Thanks again.

Birgitta

Nancy,

My neurologist is Dr. Leslie A. Gillum at UCSF in San Francisco. She is great and very thorough. One of my co-workers recommended her to me. My co-worker doesn't have OPLL, but did have a laminectomy and is walking around and doing real well. I believe USCF is the 4th best in neurology and spinal surgeries in the United States. Dr. Gillum referred me to Dr. Praveen Mummaneni at UCSF Spine Center. I still need to do some checking on him. I plan to get a second opinion too. I'm going to my primary and plan to ask him who he would recommend.

My mother had a laminectomy in Spokane, Washington last December. Her surgeon was Jonathan Carlson. Dr. Carson is very young, but did a good job on Mom. Mom was diagnosed with cervical stenosis only after she began to have trouble with walking and took a bad fall in October. She began having serious problems in November from a concussion from the fall and then fell again in December. I think she feels stronger now. Her recovery has been slow due to the head injury. Her stenosis if from degeneration. I have an Aunt who lives in the Seattle area. She had spinal surgery last fall. If you are interested I will try to find out who her surgeon is.

I travel through Oregon on my way to North Bend and Spokane, Washington to see my grown children, grandchildren and parents. Oregon is a lovely state. I really love Silver Falls State Park.

I wish you the best!

Birgitta

Posted 4/21/2009 5:31 PM (GMT 0)
George and Birgitta,
I went to a NS last spring and he didn't seem concerned about OPLL. He also didn't really want to talk about it. My surgery last June was suppose to reduce my symptoms. (C7-T1 Formaminotomy) Initially they were 50% or so better but now its the same as before. I am reluctant to go back to him because he had some trouble during my surgery and I feel that he could have been a little more prepared. I don't want to make a big thing of it but I don't really trust him. I am not really wanting another surgery but definetly some guidance on what to do or where this radiating pain/tingling is coming from. I do have extensive Arthritis in many of my other joints and go to a Rheumatologist. I am taking a inflammatory Arthritis drug. I can't take NSAIDs because they make me have stomach trouble, BP increases and they aren't worth the risks. I am able get by taking a few Percocets or Ambien in the evenings so I can sleep. Should I be waiting until it progresses farther to get some help? I must work or we won't make it.
I do so much love living in Oregon but it can get a little dreary with all of the rain. Not today though 80 degrees!
Nancy
Posted 4/22/2009 1:07 AM (GMT 0)
Nancy,
When was your last MRI? My OPLL wasn't diagnosed until a year after my first MRI and was very pronounced,where the initial MRI showed no ossification. Do you have short term disability insurance? That, plus my wife working, paid the bills for us with my surgeries. I went as long as possible before my corporectomy and fusion, which may have been too long- I kept working,because I was afraid of losing my position. I could barely walk, and was extremely dizzy by the end of my workday. It was extremely difficult to walk up stairs- my legs felt like they had 40 lb. weights tied to them. I had shooting pains down my arms, when I sneezed,or coughed- along with the numbness and tingling in my hands and fingers. I think I waited too long,as my deltoid muscle didn't work after surgery. My neurosurgeon thought it was due to the cord compression for such a long period of time- and then the sudden decompression left me with a left arm that couldn't be raised above my head. I could use my hand and forearm,but couldn't raise it above my head. Therapy, and a lot of prayers, allowed me to raise my left arm over my head after 3 weeks. My left deltoid muscle is working, but somewhat weaker than my right side. I feel for you, but you have to make the decision whether you should have surgery, and if you don't feel comfortable with your current docs, you should seek second opinions from another group. Keep looking until you find someone who will take care of you. Be well, I will keep you in my prayers, enjoy the warm weather- it's coming our way for the weekend- 1st camping weekend of the year!

Big George
Posted 4/22/2009 2:28 PM (GMT 0)
George,
OPLL showed on my MRI 1 year ago in cervical. My last MRI showed it cervical and T-1 &T-2. The Neuro said he didn't see any problems. Some of the symptom you have stated do seem to be a lot like mine. I have ringing in my left ear. It usually doesn't start until 3 in the afternoon. I wake up stiff and with my left arm asleep often. I purposely don't sleep on my left side and prop it with a pillow. My neck was really stiff this morning but it seems to be feeling a little better since I ROM. By about 2 or 3 my hand is tingly, my shoulder/neck hurts. This what happens nearly everyday. I sometimes also have pain and stiffness in my R shoulder, L hip and both mid feet. I think I will go back to a NS. I don't really know what a Ortho would do. Thank you all for your advice.
Nancy
Posted 4/23/2009 12:42 PM (GMT 0)
Nancy,
I agree. It sounds a lot like my symptoms. I think you can get some relief after decompression. You just need to find a neurosurgeon who is willing to help you. My problem is, they can't do a foraminotomy where my lateral nerve roots leave the spinal column. I have some deficits, but have learned to adapt and live with them. If I sleep on my left side, I awaken in the middle of the night with numbness in that hand- flexing and extending my fingers helps. I also sleep with a pillow between my knees, which keeps my hips in a neutral position. I use one pillow for my head- I try to keep my spine in a good alignment- not too flexed or extended. When I couldn't get comfortable in bed, I would sleep in a recliner. My best wishes, and prayers are with you.

Big George
Posted 4/24/2009 6:52 AM (GMT 0)
Hello,

Today I was diagnosed with OPLL. Which was a shock because, I rarely go to the doctor. In October 2008, I started having trouble with my left hand. I would get these weird cramps and then the numbness began. I went to a workmans comp. doctor who wanted to check my neck because he believes that when something is out of sorts in an arm or leg that it is probably do to something out of alignment in the back. So he turned my neck to the right and up a bit, and well the whole room went white. So he set me up with an MRI. To my surprise he diagnosed me with a herniation of c2 & c3 & c4, and also that it looked to him like I had arthritis throughout my spine. He waited till Jan 2009 and 4 visits later to refer me to a neurologist who was wonderful. She ran a nerve conduction test, which showed normal. Did an endurance test which was normal but was concerned about the MRI I had taken in Oct 2008 & wondered why I didn't come see her sooner. She ordered an CTmyalga*** (dont know how to spell it sorry) that she was concerned enough to refer me to a neuro surgeon. He is who I saw today, and he is the one who named my diagnosis. OPLL. I have never heard of such a thing. There was no herniation. He was quite curious about my condition. First of all I am a 39 year old Native American female. And even though I gave him my body complaints, my legs feeling heavy by the end of a 10 hour shift, the lack of strength in my hands and arms, he didn't feel those symptoms had anything to do with my OPLL. Yet in his next breath he says I will know when my symptoms get worse because I will have difficulties with my arms and legs! He pounded on my knee's with a rubber malet, then on the back of my ankles which neither moved very much @ all. It did hurt though and I told him so. I am scared. He says that I don't need surgery right away but that I will probably need it in 10 to 15 years. That because I can function on "excedrine" and go on with my day. That unless I get rear ended or fall on my head, or wrestle around,(which can and most likely will cause spinal cord injury) I will be fine until the disease naturally becomes worse. In looking @ the MRI & CTM we all saw that the spinal fluid was barely squeazing through as is. Do I say lets just go ahead and do surgery and face possibly becoming paralyzed or not having surgery and facing the same fate? Is this heretitary? I have two sons that I worry for. Sorry my spelling is so bad.
Posted 4/24/2009 5:16 PM (GMT 0)
I too am affected by OPLL, I am only 42 years old and I have had my first of four surgery's in October 2008. The first surgery has made everything worse. The pain, the tripping, I cannot hold onto anything without dropping it, the constant arm shaking, the extreme pain in my legs etc etc etc. All because of OPLL, I too am Caucasian and I could not be happier to find a doctor's name that knows something about OPLL. THANK YOU VERY MUCH! I have searched and searched and have come up with nothing. It was not until I entered California + OPLL that I saw your discussion. Here in Las Vegas there are very few neurologists and NONE of them know anything about OPLL. My spine doctor (not a neurologist but he is great) has been treating here in Las Vegas for 15 years and I am his first case. The health care here in Nevada is really bad. I had a bad reaction to medication that a neurologist gave me for migraines, I called the office and left a message. Called the next day and tried to get a hold of someone. Finally I had to go to my primary doctor to have him assist me with the drug. The Neurologist office still has not returned my calls and it is now going on 3 weeks.

I truly will look up Dr. Weinstein's information and travel to California (even though sitting for long periods is very painful) - I think it will be worth the pain!

James

PS I can code websites- very basic ones.....
Posted 4/24/2009 11:35 PM (GMT 0)
Welcome!
It's great to see we are not alone. I wish I had the answers you are seeking. I still have so many answers to seek. Lets all keep each other posted and hopefully we can learn from each other. I will post again if anything changes. Later next week I will go to my PCP and try to hash out who to see next. I need to figure out what to do to keep my pain in check and be a productive employee. Enjoy your weekend!
Nancy
Posted 4/27/2009 4:39 PM (GMT 0)
It has been a long hard week-end for me. Before Thursday, I had never heard of OPLL. Does anyone know if this is hereditary? I'm trying to decide if I should go ahead and have surgery or if I should wait till symptoms become worse? The other night while I was trying to get comfortable in bed I rolled from one side to my back and it felt like "thunder" went through my body. It's the only way I can explain it. Not really a pain, but a flex of electricity. It was quick, like a heart beat. Enough to wake me up for an hour!=) I'm finding I'm quite the insomniac these days! I work in a casino so I'm busy for about a 10 hour shift. When I explained my symptoms to my NS he said it sounded like regular fatigue.
I tried to explain that I'd been doing this work for a few years and this feeling of sand bags in my legs within 6 hours was new. My arms not wanting to extend to the middle of the counters, was normal to him. It was very frustrating. What are the risks of becoming paralyzed from surgery or the lack of surgery. I also was told that, I had to be careful and not have a car accident or fall and not catch myself because I am @ high risk of spinal cord injury. I'm normally not this emotional but, this week end I've cried a lot. I need to find my smile again.
Jamie Justine
Posted 4/27/2009 5:09 PM (GMT 0)
Hello Jamie Justine,
Welcome to our growing group. I once felt all alone with OPLL, but now I have some new friends with the same condition. My paternal grandmother was Native American, and I have wondered if the gene for OPLL is as prevalent as in the Asian population. I wonder if it could have traveled across the land bridge when our ancestors traveled from Asia to North America. I had a CT myelogram ( I think that is what you are talking about), but my stenosis was so bad in my lumbar spine that the radiopaque dye couldn't travel up my spinal column. I had severe neurological deficits- I could barely walk and had severe dizziness by the end of an 8 hour work day. As for your question about surgery, you have to make that call. You should rely on the opinion of a good neurosurgeon and how the OPLL is affecting your life. If it is affecting your everyday life and causing weakness, or pain, you should consider having surgery to decompress your spinal cord. As for the heredity, and how the genes are passed on to our children, the step by step heredity isn't known. Researchers have identified genes involved in OPLL,and DISH (diffuse idiopathic skeletal hyperostosis) which often goes along with OPLL, but they haven't figured out the mechanism of how and why these genes are expressed. Most answers can be found on the internet. Be well.

Big George
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