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

Hello Michael,

I was diagnosed with OPLL in 2003 and had surgery in 2004, which included laminectomy and fusion of my cervical spine, C-2 to T1.  My surgeon, Dr. Weinstein, performed the surgery at UCSF (Univ. of Calif. at San Francisco).  I can't say that I would ever want to endure a second surgery but I can say that I was very fortunate to have found Dr. Weinstein who is an excellent surgeon and a very pleasant dr.  Dr. Weinstein published an article about opll years ago, and he is probably one of the few drs. who is knowledgeable about surgical techniques for opll.  Before having the surgery I researched opll as much as possible but found that there isn't much literature on this puzzling and rare disease.  Nor are there many drs. who are even familiar with opll.  Since my surgery, Dr. Yonenobu, who is renowned in Japan for his research on opll, has published a second edition of his book on OPLL.  I have the book and have read most of it although it really is written for medical professionals.  Still, I would recommend that anyone with OPLL try to obtain a copy and discuss it with his/her dr.

What's your situation, Michael?

Jan

Michael,

Yes, it is helpful to finally communicate with someone who has this condition.  I would like to create a web site for OPLL but I haven't the technical skills or the initiative right now.  I'll try to answer some of your questions.  My case of opll is severe, according to my surgeon, so I've experienced most of the classic symptoms of opll. I believe that the symptoms of my opll began years before my diagnosis in 2003.  Medical articles report that one of the symptoms can be urinary incontinence.  Apparently, the compression of the cervical spine affects the nerves that control this.  I first experienced urinary problems about 1996.  By 2003, I was experiencing numbness and tingling in my arms, hands and legs.  I was in surgery for 12 hours because my entire cervical spine is affected by opll, and the compression of my spinal cord was severe.  Dr. Weinstein and the other doctors who participated in my surgery did a great job.

     Other symptoms of opll include:  weakness or clumsiness of the upper extremity, numbness or paresthesias of the upper extremity, difficulty with walking, leg weakness, and neck pain.  When my surgeon examined me, my knee jerk responses were quite brisk, and he also asked me if I had ever stumbled or fallen, which I had not as of 2003.  However, I had a bad fall last year while walking on even pavement, so I can't blame the fall on anything but the opll.  Falls can be very dangerous to someone with opll, as well as any trauma to the head because of the risk of damaging the spinal cord.  Usually, opll primarily affects the cervical spine, and so far, I don't have any opll in my thoracic or lumbar spine.....THANK GOD!  

     OPLL has dramatically changed my life because I am quite limited by the fusion of my neck.  I can't turn my head very much but I am still able to drive.  No more swimming, or active sports.  I'm 60 years old, so my lifestyle is quite sedentary now.  I also have another rare medical condition that contributes to my sedentary lifestyle but this condition is not related to my opll.

     The book that I previously mentioned is titled, "OPLL, Ossification of the Posterior Longitudinal Ligament", second edition, by Yonenobu, Nakamura and Toyama.  It was published by Springer in 2006.  I found it online and paid over $100 for it but it was a good investment.  Since most doctors haven't even heard of opll, I figured I'd better educate myself.

     I hope this info. is helpful to you, and also hope you'll stay in touch with me since I don't know anyone else who has this condition.  By the way, are you Caucasian?  I am, and I've read that there are probably many misdiagnosed Caucasians who have opll.  There is great need to educate doctors about opll.  That's why I'd like to establish a web site and a forum for people with opll to discuss issues.

All the best to you, Michael,

Jan

San Carlos, California (near San Francisco)

Michael,

I'm glad to hear that you've decided to move on with your life to the fullest.  Your opll may progress slowly and not impede your activities now, or in the future.  Attitude is everything, and each day is an opportunity to experience whatever you enjoy.  After my diagnosis, I was in a bit of a shock because my opll was so severe.  However, I waited about a year before having the surgery because I wanted to investigate all options, and also get a puppy.  Getting our beloved dog, Matey, was the best therapy for me. 

Thanks for volunteering to help with an OPLL web site.  I'll have to postpone this for now because I've other projects to tackle.  However, you sound like you've more expertise technically on the PC, and I'd like to take you up on your offer.  So keep reminding me, please!  My email address is [email protected]

Jan

Yes, Michael, it can be very depressing to learn that you have a serious medical condition/disease, and opll can be very serious.  Be thankful that you can still live an active life and make the most of it.  I have found that it's as important to treat your depression as it is the opll.  I have another rare condition called, erythromelalgia, which is a neurovascular condition and causes intense burning in my extremities and face.  Its onset was in 2002 just before I was diagnosed with opll. Erythromelalgia's symptoms can be intermittent, which made it very difficult for docs to see the red, swollen feet, hands and face.  I was in agony for two months and had to soak my feet all night in cold, ice water.  I was trying to work during this nightmare but was laid off which ultimately turned out to be a good thing.  However, I was so despondent about my terrible pain and job loss, and lack of sleep that I considered suicide as the ultimate way to end my unbearable torture.  Finally, a rheumatologist diagnosed the problem, and I began to get treatment that helped.  My erythromelalgia is fairly well controlled with a cocktail of meds that have side effects.  One of the meds that helps the depression also helps the flares in my extremities.  Another med that really helps reduce the flares also makes me very drowsy and lethargic.  It's a trade off but I'm lucky to be able to function fairly well and enjoy traveling in our air conditioned camper/van.  If I can control the temperature of my environment, I can manage to avoid the intense flares that can occur with this condition.  Also, I joined The Erythromelalgia Assoc. and can communicate with other sufferers of erythromelalgia around the world.  We're funding research at Yale that is yielding some hopeful leads as to what causes erythromelalgia.

I believe that an organization of volunteers with opll would be a helpful way to educate ourselves and the medical community about this potentially debilitating condition.  Working toward a common goal like this can also provide hope and support to people with opll.  That said, I wish that I had more time and energy to pursue the establishment of a non-profit org. for opll.  Such a project overwhelms me because I'm just one person.  If we could find other people with opll, it would be possible to divide the work.  Actually, The Erythromelalgia Assoc. began with a few people communicating like we are on a health message board.  Maybe we could achieve the beginnings of such an organization after all! 

You asked about my range of motion in my neck.  It's very limited due to the hardware they had to put in my neck when they performed the laminectomy and fusion.  Because my opll occurred at multiple levels in my cervical spine, they used a "Vertex Reconstruction System", which is a flexible fixation system consisting of rods and screws made of titanium.  I found a photo of this system in the "spineuniverse.com" web site.  You can check it out if you ever want more info.

My advice to you, Michael, is to live your life fully, and don't worry about your opll, unless you notice numbness or tingling, or chronic pain or headaches.  Be careful about too much exercise of your neck because my doc told me that exercise can trigger more ossification in the cervical spine.  If symptoms occur, then it may be time to consider surgery.  If your depression persists, then it may be time to consider medication and/or therapy because depression affects all aspects of your life.  I hope you will reach out and send me an email if you feel depressed/concerned about your health.  You are not alone!

It's time to walk my dog to the park...........yes, I can actually walk a few blocks and wear a hat to protect myself from the sun.  Since it's winter here, temps are in the 50-60 F. range, and it's cool enough for me to enjoy the outdoors.

Have a great week end!

Jan

Hi Big George,

Welcome to our little opll group!  Now that four of us are posting messages I'm beginning to realize how diverse our conditions of opll are.  The first question that comes to mind is, who was your surgeon and where was your surgery performed?  I'm wondering why you had to have two surgeries..........didn't your surgeon see that C3 to T1 was compressed by the opll during the first surgery?  What a shame that you have to endure two surgeries.  Also, could you please explain what a corporectomy is?  I couldn't find this in my medical dictionary. 

I'd like to establish a list of doctors who are experienced surgeons for opll.  I belong to another health group for another rare condition that I have, and we have a web site that lists doctors and their contact info. who have treated us.  Michael, and Amanda, if you read this, could you please respond with the names and addresses of your doctors?  Here's my doctor:  Dr. Philip Weinstein, UCSF Medical Center, Spine Center, 400 Parnassus Ave., 3rd floor, San Francisco, CA 94143.  To make an appointment, call his Program Coordinator, April Andrews at 415-353-2874.  She requires that you have a recent MRI and a referral from your doctor.  Dr. Weinstein is now "semi-retired".  He's quite famous worldwide for his excellent surgical skills, and he is also a good communicator.  I was so fortunate to live near UCSF which is also a teaching hospital. 

Hope to hear from everyone..............your postings are the highlights of my day.

Jan McKim

San Carlos, CA

Hi Jan,
I wanted to clarify why the neurosurgeon didn't see the ossified ligament. My first surgery was done by Dr. Robinson, who was with the Mayfield group, but at my 2 week post-op visit, informed me he was moving to Atlanta. My case was followed thereafter by Dr. Skidmore. Also the OPLL wasn't as pronounced on the initial MRI. By the time I had a second MRI, almost 9 months after the first, the OPLL was clearly more pronounced.
Living with OPLL is certainly challenging, but making some adaptations has helped me. I continue to drive, which helps me stay independent, and have a handicap parking placard. This helps cut down on some of the steps I have to take, while shopping. Because my head doesn't turn as far, I use my side and rear view mirrors to see obstacles and traffic. When I go shopping, I use a cart as a rolling walker,which helps stabilize me on days when I'm a little wobbly.
We know there are varying degrees of OPLL. I have seen some, where only one or two levels are involved, and I've seen some where there are multiple levels involving the entire spine. I know this can be rough some time, but I look at other people who have life threatening illness, and it puts life into perspective. When first diagnosed, I asked "why me", now I think it was an awakening moment to make me more humble. Before my surgery, I could do anything, without asking for help. Now, I can't do many things, and I've had to learn to ask for help. You find many people,who are kind and willing to help. I didn't realize just how many friends I have. I thank God every day for the blessings of friendship. I hope Michael has a lesser level of OPLL, and that he has a great support team to help him through this challenging time in his life. I hope you have the support required to press on and live your life to the best of your abilities. I think dogs are one of the best therapies we could have,and I know your Matey gives you unconditional love. Our Gizmo does for me. Be well.

Big George

Hello Everyone. Greeting from Canada. I am so glad that I found this site. I have just been diagnosed with moderate to severe spinal stenosis due to OPLL in my neck. An MRI was done and apparently I also have boney facets in the same area, and possibly two herniated discs in my neck along with the OPLL. A CAT scan will be done in a couple of weeks to determine the disc status. I have not yet seen a neurosurgeon, and am trying to get myself up to speed about OPLL before that. My main symptoms at this point are lightheadedness and dizzyness, aching (bad) in my triceps, rarely severe tingling in both arms with brief (only a few minutes so far) numbness in both arms, constant numbness in my two left outside fingers, neck and shoulder pain with back spasms, hip and leg pains, "creepy crawly" sensations down my back and thighs, headaches, occasional sensitivity to light. I also have pretty bad chronic fatigue and myofacial pain syndrome. And post traumatic stress disorder (with accompanying short term memory problems and difficulty with consentration) with depression. ( I had a five minute fight with a rabid bear a few years ago) Oh, and type two diabetes.While that sounds like a lot, I still manage to think of myself as basically a healthy person! (Perhaps I need a reality adjustment!). I am very drug sensitive, and so avoid taking pain medication if there is any way to avoid it. Up until the OPLL diagnosis, the fatigue and memory issues had been my biggest stumbling blocks in terms of managing daily life. Is fatigue an issue with OPLL? I have been on disability, and was hoping I could get back to work (correctional officer) eventually. Now it seems I have another hill to climb first. I would appreciate any advise anyone here would care to offer. Thanks much.

Spunkers

Hello Big George, How nice of you to reply. I have been receiving on-going treatments for many of the problems related to the bear attack of almost six years ago from a wonderful M.D. who specializes in physical rehab. and is very open to less than conventional treatments. He helped me with may of my issues when everyone else had told me I was a good as I was going to get. (At that time, over a year and a half post attack, I couldn`t even take a regular breath without so much pain, I just didn`t breath deeply, unless i remembered to take at least 3 or 4 full breaths per hour no matter how much it hurt, just to try to stave off lung issues.) Prolotherapy is not a paid for treatment here under Canadian medicare, and he is only one of two doctors practising it here in Canada. I have invested over $7,000. in treatments, and was ever so slowly improving. And whenever i ran out of funds, and couldn`t have a treatment for some time, I would begin to loose some of that hard-won ground. I had also had a very bad reaction to the rabies vaccine, but had to continue with the treatments, as the bear had been rabid, and so there was no alternative, but to take the full course of treatments. Most of the doctors and therapists assumed that many of my strange symptoms were fallout from the rabies vaccination. The more judgemental types just assumed I was enjoying my leisurely life on disability and inventing symptoms to avoid returning to work. (Because poverty is so enjoyable I suppose!...I lost half my income) I took a very bad fall several years ago and was always puzzled by it, as I was firmly planted on both feet, and while the deck was wet, I could never understand how I could have fallen, as I was just standing!!! and suddenly my feet just went out from under me....I was only bruised, but haunted by the event. Now I wonder if that was an early manifestation of the OPLL. When i began having the episodes of numbness and tingling in my arms, my Dr. sent me for an MRI. and that took six months to get. By the time we got the results, I was having the dizzy spells. Unfortunately, my Dr. is leaving the province, and so my G.P. is in charge. While my physical rehab specialist Dr. wanted me to go to certain neurosurgeon who comes with a great reputation, my G.P. disagrees, and is sending me to someone else. Here in Canada, we patients can only see a specialist on referral. I will see this one, and if I don`t like him, for any reason, I will insist on my right to a second opinion, and will hold out to see the one recommended by the physical rehab Dr.

I have noticed while doing on-line research that some sites seem to indicate that surgical intervention should be done earlier than later. Right now, I have a reasonable quality of life...I am disinclined to rush into something that could put me into a much worse place. Although the word rush may be inappropriate, considering it will be months before I see a neurosurgeon, many more months of delay if I decide to insist on seeing a second neurosurgeon, and many more months before I would be in an O.R. if that winds up being the route I take. If my situation becomes more emergent, the process would be greatly sped up, but for now, I have time to educate myself. I am still trying to get used to the whole idea of the OPLL and all its implications. I have worked so hard to recover from the bear, and was finally seeing some light at the end of a long tunnel, and boom, more crap to deal with. Anyway, a few weeks ago, I lost my sense of balance will leaning down to do up my shoe, and fell sideways right cheek, face-first, into the wall. The strange part about that it, touch wood, I haven`t had dizzyness since. And my neck doesn't hurt as much. It makes me wonder if it relieved some pressure from the herniated discs (still not confirmed)?

Are there any web-sites that you found that are partiulairly informative and/or helpful?
Spunkers

By way of background info, I live on the farm I grew up in Manitoba, about an hours drive from Winnipeg. Four alpacas, three cats, two large dogs, one husband (he's the sweetest of the bunch) Ten minutes from the nearest small town.

Hello Big George,

I was diagnosed with OPLL at UCSF in February. I live in San Ramon, CA. I'm trying to learn everything about OPLL. I'll write more later.

Birgitta

Hi , I am so glad I finally found something about this OPLL. I was also told I have OPLL (c3-c6). I dont have any pains, found it by mistake while swimming... the only thing I felt was electrical shocks all over my body that went away after 5 days. Went to check it and doc suggested CT and then MRI that showed the OPLL, bone spurs and most important, severe pressure of the cervical cord. I live in Amsterdam and I am flying next week to Denver (where my brother lives) to have the surgery: C4, C5 corpectomy plus cage and metal plate. I would love to hear about the post op recovery. I am so scared! I will be stayiny in Denver till I will be able to get on a plane and go back to Europe.. How long do you think that might take? The only symptoms that I have is hyperreflexia in arms and legs (this means strong reaction to reflex check) I didnt know I had it before the clinical check, but doc told me it is a sign that the cord is being compressed - and tinglings in my back plus little pains at the end of my fingers that come and go away. I am 50 years old and didnt have any spine problems before..
Thanks a lot for any sharing of your post op recovery.

Hi Ruti,
I had the same surgery back in 2004, but at 3 levels (C4, C5, and C6). Don't be scared, I know it can be overwhelming, but your post op recovery will be quick, and your pain is controlled with medication. I remember waking in the recovery room wearing a cervical collar- the nurses gave me demerol through my IV for pain. I spent the first night in the recovery room, as there was no room in the surgical ICU. I was moved to the neuro floor the next day, and spent 5 days in the hospital. I had to wear my cervical collar for 3 months total, but could remove it to shower and to wash the removable padding. My surgery was Feb 12th, and I was back to work by the end of May. I was 45, at the time. I had hyperreflexia- my wife would barely touch the bottom of my feet, and I would jump like I was shocked. I had tingling in my hands and feet, and my upper back felt like I had a mild sunburn- it can drive you mad. Now, after having my cord decompressed, I have very little numbness in my toes, and occasional numbness in my fingers from nerve roots being compressed. I was nervous before my surgery, and asked my priest for a blessing- after being anointed, I was completely at ease. I felt a warmth spread from my head to my toes, and I felt a peace like I have never experienced before. I hope and pray that you will not be scared, and you will find a peace to help you through this trying time. Be well, and take time to heal well.

Big George

Hello Birgitta,
Thank goodness you don't see the chiropractor, any more. Most of them cause more problems than they treat. They need to know their limitations, and often perform manipulations which can injure someone with spinal stenosis. I'm hopeful that he didn't cause more long lasting damage to your spinal cord. Your primary physician should have known that this isn't just wear and tear, and should have referred you to a specialist (neurosurgeon). Unfortunately, some physicians don't realize when their patients need to be referred to a specialist. Dr. Gillum seems very astute, and your neurosurgeon seems to be recommending one of the most popular surgery regimens used to treat OPLL. You should check the record of the neurosurgeon, and decide whether to use that particular surgeon, or not. I don't think there is one particular top surgeon for OPLL, but most have trained to do the laminoplasty or laminectomy with fusion and insertion of titanium hardware. I have had 3 surgeries ( simple laminectomy C4,C5, anterior corporectomy with fusion and titanium hardware at C4,C5,C6, and laminectomies from C3 to T1 with insertion of titanium rods and screws) in the cervical spine, and one lumbar laminectomy at L1, L2, and L3 , to relieve cord compression. Your symptoms are all too familiar to me- I've had them before my surgeries. I waited as long as I could to have my 2nd surgery, and I could barely walk after six weeks of waiting. Try to find as much information on OPLL syndrome and DISH ( Diffuse Idiopathic Skeletal Hyperostosis) which can go together. Check out my post to Spunkers, above, it contains some of the better OPLL sites. If you would like to e-mail me at [email protected], I can send you a scan of my recent lateral c-spine x-ray with hardware. Good luck, my prayers are with you, and be well.

Big George