OPLL (Ossification of the Posterior Longitudinal Ligament)

Help!!! I need to find a doctor that knows something about OPLL within the US. Has anyone been diagnosed with OPLL and have you found a doctor that knows about the rare spine disease in the west part of the US? It usually affects Japanese culture and there are many doctors in Japan that treat this disease; I am a 42 year old Caucasian who just had anterior decompression and fusion of C5-C7. The pain I have is worse and getting worse with each passing month. I have all of the symptoms from OPLL but cannot find any neurologist or orthopedic surgeon who has dealt with this disease before. My doctor's are guessing (which is really scary) & physical therapists are blaming my posture (which is not the case.) I have contacted several Universities that teach neurologists/orthopedic surgeons with no response (one from UCSF that has treated OPLL before will not return my emails/calls or my primary care doctor's calls and emails.) I truly need to find a doctor that has treated this disease before. I am willing to travel to another state for answers and help. I am afraid that the previous surgery has caused irreversible damage since I have new tremors and loss of strength after the surgery.

I complained about back pain and neck pain for approximately 10 years before my first MRI was done. I went to 6 doctors in those ten years and they told me various excuses from my posture to stress; come to find out in June 2008 I was diagnosed with OPLL and osteophytes through out my spine. If I would have fallen or been involved in a car accident I would have been paralyzed from the shoulders down & to add insult to injury I was told this year that if they discovered this 5-7 years earlier I may not have had permanent nerve damage. So you see, Las Vegas care is not what it should be. Most (not all) are only concerned about getting my money (e.g. If my shoulder and elbow hurt I have to make two appointments; one for the shoulder and one for the elbow. Some doctors will not treat more than one physical complaint per office visit.) I have also been referred to doctors that will not take me because I have had prior surgery.

Report post

55 replies. Join the discussion

Hi Jh702! I'm a 42 Female of Asian decent. A month ago I was diagnosed with OPLL (an underlying problem discovered after a recent surgery and cause of lots of bilateral pain/weakness in my left/right arms). Like you very scared knowing that this is a very rare genetic disease. An MRI of my cervical spine detected the problem followed by a CT/Myelogram. Both test confirmed OPLL at multiple levels C3-C7. I also took an EMG test which tests your nerve senses and functions (luckily the EMG test showed no nerve damages). If there is any good news for me is that my condition is slowly progressing and will be monitored every 6 months - although, surgery will be inevitable. OPLL can be treated temporarily with conservative non-surgical treatments (I had a nerve block 2 months ago). However, if OPLL is left untreated, OPLL will lead to quadriplegia. If you are up to travelling to So. California, there is a Dr. Robert Bray (I believe world-reknown) who is the director of the surgical spine center at Cedars-Sinai in Los Angeles. My sister inlaw and very close friend both had successful spine surgery with Dr. Bray whom I hope to obtain my 2nd opinion with. My doctor is Dr. Jon Isamu White (he's part Japanese and well-educated and experienced with the disease) and he operates in Irvine, CA (www.irvineortho.com). I really like Dr. White and he made me feel very comfortable and help educate me on the disease -- he also answered all of my questions. I also tried to do research (but) all seems limited. There are 2 books, I googled (OPLL by Yonenobu/Nakamura/Toyama and Cervcial Spine Surgery Challenges: Diagnosis and Management by Albert/Yung/Lee/Lim). Hope this little information can bring you some comfort! Good Luck to You and Wishing You Well!

Report post

Hi, my husbond just was told he has opll. It is all down his back and neck. Our doc does not know what to do. He is one of the top docs. in Houston area and he is not sure what to with in.

He said that there is a doc in Arizona, he may send him to that doc.

But it sounds like the docs in Calf. are doing more to help people.

I could us any help you may have found out.

Thanks

Report post

I am sorry to hear about your medical condition. Have you tried the Mayo Clinic in Arizona or Minnasota? I live in Nevada as well and you are right.Health care in Nevada is not the greatest. It will be better. I am doing my part to help educate individuals to rare diseases. I am contacting newspapers medical schools, doctors and the community one person at a time. I pray that you find the medical treatment you deserve.

Report post

By Swangirl212
I am really sorry to hear you have been diagnosed with OPLL. I was 47 when I was diagnosed a few years ago. I am a black/native American female with no Japanese descendents. I live on the east coast but the neurosurgeon I found was wonderful. He diagnosed me through the MRI and operated after I received a second opinion. After a 7 hour long surgery, I now have a permanent titanium plate in my neck that limits the range of motion in my neck. The C5-
C7 vertebrae have been replaced with cadaver bone but, at least now, I am no longer in the excruciating pain I experienced before the surgery. I, too, was told that if I fell or had been in an accident I would have been paralyzed from the neck down.

Now, post surgery, I pay close attention to any pain I feel relating to my spine. I am careful with the physical activity I do--my surgeon made me fully aware of my OPLL disease and the fact that it could return at any time anywhere along my spine. Immediately after the surgery the 2 inch long vertical scar on my neck bothered me, but now I consider it a blessing and a reminder of how precious life is. Without that scar, I would not be able to enjoy my life now....I am very thankful for the neurosurgeon that saved my life.

Report post

Hello All,

I've been recently (in the last 6-12 months) diagnosed with OPLL as well as cervical stenosis. I am a African American 47 yr old woman who've been in agonizing pain with my fingers (primarily the lt index, middle and ring). I do not have pain in my neck (very minimal). I am so focused on the fingers that any other pain is very light.

I am very frustrated with seeing so many doctors, having several tests performed and still waiting for a definitive answer. Although, I am very scared of neck surgery, it appears to be inevitable.

I wanted to get some feedback from Swangirl212 since you are the same ethnic background and live on the east coast.

I hope everyone will receive the proper medical treatment to resolve the difficult times and pain in our lives. It is very helpful in sharing our stories with other people who are experiencing the same thing.

Report post

I was just told 3 weeks ago I have OPLL, from a Kaiser Dr in Oregon who transfered up here from CA recently. They do not have much else to say however.

Report post

Hello I am a 54 yr old caucasian female. A Neuro surgeon in Houston Tx diagnosed me with OPLL from c-2 all way to c-6 He claims in his 40 years of experience he has only seen 2 cases. He basically told me he couldnt do anything for me and told me he didnt think there was a neuro surgeon in Houston or even in Texas who could do the surgery I need. He didnt even know who or where to refer me to. I cant believe that in a city this size with a medical center this size that there isnt anyone who can help me. Is there anyone on the list that might be able to refer me to someone here in Houston. Im so glad to find this list as he had me convinced I had a very rare disease. I am glad Im not alone but sympathize with all of you..

Report post

Hello. I have been recently diagnosed with OPLL also. I live in Houston Tx. The first neuro surgeon I saw said there was nothing Ihe could do for me. He didnt think there was anyone in Houston (even with our huge medical center) or in Texas at all who knows how to do the surgery needed for OPLL He just pretty much left me hanging with no referral or names of where to go next. He suggested Cleveland Ohio or the Mayo Clinic in Minn. I am in the process of going back to my primary for a referral (HMO) for a second opinion from another neuro surgeon at Methodist Hospital. I dont know where you have tried looking but maybe this will give you more ideas. If in my search I find someone who is familiar with OPLL and can do the surgery I will post it on this site. Mine is c-2 to c-6. Numbness, tingling, pain and weakness in neck, left arm, shoulder, hand. So far no other problems but I know it progressively gets worse. I am a single mother with a 14 year old daughter so it would be almost impossible to have surgery done and be gone to another state so I am looking in Houston Medical center first.

Report post

I have also been DX. with DISH by my Rheumy. I am going to try going to a diagnostic pain clinic next. I don't really know what to do about this condition. I have several levels involved. I had a foraminotomy 2 years ago to shave down some bone spurs but it didn't stop the radiating pain and numbness. I am now having problems with my feet. I don't know if it related to the OPLL or it is just another part of my inflammatory arthritis. I also have DDD and a congenital fusion of C 5-6. I will see what happens next! Does anyone know of a Doctor in the Portland area that knows about this condition?
N

Report post

We are in Boston, MA and have been dealing with a recent diagnosis of OPLL. We have used Dr. Sagun Tuli, a neurosurgeon at the Brigham and Women's Hospital here. She is familiar with OPLL and performs this type of surgery regularly. I hope this information is helpful and I wish you all the best of luck.

Report post

I'm a 44yr old black GA. female. I'm sorry to hear of everyone pain. I was told 3 weeks ago that I have OPLL, at first my Dr. didn't know what it was from looking at my MRI. Once he got started with my anterior cervical discectomy of C-3 thru C-7 he was able to see the opll. My left side is weak and once it's tried it pretty drags. I tingle a lot even more so than before the surgery. I had very bad spinal leakage, but thank God my Doctor was on top of things. Will be back later to type more, but got to head to Dr. right now.

Report post

I'm a 44yr old black GA. female. I'm sorry to hear of everyone pain. I was told 3 weeks ago that I have OPLL, at first my Dr. didn't know what it was from looking at my MRI. Once he got started with my anterior cervical discectomy of C-3 thru C-7 he was able to see the opll. My left side is weak and once it's tried it pretty drags. I tingle a lot even more so than before the surgery. I had very bad spinal leakage, but thank God my Doctor was on top of things. Will be back later to type more, but got to head to Dr. right now.

Report post

Hi everyone. I was diagnosed with OPLL 1 1/2 weeks ago. My doctor said that it is severe and at multiple levels down my neck and the rest of my spine. He told me that surgery would be life threatening only to be done at a "heroic" (his words) time when it absolutely had to be done. He said I would be out of commission for 8 to 12 weeks and then may not be able to work again. I am an artist/art teacher. I have numbness, tingling, and burning in both hands and a weak lower left leg. I have had the symptoms for about 6 months to a year. I have had two laminectomies done on my neck. The idea of "life threatening" surgery is pretty scary. Is this just from my neuro's view point? I read where others have had the surgery and are doing well. I go back to see neuro Jan. 19 and will ask all of the questions that I didn't think of when the ton of bricks fell on my husband and me in the dr. office! Thank you all for being there. It really helps.
Sunny

Report post

I received a response from a specialist's office in Hawaii that OPLL is very complex to deal with but most neurosurgeons opt not to deal with it or scare the patient out of surgery/treatment because it is so complex. Research your options and get three or four different opinions. I had surgery and the pain is worse and I have not returned to work because of it, it has been 15 months since my surgery and it looks like I will never be able to work again because of the constant pain, tingling, loss of muscle use, swelling and manipulation of the spine. The discs above the surgery point have less space then they had prior to surgery and now my right arm has a tremor that spills or drops anything I tried to hold with only my right hand (I am right handed). Physical therapy did not help and my insurance will not cover anymore therapy visits so I am on my own without any income. I applied for disability but was declined and now I have to wait the three year wait to see a judge.

Report post

I am so sorry for your worse pain! Did I understand correctly that the surgery made your condition worse? Where did you have surgery? Maybe this is why my neuro was so hesitant about the surgery. I was not aware that after applying for disability and being turned down, you have to wait 3 yrs. to see a judge about it! Is this in the U.S.?

Report post

By the way, I forgot to mention that I am a 62 yr. old Caucasian female.

Report post

I had my surgery done in Nevada and the pain is worse than before surgery. I have lost almost all use of my right hand because of the tremor that developed after the surgery. I knew going in, from multiple opinions, that I had a 33% chance to get better a 33% chance to get worse or a 33% chance to stay the same - so basically there was only a 33% chance it would get better. I did the surgery because of the chance of becoming paralyzed was more of a threat and the pain was extreme. Paralyzation is an often outcome for people with OPLL; a fall could still paralyze me from the waist down. I was told all people that have OPLL have the possibility of becoming paralyzed because of the pressure on the spinal cord - read the book from Japan doctor and he has many cases in which that is how they discovered the OPLL (after the patient fell and became paralyzed.)

The disability wait here in Nevada is 3 years, not sure about other states.

Report post

I'm 50 year old caucasion female from ks with opll on the neck c2-c4. I had c2-c7 laminoplasty surgery in kansas city by Dr Chilton in 12/06 for the severe spinal cord compression caused by the opll mainly. Dr added donor bone and little pieces of titanium from c3-c6. I can no longer look up beyond normal looking forward. Some limits looking sideways. Surgery was pretty painful for a year afterwards, but the pain got better with time. I am not perfect since the surgery, but I feel pretty blessed to be as good as I am, for the mess this Dr had to deal with on multiple levels in my neck. All was looking pretty good, till about two months ago. I started experiencing alot of pain in my middle back, radiating pain, tingling, numbness into my left chest. I ask my primary for a MRI of my middle back, and it came back showing not OPLL, but Ossification of another ligament in my middle thoracic spine. I have OLF or ossification of the Ligamentum Flavum throughout almost all 12 of my vertebra in my thoracic spine(middle back). I've already consulted my Neurosurgeon and my spinal cord isn't being compressed YET nearly as bad as I had with the OPLL in my neck, so no surgery needed yet, unless the pain gets to being unrelenting. My pain has let up in my middle back lately after taking a six day course of oral steriods/prednisone. After reading/studing my OLF on the computer, I am more scared about the middle back ossification, than that I have in my neck, because I think the surgerys are even more complex and dangerous to perform in my middle back, than my neck. In 2007 my primary Doctor tried to get me a referral to Mayo clinic in Rochester, Minn., but the Mayo clinic denied me a appointment. So Mayo was no use for me at all. I wanted to try and find someone to figure out why this ossification is happening and how to stop it. I still do not have the answers to either of my questions, and unfortuanatley this ossification process just keep getting worse in my spine. That seems to be the nature of this ossification, it continues to grow. I still have the OPLL in my neck, as it is extremely dangerous to try and remove it I was told.

Report post

I forget to add, I'm wondering for those of you that have had surgery, could you please write what kind of surgery you had. Mine was called a Laminoplasty from c3-c6. At c2 and c7, it was called a partial laminectomy.

Report post

Hello, I am a male caucasian and just underwent OPLL surgery yesterday, 7 Jan 2010. I was diagnosed with the disease in October and November after completing and MRI and CT scanS. Specifically, my surgery included the removal of C4 and C5 disks, the C5 vertebrae, and about 1/2 of the C6 vertebrae. A spacer was placed between C4 and C6 with bone from my neck for fusing, and stability is provided by a titanium plate attached to C4 and C6. I returned home today, 8 Jan 2010. Of course, I have to wear a neck brace 24 by 7 for the next 6 to 12 weeks. The throat is a little sensitive but I am swallowing easily and have eaten 3 normal meals since the surgery. I have minimal pain so far and the only pill I have taken tonight is Flexiril, a muscle relaxant. Over the next few weeks I will continue to keep you informed of my progress. I am very impressed with my neurosurgeon and his knowledge and treatment of OPLL.

Report post

This discussion is closed to replies. We close all discussions after 90 days.

If there's something you'd like to discuss, click below to start a new discussion.

Join our Gaucher Disease Support Community today!

Things you can do

Support Genetic Alliance

Help Genetic Alliance reach its goals and support people like yourself by making a donation today.

Donate to  Genetic Alliance

Join our PNET patient community today!

Join the Cushing's Disease Community on Inspire Today!

Discussion topics

Community leaders