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.
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OPLL (Ossification of the Posterior Longitudinal Ligament)
- By jh702
- Posted June 5, 2009 at 12:53 pm · 8 replies
- In Finding a doctor
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- By HopeNow
- Posted June 30, 2009 at 2:12 am
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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!
- By sydcass
- Posted August 14, 2009 at 10:54 pm
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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
- By jh702
- Posted August 17, 2009 at 1:15 pm
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Sorry to hear that you and your husband have to deal with this dreadful and painful disease. I did find a doctor that knew about it in Santa Monica (I have not been there yet) www.nervemed.com. I know it only affects .2% (point 2) of the US population, so that would explain why so many doctors (spine specialists) have never seen it before. I am tired of doctors telling me "You do not look like you have anything wrong with you..." Yet I have a six in scar on my throat from a surgery that fused together 3 discs in my c-spine. I really have lost all faith in any doctor or organization that claims that they can help....sorry.
- By SistaMoon
- Posted August 17, 2009 at 1:41 pm
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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.
- By Swangirl212
- Posted October 29, 2009 at 11:26 pm
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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.
- By Mickychelle
- Posted October 31, 2009 at 12:26 am
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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.
- By 4angels
- Posted November 14, 2009 at 11:52 pm
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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.
- By jh702
- Posted November 24, 2009 at 11:57 am
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I contacted Mayo clinic in Scottsdale/Phoenix area and they returned all of my paperwork to me after it was reviewed by a medical student (why is a medical student reviewing files in the first place?); after further research they do not have a doctor that know anything about this disease anyways. Weird part is that I had to send them my MRI reports and not the actual film - the film is read by a doctor and my OPLL was missed on 7 previous MRI's. The reports are all based off of what the doctor sees when they read the MRI - if they are not paying attention or do not know what they are looking at (like the seven different doctors that read my MRI's and missed the OPLL and disc bulges) they miss things; why wouldn't someone look at the films? I have OPLL that has not been corrected from L4-L5-S1 and I still have the chance of being paralyzed if I fall; I want help and cannot find it. C5-C7 have been fused and the pain is worse than it was prior to surgery. My search is entering its second year. The doctor that did my surgery started sending me out of network to HIS labs and that is against many health care laws; I will not go back since I waited for 9 hours in their waiting room after surgery, received a $700 bill for my $50 co-pay and they read two reports wrong!!!!!! What to do?????
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