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

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Rheumatoid Arthritis
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Posted 4/27/2009 5:35 PM (GMT 0)
Hello Jamie Justine,
Your neurosurgeon sounds like he's giving you a run around. I had the "electric" shocks, like you describe, every time I sneezed or coughed. My neurosurgeon said it was from my cord compression. It was difficult to get comfortable, and I didn't sleep well. Once I had the surgery to decompress my cord, and healed, I slept better, and the "electric" shocks were gone when I sneezed or coughed. Where do you live? Can you find another neurosurgeon, who will treat you and decompress your spinal cord? I know it is very scary when you are first diagnosed, but you need to find an inner peace to help you through this rough time in your life. My inner peace came with prayer and the Anointing of the Sick by our parish priest. It was a special blessing which left me feeling warm and at peace, where beforehand I was extremely agitated and nervous. Know that there are good times ahead, and it's okay to be emotional- I have cried many days, but I know things will be better. I will keep you in my prayers, be well, don't worry- you need to concentrate on finding a neurosurgeon who will treat you before you have permanent damage to your spinal cord.

Big George
Posted 4/27/2009 5:43 PM (GMT 0)
Thank You George.

I've been reading this page all week end & everyone seems very open to what they have been experiencing. I can't remember who spoke of Dr. Weinstein from San Fransisco, but I emailed him and he request a CD of my MRI and CTM. Do you know if this is hereditary?

Thank you for your prayers, you will be in mine as well. Oh I am from Oregon.
Jamie Justine
Posted 4/29/2009 12:08 AM (GMT 0)
Hello Jamie Justine,
Are you asking if OPLL is hereditary? From everything I've read, it is inherited, but the researchers aren't sure how it is inherited. A good link is: http://resources.metapress.com/pdf-preview.axd?code=v22tt3n3q6563130&size=largest
You can find some more links in my previous posts. Dr. Weinstein sounds like a very knowledgeable neurosurgeon. I hope you can get some help and relief.

Big George
Posted 4/29/2009 8:32 AM (GMT 0)
Thank You Big George!!! You've been so kind. I appreciate it. It's been a long day 9/hours on my feet and my hands look like soft ball mitts. Thank you again for the info and encouragement...your a sweetheart..
Jamie Justine
Posted 4/29/2009 2:25 PM (GMT 0)
Jamie Justine,
I too am from Oregon. Are you willing to go to S.F. to find the answers you are seeking? I will be following your story as I am still seeking in my own area. Not much luck so far.
George,
Do you have DISH? I have read about this condition. Are you Diabetic? So far I have been tested for diabetes but test negative. My father is Diabetic but not until 74. He has always went to the Doc regularly and doesn't have a family history. He currently has Prostate cancer.
Keep in touch!
Nancy
Posted 4/29/2009 6:26 PM (GMT 0)
Nancy,

Hello fellow Oregonian! =) I am willing to travel to SF if Dr. Weinstein finds my case worth his time and my money?!! Or should I say if my insurance will cover most of the expenses. He has requested I send a CD of my MRI & CTM, so I'm filling out paperwork to receive copies of my own medical records. I've also been notified that there may be a charge for the information given to me? How strange is that? I thought my insurance paid for my appointments, & that included the information? Maybe only verbal huh? Anything that is documented has to be paid for. Weird. My administrator @ work is check in Seattle for me as that is a high Asian population and the probability of more cases being treated there are high. As I said, I've just received the news last week, but I'm investigating as aggressively, as I can. I've also recruited friends, family, fellow sufferers to help in the battle OPLL. I don't know about you, but other than a weight problem I've had my whole life... up and way to down, this is really the only time in my life that I've had any physical problems. I do have sports asthma, but haven't used an inhaler in well over 5 years. My problems started in early October 2008 & have progressively gotten worse. I was very surprised by the diagnosis. Was told by two other doctors that I had a hyrniation. I wish you well, and will keep all updated on my findings.
Jamie Justine
Posted 4/29/2009 8:28 PM (GMT 0)
Interesting. I have only had to pay to have copies of reports or Cd's etc if I wanted to have them mailed to me. If I picked them up they have been free. I am overweight and have allergy induced asthma usually in the spring. I do have arthritis in some of my other joints also but so do many people my age. I do have many osteophytes in both my thoracic and cervical spine. I also have OPLL in both areas. Keep us posted about SF. I have all my records and pretty good insurance. I hadn't really thought about leaving the area for a consult.
N
Posted 4/30/2009 8:14 AM (GMT 0)
Nancy,

Maybe that's what the paperwork meant by "some items may have an added charge" that if I had them mail it to me verses just picking them up. Good to know! Thank you. I will keep everyone informed. Have a good night.

Jamie Justine
Posted 4/30/2009 3:50 PM (GMT 0)
Hi Nancy,
I do have DISH-with arthritis throughout my body. My arthritis started in my late twenties/ early thirties, but I attributed it to football and wrestling in high school. I had a herniated disc at L4-L5, when I was in my early thirties. I was referred to a neurosurgeon after an MRI. He informed me then that my entire spine had arthritic spurs, and was like that of an 80 year old. I had no answer at the time. Now, however, I know it was caused by DISH. I am diabetic, and currently diet controlled. My father had Rheumatoid Arthritis, among other things, and died in 1997 from cardiomyopathy. I keep in touch with Michael by e-mail. If you want to e-mail me, my address is [email protected]. It sounds like you and Jamie Justine have a lot in common. I hope you are able to see Dr. Weinstein. He sounds very knowledgeable and willing to help you. Neurosurgeons often ask for MRI, CT myelogram, and any x-ray films, before they see you. This prevents them from wasting their appointments on patients who could be seen by other physicians. My neurosurgeon, Dr. Skidmore, is very skillful and compassionate. He has kept me walking, when I thought I would be in a wheelchair. I am fortunate to have the Mayfield Spine Institute here in the Cincinnati area. Be well.

Big George
Posted 4/30/2009 9:07 PM (GMT 0)
George,
What kind of testing is used to give a Dx. of DISH? I have been repeatedly tested and always come back neg. for diabetes. I do have wide spread arthritis in many of my joints. I am on a Rheumatic drug but have not tested positive for an Rheumatic factor. What kind of doc diagnosis DISH?
Thank you for sharing!
Nancy
Posted 5/2/2009 6:30 PM (GMT 0)
Nancy,
DISH can't be tested- it's diagnosed by the patient having arthritis throughout the body, and not having a positive rheumatoid factor. Any doc can diagnose it. DISH is basically osteoarthritis, which isn't limited to one or two areas. DISH is diffuse idiopathic skeletal hyperostosis- which means the arthritis is spread throughout the body and the cause is unknown. I was tested twice for rheumatoid factor, and was negative. This was in my mid thirties, when I went to a rheumatologist. My father had RA, but I am negative. Since being diagnosed with OPLL and DISH, my early arthritis and early questions about it have been answered. What rheumatic drug are you taking? I had a bad bout with asthma several years ago and was prescribed prednisone- my asthma was better and my arthritis improved while on it. I can take NSAIDs without stomach upset, and they have helped me keep moving. I also take tramadol and flexeril, when I have severe pain and muscle spasms. I do some minor stretches to keep me somewhat limber, but the key is to keep moving. Sometimes I have to rest while attempting to do some work around the house. Today is Derby Day- instead of a mint julep (what a waste of good bourbon), I'm going to have a good Kentucky bourbon over ice, and watch the race. Be well and keep moving.

Big George
Posted 5/4/2009 2:36 AM (GMT 0)
George,
I have widespread Arthritis. My first Rheumy put me on Pred. and boy did it get rid of my inflammation and allergies. It also raised my BP. I was on it for about 8 months. My first Rhuemy said to stay on it but my PCP and I were concerned about long term. It took me 4 months to wean off it. Meanwhile he prescribed Plaquenil because it causes the least side effects. I decided to get another Rheumy's opinion. Unknown to me she was a student at the teaching hospital and I saw her 2x's. My current Rheumy has given me injections of cortisone several times. The injections also seem to increase my BP. The injection in my R knee worked but not my hip, elbow or shoulder. She had me quit Plaquenil. Then I had another multi joint inflammatory reaction. I have stated it again. I rarely see her and it is hard to get much input from her. I asked her about OPLL once and she said she didn't really know about it and didn't seem interested in helping me treat it or understand it. Thanks for giving me more info.
Nancy
Posted 5/4/2009 12:41 PM (GMT 0)

Hello all - I am happy that I found this group - - I've just been diagnosed with opll after having 10 plus months of Numbness (very little pain) in my arms and legs, I've also begun droping things and having difficulty opening things like jars, etc. I was playing tennis regulary but am having problems holding the racket - it drops frequently - so my partners get upset - go figure. I lead a very busy lifestyle with 5 kids under 16 and the thought of being down from surgery scares me.  My neurosurgeon suggests laminoplasty - at the c 3 - 6 region........I have an appointment scheduled for next week - with another group.  I also spoke to  chiropractor (who claims to be a neuro guy) - he did an adjustment - but it left me very uncomfortable...and my benefits don't civer much for chiropractic care.  my questions are around the progression of this condition and how soon surgery should take place??  Having not a lot of pain - just the numbness and weakness - it's difficult to justify in my brain.............

any thoughts would be helpful!!

Thanks - Susan (Atlanta, GA) (48 y/o)

Posted 5/5/2009 4:52 PM (GMT 0)
Hello Susan,
Welcome to our growing group. I can sympathize with you. My symptoms started like yours- numbness and weakness in my legs, at first, then difficulty with my hands. Beware the chiropractors who claim they can cure your neurological problems. They manipulate parts of the spine, and often do more damage than help. They need to recognize and realize their limitations. A chiropractor who claims to be a neuro specialist is a quack. They are not surgeons, and more often than not, OPLL patients require some type of surgery to decompress the spinal cord compression. It is difficult to justify surgery when you are not having pain, but the numbness and weakness are abnormal and caused by your spinal cord being compressed. I tried to hold off having surgery as long as I could, and I had a problem with my left deltoid muscle after the decompression. My deltoid muscle didn't work for about 2 1/2 weeks. My neurosurgeon thought it was due to the length of time the cord was compressed, and then the sudden decompression, left the nerves innervating that muscle, unable to function. A second opinion is a good thing. You can get another neurosurgeon's opinion and another perspective. My first neurosurgeon, Dr. Robinson, went to Atlanta after doing my first surgery- a simple laminectomy at C4 and C5. He left the Cincinnati area because of the poor reimbursement of surgeons in this area. This surgery decompressed my spinal cord for about 6 months. Then my symptoms were back. At that time I was diagnosed with OPLL and had a corpoectomy with internal fixation at C4,C5, and C6. I am hopeful you will find a neurosurgeon to take care of you. Your surgeon should discuss the procedure and your recovery time with you. Don't be afraid, a good neurosurgeon can help improve your quality of life. Be well, and stay strong.

Big George
Posted 5/6/2009 12:12 AM (GMT 0)
Thanks you George! Is Dr. Robinson's first name James? I found James Robinson - at the Band Spine Center of Atlanta........I will do some more research - while I sit here with pins and needles running wild over my body. Does anyone else have an over abundance of itchiness?????the past few weeks - I feel as though I should bath in Hydrocortisone...... This is nutty. It really helps to read all of the posts and would like to get a better idea of how much down time I'd have from Laminoplasty - as well as how long I'd be in the hospital =- the neuro I saw first said 2= 3 nights?? I'm also concerned that following these proceedures - some of you have had continued immobility and increased severity of your opll....is this always the case?

Thanks for your help =
Susan
Posted 5/6/2009 4:28 PM (GMT 0)
Hi Susan,
I also had the itchy, feels like bugs crawling on you feeling, along with a sunburn feeling, or a cold,wet sensation on my upper left side of my back. I'm afraid hydrocortisone may not help- as these sensations are probably coming from your cord compression. You might try it- maybe it could help. I just kept busy, and tried not to think about it. As for Dr. Robinson, I can't remember his first name. I only saw him 4 times- once before surgery, once the day of surgery, once the day after surgery, and once in the office for follow up. After that I was followed by Dr. Skidmore, who has been wonderful- I credit him for keeping me out of a wheelchair. From my past experiences, I would tend to agree with your first neurosurgeon, 2-3 nights in the hospital seems like a fair amount of time. They want to keep you to make sure you don't have any problems, and that you can take care of yourself at home. They will send you home with adequate pain meds, and you will probably be in a c-collar for a short amount of time. Every doc is different in their approach- comes from their training in different parts of the country and under different neurosurgeons teaching them. As for the increased severity of OPLL patients, everyone is different. My neurosurgeon hoped to get a few more years before having to do more surgery, but I had more cord compression at different levels. Now that he has decompressed my c-spine from C-3 to T-1, and my lumbar spine at L1-L3, I hope I don't have to have any more surgery. Surgeries to decompress the cord don't cure you, but they keep you functional and alleviate most of the symptoms that can drive you crazy( the pins and needles, and weakness). I hope you can get some relief. Be well, and stay informed- you are your own best advocate when it comes to your health.

Big George
Posted 5/7/2009 12:33 AM (GMT 0)
Hello Folks,
I have been told that I have OPLL in my cervical spine. Have had zero neck pain so far. However, there is this "dagger" of the left side of spine about at the bottom of my shoulder blade. Also was diagnosed with both tennis & golfer's elbow in the left arm. P.T. (ASTYM) gave me some short term relief but pain is coming back pretty strong. Left arm is pretty undependable. Glad to have others to learn with. Biggest concern is where & who regarding surgery.
Thanks in advance for your thoughs.
Posted 5/7/2009 5:08 PM (GMT 0)
Hello Susan,

I would be very interested in contact information for Dr. Robinson if he turn out to be the right guy.

best of luck
Posted 5/7/2009 6:05 PM (GMT 0)
Hello - James Robinson -
Atlanta Brain and Spine Care
2001 Peachtree Rd., NE
Suite 645
Atlanta, GA 30309
Telephone: (404) 350-0106
Website: www.atlantabrainandspine.com

Are you in the Atlanta area? I can share my neuro guys with you as well.....Dr. Heller of the Emory Spine Center and Dr. Steuer (Northside Hospital area) I have seen Dr. Heller and have an appointment with Steuer next week.....
Good luck to you as well!

Susan
Posted 5/7/2009 6:41 PM (GMT 0)
Thanks a bunch,
I am in Baton Rouge, LA

Waterboy
Posted 5/9/2009 9:30 PM (GMT 0)
Wow, it seems that more and more folks are being diagnosed with this "not so common" disease. I've been slacking on my efforts for more info the past couple of weeks but will get back on the wagon next week. I wanted to comment to Susan from Ga. My OPLL is in the lower part of c1 all of c2 & c3. Like you I only have the numbness, lack of opening jars, the queen of clumsy lately. I also have trouble sleeping, because finding a comfortable position takes forever! Thank goodness my hubby is a heavy sleeper! =) I have young children also, so the thought of having surgery is very scary. Also because mine is so high on my neck the thought of possibly being paralyzed is horrifying. I'm not in much "pain" but I ache almost constantly. The past couple of days I've had speratic sharp pains like a bee sting or bug bite. But when I investigate there is nothing there. So I guess this is a knew symptom. They just keep getting better and better. I also fear waiting to long to have surgery for the risk of causing nerve damage. There are a lot of pro's and con's. My concern for going to a chiropractor is that I was told what OPLL is, is that there is bone growing on my spine that is blocking the fluid from my spinal cord. So adjustments wont do anything. Except cause more discomfort. Wouldn't that be like trying to make your bone in your arm or leg bend or seperate from itself? I may be totally wrong in that analogy so forgive me.
Jamie Justine
To Nancy,
No, I dont have diabetic, or the other thing you asked about. (sorry don't remember the name of it)=) Do these things go hand in hand? How have you been doing this week?
Jamie Justine
George,
Your such an inspiration to everyone. You've been through so much, and still have a positive outlook. Your awesome.
Jamie Justine
Posted 5/11/2009 4:53 PM (GMT 0)
Thanks Jamie Justine,
I have had those sharp, sporadic pains, and still get them occasionally. You're right, they feel like a bee sting, and only last for a second or two-enough to make you wince in pain. I get them in different parts- mainly my feet and hands. When I was in my thirties, I had these pains, and felt like my left leg was going to collapse under me. I couldn't figure it out, and attributed it to early onset of arthritis. Since my OPLL diagnosis, I have attributed most of my problems to this. I try to stay positive and keep moving- if only for a few minutes. We went shopping yesterday, and I use a shopping cart like a rolling walker. I have a handicap placard, and use it if I am having a bad day. After 3 stores, and walking for about an hour, my legs were beginning to feel like lead. I sat down when I could, and it helped. Sometimes you need to modify your behavior, in order to keep going, but that's the most important thing- keep going. Working in a hospital for 25 years, I saw everything from birth to death, now it's my chance to help others with any information that I can. When you are facing OPLL, and possible surgery, you have to be your own advocate and look out for your best interests. I pray every day, and my prayer list keeps growing. At first, I prayed for myself and my family, but now I pray for everyone with OPLL. I have found a peace and acceptance of living with this disease, but I will not give up. I will continue to pray for you, and all others facing this disease. Be well.

Big George
Posted 5/12/2009 2:31 PM (GMT 0)
I haven't been very good about posting lately. It seems to be all I can do to work my shift and try to do stuff around the house. I went to my PCP a week ago. She thinks I should be on pain meds 24 hrs.per day. I won't drive while medicated so I am taking them as soon as I get home. I also asked her about acupuncture. She recommended a practitioner that she use during her recent bout with breast cancer. I really feel comfortable talking with her. I wish she knew about OPLL. She just refers me to specialists. I will start acupuncture in 2 weeks. I am currently resigning myself to living the fullest life I can and putting OPLL aside for a while. I am fairly frustrated and don't want to be medicated trough my life to get by but I don't know where to turn. In July I will ask my Rheumy about it and see what she says. I will keep posted and look forward to hearing about everyone adventures with OPLL. I have to go and work. Hopefully this doesn't sound wacky as I woke up kind of hung over from my pain meds.
Thanks everyone and have a great day.
Nancy
Posted 5/12/2009 2:53 PM (GMT 0)
Hi Nancy,
Let us know how the acupuncture works for you. I thought about it a few years ago, but my heath insurance won't pay for it. I am seriously considering seeing a local neurologist who specializes in pain relief and control. A good friend is their RN practitioner, and she told me about some of the new pain meds. I continue to take OTC ibuprofen, which helps my arthritic pain and stiffness. I know some of those prescription pain meds are helpful, but leave you groggy in the morning. When I had my surgeries, they were good for the first 10 days, then I had to get off them, as I was groggy and disconnected. I switched to plain acetaminophen, and it helped manage the pain. I can sympathize with you, trying to work while having pain. I hope you find relief and can postpone surgery as long as possible. Be well.

Big George
Posted 5/13/2009 5:36 PM (GMT 0)

Hello Everyone,

Sorry I haven't posted lately. I did have my annual exam last week. My doctor had never even heard of OPLL. I did take an article to him. He gave me two names of neurosurgeons in Castro Valley, CA, to get a second opinion from. Doctors that he said he would go to himself. Also, he said I should get a third opinion, too. My calcium and vitamin D levels are low, blood pressure is up, cholestral is high. Now I'm back on hydrochlororthyiazid. Doctor wants me to lose a few pounds too. I did lose two pounds and have about fifteen to go. The process is slow because I can't really jog or walk a great distance.

I don't know if this will help anyone of not, but I did come across an article in U.S. News and World Report's on Best Hospitals rankings for Neurology and Neurosurgery: http://usnews.com/directories/hospitals/index_html/specialty+IHQNEUR/

Here are the first 5 rankings:

1. Mayo Clinic, Rochester, Minn

2. Johns Hopkins Hospital, Baltimore, MD

3. Massachusetts General Hospital, Boston, MA

4. University of California, San Francisco Medical Center, San Francisco, CA

5. New York Presbyterian Univ. Hosp. of Columbia and Cornell, New York, NY

If the above link doesn't work, just let me know. I may have copied it wrong.

UCSF is where I was diagnosed. I plan to seek a third opinion too. I expect both opinions will agree with UCSF. In the meantime, I keep trying to do research. I just live one day at a time, hoping and praying someone will find a way to stop this OPLL from progressing. I also keep remembering that Dr. Gillum said not to wait too long as not all symptoms are reversible. It seems I'm at high risk either way: a fall or surgery.

I'm so glad I found all of you.

Birgitta

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