OPLL (Ossification of the Posterior Longitudinal Ligament)

H541
  • By H541 · June 5, 2009 at 12:53 pm · 55 replies
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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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oldmacuser2005

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.

Sunnyest1
  • By Sunnyest1
  • Reply 694332 · In reply to 692190 by oldmacuser2005
  • January 10, 2010 at 2:21 pm
  • Report post

Where do you live, OldMacUser? I go back on Jan. 19 to ask more questions, get answers, and see what is recommended and why. I live in Arkansas with BCBS. I am worried about who I can get that can do this type of surgery and is familiar with OPLL. My neuro is good, but won't tackle this surgery (evidently why he told me this would be life threatening surgery only to be done in a "heroic" situation.) He has only seen OPLL in his practice two other times. I will see who he recommends me seeing. The gabapentin that they put me on for the last 4 weeks has done nothing to help the painful burning and other symptoms that I have. I hope you continue to heal swiftly and effectively! I know what a bummer it is wearing that collar 24/7 since I have had to do it twice for laminectomies done over the last 8 yr.

kansasopll
  • By kansasopll
  • Reply 694905 · In reply to 692191 by oldmacuser2005
  • January 10, 2010 at 10:05 pm
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wow, I am amazed that you are in a whole lot of pain. You must have one great surgeon. Who worked on you? What was the OPLL doing to you prior to surgery? Was it compressing nerves, spinal cord? What was your symptoms, and what are they now? Again, you sound like you are doing very well as far as the pain part goes. Really surprised about that, as I was in a whole lot of pain after my surgery, and was for awhile afterwords.

oldmacuser2005

Good Morning Sunnyest1 and Kansasopll,

I am now at day four. My throat is a little sore and the spine between the shoulder blades is a little stiff from lying on the OR table. Flexeril relieves the shoulder pain. Cold/ice water relieves the throat soreness. Yes, I do have the strong medications if I need them. In hindsight, my OPLL began at least five years ago except it was not diagnosed. I started complaining about numbness in my right arm and went to the family physician and a chiropractor for relief. The pain eventually went away. However it came back with a vengeance this fall along with numbness of my left hand ring and pinky finger. After completing the MRI which showed my spinal fluid had disappeared between C4 and C5, Dr. Poffenbarger, as a precaution, ordered a CT scan to see if I had OPLL. The original surgery, until the OPLL was discovered, was scheduled for about 1 and ½ hours. With the new diagnosis, we met Dr. Poffenbarger in his office to find out the OPLL surgery would stretch out to about 3 hours.

My Nerosurgeon is Dr. Glen Jeffery Poffenbarger (spelling is correct) and the surgery was completed at Mary Washington Hospital, a Magnet facility.

Dr. Glen J. Poffenbarger, MD
Suite 207, 1101 Sam Perry Boulevard, Fredericksburg, VA
(540) 374-3200‎

Dr. Poffenbarger served as a field Neurosurgeon in Iraq and I chose him because he has a great reputation.
Dr. Poffenbarger appeared on Oprah and the following is the link to that information. The story is about Jessica Clements, a wounded soldier. Enjoy the entire article.
http://www.oprah.com/slideshow/oprahshow/oprahshow1_ss_20061113/8

This is the link to the local Fredericksburg newspaper article:
http://fredericksburg.com/News/FLS/2006/042006/04022006/167783/index_html?p age=1

oldmacuser2005

Please note the date on the previous links is 2006.

kansasopll
  • By kansasopll
  • Reply 696437 · In reply to 692190 by oldmacuser2005
  • January 11, 2010 at 9:08 pm
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Dear Oldmacuser2005,
Thanks for sharing. Very glad to hear that someone with this opll mess is doing pretty good after surgery. You have been blessed with a good surgeon obviously! Since you are complaining a little about your throat I am assuming you surgeon went in from the front of your neck. My surgery was all done from the back of my neck. I am very curious as to whether your surgeon actually removed the opll, or did he just make more room for the opll (as mine was) in your spinal column. Please write back and let me know whether he removed the opll or not. If he was able to do that, then hopefully you never have to deal with OPLL again, unless you develop some more in other areas of your spine.
Thanks also for sharing your dr. info also.
Pam

oldmacuser2005

Dear Kansasopll,

Good Morning,

The throat is better this AM. He did have to go in from the front of the neck. I believe part of the pain is from the surgery and the other is from the breathing tube. Dr. Poffenbarger did remove the OPLL that had attached to the spinal cord. We knew all of the possible outcomes before I entered surgery and of course are very pleased with the outcome. So far, all is OK. Just a note: Like you and the others sharing their experience here on Inspire.com, I had great difficulty finding anyone who could "talk OPLL" besides doing the surgery. Have a great day! Jim

ouch0106
  • By ouch0106
  • Reply 698068 · In reply to 500966 by sydcass
  • January 12, 2010 at 9:20 pm
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Hi I had posted a few weeks ago about OPLL in my cervical spine. I also live in Houston. I just went today to Methodist Neurosurgical center in Scurlock Towers in the Medical Center. My prayers were answered. They know what OPLL is and can do the surgery there. Well...at least they knew what it was and the doctor is going to present my case to the other doctors in their group. The doctor I talked to was actually trained in Cleveland Ohio. Im not sure if we are allowed to give doctors names on this site but since you live in Houston you should be able to look up Methodist Neurosurgical Center. Hope this helps. God bless.

ouch0106
  • By ouch0106
  • Reply 698099 · In reply to 696437 by kansasopll
  • January 12, 2010 at 9:40 pm
  • Report post

Hello. I just posted a few minutes ago about neurosurgeons in Methodist Hospital in Houston. I would also like to comment to this post. According to this doctor in my case they will be doing a back or posterior approach not from the front. He said they will not actually remove the posterior ligament but will try and remove at least some of the OPLL. I thought this was a little strange but he says with as much OPLL as I have (C-2 to C-7 that removing it all would be to risky. He said they would be widening the spinal canal. He did say tho that sometimes some of the OPLL may actually be reabsorbed but that there is always the chance of it coming back even if it is all removed. Has anyone heard that before? How long did they tell you recovery time would be? He said to expect to wear a cervical collar about 3 months and if everything goes right should hopefully be able to return to work in 4 months. As a single mom with a 14 year old daughter being off work that long is very scary...but not really much alternative. I wish all of you who have already had the surgery a speedy and pain free and infection free recuperation.

kansasopll

Hi Ouch, Glad to hear you found someone in texas who can help you. I don't think there is a problem telling who your surgeon is on here. I see some of us have already told, including me, and I am still here. So please share who your surgeon is. From what I've read about removing the opll, and what my own surgeon told me, it is dangerous to remove it. So, OLDMACUSER, is one lucky guy, to have his opll removed, and not have complications because of the removal. They can tear the sac that holds your spinal fluid and put a hole in it, if they try to remove opll that is attached to the sac. But from what I've read, not everyone has OPLL attached to the sac. So maybe that was the case for OLDMACUSER. Sounds like your surgery is pretty much what I had. From the posterior, or back not front, and they are widening your spinal canal. My surgery was mainly called a Laminoplasty. I wonder if OLDMACUSER, had what the they call a Laminectomy? When is your surgery scheduled Ouch?
I was telling you all in my previous text, that I recently learned that I have another ligament that is ossified, throughout my thoracic spine. It is called ossification of the ligamentum flavum(OLF). What little reading I can find about the OLF, it happens sometimes with people who get the OPLL. I have this OLF at almost every level, 12 of them, throughout my middle back. I found a study on the internet, and it sounds like I am SPECIAL, in that, I have more levels of this OLF than most. In fact, as of a study done by John Hopkins University done in 2008, there was only 2 people in the whole wide world with documented OLF with as many levels of OLF that I have. I don't like being special or rare, as you all can relate!!!! I saw a Pain Management Specialist yesterday at KU Med Center in Kansas CIty yesterday. He is going to attempt to do an Epidural Injection in my middle back, to see if this will help with the pain, tingling, creapy crawly sensations that I am having in my back and chest. The Pain specialist confirmed that the middle back is more dangerous to do anything to, compared to my neck, because your lungs are right there also. I am planning on 2 epideral's being done. The first will be Jan. 25th. I don't need the surgery on my middle back, because my spinal cord isn't being compressed severely yet. It's just moderate now. But it sucks to think about having to have this middle back surgery on the future.
Oldmacuser, please keep us updated on your progress. Is your numbness still there?
Ouch, please also keep us updated on your surgery and when it is.
Pam.

pearberry

Hi All,
I'm still recovering from my OPLL surgery. I had a great surgeon. It has been a slow go, but I'm feeling much better. My scar starts from behind my ear and goes down to my chest. It's about 71/2 inches long. My ear is somewhat numb from the deep cut, but it's getting better. I'm getting treatment twice a week trying to gain my strenght back and ROM in my neck. I losted 75% ROM. There are times when my left leg gets weak and I have to walk with a cane, but it too shall get better. There isn't as much tingling, but I do have a lot of pain between my shoulder blades. I also have pain that goes down my spine that hurts a lot. I can't sit are stand for a long period of time, or lift anything with much weight. Only a few pounds right now. I'm so glad to hear the success story. Take care and remember we need to pray for everyone to get though this painful situation.

oldmacuser2005

Good Morning from the East Coast,
One week down and five (or more) to go in the brace. I will try to answer some of your questions. On my hospital admission sheet I had a C5-6 Corpectomy and fusion. I have about a 2-3 inch incision on the right side of my throat. i still have numbness in my left hand that appears to be subsiding. this may take longer because I procrastinated the surgery for over two months while I researched the surgery and surgeon. Pearberry, I also have the nagging pain off and on above but between the shoulder blades. My surgeon warned me i would have this as a result of the positioning on the operating table so he prescribed Flexeril, which in my case solves the problem. This pain is subsiding. I have two weeks until I return for my second x-ray after surgery.

nusparkey

Hello All,
Sure wish I had looked this up sooner. I'm not even sure what brought me to this page but here goes;
I am a 55 y.o. Caucasian, work in the trades in the Chicago area and through an accident at work was diagnosed with OPLL in August of 1998.
Being a workmans' comp case most of the docs didn't want to touch me, even our GP, but they tried physical therapy for a couple of months because the x-rays showed a herniated disc at C5-6 and I had no feeling in my right hand and lower arm. The pain was incredible. I did some searching and was told by a hospital administrator friend of ours that one of the best neurosurgeons around was in my hospital (not his much to his chagrin) When the PT didn't work out well our GP sent me to this Neurosurgeon, who was within the same hospital group.
He had MRI done, had another one done, sent me for a CT scan then for a 3D CT scan with contrast and color.
I could tell by the look in his eyes that he didn't like what he saw as he explained to me what was going on and what had to be done.
I remind you that this was in 1998 when hospitals and insurance companies weren't so afraid of treating patients or paying for it.
I had fractured vertebrae at C4-5-6&7, tiny fractures but none the less. Discs between C3-4-5-6&7 were all herniated, no wonder I was in so much pain.
Now the good news. The doctor performed a 3 level corpectomy with instrumentation. (That was the official name) All of the herniated discs were removed along with C4-5-6. The posterior parts of the vertebrae were left intact. The posterior longitudinal ligament was so ossified it too had to be removed by a laser surgeon from Sweden who happened to be at the hospital demonstrating the new equipment. (Lucky or what) The vertebrae were replaced with a donor Tibia surrounded by a Titanium cage and a Plate was fastened to C2, C7, and the bone in the cage.
I WILL admit that recovery was long, painfull, and time consuming but here I am, 11 years later and still talking about it.
I went back to work with restricted duties in January of 1999. Surgery was September 15 of '98. I am still with the same employer.
NONE of this was easy, to this day I still have bouts of pain with my whole spinal column readjusting itself to the new parts I had installed but I am sitting upright walking around and enjoying life and probably a lot more than most people. I have been given a second chance.
My doctor was/is Dr. Jerry Bauer out of Lutheran General Hospital in Park Ridge, ILL.. 847-698-1088
A neurosurgeon I would recommend to anyone.
Good luck to all of you with problems but there IS hope out there, you just have to find it.

nanajani

Hello, I am a 60 year old white female. I have been having terrible back pain since 1968 when I was 18 years old, it just came on suddenly one day, I never had a injury. I took many years of pain before I was told I had discogenic disease and arthritis in my lower back. I have had 3 spinal surgeries and have never been pain free. The second surgery was a fusion, it broke 10 years later, Oh my gosh, I thought I was dying when It broke!! Much worse than labor pain!! I went to Stanford and they did a fusion, front and back and put in 2 rods and several serews. About 5 years after the last surgery, I started feeling like I had the flu all the time, I was very tired and I was just so sore all over my body. I now have C.F.S. ( chronic fatigue syndrome ) and fibormyalgia. About a years ago my neck started really hurting, I figured it was just all the stuff I have acting up. I was sent back to Stanford, that is when I was told about the OPLL. I am having the surgery on March 3rd. I have had two very serious D.V.T. ( blood clots ) and my doctor, Dr. Park, is very concerned that I may have another one. I have a appt. with a hemotolgist before surgery and then if nessary a vascular surgeon to put in a filter in my vein to catch andy clots that may get past the stent I all ready have.
I never seem to do anything normal when It come to my health, my family is so great and have always been there for me. I have keep my self in a positive state of mind, if I don't, I am afraid I would go crazy with all this weird stuff I keep coming up with!!
This sight is really wonderful, it gives us a place to talk to others who share this with.
Thanks, Nanajani

oldmacuser2005

Good Morning again from the East Coast,

I have completed the first three weeks of recovery and the x-ray shows all is healing properly. I won't know until week six whether I can remove the neck brace. About 4 days after the surgery, I was prescribed a unit to wear around my neck 4 hours per day to stimulate the bone growth in my neck. The manufacturer of this device is Orthofix. Of course I won't know the results of wearing this device until I get to the end of recovery. Their website gives detailed results after wearing the device.

Have a Great Day!

Oldmacuser

H541

Hi Everyone!

Well bad news from Nevada. Unfortunately the doctor that did my surgery did it incorrectly and it has to be redone; he and his assistants probably should have taken the time to REALLY read my charts/reports. I advocate very strongly for myself and after different opinions I decided that he was the best since physicians have gone to him too. I can only believe what surgeons tell me unless I read or have been told otherwise (I use state medical website to see how many malpractice suits they have had prior to visiting a new doctor, everyone makes mistakes but some more than others.) Anyways, he told me he would take care of the osteophytes in the discs that he fused, which is why I was shocked when I received the CT results showing that he fused a disc without cleaning out the osteophyte. Because he did not refer me to a neurosurgeon (which I was not aware I needed) he caused more damage; he also caused more damage because he did not pay attention to the space in-between C4 and C3; I asked about this and was told "no problem" then after the surgery I was ignored and told that is not what my pain problem is from. The surgeon actually refused to see me anymore and requested that I see his PA; come to find out after a CT scan it is the source of some of the pain. Now there is permanent nerve damage too.

There are osteophytes (bone spurs) on the inside of my discs C3, C4 and C5 and they all need to be broken and then have the osteophytes removed. Now that C5 has been fused the osteophyte is puncturing the sac and pressing on the spinal cord. As you all know this is very dangerous. I now have to have the C5-C7 fusion taken out and then have C2 or C3-C7 fused anterior (front) and posterior (back) because of the degenerative disc disease, bone spurs and OPLL. They were also willing to remove the OPLL which is very dangerous; the new surgery should allow room for the spinal cord to flex when OPLL changes the pressure on the spinal cord throughout the years.

I now have to find a surgeon that is not in Nevada and has done this type of surgery with success (I am very worried - the risk of infection and complications is really high which they seemed uncomfortable with.)

I thank each of you that has been through surgery like the one I am facing, you making it through is inspiring to me.

Off to search for surgeons....

kansasopll

Hello all,
Nana, I also have CFS. Was diagnosed in 2006. Learned within 6 months after the cfs diagnosis that I had opll with severe spinal cord compression in my cervical spine and had the surgery 12/06. Now having middle back problems and have been diagnosed with OPLL and Ossification of facet joints and the Ligamentum flavum in my Thoracic spine throughout it. SUCKS! I had a Interlaminar Epideral Thoracic Injection this past monday to try and help some of the sensory symptoms I am having in my back and chest. The Injection has not helped at all so far. In fact I am hurting worse. Tried Physical Therapy for the first time for the middle back this week also. Just caused more pain in my back and got my neck stirred up and hurting more than usual. Actually, we did very little in PT. According to my Neurosurgeon and Neurologist and Pain Management Specialist I do not need surgery for the middle back yet. My spinal cord is getting crowded in the middle back, but not too severely yet I am told.
H541, I have started thinking about finding another neurosurgeon, to get another opinion about my Thoracic spine mess. I don't know what you think about traveling to have surgery, but I'm thinking it is going to be very difficult to have surgery in another state. Seems to me, if I have surgery in another State, I'm going to have to stay whereever the surgery is for at least a few weeks till have a followup appt, Probably would need a companion to go with me, to help me while there. Going to get really expensive flying back and forth there. Plus living quarters will surely be expensive. Car rental, etc. Most of us don't work anymore and can't afford to spend a great deal of money.
I applied for Social Security Disability in 06. Was denied repeatedly. Last summer the SS law Judge also denied me SS disability. My Attorney filed another appeal for the Law Judges decision.
OldMacuser, Hope you have a good surgical outcome. Please keep us updated.
God Bless us all!!!!!!!!!!!!!!!!!

pearberry

Hello Everyone,

Help!!! I need to know how often has your Dr. suggested each of you to have a complete spinial MRI, or some other test to detect the re-growth of the OPLL. I"ve only had a cervical MRI, which showed the opll from C-3 to C-7. I'm dealing with a lot of pain in other area in my back. Thanks.

H541
  • By H541
  • Reply 737634 · In reply to 737263 by pearberry
  • February 9, 2010 at 11:39 am
  • Report post

Pearberry, I have had one or two MRI's per year and one CT scan every 18 months or so. The CT scans show the bone better and the MRI's show the ligaments/discs (tissue too) better; that is why the doctor asks for both. The OPLL really shows up well with a CT scan, I can even see it on a CT scan without knowing anything about reading films.

My doctor has me complete one or two per year because the areas can change very drastically from year to year. Especially since they do not know much about OPLL and its advancement here in the US. They know that it causes a lot of pain and prefer to monitor each year.

oldmacuser2005

Good Morning again from the East Coast.

Week 6 is complete and I met with the PA this morning. All is going according to schedule. One minor correction to a previous post is my titanium plate is fastened to C4 and C7 with a spacer between them. The C5 and C6 disks are removed along with all of C5 and most of the C6 vertebrae and the OPLL. The spacer between C4 and C7 is filled with bone from my vertebrae and has started to fuse. We could actually see the bone growth from the x-ray taken on the day of surgery and the x-ray taken yesterday. I will be in the neck brace for at least another six weeks when I return for the next appointment with Dr. Poffenbarger. See a previous post for his information. I am also required to continue the use of the ORTHOFIX collar for 6 to 9 months to stimulate bone growth in the spacer. More to follow.

Have a Great Day

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