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?
Hello again Jan, I will certainly stay in touch and will look at assisting you with setting up an OPLL web forum site. My private e-mail is firstname.lastname@example.org should you wish to contact me, and I hope that you do.
I more or less felt that something akin to a death sentence had been imposed on me and have decided to 'live more' with the time I have before my condition degenerates further. In the meantime I am trying to be as active as possible (walking,light gym weights and using a recumbent exercise bike)
I work with computers (CAD drafting) and have an external office setup at home. In this sense as long as I can sit in a chair and work in front of a screen, I am employable, I guess that I am lucky in this sense.
Bye for now, 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@example.com
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!
Post Edited (Big George) : 3/30/2009 10:24:10 AM (GMT-6)
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.
San Carlos, CA
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.
Hello Michael, Jan, Big George and Spunkers,
Glad to meet all of you. Looks like there are now five of us with OPLL. I’m almost 57. I was in an auto accident in March 2007 and diagnosed by my primary doctor with a slight neck sprain. Then my neck started stiffened up and continued to be very painful, I started going to a chiropractor. I’ve been going down hill ever since the accident. I thought chiropractic was helping but more problems kept popping up. I have had unexplained right wrist pain, my feet began hurting with a burning pain, my right shoulder started hurting on and off and I’ve had numerous aches and pains. I get tingling, numbness in my hands when driving, burning pain down the insides of my legs, burning pain in my right lower abdomen. I could probably write a book. I do get fatigued easily. I sometimes have dizziness when turning my head. I wake up in the night with shoulder pain. When lying down my eyes water. I get burning on my lips and tongue.
I no longer go to the chiropractor. He did some adjustments that gave me shooting pains from my neck to the top of my head. He did try and help. I have been diagnosed with carpel tunnel and tarsal tunnel syndrome. I went to Heart Scan and had my abdomen scanned. The scan showed that I had cervical stenosis with degeneration. I shared that information with my chiropractor and primary doctor. They both said that was a normal part of aging. I asked my primary doctor to refer me to Dr. Gillum at UCSF in San Francisco. She found degeneration at C4-C7 with a compressed spinal cord and referred me to a neurosurgeon. The neurosurgeon found in addition to degeneration that I was born with a narrow spinal canal and have OPLL. He wants to do a laminoplasty from C3 to C7.Dr. Gillum doesn’t want me to wait too long to have surgery.
However, I don’t have any major problems walking and can still work. I appear healthy. The surgeon said I might not be able to use my right arm very well for at least 4 months and there might be a possible second surgery. I’m pretty freaked out by this. I need a second opinion. Finding a better surgeon than at UCSF will mean some research and travel. Does anyone know the top surgeon for OPLL in the United States? I ordered the book on OPLL.
Also, I’m looking for a new primary doctor. I’ve had my thyroid removed in 1999 and the parathyroid glands were damaged. I have to take calcium all the time. I feel like the hypoparathryroidism may have caused the OPLL.
It was not symptomatic until the auto accident.
Sorry I posted in the wrong place. Some of you have probably already read this.
I appreciate your thoughts on all of this. Thanks!