Really good informaton on OPLL from the JNS Neurosurgical Focus

[JSerow]

Hi everyone,

I haven't been on much, but I was diagnosed back in 2009 and have OPLL throughout my entire spine, just recently found out that I have a major issue on my C2 vertebre.  I recently found this web site and if you look in 2011, March, you will find that the whole month of March was dedicated to OPLL http://thejns.org/loi/foc?open=2011#id_2011 .  I found my doctor from on of these papers, and I have met with him twice now. However he was in the process of moving from Baylor College of Medicne to the Mischer Neuroscience Institute, this is the group of neurologist that took care of Congress Woman Kathy Gifferd.

 

Anyway, I am not to sure about what to do, I know that I am playing with fire, because of the severity of my OPLL in my C2 location I could end up paralized.  I know I need to have surgery but I have been putting it off, I read all your posts' as I get them in my e-mail.  And from what I read, it looks like I am in for a lifetime of pain one way or another. 

 

I hope that this link that I have posted is helpful to all of you, I know that the papers are written in medicalese, but googling really helped me with some of the terminology. By the way I downloaded all the papers on to my computer so that I could read them. 

 

I pray for all of you to be pain free,

God Bless

JSerow

[JAN MCKIM]

Thanks for sharing these research papers with everyone!  When I return from vacation Oct. 6th, I plan to read them.  I've been reading everyone's posts but haven't responded since we don't often have wifi where we're camping.  I just want to let everyone know that I feel very, very fortunate to be part of this group that has been so supportive and informative. 

I had a laminectomy and fusion from C2 to T1 in 2004 by Dr. Philip Weinstein at UCSF (in San Francisco, Calif.).  It was a difficult surgery, and it took about 6 mos. before I was ready for physical therapy.  However, after about a year, I felt stronger and was able to resume many activities like walking my dog several blocks to the park, driving and continuing my physical therapy exercises.  I don't experience any tingling in my arms and legs any more but I do have limited range of motion of my neck, and I'm unable to perform any heavy gardening, lifting or repetitive movements of my arms/hands.  Mostly, I'm pain free from the opll , and I'm glad that I found Dr. Weinstein who is a marvelous physician.  Luckily, I had retired in 2002 so I'm able to pace myself and avoid those work activities that aggravated the symptoms of my opll.  I do have other medical problems that are also challenging and require meds that can cause side effects.

I've learned from everyone here in our little group that we're all different regarding our symptoms and the progression of opll.  I advise anyone new to this group to spend time researching opll and finding a surgeon who has experience with this disease that is so perplexing.  When I return home, I hope to share the list of members and their doctors that I've compiled from previous postings.  I think that it would be helpful to those who are searching for drs. experienced in treating opll.

I wish everyone the best as you find solutions for your pain and improvement in your conditions.

Hugs,

Jan
San Carlos, California

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From: JSerow <jse...@swbell.net>
To: opll_di...@googlegroups.com
Sent: Thu, October 4, 2012 8:58:01 PM
Subject: Really good informaton on OPLL from the JNS Neurosurgical Focus

[Big George]

Hi J, 

   I want to encourage you to keep the faith. I thought C1 and C2 injuries meant certain paralysis or even death, but I saw a story on The Doctors about a woman who was rear ended in an auto accident which caused whiplash and knocked her skull off her Atlas C1. She couldn't raise her head and her chin was on her chest. Why the ER didn't do a cross table lateral C spine film to clear or diagnose her, I don't know. She was sent home with pain meds and muscle relaxers, but didn't improve. Eventually she had a doctor order a CT scan which showed her decapitation. By putting her in a halo device and gently increasing the traction on her torso, the neurosurgeon was able to attach her head to her spine with titanium hardware. She walked onto the stage, and I was amazed. She does have a completely fused neck and can't turn her head, but she is alive and has minor deficits. Before my 1st big surgery in 2004, my neurosurgeon warned me of falling and auto accidents, which could cause damage to the compressed spinal cord. Please be careful as C2 compression is so serious- even minor damage could cause serious life threatening outcomes. Is there any way you can research a neurosurgeon who has performed this type of surgery? The neurosurgeon who was on The Doctors was from Vanderbilt in Nashville, Tenn. Thanks for sharing your link to the OPLL articles. I've already skimmed through most of them, and find them very informative. Maybe this increased interest in OPLL will start better treatments and surgical procedures. I will keep you in my prayers.

All my best,

Big George

[socaloceanlover]

big george,  when my husband was first dig. with opll in 2009 we were told to go online to get more information and understanding of this disease.  i have to tell you we read info from you  that helped alot.  we did go through a period of not believing this could be happening and denial.  thanks for your shared info diane

[JSerow]

George,

Thanks for the encouragement, I am really careful about everything that I do, even walking.  I use a cane to help me get around, but for lots of walking I have a nice power chair.  Anyway, the doctor that I am now seeing for my condition co-autored one of the papers on the JNS web site that I linked, and I think that it is a really good paper, it covers all the information that there is on OPLL, however it is just short detiled information, but it is very informative.  The paper that he co-autored is "Ossification of the posterior longitudainal ligament: a reveiw"  I highly recomend that you read this one first, when I read it I wished that I had. It is the 2nd paper on the list. You can save the pdf file on your computer so you can read it at your leasure.  The thing that I liked about this papaer is that it breaks things down, as to type of procedures and success rates along with some rare and common side effects from the surgeries.  Anyway the doctor that I am seeing is Dr. Daniel H. Kim, and it was funny the first time I met him, he came into the exam room and the first thing that he said was "You'r not asian!?!".  The visit was very short as, he was running way behind, but he had me do more MRI's and a milogram before my next visit.  2nd visit I made sure that I was either the 1st or last patient of the day, that way he could spend more time with me, and I was his 1st and he spend 20+ minutes talking and explaining things to me, this actually mede me feel a bit better, but he did show me the stenosis on my C2 location and it is really bad, don't fall down hard bad. But before he can preform surgery on me he needs me to loose abut 130 lbs, which is a lot to loose without being able to get cardio exersise. I am likely going to have stomach reduction surgery to help me out,

 

Diane,

I hope that your husband is doing better, denial is a big part of what he is experiencing, as will depression.  All that I can say is be strong and be there for him, you are a Saint in my book, as is my wife.  I still work full time and sometimes my work is very physically exausting, I come home after 8-13 hours and the first thing that I do is take my shoes off then I change into sleeping shorts and lay down for at least 30 minutes before I can do anything else, even supper.  My wife helps me out by bringing me my meds and a glass of water and even supper sometimes when I just can't get to the dinner table.  Also know that this stupid desiese really causes exaustion, I am exausted after I take a shower in the mornings, and have to sit for about 10 minutes before I get dressed,  I have been living whith this since 2005, diagnosed in 2009, and I am just now starting to look into the things that I need to do for surgery.  I want you to know that over the time I have come closer to my Lord, and I accept whatever he gives me daily.

 

I will keep you both in my prayers

God Bless You,

John Serow

[Pamela Brockus]

John, Thanks so much for the link to the Journal articles. I saw a Genetic Dr a few months ago, and he actually printed me off the article that your Dr co-authored, OPPL Review. It was very interesting read. I had my c2-c7 surgery for OPLL in 2006. Prior to my surgery, the OPLL caused severe stenosis with spinal cord compression in my c-spine. I kept the MRI report from prior to the surgery, and it showed the diameter's at each level in my spine. The diameter was narrowed to as little a 3.5mm at my c5-c6 level. Other levels were as narrow as 4 mm also. After researching over the years after the surgery, I realized I could of been paralyzed with that severe of compression on my spinal cord before I had surgery, and I am really blessed that it didn't happen. The Neurologist and Neurosurgeon I saw prior to surgery both expressed what a walking time bomb I was, but I really didn't understand it  to I really researched it a few years after surgery. I am still walking at this point, almost 6 years after surgery, so though I am not perfect after surgery, I am very glad I did have the surgery. I get new MRI's of my spine each year since to monitor the progression, so far I am not severely compressed yet again. I hope I never have to have surgery again, but I will do what I have to do. 
Thanks again for posting the link to the Journal. Great info!!!
Pam
 

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Date: Fri, 5 Oct 2012 23:17:37 -0700
From: jse...@swbell.net
To: opll_di...@googlegroups.com
Subject: Re: Really good informaton on OPLL from the JNS Neurosurgical Focus

[JSerow]

Pam,

One of the things that Dr. D.H. Kim told me is that the OPLL progresses (grows) very slowly, he told me that it is likely that I have had mine for decades and the symptoms brought on by a severe car accident that I was in back in May of 2005.  I am glad that your surgery worked out for you and I hope and pray that you do not have to repeat it.

God Bless,

John

[Kiwi]

On Sunday, 7 October 2012 04:52:34 UTC+13, ksopll wrote:

John, Thanks so much for the link to the Journal articles. I saw a Genetic Dr a few months ago, and he actually printed me off the article that your Dr co-authored, OPPL Review. It was very interesting read. I had my c2-c7 surgery for OPLL in 2006. Prior to my surgery, the OPLL caused severe stenosis with spinal cord compression in my c-spine. I kept the MRI report from prior to the surgery, and it showed the diameter's at each level in my spine. The diameter was narrowed to as little a 3.5mm at my c5-c6 level. Other levels were as narrow as 4 mm also. After researching over the years after the surgery, I realized I could of been paralyzed with that severe of compression on my spinal cord before I had surgery, and I am really blessed that it didn't happen. The Neurologist and Neurosurgeon I saw prior to surgery both expressed what a walking time bomb I was, but I really didn't understand it  to I really researched it a few years after surgery. I am still walking at this point, almost 6 years after surgery, so though I am not perfect after surgery, I am very glad I did have the surgery. I get new MRI's of my spine each year since to monitor the progression, so far I am not severely compressed yet again. I hope I never have to have surgery again, but I will do what I have to do. 
Thanks again for posting the link to the Journal. Great info!!!
Pam
 

I'd like to add my thanks for the journal article link.    Have only dipped in to them so far but a great reference point for the future.   I think I am one of the more fortunate of our group so far with only mild symptoms to deal with but with such a small population NZ is not going to have the same number of knowledgable doctors should I need them.   I was lucky when I had my laminioplasty in 2009 but have been told  the neurosurgeon is now working overseas.    I appreciate the information and support that comes from this group and wish you all well.

 

Kiwi