Wow, there are other people with OPLL

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Anna06
New Member


Date Joined Apr 2009
Total Posts : 1
   Posted 4/23/2009 10:46 AM (GMT -7)   
I am so very glad to find a message board about this condition. 
 
Symptoms:  Numbness in left hand up to forefinger and arm; numbness in right hand up to pointer; numbness in legs and feet; and unable to sleep comfortably.
 
I was diagnosed with OPLL after my second fusion surgery in November of 06 (at 39 y/o).  The first fusion surgery (Aug 06) for C4-C5/C5-C6 was hard enough, but after a severe coughing fit, I had the second surgery in Nov 06.  I was told by the neurosugeon that there was a piece of calcified ligament that she tried to remove, but it kept tearing the dura.  She finished the refusion and closed me up.  She had me wait a few months and see if there was any improvement.  I was not so lucky.  I was referred to Neurosurgeon in SF.  After several more months he said we would go in anteriorly on the first; posteriorly on the second, would have to fuse C4-C7.  He said it was bad but he had seen one worse and had been able to help.  After the two surgeries, the symptoms were worse.  I had a CSF leak and spent 5 days flat on my back in CCU.  After CSF leak I was still complaining that it felt like my left hand and arm were broken.  After followup CT they found that there was still a bone fragment sticking out at C5...back into surgery to fix that.  I finally went home the Monday before Thanksgiving.  On Friday, noticed that wound was seeping...Monday they diagnosed MRSA.  Back to the hospital, infection was down to hardware (two bars with 8 screws and a cage).  Stayed another 8 days, released with pic line and 17 weeks of intravenous Vancomycin. 
 
Seventeen months post surgery, I still have numbness in my hands, weakness, thyroid is shot, stumbling issues.  When last spoke with doc he said that I most likely have permanent nerve damage.  Which I wonder about because all of the Nerve studies done during surgery said no nerve damage.
 
My internal medicine doc has put me on Cymbalta which has really helped.  I have been able to reduce the amount of pain meds and I use an arthritis glove at work for typing.  I wish that someone could have told me in the beginning that I would probably never be the same.  Instead, I have hoped that with each successive surgery that I would get the feeling back.
 
Would love to hear what others have experienced to see if there is something new to try.  I am ever the optimist (ok, most days).
 
Anna
 
 

Big George
Regular Member


Date Joined Mar 2009
Total Posts : 41
   Posted 6/5/2009 7:12 AM (GMT -7)   
Hi Anna,
I am so sorry to hear of your ordeal. You have had a rough go of it. I thought I had it rough with my surgeries and post op infection in 2007, but you have had an extremely difficult time. I had a leak after my anterior approach fusion, and was a small leak dripping out my incision. My doc added a couple of stitches to the incision and the leak healed on its own. After my posterior approach laminectomies, I developed an infection, got the pic line, and IV Vancomycin for 2 months. I have similar symptoms, as you, the numbness, and the clumsiness. Sometimes, if you don't wait too long to decompress the cord, you get feeling back, but once there is never damage, it doesn't get much better. I am glad to hear the Cymbalta helps you. As for new treatments, I'm afraid there are none. The only effective treatment is to have surgery and decompress the affected area. I have adapted- I use extra mirrors to drive, and use a grab stick to get things off high shelves. I think the most important thing is to keep moving, try to keep a good attitude, and never give up! I am in my 51st year, and was able to do most things up until about 2002, when I started having symptoms. The most difficult thing for me, has been swallowing my pride, and asking for help. My family and friends have been wonderful and very willing to help. Be well, and stay strong.

Big George

NanMac
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 6/5/2009 11:47 AM (GMT -7)   
I am still around. Been very busy with work and personal issues. I have been to 2 Acupuncture tx. for pain. The second seems to have helped some. She is also trying Cupping. I am not sure what is working because she is doing both. I will give more detail of what it was like if anyone is interested. I have cut back on some of my pain meds but I am not sleeping as well as I had hoped. I try to be as little medicated as possible as I work. I usually will take a couple of tylenol to get through the work day then after I get home I need something more so I can get some sleep at night.
I hope others will come back and post! It is very frustrating to have this condition and not know what to do about it.
Nancy

NanMac
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 6/25/2009 1:10 PM (GMT -7)   
I am hoping we can get another forum going concerning OPLL. I hope by bumping this message I can get some replies.

Is there anyone else who has tried Acupuncture? I am curious what results you may of experienced. I am not sure if it is helping or not. I have had some results but I also have been probably doing to much lately and increasing my pain. It is very frustrating to have to limit my activities. I have a PCP appt. and will discuss this with her later today.
Nancy

redviola
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 7/20/2009 1:48 PM (GMT -7)   
Hello all,

I have been experiencing severe pain in the back of my neck for many months, maybe even a year or so. Drs thought it was because I suffered from whiplash a couple of times. Turns out that I have opll. Was diagnosed a week ago by the chief of neurosurgery (spine center) at Beth Israel in Boston. I was told he was the best around. I will be going into surgery on Wednesday. My symptoms are neck pain and electrical shock feelings. Tingling fingers and now tingling toward the palm of my hands. Some strange body pain, almost like something is rolling around inside on my arms and legs. Clumsiness, no strength in hands and headaches from the neck pain. I have noticed changes over the last several months. Dr Michael Groff from Beth Israel is doing my surgery. He said I was at the stage where it was necessary to have it now. I feel for all of you. He is confident that I will be better after surgery. He has done 5 other cases of opll in his career. Definitely rare. My c4 & c5 are going to be removed and a plate put in to resemble those discs. Then open up the spinal cord area so the fluids can drain properly. I am a nervous wreck over ths but all the medical personnel I have spoken to have told me all will be fine. So I have to go with that. Hope all will be fine with all of you as well.
Thanks
Karen

Big George
Regular Member


Date Joined Mar 2009
Total Posts : 41
   Posted 7/22/2009 11:55 AM (GMT -7)   
Hi Karen,
Welcome to the 0.2% of the population with OPLL. Don't be nervous, the surgery and recovery time will go quickly and you will notice a difference after surgery. It is worth the aggravation- my surgeries have kept me walking, where I thought I would be in a wheelchair. Once your spinal cord is decompressed, the numbness, tingling, and other symptoms should subside. I hope and pray that you don't have any progression with OPLL in other areas. Everyone is different- some people only need one surgery and never have any more cord compression. After surgery in 3 areas, I am at a plateau, and hope I can keep going without any more surgery. My neurosurgeon is a great guy, and I give him all the credit in the world for keeping me ambulatory. Good luck, I am confident you will have a quick recovery, and be able to resume your previous activities.

Big George

NanMac
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 7/22/2009 9:04 PM (GMT -7)   
Hey George,
Nice to see your still lurking. It sounds like Karen is having surgery today. I will keep her in my prayers.
My update:
My Rheumy had all of my spine xrayed. She is going to review my Xrays with a bone radiologist to see if I have DISH. The reports mention that I have severe facet joint hypertrophy in both my cervical and lumbar spine. Do you know what that means? I googled it and I still don't understand.I also have "Bulky" osteophytes though out my lumbar spine and moderately severe DDD at C6-7. It will be interesting to get another Physician of my condition. I just need to hang in there to see what my final DX might be. Hope your having a nice summer. Thanks for being here for us OPPL'ers.
Nancy

Big George
Regular Member


Date Joined Mar 2009
Total Posts : 41
   Posted 7/29/2009 6:29 AM (GMT -7)   
Hey Nancy,
I'm still here. I found this explanation online "One of the duties of your spine is to give your body support and carry the majority of its weight. The vertebrae in the spine bear the majority of this weight, which is then spread to bones in the back portion of each vertebra called the facet joints.

The Facet joint is a synovial joint, which means that it is surround by a capsule of lubricating fluid. Facet joints helps to give you a free range of movement, including twisting, turning, bending and reaching upward. Like all other joints in the body, they are subject to developing arthritis." Hypertrophy is the enlargement of these joints. I hope this helps. Here is the link: http://www.facetdiseasefacts.com/facet_hypertrophy.
I am having a good summer- we just finished a 4 day camping trip, visiting the bourbon distilleries on the bourbon trail in Kentucky. I am a little stiff and sore, because I had to quit taking OTC ibuprofen,as it was causing my feet and legs to swell. I hope and pray you get some relief from your pain and numbness. We need to keep moving and stay as flexible as our bodies will allow.

Big George

Big George
Regular Member


Date Joined Mar 2009
Total Posts : 41
   Posted 8/22/2009 6:12 AM (GMT -7)   
Hey Nancy and fellow OPLL people,
I received an e-mail from Jan,yesterday, with some promising news in research. Here is the info



This is exciting research which could lead to a treatment. This would switch the genes off, that convert ligament cells into bone cells. It is early, but if this works in humans, we could be looking at an end to OPLL! Thanks again to Jan for sending this info. Be well, and keep moving.

Big George
 
Edited due to the breach of Forum rule #9, if you made a link to the information that would be better.

Post Edited By Moderator (SydneyJo) : 12/4/2009 1:52:15 AM (GMT-7)


RockDoc
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 8/29/2009 7:35 PM (GMT -7)   
Hello all OPLL people -

I just found this thread/forum and decided I would reply. I'm new to OPLL - just diagnosed this month. I'm 47, from the Seattle area, and began having really bad neck pain a few months ago. I've not been able to sleep more than a few hours at a time because of the neck pain. Hands and lower arms have been going numb for a long time - thought that was carpal tunnel. Lower legs and feet occasionally. I get these waves of tingling and numbness that radiate down my neck, into my shoulders, and down my arms at times. Now I've noticed that my left arm and leg get fatigued very quickly and I get very clumsy when I get fatigued. I'm a geologist and do a lot of field work - I've noticed that when I get tired, I trip and fall quite a bit. I've had an MRI and CT that confirmed OPLL from C3 to C6/C7. I now have constant pain in my neck, shoulders, and upper arms - feels like someone has been hitting me with a club. My NS says he probably will not do surgery until I have trouble walking. I'm into this for a month now and it sucks big time. I'm glad to find at least a small group of people that can commiserate and let me know what i in store for me.

RockDoc

Post Edited (RockDoc) : 8/29/2009 8:45:23 PM (GMT-6)


Big George
Regular Member


Date Joined Mar 2009
Total Posts : 41
   Posted 8/31/2009 9:34 AM (GMT -7)   
Hi RockDoc,
Welcome to our growing little group. Your symptoms are very familiar to me. I started with intermittent weakness in my legs, and went as long as I could before having surgery, as I was afraid of losing my job. Along with the other symptoms, I had dizziness and fell a few times, before I consented to having surgery. It was rough, but it was the best thing for me.I found sleeping in a recliner to be very helpful. I was able to go back to work for almost 2 years before I needed more surgery to decompress more area in my C-spine. Everyone is different. I hope you are able to find relief from your pain and numbness. Has your NS given you any medication to help? I will keep you, and the others in our elite little group, in my prayers. I was first diagnosed with cord compression in 2002, but not with OPLL until a year later. Just remember to be careful- when your cord is compressed, you are in danger of a spinal cord trauma if you fall from a distance or are involved in an auto collision. Be well, and be careful.

Big George

NanMac
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 8/31/2009 3:53 PM (GMT -7)   
Hey I am still lurking now and then. I have poor internet service. RockDoc, Your symptoms are very similar to mine. I recently have been DX. with another condition, DISH by my Rheumy. She had xrays of my whole spine and consulted with a bone radiologist. She has stated that the tx. is antiflam's, PT, Muscle relaxers. I currently am taking pain meds to allow me to sleep. My PCP prescribes them not the Rheumy. I am going to acupuncture, seemed to help some at first but my body has gotten used to it. I am also trying a gluten free diet and body detox program. I have been doing this for only a week so far so I haven't seen any improvement. The liquid supplement has some unpleasant side effects but I am trying to push through it. At this point I am willing to try anything. I am just coming back to work from having 2.5 month summer break. Hopefully I can keep this up. Have you read the closed forum on this site about OPLL? We had several people posting awhile back.

George, I guess I join the DISH group also. Does Dish affect any of your other joints? Thanks for posting the research. I hope they figure out someway rid us of this condition. I wish I could find a better expert to consult with. It is a journey. Hope you are feeling well. I am going camping this weekend. Can't wait to relax in the great outdoors!
Nancy

Big George
Regular Member


Date Joined Mar 2009
Total Posts : 41
   Posted 9/2/2009 5:42 PM (GMT -7)   
Hey Nancy,
DISH affects most of my other joints. I have arthritis and spurring in most of my joints, and aching in the ones I use most often- hands, elbows,hips, knees,ankles, and feet. I went to a rheumatologist before I was diagnosed with OPLL, and he put me on the cardiac vegetable soup diet. I stopped eating bread, potatoes,and felt great for a while. I was hungry, and felt like I was missing something. You can only do this type of diet for a short while, before you starve your body of good protein. I think the key is a balanced diet with good carbohydrates(high in fiber),good lean protein, and a small amount of good fat(vegetable or olive oil). I just wish I could get some exercise- I'm looking into a recumbent stationary bike,which would be less stress on my back and joints. Have fun on your camping trip- we had a blast in July when we camped at Taylorsville Lake, Ky. and went on the Bourbon Trail. I paid for that during the following week. There is nothing like the smell of a campfire, and enjoying the great outdoors. Be well.

Big George

RockDoc
New Member


Date Joined Aug 2009
Total Posts : 2
   Posted 9/7/2009 11:49 AM (GMT -7)   
Hi Big George et al.....

Sorry I did not reply sooner - I've been out of town. I've got my first EMG test in about two weeks and then we decide what to do. My finger tips are slightly numb almost all the time now but some of the waves of tinging in my neck, back, and shoulders have subsided somewhat. I'm sure my doc and I will talk about more meds during the consult after the EMG. MY wife is also convinced that the OPLL and my now-year-old diagnosis of diabetes are related. Doc does not think so but there does seems to be a correlation in some of the literature we've read.

I'll post back after I get my EMG results and we know a bit more.

RockDoc

Big George
Regular Member


Date Joined Mar 2009
Total Posts : 41
   Posted 9/11/2009 11:25 AM (GMT -7)   
Hi RockDoc,
I just had an EMG last Thurs. I was a little apprehensive beforehand, but it was a piece of cake. I go back to my PMR doc next Thur. for results and results from blood work. I was diagnosed with diabetes about 3 years ago, was probably diabetic before that, but borderline. I was diet controlled until August, when I was prescribed Metformin. This has lowered my fasting glucose from 130's to about 115. Before the Metformin, my fasting glucose was all over the place. I hope my PMR doc can prescribe something to help with the arthritic aches and stiffness. I have lost some ability to stand or walk for a length of time, but I manage to get around. I am happy to be walking,and consider myself very fortunate. Your numbness subsiding is a blessing. I think I was about to go crazy with the numbness, and after a while you become accustomed to it. I was on Neurontin, initially, and it helped, but was so expensive. Now the numbness is in my finger tips and toes, and is worse the longer I am up. I hope you find some relief.

Big George

NanMac
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 9/11/2009 3:25 PM (GMT -7)   
Update on diet and going back to work. The actual diet is going pretty well. I am still in the initial phase so it is really restrictive. I can only eat fish, chicken, rice, nuts, fruits & vegtables & Olive oil. luckily I have a friend who is Gluten free to give me ideas and recipes. I can slowly add foods in about a week. I have lost a few pounds which is good! Drinking the detox product is not going very well. It seems to make me have charlie horses in my thighs and abdomen. I also will have clammy sweats. I have only been able to tolerate 1/2 a scoop 2x/day. I am suppose to be up to 2 scoops2x/day. I always have had a sensitive system to drugs, maybe vitamins and herbs too?

I have been working for 6 days now. The last two I woke up with stiff feet and left ankle. It really hurts to walk but it is part of my job. I took some tylenol but it isn't really helping. I also can not take ibprophen because it make me swell, BP increase and bothers my stomach. My PCP wants me to take pain meds 24/7 but I won't because I won't drive medicated. Driving is part of my job. I seemed to be less inflammed during my break from work over the summer. I have great difficulty pacing myself when I am at work. I don't know how long I can go on with this? I guess until I can't. Has anyone applied for disability with this condition? Will losing weight stop the progression of DISH? I now it will decrease the pressure on all my weight bearing joints. Keep posting, we can all learn from each other.
TGIF
Nancy

Big George
Regular Member


Date Joined Mar 2009
Total Posts : 41
   Posted 9/14/2009 10:42 AM (GMT -7)   
Hi Nancy,
I have been on disability since I qualified in August of 2008. It's about 1/2 of what I made when I was working, but we make ends meet. My wife works, and carries me on her medical plan. I qualified for SSDI without having to appeal a denial. To quote a friend who is a disability attorney "you're a slam dunk with your condition and surgical history." If you'd like, I can give you the pointers he gave me to expedite the SSDI process-just e-mail me. As for your detox product, it sounds like your charlie horses are coming from an electrolyte imbalance- probably low on potassium. Please be careful, an electrolyte imbalance could lead to cardiac arrhythmia and other serious problems. Remember, lifestyle changes in diet, work. Diets to lose weight quickly, usually fail, when people go back to eating regular food. I doubt the weight loss will affect the DISH, but your joints will have less stress on them with a lower body mass, and you will be able to move with more comfort. After my surgery and post op infection in 2007, I lost about 40 lbs. My diabetes was in remission, and I was able to get around better, but I went back to bad habits, and not being able to exercise, I gained most of my weight back. I have been following a modified low carb diet, as part of a diabetic lifestyle, and have managed to lose a few lbs. If I could tolerate exercise, I could probably lose more weight.
All my best to you,

Big George

fourangels
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/16/2009 2:52 PM (GMT -7)   
Hello,
 
I too live in Oregon Nancy................
Just got word Nov 3rd on the OPLL.  C4,5,6.  CT and MRI agree on 36% stenosis, but I do not know what that means yet.  Lots of stuff to educate myself with.
 
Hope to learn more from all of you.

NanMac
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 11/23/2009 1:29 PM (GMT -7)   
Haven't had much activity on this subject for awhile. I still lurk here once in a while. I am trying not to focus on my condition as I don't have many answers. I have an appt. with my Rheumy in December and I am going to try to get her to refer me to a Neurosurgeon at the OHSU medical school (She's located there). I have been to 2 Neurosurgeons and one Neurologist in the last 3 years and most seem to have limited info for me. I am hoping a large teaching hospital will help. I am continuing to decline with increased pain and numbness. Now both hands go numb. My feet also have been going numb. I have had an increase in all my DISH/ Arthritis symptoms. I am having great difficulty being comfortable enough to sleep. Even though I take pain meds and a muscle relaxer. Please keep me/us posted about how things go for you. Have a happy Turkey Day! I am going camping!
Nancy

fourangels
New Member


Date Joined Nov 2009
Total Posts : 2
   Posted 11/23/2009 4:16 PM (GMT -7)   
AAHHH, sleep, that evasive thing we all strive to get!  I too do not sleep much or well.  If my feet get more numb I think I will walk like I have club feet!  The arms and hands are easier to deal with for me.
 
Let us know how your next appt goes, atleast you have one.  They diagnosed me and I have not heard from them since.  It was kinda like, ok your screwed, we will look again next year, BYE.
 
Hope all gets better for all of you!

Big George
Regular Member


Date Joined Mar 2009
Total Posts : 41
   Posted 12/3/2009 12:14 PM (GMT -7)   
Hey Nancy and other OPLL patients,
Rockdoc started a group on google groups for OPLL people. Join us for more discussions.
All my best to you,
Big George

Scintilla
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 7/17/2010 10:38 AM (GMT -7)   
Anybody home here? This is most of a year later. Rockdoc didn't pan out.

beaverfanosu
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/7/2012 8:00 AM (GMT -7)   
hey all with opll lets start another thread of info/support for those with the disease and family.  really really this disease is so rare i fell it would be good for all of us.   please opll members respond.

redviola
New Member


Date Joined Jul 2009
Total Posts : 2
   Posted 8/20/2013 5:31 AM (GMT -7)   
Hello OPLL members,
 
In July of 2009, I posted on Healing Well about my OPLL surgery. I had the surgery on July 22nd, 2009.  I was in surgery for 9 hours.  The doctors found additional issues when in there.  I was in ICU for I think 4 days then to the surgical floor for 5 days.  I felt pretty good after a few months but never got over the tingling and numbness in my hands and toes especially.  But, it wasn't as bad as before surgery.  Here we are again, four years later and I am going back into surgery early September.  It appears that the plate has some issues, ( it covered C3 to C7) around the C4 & C5 area and something is going on around C7.  My symptoms this time are pretty much the same as before: electrical shocks, tingling, numbness, confused some, not able to hold things for long and off balance.  The tingling and numbness has gone from my fingers up to my wrists on both sides. I have 2 toes on each foot that feel numb.  I just found out that OPLL can progress even after surgery.  I guess I didn't research enough, because I thought all would be well after surgery.  The frightening part is how many times is this going to happen.  I knew something was wrong initially because the front of my neck felt strange inside.  I felt like I had a sore throat all the time too, as well as trouble speaking at times and now I also have constant coughing, which I have no idea why that would happen.  I did read that another OPLL person had constant coughing recently. 
Just wanted to update anyone going through the same thing.  I hope you all are well.
 
Karen
 

beaverfanosu
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/20/2013 8:34 AM (GMT -7)   
Karen,
 
My husband is too having issues.  He had surgery in 11-2010 for a laminectomy c-2 to the t-3.  last ct scan shows opll has grown and surgery is recommended.  they want to go in anterior and shave the ossification so that is floating put in a cage in the front, replace some of the hardware in the fusion area in the back, remove keliods that are quite large on his scar.  This again is in hopes of slowing down the compression caused from the ossification.  I just read your forum to my husband he too has all of the same symptoms, it is the 2 little toes on each foot, spasms have increased on arms legs now stomach area, coughs because he feels he can't get enough air, not only is right leg dragging but now his left has started.   He also has extreme sun air sensitive skin and feels like bugs are crawling under skin area as well as burning.   Pain has increased quite a lot too.   good luck on surgery please keep me posted and what procedure are they doing this time? 
 
Diane
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