OPLL - Part II

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Ides
Forum Moderator


Date Joined Nov 2003
Total Posts : 7077
   Posted 12/28/2009 9:16 PM (GMT -7)   
I was contacted by someone that has OPLL. She was looking for this thread:
The first part of the thread was locked because it got too long. Please feel free to continue your discussion about OPLL here.
Ides


Moderator Crohn's Disease  & Osteoarthritis Forums
CD, Ankylosing Spondylitis, lupus, small fiber peripheral neuropathy, avascular necrosis, peripheral artery disease, degenerative disc disease, asthma, severe allergy and a host of other medical problems.
 


Scintilla
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 6/24/2010 3:19 PM (GMT -7)   
I will repost what I posted at another weird site for OPLL


Hello, I am a new member. I read all the posts in a previous locked thread on OPLL. The moderator explained it was too long at 3 1/2 pages. That is funny, because threads on more common ailments run into the hundreds of pages.

We OPLL folks don't have a home. A precious friend of mine died of ALS, another rare disease. In comparison, OPLL discussion have to piggy back on general medical forums like this, while ALS clubs and forums stand alone.

Numbhands, DO NOT tarry. Your, "Noticeable gate," will just get worse, like For-Ever-Healthy described. I second this opinion.

My problem started as a weak right foot. There was some numbing of the outer digits of my hands. The foot weakness increased, and my right leg began collapsing, creating spectacular falls.

I live in Northern California. We are fully covered by Kaiser Permanente. Exhibiting a classic, "Drop Foot," My doctor thought diabetes.

Kaiser will get you into specialists quickly. We are spoiled. A Podiatrist confirmed diabetes. I was put on a strict diet, and took Metaformin. The leg worsened, and other symptoms, like incontinence arose . My sugars, though not normal, were reading in low pre diabetes over a half half year treatment. Because of this, I was sent to a neurologist.

The neurologist tested the electric pulses in my legs, arms, and chest. There were spurious shocks in all places. Another neurologist tested for blocks and found one at my right knee. My skin on my leg was crawling with fasciculations. Their tentative prognosis was for ALS, "Lou Gehrig's Disease." This is a death sentence pure and simple. There inclination at this point was to wait and see for three months.

My symptoms had turned from bad to dangerous. Fasciculations attacked everywhere. My left lung was filling with mucous. I had to go through an exhaling routine to pump it out. My right leg problems had progressed far beyond foot drop. My heart was racing at 120 to 140. I was dropping things, and still falling at a moment's notice, even just standing. My brain was interpreting the imbalance in my back spine as doing the letter C. I was stiffly swinging my right leg around.

I suffered three hospitalizations, two with pneumonia, and one with systemic infection.

I got another appointment with a neurologist during the three month wait and see period. He began wavering on the ALS, and sent me onto a neurosurgeon, Dr. Mermer of Kaiser.

Dr. Mermer took some strength tests, looked at my tongue, and told me calmly, "You do not have ALS." He had looked at the same MRIs the neurologist had looked at and became very suspicious of the strong cervical spine narrowing. He called for a contrasting MRI, a CAT scan, and neck twisting ex-rays.

On the next visit he showed on my MRI, a protuberance pushing into the spine. There was very little fluid passage, none when the spine was stressed. That is when he said, in a matter of fact tone, you have Ossification of Posterior Longitudinal Ligament (OPLL) through most of my neck.

I am Caucasian, with an eighth Native American. Funny how the Japanese population don't post on these OPLL forums. They are the ones who suffer the most.

Dr. Mermer operated May 18. He did the works from the front on C3 to C7. A titanium cage was screwed in. I had absolutely no qualms going in. There is just a 6 centimeter incision scar.

Now, some 6 weeks later, my right knee can bend easily. I can straighten out my right leg with effort. The right foot, comatose before, can just slightly twist right, with the toes elevating a centimeter. I can lift my knee up weakly.

I am in Kaiser therapy now. I have to wake up a few muscles in my thigh, and my ankle. Funny, right after the operation, I could look at my knee, and will it to work, and it did. After all, the brain has lost contact through the constriction of the spine, and relearning simple tasks will be painful, and long. I am happy with the progress so far, though so small. The surgeon says I am ahead of schedule. Numbness of the thighs and hands are intermittent. My heart is calm, and the left lung is mostly mucous free.

At least I am alive. That was iffy in the months before.

beaverfanosu
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/6/2010 8:22 AM (GMT -7)   
my husband has opll 47 yrs asian. dig 10/09 has not been treated since we were self employed with individual ins. use it loose it does apply when self insured. he now is employed with a co. and his syptoms have gotten worse. now not just right hand and arm, but right leg is giving out and he drags his foot. spasm have started in back area and left arm. spasm usually let us know that area will soon be very cold and limit use. we need to find a doc ASAP and we really need to know if he has surgery will he beable to continue working? we are looking for a DR in Northern CA

wearyRAsufferer
Veteran Member


Date Joined Mar 2010
Total Posts : 2329
   Posted 8/6/2010 10:28 AM (GMT -7)   
Forgive my ignorance- this is a complication from RA? Where does it originate in your body?

Scintilla
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 8/8/2010 9:21 PM (GMT -7)   
I am concerned about your case. This is a good case for changing our health system. Kaiser is a non-profit health network. It works very well. We all get whatever we need, regardless of cost. That has saved us hundreds of thousands of dollars, money we never had. Just think if Kaiser could draw it's funds all over the nation. Their costs would go way down, and the public would always feel safe insurance-wise. Gee- that is single payer.

mama6
Regular Member


Date Joined Jul 2010
Total Posts : 416
   Posted 8/9/2010 4:53 PM (GMT -7)   
I am glad that you had a positive experience with Kaiser permanente. I lived in California for most of my life, up until 8 years ago. Suffered a severe infection after the birth of my first son, where they left part of the placentia in me. While having a c-section, I told them that the epi they gave me had not worked. I could not move my legs but could feel every slice of the knife. They told me I was young,ignorant, and scared..then they proceeded. I went into shock from the pain and they had to resuccetate me. I spent the next 8 days in the hospital trying to recover.Those were just the less extreme of what me and my family went through. I know the post wasn't about the hospital itself but I couldn't help but chime in my own experience. turn
I am happy that your surgery went well and that you are on your road to recovery. Take care and have a pain free week. Heather
Big Hugs, Mama6

DX. with Fibromyalgia, Narcolepsy, Poss. RA or Psoratic Arthritis, Herniated disc 3x in last 7 months
Meds: Nuvigl, Cymbalta, Tramadol

Mother to 5 wonderfull kids. Oldest is 18 and just left the nest for animation school. Youngest just started 2nd grade. So I am crazy, and feeling my age plus some.

Scintilla
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 8/12/2010 10:13 PM (GMT -7)   
Hey Mama,

Today I could walk with my drop foot right leg heal to toe with brace for the first time in half a year. I am quite sure I will be able to do that with out the brace eventually. Well I just took a Flexiril and I will be passed out in ten... So goodnight. Nice to hear from you.

beaverfanosu
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/20/2010 3:22 PM (GMT -7)   
Hi i am the wife of beaverfanosu and socaloceanlover. we live in CA and really feel alone with this disease. most of the family (my husbands) do not understand and keep saying don't drink coffee and go have accupuncture. he is asian came to usa/oregon when very little. the disease is really going pretty fast now. i have to help button his dress shirts and tie his shoes. He wears a glove on right hand as much as he can to keep it warm. a arm sleeve helps and a runners knee brace. he is starting to drag right foot when walking. the surgery is scary from our online research. but we do have apt with sf doc that is suppose to be knowledgeable on opll end of month. my husband ias 47 dig. 10/09. we have been in total denial, but that is not the case now. would love to hear from anyone with opll. how can we slow it down, what do you do to help reduce tingle, spasms, cold, jerking, ect....

Scintilla
New Member


Date Joined Jun 2010
Total Posts : 6
   Posted 8/21/2010 7:03 PM (GMT -7)   
Hi again,

The disease can kill. As you know, I had an operation now three months ago. I live in Sacramento. The surgeon that successfully operated on me was Dr. Mermer through Kaiser here.

Like your husband, my right leg became quite useless. My right foot became blue and cold, same with both knees. I had fasciculations pretty much everywhere. I found walking brought the blood back into the foot and knees. Also, lying down did the same. It is important to exercise that what is cold.

After the operation, the blue coldness is gone. This is important. Cold is death. My right foot is on a slow road to perhaps full function. Then again, perhaps too many nerves died for that to happen. My knee and hip have been badly damaged by the leg's wild antics.

One thing is for sure, the operation has stopped my body's downhill slide. Have your husband get the operation. Elect to have the anterior incision. He will recover a lot quicker. I have no neck pain at all.

beaverfanosu
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 8/29/2010 3:33 PM (GMT -7)   
scintilla,

i really appreciate your info. we took our dog for a walk and my husband stop to p/u garbage and fell down and it was not easy to get back up.
we have been hiking and running together for 20 some years. now i feel like he is very old and fragile on our walks and it takes 1 hr to go just 3 miles. what a change. plus i have to hold his arm to help him walk. we went to our sons first hs football game and he had tough time walking up on the bleachers. he is seeing someone in the bay area end of month. i hope our future looks good. We just did not expect this at all.
i read your 8/21/10 post to my husband and he says yes cold is death. and i don't want to be without him.

NanMac
Regular Member


Date Joined Mar 2007
Total Posts : 71
   Posted 8/30/2010 5:59 PM (GMT -7)   
I was part of the previous thread about OPLL. For a while we had a group on Google but that faded away. I continue to have problems related to my OPLL, Congenital fusion, stenosis, DDD, and OA in other joints. I have seen a OS at OHSU and he thinks I should wait longer before considering surgery. The surgery will be quite extensive and will probably NOT make my pain any better. Surgery would require back anterior and posterior incisions and alot of hardware. I am currently in process of trialing a SCS to help me deal with the pain. I have tried many meds, PT many times, accupuncture, injections, nerve abalation trial...........My journey continues.
Nancy

wedding queen
New Member


Date Joined Sep 2010
Total Posts : 1
   Posted 9/9/2010 7:28 PM (GMT -7)   
My fiance was just diagnosed. I;m wondering if there is anything to be done as a preventative measure. Is exercising, particular foods or perhaps not doing certain things help? I'm trying to gather some hopeful information for him - some way of staving this thing off. Right now he has little pain and numbness.

beaverfanosu
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 9/11/2010 7:43 AM (GMT -7)   

beaverfanosu
Regular Member


Date Joined Aug 2010
Total Posts : 21
   Posted 9/12/2010 8:34 AM (GMT -7)   
blush  i
 
did post yesterday but looks like it did not post.  how old is your fiance and what race?  has he had neck back problems for awhile?  also i ould love to hear from big george to see how he is doing.  4angles how are you?  and anyone with opll.  2 more weeks and we see a doctor and hope to get some answeres.  thank you to those that have responded it does help to communicate with others that have this disease.

BobRamsey
New Member


Date Joined Mar 2015
Total Posts : 1
   Posted 3/19/2015 6:14 PM (GMT -7)   
Just found this site I am recently diagnosed with OPLL started a facebook group so that people suffering from this disease can share experiences.
/www.facebook.com/groups/OPLLinfo/
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