Recently Diagnosed with OPLL - 12/26/2012

[F8th31]

Hello Everyone!

I'm grateful to have found this group, but sad for the circumstance that brings us all together.

About me…I am a 40 year old Pacific Islander female living in Northern California, and was recently diagnosed with OPLL last month.  

How I was diagnosed…I have been having chest soreness since July 2012 and asked my doctor to take an X-ray in October 2012 to confirm that I had not broken/torn anything in my chest area.  The radiologist found a bone spur/exophytic osteochondroma around T8 which they said "there is partial fusion of this presumed osteochondroma with the 8th rib neck anteriorly."  My doctor ordered an MRI followed by a CT scan.  Both scans confirmed the OPLL; an excerpt from my CT scan report is as follows: "There is ossification of the posterior longitudinal ligament from the inferior endplate of C6 to the superior endplate T8.  Additionally, at the level of the T6-7 disc space extending to the mid T7 vertebral body there is an additional linear and vertical thin calcification which is difficult to precisely localize with respect to the thecal sac but is likely extra-axial.  In aggregate these calcifications result in central canal narrowing up to 50-60% canal narrowing at T6-7 level which is disproportionately severe on the right.  There is no significant osseous neural foraminal narrowing."  I was officially diagnosed with OPLL on 12/26/12 despite being asymptomatic and am terrified of this disease based on the what I've been reading on-line.  

I have requested a second opinion from a neurosurgeon as my diagnosis was given to me my a physiatrist (my primary care doctor said the physiatrist consulted with a spine surgeon, but I prefer to speak with the surgeon myself as I have a lot of questions).  The physiatrist just advised me to "avoid car accidents and falling" which makes me worry even more. He also recommended I NOT have surgery as he thinks it is quite invasive/dangerous as it involves the spine.  I've read that surgery is inevitable, and the only way to avoid (possible) paralysis.  I have an appointment with a neurosurgeon next Thursday, February 7th, and am wondering if any of you have any tips/questions I should consider during my appointment.  

Thank you all for sharing your stories and any information you have regarding OPLL.  I wish us all success in dealing with/overcoming this disease!

Best,

Char

[JAN MCKIM]

Welcome to our OPLL chat group, Char.  Where in No. Cal. do you live?  I live in the S.F. Bay Area in San Carlos. 

My OPLL history began with my diagnosis in 2001 thanks to an MRI that showed severe stenosis due to OPLL from C2 to C7.  I had been experiencing tingling in my forearms and hands and saw a neurologist who referred me to another neurologist, Dr. Philip Weinstein, at UCSF.  Like you, I was feeling overwhelmed by my diagnosis, and I postponed surgery thinking I would be OK as long as the symptoms didn't get worse.  Unfortunately, the symptoms did get worse, so I finally decided to follow Dr. Weinstein's advice and had a laminectomy and fusion of my cervical spine from C2 to T1 in 2004.  My recovery took several months, and I had physical therapy for about 6 months.  I continue to do stretching exercises regularly, and I have found this helps.  My husband also massages my back and shoulders about twice a week, and this really helps the circulation. 

Dr. Weinstein had published a paper on OPLL, and he was the most knowledgeable and kind surgeon I had encountered, so I was very fortunate to have found him.  He also is known internationally for his surgical techniques, and patients from around the world have flown here just so he could perform their surgeries.  He is now partially retired but still works at the Spine Center part-time.  If you decide to make an appointment, you'll need to contact the New Patient Coordinator at the Spine Center at 415-353-2739. 

As you research OPLL, I hope that you will get at least two opinions from neurological spine surgeons so that you can make an informed decision about how to approach your particular condition.  From your description, you are fortunate that you are asymptomatic from the presence of OPLL in your spine.  I have read that many people with OPLL in their spines can be asymptomatic.  If I were you, I would want to find out what is causing the chest pain/soreness, and what should be done for that.  That may be separate from the OPLL. 

Best Wishes,
Jan

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From: F8th31 <cabu...@gmail.com>
To: opll_di...@googlegroups.com
Sent: Wed, January 30, 2013 10:04:16 PM
Subject: Recently Diagnosed with OPLL - 12/26/2012

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[Alvin Providence]

Hi Char,

Thank you for sharing your experience with us.

I would definitely recommend multiple opinions. I actually got six different opinions. That may be overkill, but I wanted to be absolutely sure before doing any type of surgery.

During your appointment, you might want to ask if there are many known cases where having a car accident or falling has caused paralysis due to the existence of OPLL. The reason I'm saying this is because 5 of the 6 specialists I saw told me the same thing. One Neurosurgeon actually told me I was a "walking time bomb". He said one of his patients opted to not do surgery, then got into a car accident and became paralyzed. However, the 6th specialist (Neurosurgeon) told me there was not enough data/evidence to support that claim. It gets really confusing, and sometimes frustrating, when you hear different things from different specialists.

That's why I was thankful I found this group, so I can talk to other people who are going through similar experiences.

If surgery is recommended for you, I suggest asking the probability of the surgery being successful and also the probability of more surgeries being needed in the future. In my case, my first surgery (which I assumed was going to be my only surgery) was not successful so now I have to do anther surgery. 6 months ago I did not even consider the possibility of this scenario occurring.

I wish you the best with your upcoming appointment, and keep us updated.

Thanks,

Alvin

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[F8th31]

[F8th31]

Hi Jan,

Thank you for the warm welcome :-) I live in Brentwood (in the East Bay, northeast of Walnut Creek).  I used to work in Redwood Shores and some of my former colleagues live in San Carlos, so I am familiar with San Carlos (I love the small town feel and restaurants). 

Sounds like you found a gem of a neurologist in Dr. Weinstein -- that's awesome! I have insurance with Kaiser Permanente, so I'm thinking that I'll have to pay out of pocket for outside referrals, which in my opinion, would be totally worth it. I've never had an operation or surgical procedure of any kind, and if I must have one, then I will be sure to do a lot of research and seek different opinions before going through with it (IF I decide to do it, or if symptoms force me to get it done).  The neurosurgeon I will be seeing next week completed her internship, residency, and fellowship at UCSF and was part of the Neurosurgery faculty at UCSF as a Clinical Instructor.  I'm hoping at some point that she worked with Dr. Weinstein and that her experience (with Dr. Weinstein) will bode well for me :-)

Questions for you...

1) Were you experiencing OPLL symptoms before your diagnosis in 2001? If so, what were they?

2) Being that you had your surgery in 2004, how quickly did your symptoms worsen in the years leading up to your surgery ? 

3) Did you develop new OPLL symptoms after being diagnosed in 2001, or did your symptoms stay the same but increase in severity?

I will definitely follow-up regarding my chest pain/soreness as the physiatrist that diagnosed me stated that the location of the soreness is not related to my OPLL.  I don't notice the soreness as much as I did before. I'm beginning to wonder if the soreness is less noticeable because I've become used to it/tolerant, if it is in fact healing, or if my mind is more focused on the OPLL to worry about the chest soreness (could be a combination of all the above).

Again, thank you for reaching out and for your support going forward! I can't begin to tell you how much it means to me :-)

Best regards,

Char

[F8th31]

Hi Alvin!

Thank you for your reply and helpful pointers! Wow, six different opinions?  That's great!  I will be seeking multiple opinions as well.  Curious, were the opinions from the same medical institution that you have medical coverage with, or did you get opinions outside of your coverage?  If they were outside your network, did you need a referral from someone inside your network prior to being seen?  Also, what type of educational backgrounds did the neurosurgeons have? I'm wondering if the sole neurosurgeon who stated "there was not enough data/evidence to support that (paralysis in the event of a car accident) claim" has a slightly different background than those who seemed to support it?

Wow, I can't believe one of your neurosurgeons said you were a "walking time bomb." I find it interesting that my physiatrist did not say those words to me exactly, but his choice in words eluded to the same thing. The difference is that he seemed strongly against surgery, which left me thinking the worst scenarios.

Sorry to hear that your first surgery was not successful. How long ago was that surgery?  I hope your upcoming surgery is a huge success!

Thanks, again, for your time and support!

Char