Re: Diane and Ajay's posts

[JAN MCKIM]

Hello Diane,

I know that there is another member of this group who had recent surgery on his thoracic spine to correct the OPLL there.  It is unusual to find OPLL in the thoracic area but I believe that it can occur.  As a recommendation, it's always a good idea to get a 2nd opinion from another dr. because OPLL is a rare condition, and most docs don't recognize it.  Be sure to get copies of your medical records, including the MRI, and bring these with you to the 2nd dr. 

Regarding Ajay's comments about chiropractors, I must say you're taking a BIG risk in letting any chiropractor manipulate your spine if you have OPLL.  I've been to chiropractors before I was diagnosed with OPLL in the cervical spine, and I was lucky that she didn't break my neck because I had a severe case of OPLL (C2-C7).  You mentioned that you have all the classic symptoms of OPLL ("Symptoms include numbness of the arms, spastic weakness, clumsiness in walking or running, difficulty in balance, and disorders in bowel or bladder control").  Although you may be feeling a little better after seeing your chiropractor, the OPLL compression of your cervical spine is still present, and it will get progressively worse because OPLL occurs due to the body's inability to metabolize calcium properly.  For some reason, the calcium is deposited on soft tissue and bone which is why some of us have bone spurs, and also hardening of the ligament along our spinal cord. 

I am not a doctor but I have read many published articles about OPLL, and my surgeon at UCSF (hospital in San Francisco) wrote an article about OPLL.  I had a posterior laminectomy and fusion, and I don't have anymore tingling in my extremities.  I also have the published book, "OPLL", by Dr. Yonenobu, who is probably the best known dr. for his research on OPLL.  I hope that everyone takes precautions when consulting any dr.  I would suggest that we only seek out drs. who are experienced with OPLL. 

I'm thinking about everyone in our little OPLL group, and I hope that you find relief from your symptoms.

Hugs,
Jan
San Carlos, CA

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From: Ajay Reddy <ajaya...@gmail.com>
To: opll_di...@googlegroups.com
Sent: Wed, April 24, 2013 12:19:50 PM
Subject: Re: Possible OPLL?

Hi Diane,

I am not a doctor but i was told that OPLL occurs mostly in Cervical (C2-C7) or Lumbar(L1-L5) areas. If you see the spine compressed in the T7-T10 area, most likely you have herniated disks in this area. The T7 vertebra is one of the 12 thoracic vertebrae found in the middle region of the back. I don't believe it has any thing to do with OPLL. 

If you have pain around the T7-T10 vertebra or anywhere along the spine, you should consider beginning a regimen of non-invasive, conservative treatment, like mild exercise, pain medication, or steroid injections.It is very server situation, then only opt for the surgery.

Again, I am not a doctor but based on my research in the past 3 months, I am offering on what I know. 

Good thing you have to do is, know what you have with the doctor. Then you can think of alternatives to fix the problems.

Hope this helps.

On Wed, Apr 24, 2013 at 4:34 AM, <dianes...@hotmail.com> wrote:

Hi, this is my second attempt at posting, im not too sure if im in the right place so here goes, hopefully someone will see this, i will be brief and just ask if anyone knows if an mri which says possible OPLL in T7-10, ct scan recommended, can be wrong as i am pretty worried about this, many thanks, Diane.

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Ajay A. Reddy
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[dianes...@hotmail.com]

thanks so much for your reply, this is what my report says, T5-6 large disc protrusion slightly to the left of midline. This indents the ventral aspect of the thecal sac but does not cause significant spinal stenosis.
T6-7 small disc protrusion right paracentral location, no neural compromise.T7-8 disc bulge, no neural compromise, low signal intensity material extending inferiorly from the disc on the midline associated wtih the dura.? extruded disc material or PLL ossiication. T*-9 moderate disc protrusion on the right with indentation of the spinal cord. No significantspinal stenosis.Broad based disc bulge extending to left. Once again there is low signal intensity material extending inferiorly in the midline. T9-10 moderate midline disc protrusion with indentation of the ventral aspect of the spinal cord. No stenosis. T10-11 mild disc bulge, no compromise. conclusion: multiple disc protrusions in the thoracic spine as described above. The largest is at T5-6 with indentation of the spinal cord, but there is still csf around the cord. From T7-T10 appearances suggest there may be ossification of the posterior longitudinal ligament.A CT scan through this segment is recommended to further characterise this abnormality. I have just found out today that my new neuro has only done a cervical mri and do not meet with him until july so am at a loss as what to do next, this mri was taken nearly 3 years ago and my symptoms are a lot worse now, your advice is greatly appreciated, thanks again, Diane.

[rockdoc]

Hi Everyone - 

Sorry I've been such a slacker and not responding to the new posts - three very active email accounts keep me busy. I've been lurking in the background and saw the new posts when they came in but was out of town all of the past two weeks. I try to keep up with new posts and members and get those set up to post directly to the group rather than have me manage every single post. And, I'm still banning anything that resembles spam so we don't get bombarded with junk emails.

I just wanted to chime in about seeing a chiro - I agree with Jan...that sounds very risky to me. My neck hurts so bad now that I really do think I would pass out if someone tried to adjust it. Plus I can only imagine the potential damage they could do. I'd be surprised a chiro would take on a patient with OPLL given the huge amount of liability treating that patient would carry.

I've been blithely ignoring my OPLL for about 2 years now and it is catching up with me. Tingling and numbness are returning to my lower extremities and I have lost a considerable amount of strength in my left arm. I see my GP in about a month and she and I will talk about a pathway for me to take. My old neurosurgeon left his practice here in Seattle so I will be seeing a new one once I get referred. I'll keep the group posted. I really want to to avoid surgery for as long as I can but I have a feeling I'll be back under the knife sooner rather than later.

So, hello to our new friends. I'll keep everyone in my thoughts.

Brian

[Ajay Reddy]

[Ajay Reddy]

Hi,

I respect the feelings of every one on the chiropractors, but I like to share why I did it.

Contrary to every one's belief NUCCA certified Chiropractor does not crack any thing in the neck. There are some of them who do but they are not certified to Chiros to do any thing with cervical stuff.

Most of the OPLL issues start from C2 all the way to C7. This area is not touched by the NUCCA Chiro so nothing to worry about it. Chiro adjusts the misalignment of the C1(Atlas) bone which should be horizontal (180 degrees) to the vertical plane covering the head. According to Dr. Yardley, this C1 bone is inclined 6.5 degrees on to the right side. Obviously, this squeezes the spine near the mind / body connection and may affect the body's behavior like numbness or tingling etc.

Certainly my improved symptoms are not due to the diagnosis on the OPLL but the adjustment to C1 bone relieved the pressure of the spine.  I studied the literature before I went for the adjustment. Again, this is my personal experience and may not be applicable to others.

As Jan said, the above chiro adjustment may not have fixed the OPLL but certainly believe I am on the right path to the healing.

Also like to share that, I do not want to take any chances at the same time. So,  I just visited Dr. Shaad Bidiwala (neurosurgeon) in Dallas and he told me that I should go for a Posterior  Laminectomy (C3-C7). I did not like that idea but also I know that I have no options either.

I am trying to get a sooner appointment than mid May from Dr. Jho. I certainly like to take a risk of going through the Foraminotomy surgery for OPLL. Only issue is that Dr. Jho drills minute holes close to the spine and he may touch the spine few times. Thats the scary part. But today Dr. Bidiwala also told me that during the Laminectomy, they touch the spine even though they perform the surgery posteriorly.

I will update you all if I hear any thing from Dr. Jho.

Thanks again to this group members who provided lot of their invaluable experiences that helped me understand this rare disease called OPLL.

-Ajay

[Brian Sherrod]

Hi Ajay -

Keep us posted on how your appointments go. There's been several discussions about Dr Jho so I am interested to hear how that goes - it sounds like his techniques are quite good.

Cheers....

Brian