Newly Diagnosed

[Deb]

Hello Everyone

I am a 54 year old caucasian female who lives in the Midwest. Was
diagnosed Wednesday, 5/9/12. Have spent every spare minute since
searching for reliable, updated information but have not had much
success.

Have difficulty walking and pain/numbness in arms and hands. In
October 2011, I had a corpectomy at C3 and laminectomy at C4-C7. Not
much improvement following surgery. CT scan prior to six-month follow-
up appt on 5/9. Was shocked when doctor told me about the OPLL.
Scheduled for a myelogram 5/23 with ortho follow-up 5/25. Ortho also
wants me to see a Physical Medicine/Rehabilitation specialist. Most
concerned with progression of this disease and pain management..

Hope members here are doing well and will update their status.

Deb

[rockdoc]

Hi Deb -
Just got your message this morning. Welcome to our small group. It's
been a while since we all checked in - which I hope is a sign that
everyone is doing well and off having fun.

I was diagnosed about 4 years ago and had a cervical laminoplasty from
c2 to c6. I started this discussion group shortly after I was
diagnosed because I found no one who knew anything bout what I was
going through. So here we are.

I'm doing ok - I have permanent numbness in my upper left arm and
shoulder and still have some trouble with walking (mainly coordination
issue causing some stumbling). I still get some numbness and tingling
in my arms, hands, and legs but nothing like what I had before
surgery. I still have lots of pain in my neck and shoulders but just
live with it. If it gets worse, I'll probably ask my doctor for some
help but so far so good. I had a myelogram before my surgery - lots of
fun but really not what I heard it was going to be like. It was
interesting listening to my muscles react to the needles (which I
barely felt). Plus the lady who did mine told me everything along the
way so it was an interesting procedure. I did not have physical
therapy after my surgery but I've wondered whether that would have
helped my recovery.

Hopefully the other members will check in a let us know what is going
on with them. We've all been incommunicado for a while and it will be
good to hear from everyone.

Warm regards and best wishes....stay in touch and ask many questions.
BrianS

[Deb]

Hi Brian

Thank you for the quick reply and warm welcome - it's comforting to
know others understand.

I did have PT 3x/week for 8 weeks following surgery. Mainly consisted
of balance and leg strengthening exercises. I will admit that I've
not kept up with the recommended exercises at home, partly cause I'm
lazy and partly cause it really didn't seem to do any good.

I'm curious. From the threads I've read so far (hope to get through
the rest in the next few days) it seems that most members were
diagnosed with OPLL then had surgery. My situation is the opposite.
I think it may be because I only had a cervical MRI prior to surgery.
From what I understand, the OPLL appears to be below the surgery site
which I think would be thoracic. I guess the myelogram will tell the
whole story.

I read on some site that the incidence of diabetes is high among those
diagnosed with OPLL. I'm Type 2 on Levemir and Janumet. Anyone else
diabetic?

I'd greatly appreciate any advice on what questios I should ask at my
ortho follow-up on the 25th.

Thanks again

Deb

[Big George]

Hi Deb,
It took 2 MRI's before my OPLL was diagnosed. It wasn't on my 1st,
but then when repeated a year later, and 6 months after laminectomies
at C4 and C5 for cord compression,and when numbness and weakness
returned, there it was white and thick on the MRI. Where are you
located in the midwest?- I'm 5 minutes south of Cincinnati in Northern
Kentucky. I'm holding my own, but some pain and some weakness persist.
I'm still able to drive, and walk, but I'm limited. Along with OPLL, I
have been diagnosed with ankylosing spondylitis, which means my spine
is fusing along its length. I try to keep moving and stretch to keep
some flexibility. I am diabetic as well- in good control with
Metformin. I hope all the rest of our group are doing well, and
thriving. Good luck with your followup appointment. Everyone is
different with their OPLL situation, because we are different people.
You may have an accelerated case, as I have had with 4 spinal
surgeries in 5 years time, or you could have a slower developing case
where you will not have to have more than one surgery. I wish you all
the best.

Big George

[JSerow]

Hi Deb,
I am sorry to hear about your diagnosis. I was diagnosed with OPLL
back in August of 2008, but mine is a bit more compicated than those
on this page. I have it throughout my entire spine. I understand your
pain, mine is through my entier body. I recomend that you see a pain
specialist to help you with managing your pain. I have not had any
surgeries as of yet just lots of pain meds, I am still working but
have good days and sometimes really bad days. I have not had any
surger by choice, mostly from fear, from reading what I can find and
postings about OPLL. I have recentlhy found an aritcle about how OPLL
that was written in April of 201. It is written for surgons and it is
found at http://thejns.org/doi/abs/10.3171/2011.1.FOCUS10256, but I
would recomend that you be sure that you are ready to read up on it.
It is graphic and does use a lot of medical terminology but I did
found it very interisting. It still has not convinced me to have
sergury yet, as I think that I am going to hold out for as long as I
can before I have to have it done. I wish you lots of luck and best
wishes on what ever you decide to do.
J Serow.

[Deb]

Thank you for the replies.

Big George, I'm in southeast Kansas. At my last ortho appt, dr
compared the pre-surg MRI with the six-month post op CT scan. Dr said
he could see it on the MRI - wonder why he didn't say anything about
it at the time? Oh, well. I too am able to work but my hands have
got to the point that I type with my forefingers and thumbs only. Not
a good situatuion for an admin asst who spends 90% of her time either
keyboarding or on a ten-key but I keep plugging along.

J Serow, thank you for the link to the JNS article. I'd like to track
down that issue so I could show it to dr. Will have to contact them
to see if back issues are available. The actual surgery was not bad
at all but I certainly understand your reluctance.

Stay well and happy, everyone.

On May 13, 1:48 pm, JSerow <jse...@swbell.net> wrote:
> Hi Deb,
> I am sorry to hear about your diagnosis.  I was diagnosed with OPLL
> back in August of 2008, but mine is a bit more compicated than those
> on this page. I have it throughout my entire spine.  I understand your
> pain, mine is through my entier body.  I recomend that you see a pain
> specialist to help you with managing your pain.  I have not had any
> surgeries as of yet just lots of pain meds, I am still working but
> have good days and sometimes really bad days.  I have not had any
> surger by choice, mostly from fear, from reading what I can find and
> postings about OPLL.  I have recentlhy found an aritcle about how OPLL
> that was written in April of 201. It is written for surgons and it is

> found athttp://thejns.org/doi/abs/10.3171/2011.1.FOCUS10256, but I

> would recomend that you be sure that you are ready to read up on it.
> It is graphic and does use a lot of medical terminology but I did
> found it very interisting.  It still has not convinced me to have
> sergury yet, as I think that I am going to hold out for as long as I
> can before I have to have it done.  I wish you lots of luck and best
> wishes on what ever you decide to do.
> J Serow.
>
> On May 11, 10:46 am, Deb <debdea...@gmail.com> wrote:
>
>
>
> > Hello Everyone
>
> > I am a 54 year old caucasian female who lives in the Midwest.  Was
> > diagnosed Wednesday, 5/9/12.  Have spent every spare minute since
> > searching for reliable, updated information but have not had much
> > success.
>
> > Have difficulty walking and pain/numbness in arms and hands.  In
> > October 2011, I had a corpectomy at C3 and laminectomy at C4-C7.  Not
> > much improvement following surgery.  CT scan prior to six-month follow-
> > up appt on 5/9.  Was shocked when doctor told me about the OPLL.
> > Scheduled for a myelogram 5/23 with ortho follow-up 5/25.   Ortho also
> > wants me to see a Physical Medicine/Rehabilitation specialist.   Most
> > concerned with progression of this disease and pain management..
>
> > Hope members here are doing well and will update their status.
>

> > Deb- Hide quoted text -
>
> - Show quoted text -

[JSerow]

Hi Deb,
I have done many many searches on OPLL and find pretty much the same
things. Most of the data comes from the Japanese but have found some
from San Fransico and an article from Chicago. I have even found a
book detailing OPLL for $169. Most of the info that I find is medical
based. The searches that I do on google are on "Osscification of the
Posterior Longitudinal Ligament" and it will pull up quite a bit of
information. You will find that alot of it is repeatative but evey
once in a while you will find a new article. I hope this will help you
find more info.
John Serow

[Pamela Brockus]

Hello everyone. I have been having more symptoms the last several months. I went to Mayo Clinic 3 weeks ago and saw a Spine Dr, who referred me to another Orthopedic Spine Surgeon there at Mayo in Minnesota, Dr Currier who has seen others with OPLL. He has a published paper from 2001 about a patient with opll that I found on PUB MED site. The first surgeon I saw 3 weeks ago told me I needed surgery again, but I saw Dr Currier yesterday and he does not think I need another cervical spine surgery again yet. I was diagnosed with cervical spine OPLL back in 2006. I had surgery from c2-c7, mainly laminoplasty operation from the posterior. Dr Currier, said my next surgery will be a BIG surgery, including 3 procedures, from anterior and posterior. I am glad to not be doing it right now!!!!! I started having more pain, numbness, tingling in my chest, back, and left arm in Feb. I fell backwards on the floor for no reason a few weeks ago. My pain that was worse however in my left arm, chest and back has gotten alot better all by itself luckily just in recent weeks. 
I have opll and ossification of the ligamentum flaven and facet joints throughout my thoracic spine also, but no bad enough for surgery yet. I Hope I never have to have thoracic surgery, period! The cervical was bad enough. The Spine surgeons both told me at Mayo, that I was totally fused in my  c spine, even where it shouldn't be. They kept referring to me as the 'bone grower'.  I also saw a Orthopedic Hip doctor at Mayo, because since last summer both my hips started hurting. I had mri's of my hips last fall and they found extra bone throughout my hips. The hip dr at Mayo said when my pain gets to the point that I can't stand it, I will need hip replacements in both hips. The hip dr said I will need some radiation therapy and to take indomethacin (anti inflammatory drug) after hip surgery's to try and stop the extra bone (heterotrophic ossification) from growing like crazy right after surgery. The hip surgeon said I have way to much bone in my hips to consider a more minimal arthoscopic hip surgery. 
Deb, I am a 52 year old female who lives in NORTHEAST KANSAS. You said you live in SOUTHEAST KANSAS, so you aren't probably very far from where I live. I had my surgery in 2006 in kansas city.
I went to Mayo Clinic in Minnesota because I wanted to try and find out what the underlying cause of all my "bone grower" is coming from. I have the ossified spine ligaments, ossified hips, shoulder, elbow, knee's and ankle, but the dr's don't think I have DISH or Anklosing spondylosis. No Dr has figured out an underlying disease yet.  I am seeing a Genetic Specialist in August in Kansas City to see if I have some genetic disease that is causing me to be a "bone grower".
That is what I have been up to lately.  
Pam
  

> Date: Mon, 14 May 2012 11:44:30 -0700
> Subject: Re: Newly Diagnosed
> From: debd...@gmail.com
> To: opll_di...@googlegroups.com

[Pamela Brockus]

I have a question for Big George. What if any medications are you taking for the ankylosing spondylitis? 
Pam 
 

> Date: Sun, 13 May 2012 18:01:02 -0700
> Subject: Re: Newly Diagnos
> From: emer...@fuse.net
> To: opll_di...@googlegroups.com

[JAN MCKIM]

Dear Pam, Deb, Big George, and all opll friends, I've been eager to respond to all of your compelling posts but have been dealing with other, unrelated medical issues.  Just to summarize my OPLL history, I was diagnosed with severe OPLL from C2-C7 in 2002 when I was 54.  I had been experiencing tingling in my arms, and had mild urinary incontinence that appeared several years before I was diagnosed.  I remember how surprised I was to hear that I had OPLL when a neurologist reviewed my MRI.  He told me that I would probably need several surgeries, although I am happy to say that he was wrong!  He referred me to Dr. Phillip Weinstein at UCSF (Univ. of Calif. at San Francisco) who had written an article about OPLL.  It was difficult getting an appt. with Weinstein because he is known internationally as a top surgeon but I persevered, and I finally got to meet him.  I liked him immediately due to his great "bedside manner" and his patience in explaining my complicated diagnosis.  I had read lots of articles about OPLL before my visit so I could understand the basics of this rare disease.  However, the surgery he described for me sounded absolutely terrifying.  I waited a year hoping that the symptoms wouldn't worsen but ultimately, I finally realized that I had to go ahead with the laminectomy and fusion of my cervical spine, which Dr. Weinstein performed in Feb. 2004. I spent 6 months in a restrictive neck brace, and then 6 months of P.T., which was very helpful.  I don't experience any numbness or tingling in my arms any more.  I have limited mobility of my neck, so I have to turn my entire upper body right/left when I drive.  Stretching exercises do help me loosen up, and they also help reduce the pain I have in my lowback which is caused by degenerative disks and sciatica.  I've had MRIs of my thoracic and lumbar spine but there's no evidence of OPLL, thank God! I've collected a number of published articles about OPLL and have the book, "OPLL", 2nd edition, by Yonenobu, etc.  The book is quite technical but is probably the most thorough source on OPLL.  I think it's important for each of us to try to educate ourselves about OPLL so we can discuss treatment/surgical options with our doc. I'm encouraged that our little support group is slowly growing, and I really do appreciate hearing from you.  Thanks for sharing any articles and names of drs. who have been helpful.  If anyone would like to contact me for more info. please do.  Jan San Carlos, CA 650-520-6598 --- On Tue, 5/15/12, Pamela Brockus <pbro...@hotmail.com> wrote:

[JSerow]

Hi Jan,
I read your info, as I had mentioned I was diagnosed in 2008 when I
was 43 years old. My condition is quite significant as it is
throughout my entire spine. I live in Houston Texas and have finally
reached the point in which I can no longer deal with the pain
throughout my entire body. I have started looking at doctors to see
if I can find someone that is knowledgeable about OPLL. I would very
much like to get in contact with Dr. Weinstein I am sure that he will
find my case interesting. Could you please give me the contact
information for Dr, Weinstein.

Thank You and God Bless.
John Serow

On May 16, 1:14 am, JAN MCKIM <jjmc...@sbcglobal.net> wrote:
> Dear Pam, Deb, Big George, and all opll friends,
>
> I've been eager to respond to all of your compelling posts but have been dealing with other, unrelated medical issues.  Just to summarize my OPLL history, I was diagnosed with severe OPLL from C2-C7 in 2002 when I was 54.  I had been experiencing tingling in my arms, and had mild urinary incontinence that appeared several years before I was diagnosed.
>
> I remember how surprised I was to hear that I had OPLL when a neurologist reviewed my MRI.  He told me that I would probably need several surgeries, although I am happy to say that he was wrong!  He referred me to Dr. Phillip Weinstein at UCSF (Univ. of Calif. at San Francisco) who had written an article about OPLL.  It was difficult getting an appt. with Weinstein because he is known internationally as a top surgeon but I persevered, and I finally got to meet him.  I liked him immediately due to his great "bedside manner" and his patience in explaining my complicated diagnosis.  I had read lots of articles about OPLL before my visit so I could understand the basics of this rare disease.  However, the surgery he described for me sounded absolutely terrifying.  I waited a year hoping that the symptoms wouldn't worsen but ultimately, I finally realized that I had to go ahead with the laminectomy and fusion of my cervical spine, which Dr. Weinstein
>  performed in Feb. 2004.
>
> I spent 6 months in a restrictive neck brace, and then 6 months of P.T., which was very helpful.  I don't experience any numbness or tingling in my arms any more.  I have limited mobility of my neck, so I have to turn my entire upper body right/left when I drive.  Stretching exercises do help me loosen up, and they also help reduce the pain I have in my lowback which is caused by degenerative disks and sciatica.  I've had MRIs of my thoracic and lumbar spine but there's no evidence of OPLL, thank God!
>
> I've collected a number of published articles about OPLL and have the book, "OPLL", 2nd edition, by Yonenobu, etc.  The book is quite technical but is probably the most thorough source on OPLL.  I think it's important for each of us to try to educate ourselves about OPLL so we can discuss treatment/surgical options with our doc.
>
> I'm encouraged that our little support group is slowly growing, and I really do appreciate hearing from you.  Thanks for sharing any articles and names of drs. who have been helpful.  If anyone would like to contact me for more info. please do.
>
> Jan
> San Carlos, CA
> 650-520-6598
>

> --- On Tue, 5/15/12, Pamela Brockus <pbroc...@hotmail.com> wrote:

>
> From: Pamela Brockus <pbroc...@hotmail.com>
> Subject: RE: Newly Diagnosed
> To: opll_di...@googlegroups.com
> Date: Tuesday, May 15, 2012, 4:36 PM
>
> Hello everyone. I have been having more symptoms the last several months. I went to Mayo Clinic 3 weeks ago and saw a Spine Dr, who referred me to another Orthopedic Spine Surgeon there at Mayo in Minnesota, Dr Currier who has seen others with OPLL. He has a published paper from 2001 about a patient with opll that I found on PUB MED site. The first surgeon I saw 3 weeks ago told me I needed surgery again, but I saw Dr Currier yesterday and he does not think I need another cervical spine surgery again yet. I was diagnosed with cervical spine OPLL back in 2006. I had surgery from c2-c7, mainly laminoplasty operation from the posterior. Dr Currier, said my next surgery will be a BIG surgery, including 3 procedures, from anterior and posterior. I am glad to not be doing it right now!!!!! I started having more pain, numbness, tingling in my chest, back, and left arm in Feb. I fell backwards on the floor for no reason a few weeks ago. My
>  pain that was worse however in my left arm, chest and back has gotten alot better all by itself luckily just in recent weeks.
>
> I have opll and ossification of the ligamentum flaven and facet joints throughout my thoracic spine also, but no bad enough for surgery yet. I Hope I never have to have thoracic surgery, period! The cervical was bad enough. The Spine surgeons both told me at Mayo, that I was totally fused in my  c spine, even where it shouldn't be. They kept referring to me as the 'bone grower'.  I also saw a Orthopedic Hip doctor at Mayo, because since last summer both my hips started hurting. I had mri's of my hips last fall and they found extra bone throughout my hips. The hip dr at Mayo said when my pain gets to the point that I can't stand it, I will need hip replacements in both hips. The hip dr said I will need some radiation therapy and to take indomethacin (anti inflammatory drug) after hip surgery's to try and stop the extra bone (heterotrophic ossification) from growing like crazy right after surgery. The hip surgeon said I have way to
>  much bone in my hips to consider a more minimal arthoscopic hip surgery.
>
> Deb, I am a 52 year old female who lives in NORTHEAST KANSAS. You said you live in SOUTHEAST KANSAS, so you aren't probably very far from where I live. I had my surgery in 2006 in kansas city.
>
> I went to Mayo Clinic in Minnesota because I wanted to try and find out what the underlying cause of all my "bone grower" is coming from. I have the ossified spine ligaments, ossified hips, shoulder, elbow, knee's and ankle, but the dr's don't think I have DISH or Anklosing spondylosis. No Dr has figured out an underlying disease yet.  I am seeing a Genetic Specialist in August in Kansas City to see if I have some genetic disease that is causing me to be a "bone grower".
>
> That is what I have been up to lately.
>
> Pam
>
>
>
>
> > Date: Mon, 14 May 2012 11:44:30 -0700
> > Subject: Re: Newly Diagnosed

> > From: debdea...@gmail.com

[Deb]

John-I wish you the best in your search for a competent and caring
surgeon. The decision to have surgery is one of the biggest I've ever
had to make. Dr finally told me that I wouid end up in a wheelchair
if I didn't have it done. Of course, that was before I had the OPLL
diagnosis.

Jan-Did you find the OPLL book hard to understand? I'm so tempted to
order it but that's a lot of $$$ to spend on something I'm not sure
I'll understand. Your dr sounds made to order for an OPLL patient.
I'm glad you persisted until you were able to see him.

Pam-I live in Baxter Springs. My surgery was performed by Brian
Ipsen, MD from Orthopaedic Specialists of the 4-States. I have a
feeling that after my myelogram follow-up appt that he will refer me
to a Physical Medicine specialist. Ipsen has already told me there is
nothing more he can do for me. I'm very interested in your experience
at Mayo as my husband would like me to go there. I had thought about
KU Med Ctr, have you had any treatment there?

Thank you all for the replies. I've gone from the shocked stage to
the stage where I want to find out everything I can and hear from as
many folks as possible. I know each individual's experience is
different but I'm encouraged so many of you seem to be functiuoning
well.

> > > > - Show quoted text -- Hide quoted text -

[I Do Take Two]

Hi All -

My husband had his non-invasive surgery with Dr Jho in Pittsburgh and
has had an amazing result. Little pain and the numbness has been
arrested and exists ony in the middle finger of his right hand. He had
no fusion and was back to work in a couple of weeks, driving and back to
(almost) normal.

http://drjho.com/cervical_stenosis_surgery.htm

I stumbled across Dr. Jho's website after Mike was dx a couple of years
ago. I panicked and spent days researching. We sent Mike's records over
and his case was approved. Insurance covered! Apparently Dr Jho is very
selective about the cases he accepts. His "bedside" manner may not be
the best, but his skill and result was. I mean, he wasn't nasty or
anything, but he was very dry and methodical. Mike had no problem with
him personally since he is a lawyer and pretty used to dealing with
"just the facts" that aren't sugar coated. Plus he read reams about OPLL
before his appointment so he had a good amount of knowledge beforehand.
I feel blessed to have found this doctor. Hope this helps you, John.

--
Donna, Administrator at IDoTakeTwo.com

[JAN MCKIM]

Wow!  I've never read about Dr. Jho's technique until now.  Thanks for sharing this.  Where is your husband's OPLL located, and when did he have his surgery?  What is your name and your husband's name and where do you live?  I'm trying to keep track of everyone's info., and who recommends his/her dr.  Cheers, Jan --- On Wed, 5/16/12, I Do Take Two <ad...@idotaketwo.com> wrote:

[Pamela Brockus]

Deb, you ask me about Mayo in Rochester MN and KU Med center in KC. I have seen various Dr's at KU MED center, including internal medicine, rheumotology, endocronology, pain management, and neurologist. The Neurologist and the internal medicine at KU sent referrals to Mayo Clinic to try and find out the underlying cause of all my ossiification happening. Mayo scheduled me with a Orthopedic Spine surgeon, who did not have experience with OPLL, but his associate spine surgeon, Dr Bradley Currier was experienced with OPLL. I had to make a return visit to Mayo Clinic on Monday to actually see Dr Currier. So my husband and I drove up there again sunday, saw him on Monday, and returned home after the almost 8 hour drive. I also saw the hip Ortho surgeon monday morning, so it was a very productive trip, but it would of been alot nicer if I hadn't have to go clear back up there again to see the Dr's I needed to see. I would suggest if you go to Mayo Clinic that you request seeing Dr Currier, Orthopedic Spine Surgeon, and avoid wasting time seeing other surgeons that will ultimatly refer you to him, because of his OPLL experience. I have been to the Mayo Clinic in MN before for myself and my daughter, so I know the cheapest place to stay within walking distance. It's the downtown Days Inn, that is across the road from the clinic. You can park in Days Inn parking lot, then you don't have to pay to park in parking garages. The Days Inn is old and not a very comfortable place, but it is cheap, so I stay there. I paid $64.00 for one night for a queen size bed for two sunday night. There are several very nice expensive and much more comfortable places, if you are not concerned about the price of where you stay, including a Marriot and the Kahler Grand that are right by the Mayo Clinic buildings as well.
I don't know of any particular surgeon at KU in kansas city that has experience with this opll, I seriously doubt it, because no one at KU has referred me to see one of there surgeons. My surgeon from my 1st cervical spine surgery in 2006 was Dr Jonathan Chilton, based out of Research hospital in KC Missouri. 
I hope this info has been helpful. I think your husband is right, you should go someplace else, whether it be Mayo or John Hopkins to get another opinion.
Let me know what you decide to do.
Pam from Northeast Kansas

. 

> Date: Wed, 16 May 2012 17:53:39 -0400
> From: ad...@idotaketwo.com
> To: opll_di...@googlegroups.com
> Subject: Re: Newly Diagnosed

[I Do Take Two]

Hi Jan -

It is/was amazing, especially the way ewe found him. You can never tell what's real online, but this surgeon is def real. My name is Donna and my husband is Mike. We had just moved to PA from NJ, another odd happening since Dr. Jho is in PA (though he is about a 4 hour drive from our home)! Still, a bit of an odd coincidence. Mike's OPLL is located C2-6. He had his surgery in May of last year. At his worst he was not able to sleep in his bed and he would have to sleep in a recliner to limit pain. No pain meds helped. He now had a limited amount of pain and takes ibuprofen when needed.

I registered for this group over a year ago and, frankly, there was no action and I forgot about it. I mentioned to Mike last night that it heated up and that he probably should be the one in the discussions since I'm not the patient. One problem, I don't recall how I joined. Can you remind me so I can forward the info on to him? Do I just give him the email address opll_di...@googlegroups.com and ask him to write or is there some sort of approval that needs to happen?

Being dx with this rare disorder can seem isolating, so thanks everyone for igniting this group.

[I Do Take Two]

Again, I highly recommend Dr. Jho in Pittsburgh PA, even if you have to fly there. Personally, I had a mastectomy in 2008 in NYC with a highly acclaimed surgeon who completely botched the reconstruction procedure. Then, after a friend out in CA kept on my about this surgeon in Louisiana, I finally flew down there from NJ, and then again from PA where we moved the next year (I needed several surgeries to correct the first), and it was worth every dime we spent on flights and hotel. I wish I went to this surgeon first. If at all possible, try keep travel out of the equation. Go where you'll get the best treatment.

[Brian Sherrod @mac.com]

Hi - 

I moderate all posts that come in to the discussion board from people who are not members.  That way you don;t have to see all the garbage that people try to post (spam etc). Mike can just post something on the discussion board and I will get it for approval (since he will be a new member) - I will change his membership status and allow his messages to post directly.

I'll try to be a bit more pro-acvtive in the future with posting to the site, just to keep things going. I've always seen luls in the activity as a good thing - no one is having trouble with their OPLL.

Cheers..... 

BrianS
bshe...@mac.com

[Deb]

Pam-Thank you so much for the additional info on your Mayo
experience. My husband read your message first and made me come read
it immediately, saying, "See, I told you you should go to Mayo!" I
googled the route and it's 550 miles, which is certainly driveable and
with your recommendation of an inexpensive hotel, I think we could do
it.. I see Dr. Currier has published many articles. Do you know if
he works in the thoracic area as well as cervical?

Mike and Donna-What a find in Dr. Jho! Thank you for sharing that
link. It's so encouraging to hear successful results like Mike's.
Some days I just want to cut my fingers off they hurt so badly - if I
could get the pain down to just one finger, I think I would cope much
better.

I went to Google Groups home, searched for OPLL, started a new thread
and submitted the original post on this thread. Brian, the moderator,
answered same day and my post appeared.

I'm excited to have so much new information to check out. Thanks to
you all.

> ...
>
> read more »- Hide quoted text -

[Deb]

OK, one more post today then I'll be quiet.

Thought I would share that I found the OPLL book at printsasia.com for
$130.37 plus $3.99 shipping. Enter coupon code MAYCOUPN for a $7
discount. Total order was $127.36.

http://www.printsasia.com/book/OPLL-Ossification-of-the-Posterior-Longitudinal-Ligament-K-Yonenobu-4431325611-9784431325611

Deb

[I Do Take Two]

Thanks. Excuse my naivete, but where is the board for him to sign up?

[Brian Sherrod @mac.com]

No problem - here is the url for the discussion group website. He can go to the website and click on 'New Post' and send a new post - I'll get it and will approve it for posting and change his membership at that time.  Else, send me his email address (send message to bshe...@mac.com) and I will send him an invitation to join the group.

We now have 18 members - it's been a while since I looked and I was surprised by that.  I hope everyone is doing well and the sun is shining where you are - here in Seattle we value all the sunshine we can get.

BrianS
bshe...@mac.com

[I Do Take Two]

Brian - Are you messing with me? LOL I don't see a link to that page.  I'm not sure if he's want to use his personal of business email, so I'd rather just let him register on his own.

[Pamela Brockus]

Deb, you are quite welcome! Dr Currier reviewed my Thoracic MRI also. I have thoracic opll and ossification of ligamentum flavem and facet joints in my thoracic spine too, but it is not compressing my spinal cord yet too much in the thoracic spine, so we didn't discuss surgery for it because it isn't needed at this point. So I can't be certain he does throracic spines, but since he did look at my thoracic MRI, I would think so. 
Pam from Northeast Kansas!
 

> Date: Thu, 17 May 2012 11:01:15 -0700
> Subject: Re: Newly Diagnosed
> From: debd...@gmail.com
> To: opll_di...@googlegroups.com

[Big George]

Hi Pam,
I see a pain specialist PMR doc who has me on low dose Vicodin,
tramadol, and tizanidine for muscle spasm. I take 2 aspirin which
helps a little with some inflammation and works as a mild blood
thinner. I try to stretch every day, which helps keep me flexible. My
hardware in my neck prevents me from resting my head on the floor, but
I use pillows to support my head. I can't look up or down much, and
I'm limited to about 120 degrees from left to right but I'm still able
to drive and get around. I know they can prescribe some meds like
those for rheumatoid arthritis, but those suppress your immune system,
and I'm holding off taking anything like that until I can't stand it
any more. My cousin has rheumatoid arthritis and has been on several
of these meds, and has had MRSA and tuberculosis. I'm not as mobile as
i was, but I stay active. I had to cut back on the aspirin( I was
taking 2 every 4 hours) as my creatinine level was elevated- a sign of
possible kidney damage. When I limited my aspirin to 2 tabs twice a
day, my levels returned to normal. I am in the process of marketing my
barbecue sauce and it is keeping me busy. I hope this answers any
questions. All my best to you and the rest of the group!

Big George

On May 15, 10:25 pm, Pamela Brockus <pbroc...@hotmail.com> wrote:
> I have a question for Big George. What if any medications are you taking for the ankylosing spondylitis?
> Pam
>
>
>
>
>
>
>
> > Date: Sun, 13 May 2012 18:01:02 -0700
> > Subject: Re: Newly Diagnos

> > From: emers...@fuse.net

[Pamela Brockus]

Thanks Big George for responding to my questions. I also see a Pain Management specialist. I have had over a dozen epideral steriod spine injections over the last 3 or so years. I have tried some pain meds but haven't found a magic pill yet that doesn't cause lousy side effects. Vicodin gives me nausua. Tramadol keeps me awake and gives me stomach pains. Muscle relaxers just zonk me out. I have taken Naproxen off and on. I take it with Nexium, for acid reflux, and to try to not get a ulcer/hole in my stomach. I tried taking celebrex and it caused hives and itching. When my back,chest, and arm were going crazy with pain and burning and numbness recently I took all of the above. I also stuck Lidoderm patch on my cervical/upper thoracic spine for about a week. Then I tried using a Flector patch on my cervical/upper thoracic spine. I figured the pain was coming from my spine, so I stuck the patches on my spine. Luckily my pain, numbness, burning has improved and just comes and goes right now. I have read about the anklosing spondylosis and it sounds painful just reading about it. I was doing pretty good with being active till my hips started hurting last summer. If I walk very far, say 30 minutes or more, then  I just have to get off my feet (because of the pain walking caused) and usually recover sitting down the rest of the day. I  still drive also, with my neck limitations also. I can't look up or down much or look from side to side very well either,  like you. My husband put the device that beeps when  I am backing up in my car, if someone gets behind my car  it beeps. I really dislike backing out of parking lots like Walmart...So hard to see, as you know.  It is good to hear that you are keeping busy marketing your own barbeque sauce!  I don't work anymore outside my home, not since 2006, the year I had my c2-c7 mainly laminoplasty surgery. Thanks again for letting me know what meds you were taking. I am always looking for new idea's or new meds to try and see if I can tolerate them. It would be nice if everyone on here wrote what medications they are taking to help them deal with the pain.
Pam from Northeast Kansas

> Date: Thu, 17 May 2012 17:33:59 -0700
> Subject: Re: Newly Diagnosed
> From: emer...@fuse.net
> To: opll_di...@googlegroups.com

[JAN MCKIM]

Hi John, To contact the Spine Center at UCSF where Dr. Philip Weinstein practices, you must call the New Patient Coordinator, Tanya, at 415-353-2380.  The general phone # of the clinic is 415-353-2739.  UCSF is located at 400 Parnassus Ave., and the Spine Ctr. is on the 3rd floor.  Parking is located under the building and can be accessed on Irving.  The City of San Francisco operates the parking garage, and you can park for free at any blue handicapped site if you have a handicapped placard. Before you can see Dr. Weinstein, you must send 1) a recent MRI of your spine; 2) your insurance info.; 3) copies of your medical records; and 4) a referral from your dr. who diagnosed your opll or other spinal problems.  It may be difficult to get in touch with Tanya, so if you don't hear back from her within a reasonable time frame, I recommend that you follow up with a call to the spine clinic general #.  John, please let me know if you make the trip to U.C.S.F.  I would like to meet you, and would be willing to help in any way with your visit. Regards, Jan San Carlos, CA --- On Wed, 5/16/12, JSerow <jse...@swbell.net> wrote:

From: JSerow <jse...@swbell.net> Subject: Re: Newly Diagnosed

[JAN MCKIM]

Hello Brian! I was glad to hear that there are now 18 members of our opll group.  I'm trying to create a member directory with the doctors' names and phone #s of our members.  Is there some way to make an attachment with this info. that could be available to our members? Thanks, Jan San Carlos, CA --- On Thu, 5/17/12, Brian Sherrod @mac.com <bshe...@mac.com> wrote:

[Brian Sherrod @mac.com]

I have all the email addresses and could send it to everyone once it is finished. Probably best not to post it as part of the discussion board because anyone can see that into, not just members.  There may be a way to have a post that only members can see - I'll look into that and get back to you this weekend.

BrianS
bshe...@mac.com

[Deb]

Hello Everyone

 

   So sorry I haven't updated.  I think I've gone into denial or "just ignore it and it will go away" mode but of course it doesn't. 

 

   My local ortho, Dr. Ipsen, said the myelogram showed segmented OPLL in the cervical, thoracic and lumbar regions.  He did not recommend surgery.  Dr. Ipsen referred me to Dr. Riew,      Washington University, St Louis. I saw him July 10 but have yet to receive a copy of the report. grrrrr  Anyway, he said the decision would be up to me to have the cervical/thoracic surgery but that no guarantee could be made of the benefit. The surgery itself would be the test.  He did say Dr Ipsen did an excellent job on my previous surgery, which was reassuring.  I am not going to have the surgery at this time.

 

Dr. Ipsen sent me back to the neuro for symptom management.  Dr. Andrew prescribed Baclofen for muscle spasm and I have seen some relief in my legs.  Unfortunately, I have yet to find anything to relieve the pain in my hands/arms.

 

Hope you all are doing well.  I so appreciate the support and info from each and every one of you

 

Deb

 

[Nancy McInally]

I'm still around also. I continue to struggle with my spine issues. Mostly pain, stiffness and some foot drop. The last O.S. surgeon offered to give me a 3 level fusion but he said it was up to me weather I wanted to try it. I probably won't have another surgery until I have to. I also have a congenital fusion at C 5-6 that causes more complications. He wasn't very encouraging that surgery would reduce my pain. He said it might make it worse or I may not be able to continue working. So I continue to take meds. am currently going to PT again. She said that my whole Trapezius muscle was the tightest She has ever worked on. I haven't tried Baclofen for muscle spasm. What is your experience? Orally or an injection? I have a new PCP who doesn't want to continue prescribing pain meds. to me. I am probably ready to try something new. I have tried so many meds over the years that I have been dealing with my condition that sometimes I forget which I have tried. I am 53 also.

Nancy

[JAN MCKIM]

Hi Alvin,

I'm so sorry you had such an unfortunate experience in surgery.  I've never heard of Dr. Jho, and personally, I wonder why he couldn't see the OPLL in your first MRI?  What were his surgical plans for your 1st surgery?  Please explain ACDF.  Has Dr. Jho ever performed surgery on someone with OPLL?  Not many doctors have.  I would recommend getting a 2nd opinion from a doc who has surgical experience with OPLL. 

My surgeon was Dr. Philip Weinstein at UCSF in San Francisco.  He's written a paper on OPLL and he's the best as far as I'm concerned.  Unfortunately, he's partially retired and works part-time at UCSF.

I hope that others in our small group will respond to your request for more info.  I think that everyone in this group tries to be helpful and considerate of each others situation.Best wishes,JanSan Carlos, CA

---

From: aprovide <aprov...@gmail.com>
To: opll_di...@googlegroups.com
Sent: Tue, January 15, 2013 2:44:59 PM
Subject: Re: Newly Diagnosed

Hi Everyone,

 

Not sure if this group is still active, but I figure I'd give it a shot.

I am an otherwise healthy 42-year old male.

In May 2012, I was daignosed with severed cervical stenosis at the C4/5, 5/6, and 6/7 levels.

After seeing a total of six different neurosurgeons and orthopedic surgeons (I wanted to get a few different opinions :-), they all recommended the ACDF surgery.

I chose a surgeon and scheduled the surgery at the Mayo Clinic in Jacksonville FL. Then I decided to do some research on Dr. Jho (The Jho Institute) in Pisstburgh, PA.

To make a long story short, I ended up undergoing sugery with Dr. Jho in October 2012. After the surgery, Dr. Jho told me he encountered OPLL, which did not show up on my MRI. He tried to address it, but said I started bleeding excessively and he had to abort the surgery due to the blood loss. Needless to say, I had never even heard of OPLL until Dr. Jho told me about it. At that time, Dr. Jho told me that I would most likely have to do another surgery since he did not get to finish what he started (spinal cord decompression). I recently did the post-op MRI and it confirms that there is still significant compression due to bony spurs and OPLL.

I am getting ready to schedule the 2nd surgery, but I am starting to have second thoughts. After reading some of the posts in this group and on other boards, I'm concerned that surgery may end up making things worse.

If any of the Dr. Jho patients are still monitoring this group, I would love to compare notes with you and find out the outcome of your surgery/surgeries.

I would be happy to share more details of my experience with anyone else who may find it useful.

 

Thanks,

Alvin

[rockdoc]

Hi Alvin -

We are still active - just only in brief spurts throughout the year. Your surgery in October sounds like a nightmare - I hope you are doing better now? I was diagnosed in 2009 and had a laminoplasty from C2 to C6. It helped tremendously for a few years and slowly my symptoms have been returning. I'm trying to stretch it out as long as I can before considering surgery again. I don't know if anyone here has met with Dr. Jho - I'm located in Seattle so I've not heard of him. Have you considered a second opinion yet?

BTW - my name is Brian and I'm the moderator here. I have not heard form most of the members in a while so hopefully everyone will chime in with a hello and any info that might help you.

Cheers....

BrianS

[Alvin Providence]

Hi Jan,

Thank you so much for your response.

It must have been something with the MRI that didn't clearly show OPLL. I had five other neurosurgeons look at the same MRI and none of them mentioned OPLL. They all said it was a combination or bone spurs and herniated discs at three levels.His plans for the first surgery was to address the stenosis by doing a multi-level endoscopic anterior foraminotomy. After he told me about OPLL and I did some basic online research, it appears that Dr. Jho is a fairly well-known authority on OPLL. He uses a different technique, which has come to be known as "The Jho Procedure".

I first learned about Dr. Jho from a respected Neurosurgeon in my area (Tampa, FL). I asked that surgeon if there were any minimally invasive techniques to fix my condition without the need for fusing my spine. He mentioned Dr. Jho and said he has the only procedure that does not require fusion. The thought of doing the fusion and most likely having to do more fusions in the future scared me. So I opted to pursue the Jho Procedure in order to avoid the fusion and also reduce the recovery time. Even though the surgery I did was not completely successful and had to be aborted, I have to say that the recovery was easy. I only spent one night in the hospital. I was driving the next day and then got on a plane and flew back to Florida the following day. I was back to work in a week. I did not have to wear a neck brace. However, I developed new symptoms such as a painful burning in my right hand and arm. I also could not use my right hand for about 4 days, but that eventually went away. I still have some pain in the right hand, but not as bad as before.

Anterior cervical discectomy and fusion (ACDF) is a surgical procedure performed to remove a herniated or degenerative disc in the cervical spine. The surgeon approaches the spine from the front, through the throat area. After the disc is removed, the vertebrae above and below the disc space are fused together.

All the other surgeons I saw recommended the ACDF surgery. I opted to go with the Jho Procedure mostly because it did not require fusion.

Here are a couple links describing the Jho Procedure -

http://drjho.com/id53.htm

http://www.livestrong.com/article/285771-what-is-opll-in-degenerative-changes-of-the-spine/

Dr Jho's plan for my 1st surgery was the endoscopic Anterior Foraminotomy procedure at 3 levels. He was only able to get 1 level done before aborting due to bleeding. He is proposing the same surgery again, in which he will address the other 2 levels and also the OPLL.

I am not sure if he has worked on anyone else with OPLL, but his procedure specifically mentions OPLL. I will definitely ask to make sure he has treated other OPLL patients. If not, I will seek a second opinion but I like Dr. Jho despite the issue with my first surgery. I will definitely look up Dr. Weinstein's paper on OPLL. Thank you for letting me know about this.

Thanks again,

Alvin

[Alvin Providence]

Hi Brian,

Thank you for the quick response. The surgery in October actually was not that bad. It's just very disappointing that I have to do it again. I was thinking I would just do the surgery and get it behind me. No such luck :-)

I am mostly recovered now. Only some slight pain in my right had is lingering. The surgery definitely helped with eliminating my chronic neck pains and headaches. My chest pains and tingling also went away, but those seem to be coming back now.

I can certainly understand why you would defer another surgery for as long as you can. It is reassuring to know that you got some relief for a few years. I hope you continue to have relief for much longer.

I have not considered a second opinion yet, but I may do that. At this point I am considering not rushing into the second surgery. Maybe take my time and seek other opinions.

Thanks again for your response.

Alvin

[Deb]

Hi Alvin

Always glad to welcome a new member to our group but sad that you have reason to be here.

Dr. Jho was discussed on this thread.  Scroll to May 2012 and look for posts from It Takes Two.  Her husband had the procedure and was very pleased.  Hasn't posted since.

Personally, I've decided against further surgery at this time.  My docs won't advise surgery as there is no way to guarantee the outcome.  If symptoms get to be unmanageable, I'll have to consider it then. 

 

Have a brand new Ankle Foot Orthotic on the left and a cane for stability.  Still on Baclofen for muscle spasms which helps my legs.  I have yet to find anything that will relieve the pain in my hands.  Started Toviaz for bladder/bowel control a couple months ago.  So far, so good.

Please keep us updated on your condition.  I wish you the best.

Deb Mc  

[Pamela Brockus]

Hello Alvin, 
I had my surgery c2-c7 here in Ks in 2006 for OPLL. Also slowing getting more aches/numbness/tingling since that time. Don't need another spine surgery yet luckily. I am having trouble with a hip right now that has ossified ligaments in it and I get pains that make me gasp and sometimes holler a for a second. Something is catching in that joint. Seeing a hip dr next month at the teaching hospital to see what is what. Hoping a steriod injection will settle things down.  I think it is a very good idea to get other opinions. If your Dr couldn't handle the problem before in surgery, what makes you think he can do better now? I know this sounds cynical, but it is my honest thought. Just want the very best care for everyone!
Hi Deb, Sorry to hear about your hands and no relief in sight. Hope they get more manageable. Don't blame you for not wanting to have another surgery till you have too, since like you said, there is no way to guarantee the outcome.
Take care and God bless everyone!
Pam

 

---

Date: Thu, 17 Jan 2013 10:13:33 -0800
From: debd...@gmail.com

To: opll_di...@googlegroups.com
Subject: Re: Newly Diagnosed

[Alvin Providence]

Hi Everyone,

I have decided to take the plunge and proceed with the second surgery.

From hearing what some of you are going through, I truly consider myself fortunate. My symptoms are not as bad as most of you are describing. But, every day that goes by some strange new symptom pops up. Little pains and twitches here and there.

After giving it a LOT of thought, I decided to take the chance and try to prevent my condition from worsening by doing the surgery.

It is currently scheduled for Feb 5th with Dr. Jho in Pittsburgh, PA. I will let you know how it turns out.

Best wishes to all, and continue to maintain the positive attitude I have heard from all of you. It is refreshing to hear all the positive remarks and words of encouragement from folks who are going through so much pain and uncertainty.

Alvin

[JAN MCKIM]

Hi Alvin,

I see that you've reached that point where your symptoms are telling you to take action.  For me, I was experiencing numbness and tingling in my arms, so I finally took my surgeon's advice and scheduled the surgery.  I had waited one year hoping that my symptoms would improve but no such luck.  My surgeon told me that my OPLL was severe and required a laminectomy and fusion from C2-T1.  Recovery lasted about one year.  Physical therapy helped a lot, and I was able to drive after about 6 months.  No more numbness and tingling.  Luckily, I was retired, so I didn't have to worry about missing work.  I feel fortunate to have the surgery behind me, and thus far, I don't have any OPLL symptoms, except I'm limited by the fusion of my neck.  I can only turn my head a little from left to right.  I've learned to twist at my waist when I need to see things left or right.

What type of surgery is planned for you, Alvin?  There are a few ways to approach OPLL surgery, and these are explained very well in the book, OPLL, by Dr. K. Yonenobu.  He's the expert on OPLL in Japan where there is a higher incidence of OPLL.  Everyone with OPLL should have this book. 

Please keep us informed of your surgery outcome and your recovery.  I will be thinking of you on Feb. 5th.

Best Wishes,
Jan McKim

---

From: Alvin Providence <aprov...@gmail.com>
To: opll_di...@googlegroups.com
Sent: Tue, January 22, 2013 5:01:47 PM
Subject: Re: Newly Diagnosed

[rockdoc]

Hi Alvin -

Saw your post last night.  It's a hard decision to make to get surgery and I always figure my body will tell me when it's reached the point when surgery is necessary. Sounds like you reached that point .. I may not be too far behind you.  My shoulders and upper arms have begun to atrophy a bit and I've noticed that numbness in my left arm and shoulder is getting worse. Plus I can no longer sleep well because of my neck pain - may have to live with that though.

I agree with Jan's comment - there are many approaches to the surgery .. let us know what you have planned. It's likely that one of us has had a similar surgery and might have some advice for you. We will keep you in our thoughts and please let us know how things go as soon as you get to the point where you can get back online. 

Cheers.....

BrianS

[Alvin Providence]

Hi Jan,

The surgery I'm planning is an Anterior Foraminotomy without fusion.

You can get a description of the procedure at this web page -

http://www.drjho.com/cervical_stenosis_surgery.htm

I have decided to delay the surgery by a few weeks. Mainly due to the weather up north (I'm from Florida and from the Caribbean before that so even 60 degrees is considered freezing for me :-). I've noticed that the colder weather causes my neck and shoulder to be very painful. But also because the doctor's office did not follow up with my insurance company, so I have not yet received insurance authorization. There's no way I'm going to do the surgery without first getting insurance authorization.

I'm thinking I will reschedule for early to mid March.

I will keep you guys updated.

Thanks,

Alvin

--
 
 
 

[JAN MCKIM]

Alvin,

Now I recall that I have heard of Dr. Jho's microforaminotomy procedure.  In fact, I had already bookmarked it because it sounded like a good surgical approach for OPLL.  The Spine Universe web site also has a description of this procedure and some of its risks.  I wish that I had known about this option when I had my surgery in 2004 so I could have discussed it with my dr.  Oh well, while I am limited in turning my head left or right, I am glad that I don't have OPLL symptoms (tingling in my arms) any more. ;-)

Best Wishes with your surgery in March, and keep us informed as to how it goes.

Cheers,
Jan

---

From: Alvin Providence <aprov...@gmail.com>
To: opll_di...@googlegroups.com

Sent: Thu, January 31, 2013 7:27:54 PM
Subject: Re: Newly Diagnosed

--
 
---
You received this message because you are subscribed to the Google Groups "OPLL" group.
To unsubscribe from this group and stop receiving emails from it, send an email to opll_discussi...@googlegroups.com.
For more options, visit https://groups.google.com/groups/opt_out.