RE: OPLL in the neck C3-C6

[Pamela Brockus]

Can't help you with a Dallas dr. I live in Ks. I had c2-c7 surgery in 2006. My opll was from c2-c4. I had a posterior laminoplasty with instrumentation procedure from c3-c6. A procedure you didn't name. I had partial laminectomy at the c2 and c7 levels. You might want to research the laminoplasty. With the laminoplasty they cut the lamina at each vertebra level needed and they somehow prior open where they cut at each level and put in donor bone and then tiny pieces of titanium at each level with a screws on each side of the tiny titanium to keep the space open at each level they cut. Basically it makes your spinal column a little wider and makes room for the opll to cohabitate with your spinal cord.  I don't know if I described it very good, but that's what I had done in 2006. 
Pam
 

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Date: Sun, 21 Apr 2013 22:24:31 -0700
From: ajaya...@gmail.com
To: opll_di...@googlegroups.com
Subject: OPLL in the neck C3-C6

Hi All.

I am glad to see this group specific to the rare disease OPLL. 

This is Ajay - age 48, I was diagnosed with OPLL during a MRI scan on 2/26/2013 and the finding were:

1) Loss of cervical lordosis

2) Extensiv OPLL extending from C3 to C6 level indenting anterior thecal sac and causing moderate to severe spinal canal compromise from C3-C6 level along with spinal cord indentation from C3 to C6 level. But no evidence of cord myelomalacia.

C3-C4 level left paracentral protrusion indenting anterior thecal sac causing left neural foraminal compromise.

C7-D1 level diffuse disc bulge indenting anterior thecal sac causing relative spinal canal compromise.

Symptoms include numbness of the arms, spastic weakness, clumsiness in walking or running, difficulty in balance, and disorders in bowel or bladder control.

Given this, based on the research on the Google and this group, I came to know that the currently available conventional surgical treatments include: (1) anterior cervical discectomy or vertebrectomy followed by bone fusion and metal implant, and (2) posterior laminectomy or other similar posterior decompression procedures.

I am curious to know, if any minimally invasive technique like the microforaminotomy done by Dr. Jho can be a successful decompression technique? Or should I opt for more conventional procedures as stated above.

Do you know any neurosurgeon who performs foraminotomy for OPLL in Dallas?

Thanks to all of you who have shared your experiences on this group. That helped me a lot.

Thanks

Ajay Reddy

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[Ajay Reddy]

Thank you Pam for the information. You explained it well.

As you can see, I am some what researching for a minimally invasive surgery at this time. After the research, I can say posterior laminoplasty is the second best option to the foraminotomy I guess.

When I was diagnosed with OPLL in India( I went to see my mother who had a breast cancer, she is fine now after the operation), the neurosurgeon told me about the  laminoplasty. At that time, I was not so educated about the OPLL so it did not go into my mind. After you told me about the  laminoplasty, it sounded like a familiar term after I saw the graphics on the internet.

Well, I like to share what I am planning to do in next two weeks.

I always wonder, what causes OPLL? Even though we all want it to be fixed but I like to understand the root cause of it. Some say it may come from being diabetic (I am) or the way we use the computers (stretch hands and bend the neck while working for  prolonged hours) or a spinal injury at the Lumbar area. Don't know the root cause but one of my friend suggested me to see a specialized upper cervical chiropractor (www.nucca.org) to diagnose the root cause of the problem. Some how, the calcium is going to the wrong places. Brain is so smart, don't know why it sends the calcium to wrong places :)

I know people have different opinions about chiropractors but I found Dr. Lee Yardley (http://www.yardleyinstitute.org/doctor.html)  very interesting. Since there are only ~25 NUCCA doctors in the USA, I went to Seattle from Dallas for the NUCCA treatment.

Dr. Yardley was very open with me that he has not diagnosed any OPLL patient before but he told me that there may be a reason why calcium is being sent to the wrong places. After he checked my spine, he told me that my C1 bone is slightly misaligned by 6 3/4  degrees, which may not be found during the MRI scan- he says.  To him, this could be the reason for the OPLL. After the C1 adjustment, I started to feel energized the next day on wards like getting the half of strength back into my hands and  feeling nerve expansion in my legs ( don't know the right word but a good feeling ) etc. I have some back pain (new thing) but Dr. told me it will go away.  after 3 weeks now, I feel good about it but I have little back pain that come and go and if I stand up after prolonged sitting, I can not stand straight but after a minute or so, I become normal( This has been the case before I went to see dr. Yardley). Except during bowl moment, my right arm does not pinch any longer. a good sign. Except the balancing act after the prolonged sitting, over all I feel good. No more neck pain and no more pinched arms. But I still have some numbness in my hand fingers. (hope I wrote it clearly at this time 1:30 CDT)

 Well, I am going to see Dr. Yardley on the 29th of April and I will post my improvements if any.

While I am going through this, I sent my MRI CD to Dr. Jho in Pittsburgh and waiting for his evaluation if I am a good candidate for Foraminotomy. Also I am visiting with Dr. Shad Bidiwala - neurosurgeon  the 24th April in Dallas. I will post what I find on the forum.

If you need any additional info on NUCCA procedure, Please read this article for good health -  http://www.nucca.org/patients.php#

Please watch the included video too. http://www.nucca.org/intro.htm

At this time, I am only 3 weeks into NUCCA treatment, but thought I would share what I am going through.

[Pamela Brockus]

I have tried to figure out why I have Opll and ossification also in other parts of my body, including my hips, elbows, ankle, knee. I have ossification in ligaments in my cervical and thoracic spine. I was told by Physical Therapist that I saw after I had my c2-c7 surgery in 06, that I should NEVER let a chiropractor do any adjustments on me. As I have 4 pieces of titanium and screws in my neck, I think the PTherapist is absolutely correct in my case. I have done PT a couple of different times since I had surgery. I would never allow them to push on the spinal cord area either, as it hurt and I knew it wouldn't be good for me. Things are crowded in and around the spinal cord, so makes sense to me not to push on it.
I have  done a lot of researching since 2006 trying to figure out why my body puts bone in places it shouldn't. I have not found the answer. I have been to probably a dozen dr's trying to figure it out. But no one knows. I have been seen by multiple rheumys, Endocronologists, Orthopedics, Internal medicine, Immunologist, neurologists, neurosurgeons, and this year 2 Genetic specialists. Some gene testing has been done, but nothing in all the testing has pointed to why this is happening to me.  I do have some genetic duplications which can cause problems, but not my problem with ossification that the dr's know of.  I have almost given up finding out why it is happening. Believe me I have sought the answer traveling to other States even to see dr's that did not find the answer. I was 46 when all this ossification became a problem for me. I am now 53.
If I were you,  I would seek the answer as to why this is happening to you, if you have good insurance or can afford to pay for tests and possibly multiple dr visits. Please keep us updated as to who you let operate on you and what procedure you have done. Then how you get along afterwords.  
Take care!
Pam  
 

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Date: Mon, 22 Apr 2013 23:37:10 -0700
From: ajaya...@gmail.com
To: opll_di...@googlegroups.com
Subject: Re: OPLL in the neck C3-C6

[Alvin Providence]

Hi Ajay,

I was diagnosed with OPLL at the C4-5, 5-6, and 6-7 levels.

I saw multiple neurosurgeons and they all recommended the traditional multi-level anterior cervical discectomy and fusion surgery.

My symptoms were not very severe, but they all warned me of the risks of not doing the surgery. My symptoms were mostly tingling in the left shoulder and arm, chest pain, headaches, and strange spasms in the left hand and leg/foot.

Like you, I was very interested in investigating any available minimally invasive options. I really wanted to avoid doing the fusion as much as I could.

I live in Tampa, FL. One of the local neurosurgeons mentioned Dr. Jho's name to me. I immediately started researching Dr. Jho and his techniques. It is very difficult to find any type of legitimate reviews of Dr. Jho online, so that's what led me to this forum. Everyone on this forum has been extremely helpful and supportive, and I consider myself lucky to have found it.

Around August/September of last year, I sent my MRI film and report to Dr. Jho. His office contacted me saying he reviewed my film/report and that I was a candidate. I was extremely skeptical, but I decided that I would prefer to at least give it a try if it meant not having to do the fusion. It also was a bit reassuring to know that he was part of a legitimate hospital that allowed him to have his practice there. In October I flew up to Pittsburgh to see Dr. Jho and do the surgery if I chose to do so. The way it works for out-of-town patients is  that you will see Dr. Jho on a Monday morning. He will meet with you and go over your MRI, explain what he plans on doing, answer your questions. If you then decide to proceed with the surgery, he will perform it on Tuesday morning.

I met with Dr. Jho and he explained that he was planning to do the anterior foraminotomy at the C5-6 and C6-7 levels. He only usually does no more than 2 levels at a time. He showed me on my MRI that the C4-5 level was not as bad as the others, and didn't think I needed to address that level immediately. He gave me his full attention and gave me all the time I needed to ask my questions. He also had 3 PAs with him that were also answering my questions.

In my case, I checked in early Tuesday morning to proceed with the surgery.

Dr Jho's patients get a private room at the hospital (Allegheny General). I had travelled to Pittsburgh by myself, and was reassured by Dr. Jho's office that it was OK for me to travel back to Tampa as early as the day after my surgery.

I did the surgery. After I woke up in my room, Dr. Jho came by and explained to me that the surgery did not go as expected. He seemed sincerely disappointed. The few reviews I had found online talked about how cold and rude Dr. Jho is. I totally disagree. Dr Jho was very nice to me and I could tell that he really did care about the outcome of my surgery. He explained that when he went in and started removing the calcification, I started bleeding excessively. After losing about 1 pint of blood, he decided to abort the procedure because of the risk. I was up and walking around the hospital on Tuesday evening, just a few hours after waking up from the anesthesia. I spent the night at the hospital and was not in any pain in the neck/back area. However, my right hand was burning. It felt like someone had poured acid on my hand. Dr. Jho thought this was a result of him poking around and moving around the spinal cord. He said it should go away in a few days.

He wanted me to do another MRI after 6 weeks and then discuss next steps, which most likely would mean a 2nd surgery because he couldn't complete the 1st one.

I was discharged late Wednesday morning, jumped into my rental car, and drove to the hotel. I then flew back to Tampa on Thursday morning. They gave me a prescription for pain pills, but I ended up not taking the pills. I was back to work (office job) the next Wednesday.

The few days after the surgery, the only pain I had was the extreme burning in the right hand. The PA called me on Thursday and then the following week to see how I was doing. The burning in the had eventually subsided about 1 week after the surgery. It never went away completely, but it seems now it is only noticeable on colder nights.

In December I did another MRI (in Tampa) and sent the film/report to Dr. Jho. They followed-up and said that I can do the 2nd surgery to attempt to complete what they intended to do on the 1st surgery. I really struggled with making this decision. Just the thought of doing a 2nd surgery was almost enough to make me just leave it alone. 

One frustrating thing with Dr. Jho's office is that they will NOT tell you if they recommend the surgery. They will tell you that you CAN do it, but will not tell you if they think you SHOULD do it. I don't know if that has to do with avoiding liability, but it was very frustrating. I think a doctor should be able to give you their professional opinion as to whether you should do a procedure or not.

But I finally decided to go for it. I scheduled the 2nd surgery for the first week of March. This time I took a friend with me, just for the company.

According to Dr. Jho, the 2nd surgery was a success. The operative report explains that he cracked and removed the calcification (OPLL) at the C5-6, C6-7 levels in order to decompress the spinal cord. The report also talks about drilling, but I try not to think about that :-)

This time I had some discomfort in the neck and shoulder, but still not enough to warrant the pain pills. Also, this time I was walking around and out playing in the snow just a couple hours after waking up for the surgery :-)

I was discharged on Wednesday, and flew back to Tampa on Thursday. Then went back to work the next Wednesday.

Now I am waiting for a prescription to do the post-op MRI. Should get it any time now. I will do the MRI here in Tampa and send it to Pittsburgh. They will then call me to let me know what the MRI shows in terms of how much spinal cord decompression was achieved. I will also be able to look at the MRI myself and compare it to the original.

I know this was very lengthy description, but I also know what it's like to be in your situation. Before deciding to do the surgery with Dr. Jho, I was desperately trying to talk to someone who had experience with him and his procedure. So feel free to let me know if you have any other questions I might be able to help answer.

My one piece of advice if you decide to go with Dr. Jho - you have to go there and be prepared to be very patient. While I think Dr. Jho is a genius and a gifted surgeon, his administrative staff and the hospital administration will test your patience :-) For me, that will be a small price to pay if this surgery ends up doing what it was supposed to. Fingers crossed.

Another thing to be prepared for, is that other (more traditional) neurosurgeons may scold you after you have surgery with Dr. Jho. 

Dr. Jho's procedure is still considered unconventional by most neurosurgeons.

The same local surgeon who mentioned Dr, Jho's name to me, later refused to see me when I told his office I had the surgery with Dr. Jho. I wanted to have a local surgeon/specialist I could go to in case anything happened when I returned home. I honestly don't understand how people like him (the local surgeon) can call themselves medical professionals. It was clear that he was more focused on his bruised ego rather than the health and well-being of his patients.

A lot of people probably don't believe in Dr. Jho's methods/techniques, but I am glad I did it.

I wish you, and everyone else on this forum, the best of luck.

Regards,

Alvin

[Charlene]

Hi Alvin, 

Thanks for posting and sharing your experience with Dr. Jho.  I'm glad to hear your surgery with Dr. Jho went well and that your recovery went smoothly.  I notice that you listed chest pain as one of your OPLL symptoms; curious where was your chest pain located (left/right side, etc)? Reason I ask is because I am having chest pain (more like a constant soreness as if I overworked/strained a muscle) on the right side of my chest and both the pain management doctor and neurosurgeon I met with stated that the chest pain isn't related to my OPLL based on the location of the pain. Currently I am asymptomatic, but I'm starting to think that my constant chest pain is somehow linked to the OPLL. 

Looking forward to hearing about your follow-up MRI and how your surgery has helped alleviate your OPLL symptoms.

Take care!

Char

[Alvin Providence]

Hi Char,

My chest pain was in the middle of my chest. It was more of a sharp pain that would last for about a minute. That's what actually prompted me to go see my doctor. The chest pain together with the numbness/tingling in my left arm made me think I was having a heart attack. After doing an EKG and stress test, my doctor concluded that my heart was fine. She then ordered an MRI solely because both my mother and sister have what my doctor describes as "strange nerve issues". I'm glad she did that.

For me, the chest pain went away after the first surgery with Dr. Jho. Apparently he did just enough cord decompression to alleviate that symptom. Prior to the first surgery, I would have the chest pain at least a couple times a week. Since the surgery (October 2012), I have not had that symptom anymore.

Even prior to the surgery, Dr. Jho thought it was possible that the chest pain could be related to the spinal cord compression. So did the team of surgeons who reviewed my case at the Mayo Clinic.

Strangely enough, all the neurosurgeons and ortho surgeons I saw (a total of 5) did not say anything about OPLL. I didn't even know what OPLL was. They all said my spinal cord was being compressed by a combination of ruptured discs and bone spurs in the cervical spine. The first time I heard about OPLL was after the first surgery with Dr. Jho. He told me that the bony growth they thought was bone spurs was actually OPLL. I'm still a bit puzzled as to why they couldn't tell from the MRI that I had OPLL versus bone spurs.

Hope this helps.

Thanks,

Alvin

[Ajay Reddy]

Thanks Alvin for sharing your experiences with Dr. Jho. That definitely helps me.

I am not a doctor but on your question, OPLL vs Bone spurs. I feel that both are the same. ossified posterior longitudinal ligament (OPLL), in this, Ossification implies formation of bone or bone spurs (with calcium). Some time the doctors use a simple - common language to describe the issue with the patients instead of OPLL - a mouthful phrase. That is what happened to me also. I never heard in my life about OPLL nor I have seen any patient but certainly heard bony growth in the neck.

Oh well, I am glad that you are doing wonderful after the surgery. That part I liked about it. Please let me know when you receive your MRI. I am tentatively(not sure yet) planning to go to Dr. Jho on 5/20. Hopefully I hear back from you by then.

-Ajay

[Ajay Reddy]

Hi Alvin,

I heard back from Dr. Jho's assistant Mr. Morgan Hicks. who said Dr. Jho likes to do a Posterior endoscopic foraminotomy on me because I have continuous ossified ligaments. Dr. Jho's website talks about this procedure but this is only done for disk herniation. Also, I will have only one operation, where doctor makes an inch long incision in the back of the neck and approaches the bone spurs area by working on the spine to move around to get to the anterior place of the spine. Once the bony material is scratched out, they use suction to remove them out of the body.

This is what Mr. Hicks told me on what Dr.Jho will do. Its still scary thing but I like it because it is minimally invasive. Does any one you sees any problem with this type of surgery?

[Alvin Providence]

Ajay,

I believe Morgan is one of Dr. Jho's PAs. His PAs are Patrick, Phil, and Morgan. You will probably meet them all when you do the consultation.

It sounds like the procedure they described will remove the bony material, not just disc material. In my case, Dr. Jho showed me on the MRI where he thought he could perform better spinal cord decompression by using the anterior approach. I'm guessing he believes he can get to more of the bony material from a posterior approach in your case.

For me, personally, I have come to trust Dr. Jho's opinion and judgement. I was a bit doubtful after the first surgery, but then I decided to give it another try. The main driver for me going with Dr. Jho was that I wanted to avoid doing a fusion at all costs. That may not be the main driver for everyone, but it was for me. That's why I think it all comes down to personal choice and what direction we are most comfortable taking, after weighing the potential risks and possible rewards of each option available to us. 

For me, the thought of losing range of motion in my neck and possibly having to do more fusions in the future was very scary. The logic I used was as follows - try Dr. Jho's approach, if it doesn't work, then the procedure is not preventing me from doing the traditional fusion surgery in the future. That was one of the questions I asked him during my consultation. I wanted to confirm that nothing he was going to do would prevent me from doing a fusion in the future. Of course, I also did a lot of searching to make sure there were no malpractice suits again him ;-)

I think you will know what you want to do after you visit him. It will either be that you feel a resounding comfort level with him and his approach, or you don't feel comfortable enough to proceed. In my case, the night before my consultation I was sure that I would not proceed with the surgery. Then during consultation, I just felt that I wanted to get this over with. I remembered the reason I flew to Pittsburgh was to avoid a fusion, and that was what ultimately drove me to proceed with this scary proposition.

I know I haven't really provided any useful information in my ranting, but the point I'm trying to make is that nobody can tell you which option to go with. You just have to make sure you do your due diligence (which you are obviously doing), get as many professional opinions as you can from the best doctors, weigh the options against the criteria that are most important to you, and then go with what your gut tells you.

A couple months before my surgery with Dr. Jho, I was scheduled to do the traditional surgery at the Mayo Clinic where I knew I would be in the best and most capable hands. But something just didn't feel right and I was second-guessing my decision. I went with my gut instinct and cancelled my surgery, and then did the consultation with Dr. Jho. I will never know if I made the best decision, but at least I know that I made the decision that felt right to me.

Best wishes to you as you go through this very tough decision-making process.

And best wishes to all the wonderful people on this forum as we continue to live with and overcome this disease.

Alvin

[Ajay Reddy]

Thanks Alvin for detail explanation on how you made the decision to go with Dr. Jho. I am in the same boat too. Fortunately I don't have to pass through lot of IFs and BUTs. I can straightly go with Dr. Jho for the following reason.

US Dept. Health and Human Services has published a nice explanation on Clinical outcomes of microendoscopic decompression surgery for cervical myelopathy - http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2899765/. They don't say OPLL but they talk about the cervical compression.

An excerpt from the site which provides the detail explanation of the Clinical outcomes. 

The clinical outcomes of this microendoscopic decompression surgery for cervical myelopathy were excellent or showed good results equal to the reported conventional cervical expansive laminoplasty. The privilege of this surgical procedure was less invasive in comparison with the reported conventional cervical laminoplasty. In this study, the bleeding loss, CRP after surgery, VAS of axial pain, and hospital stay were less than those of conventional techniques.

You can read the contents in entirety but the above statement makes me more comfortable. I am now ready for the Endoscopic Posterior Cervical Foraminotomy :)

Most likely Mid may I will have the surgery. I will post the updates if any thing changes.

Today, I am some what happy man. I can see the bright light on the other side of the tunnel :)

-Ajay

[Ajay Reddy]

Hi,

I thought of sharing the information I received from few Neurosurgeons. So far I have contacted 6 of them. Three of them wanted to perform Laminectomy and two of them Laminooplasty for my OPLL from C3-C6. The sixth one is Dr. Jho who will be performing the minimally invasive posterior endoscopic decompression from C3-C6 in mid May.

Regardless of the outcome from the procedure, I just wanted to take chances with Dr. Jho. I have an option of Laminectomy if it does not work and if I survive the Jho's procedure :)

Well, also I heard from these doctors and some research on the internet that, we all OPLL lucky people have the NPPS gene that plays an important role for the OPLL. So this is the culprit. 

http://www.ncbi.nlm.nih.gov/pubmed/10453738

You may research on the NPPS gene on the internet  - you will find lot of information.

Thought of sharing this and wish me luck for the procedure from Dr. Jho.

Ajay A. Reddy
ajaya...@gmail.com
+1-972-365-9053

[JAN MCKIM]

Ajay,

Thanks so much for sharing these abstracts with us.  Keeping informed about OPLL related articles is difficult, so I really appreciate the info.

So you're heading to Dr. Jho this month?  I wish you the very best outcome, which should be good considering all the research you've done.  Let us know how you progress.

Cheers,
Jan
p.s. One suggestion for pre-surgery --- if you're feeling anxious beforehand, take your iPod/headphones so you can listen to music.

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From: Ajay Reddy <ajaya...@gmail.com>
To: opll_di...@googlegroups.com
Sent: Fri, May 10, 2013 11:33:43 AM

Subject: Re: OPLL in the neck C3-C6

[Ajay Reddy]

Hello  All,

I survived Dr Jho's surgery :)

He did a endoscopic Laminectomy without the fusion to decompress the spine from C3-C6.

I am doing extremely well even though from last 3 days after the surgery my hand fingers were swollen. Now I am fine. 

Dr. Jho is an extremely talented guy and he acted very professional in dealing with my case.

My preoperative symptoms are almost gone except the numbness in the left leg fingers which may be a permanent damage due to OPLL.

I strongly recommend Dr Jho. for OPLL treatment.

I will write a detail email on what actually went there next week. But for now. I like the man who saved me from the paralysis attack due to OPLL.

Don't have any apprehensions about Dr. Jho. Thats my experience.

[Kiwi]

That's great news Ajay and hope you go from strength to strength.   

Cheers

Kiwi Jane

[Brian Sherrod]

Great news Ajay!  I hope the lingering symptoms disappear and you have a speedy recovery.  Keep us posted on how things go.

Cheers...

BrianS

[Alvin Providence]

Hi Ajay,

I'm so glad to hear that the surgery went well and you are already seeing improvements. 

After my first surgery with Dr. Jho in October, my right hand and fingers were extremely sensitive and painful. Similar to your experience, it went away after about 3-5 days. There is still a very slight lingering sensitivity, but I hardly even notice it.

I did a new MRI about 8 weeks post-op from my March 2013 surgery. I haven't heard back from Dr. Jho's office yet, but just from looking at the images I can see a remarkable difference. I can actually see where the spinal cord has been decompressed at the C5/6 and C6/7 levels. Just waiting from official word from Phil that all looks well based on the MRI.

All of my original (pre-surgery) symptoms are pretty much gone.

I will try to upload some images showing the before and after.

Wishing you a speedy recovery!

Alvin

[Ajay Reddy]

I just attached the MRI images - before and after the surgery. What a remarkable difference. 

Have a nice week-end.

[Ajay Reddy]

Hi All.

I like to share some more. On 10/8/2013, I had the Anterior cervical foraminotomy on (C6-C7) with Dr. Jho. So far it appeared to be successful. As you can see from the previous images of the  MRI on my spine, I had the cervical stenosis from C3-C7.  But before my first surgery (Endoscopic Posterior Laminectomy without fusion on C3-C6),  C6-C7 was not that bad so left out during the surgery. Not sure if it creates any stability issues with Laminectomy but it was not touched the first time. Due to this, I had the pain on the left index and thumb fingers right after the surgery and that continued till 10/8/2013. This is because I had the ossification on the anterior side from c6-c7 

I had consulted at least 7 Neurosurgeons before the first surgery and every one cautioned me that no one really understands the behavior of the spine when it is released from several years of compression. It will have some effects but no one knows exactly - like numbness, swelling of fingers, pain the hands etc.

So, I was extremely happy with the first surgery except the pain in the left fingers. More over I had no strength in the left hand too.

The pain in the left hand fingers is all gone with the recent Anterior cervical foraminotomy on (C6-C7). I had very minimal post op pain and could walk right after the surgery. Once I came back to Dallas on the next day, the 3rd day I had the most pain but 4th and 5th days are just fine. I am recovering fast. I did not take any pain medications even though I could have. For me, it changes my system like constipation etc I don't want to take it.

Well, over all my experience with Dr. Jho was great including his 3 PAs. For me, without Dr, Jho, I would have had the Laminectomy with fusion or Laminoplasty with physical limitations on the movements. Now I can move, bend and of course dance if I want to ...... :) 

Please let me know if you have any further questions. I will post the MRI after the two months wait on the recent surgery for your reference. 

Never feel alone - OPLL can be diagnosed without the plates/fusion  :) 

Ajay Reddy

[JAN MCKIM]

Congratulations Ajay,

What good news for you..............no more tingling in your fingers, and what a fast recovery!  I think that Dr. Jho will be seeing more patients with OPLL thanks to your favorable reports.  What kind of insurance do you have?  Does Dr. Jho accept health insurance?

Cheers,
Jan McKim

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From: Ajay Reddy <ajaya...@gmail.com>
To: opll_di...@googlegroups.com

Sent: Saturday, October 12, 2013 5:54 PM

[Ajay Reddy]

Hi Jan,

My pain in the left hand fingers is gone and strength return to the hand. I will have to wait another month before I can lift waits :) 

The tingling in the left hand finger is there. Dr. Jho said it will take 6 months to a year to get normal.

Prior to the recent surgery, I could not bend the fingers. they were very stiff and painful. Thank god, I am out of it.

I have Aetna insurance and literally I got a good deal. My out of pocket maximum was 6k with 2k deductible. so my total liability in a year is 8k. Hardly I paid 3k from my pocket.  

Oh well, yes Dr. Jho accepts most of the insurances. So you will be fine.

I see some comments about bed side manners on Dr. Jho. To  me, it was a pleasant experience. of course, I have a smiley face :) and I am happy that my symptoms are gone.

I heard that on Tuesdays he does cervical and on Thursdays Lumbar related surgeries. Each day he does any where between 3-5 surgeries. 

With this type of work, any person gets exhausted. More over, my experience with orientals is, they do not open up initially for conversation most of them are good people. The trick is, make the poker face to smile, then you feel good about Dr. Jho. Engage him  into a nice conversation etc. you will feel good about him.

My take is, once the OPLL is in the body, no one can make you better 100% after the surgery. This is because we are dealing with the nerves and the spine. They take time to get to normalcy with the past signaling in the body to come back.

To me, as long as the person is free from OPLL without any fusion or metallic plates for stability, we have archived 100% success there itself.

[Tia]

Hi Ajay. I am glad to hear you are doing better! I am considering Dr. Jho my opll in the cervical spine, and plan to send my MRI's to him soon. Aside from the pain, which I have been dealing with, and feel I can, I am concerned about the changes in my walking that are becoming noticeable. Can you talk a bit more about your pre surgery symptoms as far as walking is concerned, and how they were relieved after surgery? Also, if anyone else has any information in this regard I would appreciate it thanks!
 

Thanks

Tiam

---

From: Ajay Reddy <ajaya...@gmail.com>
To: opll_di...@googlegroups.com

Sent: Sunday, October 13, 2013 9:19 AM

[Alvin Providence]

Hi Jan,

To give you some more information on insurance coverage, I have United Healthcare and they covered everything (including the multiple MRIs) after I met my $1000 deductible.

I was concerned they would not authorize the 2nd surgery, since it was the same procedure as the first and it was only a few months apart. But they did authorize and cover it.

Even with me having the two surgeries, the cost to the insurance company was still less than half of what the traditional (fusion) surgery would have cost, so I think insurance companies should see this as a huge cost saving for obtaining basically the same outcome. Just my opinion ;-)

Take care,

Alvin

[Ajay Reddy]

Hi Tia,

The best thing to get rid of OPLL symptoms is the quick surgery. OPLL symptoms are very well stated on the http://www.drjho.com/id53.htm site.

Symptoms may include numbness of the arms or torso/legs, spastic weakness, clumsiness in walking or running, difficulty in balance, and disorders in bowel or bladder control. Putting the buttons of a shirt was more challenging for me before the first surgery.

If you see my MRI before the first surgery, pretty much no water around the spine from C3-C6. I was in a pretty bad shape. I was told that my time was ticking and could have been paralyzed if the OPLL was not treated in May this year.

Once the surgery is done on you, foraminotomy or endoscopic Laminectomy (no fusion), assume that you will not be 100% cured. This is because, the body/nerves and spine has been changing and getting accustomed to the current cervical space. Once the spine is de-compressed, it is going to take few months before one can get to the normalcy, may be or may not be 100%. This opinion was stated by almost 7 neurosurgeons. So I am fine with what I am today luckily.

Please let me know if you have further questions.

[Tia]

Hi Ajay--

Thanks for your response the information is invaluable. I know very little about the surgery. I was diagnosed 4 years ago, and only since the last two I have started having problems walking normally and such. For me, I have been not pushing surgery because the traditional seems so invasive and I worry that it could affect my life as I am a grad student with a very busy schedule. However, with my walking and such becoming more problematic, I cannot afford to ignore. I have to do something!

So I was very excited to hear about your experience with Dr. Jho. My only concern is will it help to address my gait or walking issues because for me that is a major determining factor as whether I want to pursue surgery or not. If there is even a chance that it could do that I will take it...What are the benefits of surgery to you? And can you note your improvements?

Also, my doctor mentioned to me that he would probably perform  the laminoplasty. With the exception of the fusion is that the only difference between that and the laminectomy that you had? Lastly, can you give me any other details regarding surgery eg. how long was the procedure..How long were you in recovery...Were you able to sleep lying down..and without a collar .etc......Thanks in advance!

Tia

---

From: Ajay Reddy <ajaya...@gmail.com>
To: opll_di...@googlegroups.com

Sent: Sunday, October 13, 2013 11:45 AM

[Ajay Reddy]

Hi Tia,

If you are diagnosed with the OPLL, please do not take it easy. My experience is, there is no medication to it. What ever you are doing is ignoring the symptoms. If you have walking difficulties, I am sure you have at least two levels of cervical stenosis (OPLL). Of course I am not a doctor but I can say based on my experiences. I fell 3 times walking - no major injuries. Need to be careful when you get down the steps. You may notice, your vision shows 2 steps instead of one. There are pretty common symptoms for severe OPLL. Please watch the following Laminoplasty video. The number of hinge based surgeries depend on your cervical stenosis levels. you may need at least 3-4 levels of this type of surgeries.

Aslo, Laminoplasty is not for every one. You neck curvature determines if you are a good candidate for it. Also, doctors cautioned me that people complain about neck pain from time to time. So, that is why I did not opt for Laminoplasty. In this video, you see metalic implants but you may opt for your own bone grafts that way no plates will be in your body.

http://www.youtube.com/watch?v=IaWBu2l9QE8

The following is the Laminectomy video with fusion.

http://www.youtube.com/watch?v=_vyNtvDQ4Lw

The procedure I had is not exactly that but I had the endoscopic Laminectory and not an open procedure. With my surgery, the muscle was intact with 1/2 inch incision so, no fusion has been done and hence did not require any collar to support the neck.

After the surgery I was walking faster than ever before :) . So I am happy.

Sleeping on my back was not an issue. so I am happy with what I got.

[Tia]

Ajay--

Thank you so much!

---

From: Ajay Reddy <ajaya...@gmail.com>
To: opll_di...@googlegroups.com

Sent: Sunday, October 13, 2013 1:20 PM

[Ajay Reddy]

Sorry I forgot to tell you, my first surgery stay was 3 days because I had the pain in the left hand fingers. If the pain were not there, I would have been discharged in 1 or 2 days. No collar was needed because there is no fusion of the bones. Doctor made a 1/2 inch incision and used endoscope to go to the posterior section of the vertebrae (like you see in the Laminectomy video) and used the proper tools to cut the C3-C6 posterior sections. The muscle was not cut so, no fusion was necessary to provide the support. My numbness in both hands was gone in approximately 3 weeks. I only had the pain in the left hand index and thumb fingers.

On 10/8/2013 surgery, I stayed overnight in the hospital. Came back to Dallas on the next day of the surgery. I had severe pain on the 3rd day. Did not take pain medications even though I could have. 

So far I have no restrictions on the neck and I can walk freely with out any exhaustion.

 

If you have any cough 2 weeks before the surgery, please do not go for the surgery. I had the remnants of the cough before the surgery but after the latest surgery, I have to be careful when I cough. The whole body vibrates with the cough and this cause little more pain tin the neck due to foraminotomy surgery.

Hope this helps..

 

On Sun, Oct 13, 2013 at 12:59 PM, Tia <troc...@yahoo.com> wrote:

[rockdoc]

Hi Ajay (and everyone) -

Glad your surgery went well - your information on Dr Jho is very helpful. I'm bound to my HMO but I'm wondering if they offer a similar approach or is this something Jho only does? I recently spoke to my GP and she recommended that I go back to their neuro group to deal with some of my issues -- most likely through a laminectomy this time. I have trouble typing now - I make lots of mistakes, and stumble frequently while I walk. I've been trying to put it off as long as I can but I think the time is getting near. Just trying to screw up the courage to make the appointment - I'm not looking forward to more surgery plus it will likely signal the end of my research career, so I've been putting it off. 

Thanks for the info and positive outlook! Good luck out there.

Cheers.....

BrianS

[Tia]

Helps a lot thank you!

---

From: Ajay Reddy <ajaya...@gmail.com>
To: opll_di...@googlegroups.com

Sent: Sunday, October 13, 2013 3:20 PM

[Ajay Reddy]

Hi Brian,

Hope you feel better. I learned from experience that the more we wait with OPLL symptoms, it is very had to recover back and get rid of the other symptoms like numbness, etc. It takes lot of time to get back. So, the sooner the surgery is done, the better you are.

If you have multi-level cervical stenosis, then the minimally invasive surgery is called, "Endoscopic Laminectory". You need to find the doctor who does this surgery. regular Lminectomy is a open procedure and most like the fusion is required. you may need 3 months of recovery or more with open Laminectomy. 

With "Endoscopic Laminectory". you can move & bend the neck next day itself and healing of the surgery wound may take 2 weeks. but you may continue to recover after one week at the most.

Laminectomy does not need to have a fusion for stability.You can find numerous articles like this.

http://beckersspine.com/spine/item/2742-6-things-to-know-about-endoscopic-cervical-spine-surgery

You may watch this video. Fusion is bad at times. I have not interfaced with Dr. Bryan Massoud but you may to research on his techniques.

http://www.youtube.com/watch?v=KORER7Z259g

Dr. Jho did 2 incisions of 1/2". One to operate and another to drip the blood out for 24 hours after the operation.

Since endoscopic laminectomy does not touch the adjacent tissue or bones, there is no need for fusion I believe.  Only experienced surgeons perform this at the cervical area due to the sensitivity of spine at this place.

If it simply one or two levels of cervical stenosis, then the "Foraminotomy" is the right surgery like the following. Other doctors may be able to do it. Please google it for this key word.

http://www.atlanticspinecenter.com/spinehealth/treatments/endoscopic-foraminotomy/

Opt for minimally invasive surgery if it can be done. This will save lot of time. I am an IT professional. To my surprise, I could able to type after 3 days after my first (major) surgery. You will get better too.

To me, fusion is very rarely needed under current and most advanced surgical techniques.

[Nancy]

Hi Brian,(and everyone??)

I noticed your post and wanted to respond to you personally. I hope I did. I haven't had this phone long. My name is Nancy and I am from Oregon. I was in a OPLL group with you and George and a few others a few years ago. I am still around and continue to struggle with my cervical and Thoracic Spine issues. I have been trying to avoid another surgery also. The OS I saw thought that the 3 level surgery with hardware would probably make it hard to continue with my career also. He offered this 2 + yrs ago and I decided to postpone until there was no other choice. Maybe not smart but can't really afford to quit working at this point. I take pain meds, muscle relaxers and try to maintain my ROM. Lately my thoracic spine has become less mobile and more painful. My cervical issues are only slightly more painful. Of course now my Lumbar is getting involve also. My ability to walk changes from day to day. Foot drop and neuropathy of my left foot make me cautious and that why I have only fallen a few times. I would like to hear how you are doing. Have you had to modify your job? My immediate supervisors were helping me do this last year but we got a new director who doesn't understand and has me working with some children who are quite challenging. So far I am surviving but I have only been back to work for less then 2 months. Better quit rambling on. Got to get ready for work. Take care,

Nancy

Sent from my iPhone

[Brian Sherrod]

Thanks for the new info Ajay.  I'm going to talk to my docs about thus and see what they say. So far they have been great so I trust they will point me in the right direction.

Cheers......

BrianS

[JAN MCKIM]

Hello Ajay, Brian and opll friends,

I just reviewed the links in your email, Ajay, and I now think I understand how endoscopic spine surgery is performed.  Thanks so much for sharing these helpful sites with us.  In my case, I had a laminectomy and fusion of my cervical spine from C2 to T1 in 2004, and I don't think that endoscopic spine surgery was well known back then as an alternative for correcting OPLL.  In all of the medical research that I did before my surgery, I never came across this type of surgery.  So it must be a newer option for spine surgeries.  I wonder if Dr. Yonenobu in Japan is performing these minimally invasive endoscopic spine surgeries?  He's like the "guru" of OPLL surgery.  Nowhere in his latest edition, 2006, of his book on OPLL is endoscopic spine surgery mentioned.  His primary surgical approach is laminoplasty.  So you and others in our little group have educated the rest of us about OPLL surgical options.  I am happy for your outcome and appreciate your sharing with us.

Best wishes to Brian and others who are dealing with problematic OPLL symptoms.  Keep searching for the best treatments so you can resume your lives without pain and disability.  You all are so brave and deserve the best medical care.

Your friend,
Jan in San Carlos, CA

---

From: Brian Sherrod <sherro...@gmail.com>
To: opll_di...@googlegroups.com
Sent: Sunday, October 13, 2013 7:05 PM

[Ajay Reddy]

Hi Jan,

I did not know about the endoscopic Laminectomy until one day before the surgery. I thought to myself, what would I loose with this surgery. IFor some reason stability is needed then I can have the fusion done at the later stage. So far I have no pain or any limitations what so ever on my neck. Going strong.

As the article says, surgeons need lot of practice befoe they can perform laminectomy near the cervical area, looks like the technology is being used widespread in the medical profession. When I searched on the google, so many doyors are performing the surgery now.

Certainly I am glad to live in this era, where we have an option for minimally invasive surgeries.

 Good luck to every one. I will be glad, if I could able to help any one.

[Ajay Reddy]

I found the following links more helpful. One is a Korean site. I want to say that I have not contacted them so I don't know the validity on what they say. But I thought it is good to know the what these minimally invasive surgeries are about.

http://www.expertconsultbook.com/expertconsult/ob/book.do?method=display&type=bookPage&decorator=none&eid=4-u1.0-B978-1-4557-0989-2..00015-5--s0015&isbn=978-1-4557-0989-2#lpState=open&lpTab=contentsTab&content=4-u1.0-B978-1-4557-0989-2..00015-5%3Bfrom%3Dtoc%3Btype%3DbookPage%3Bisbn%3D978-1-4557-0989-2&search=none

http://www.wooridul.com/Medical/spine_mistc.jsp

On Mon, Oct 14, 2013 at 5:43 PM, Ajay Reddy <ajaya...@gmail.com> wrote:

Hi Jan,

I did not know about the endoscopic Laminectomy until one day before the surgery. I thought to myself, what would I loose with this surgery. For some reason stability is needed then I can have the fusion done at the later stage. So far I have no pain or any limitations what so ever on my neck. Going strong.

As the article says, surgeons need lot of practice before they can perform laminectomy near the cervical area, looks like the technology is being used widespread in the medical profession. When I searched on the google, so many doctors are performing the surgery now.

Certainly I am glad to live in this era, where we have an option for minimally invasive surgeries.

 Good luck to every one. Please let me know if I can be any help..

If it is simply one or two levels of cervical stenosis, then the "Foraminotomy" is the right surgery like the following. Other doctors may be able to do it. Please google it for this key word.

BrianS

Hi Tia,

Hi Jan,

My pain in the left hand fingers is gone and strength return to the hand. I will have to wait another month before I can lift weights :) 

[Big George]

Hello to all in the group,

  I have recovered from my April decompressive laminectomy, but continue to have symptoms of leg weakness as the day progresses. Most days,when I first get out of bed, I have no symptoms, but after noon I have leg weakness. It seems to get worse as the day progresses, no matter how active I am. My new neurosurgeon, Dr. Bohinski, thinks this might be coming from previous damage from my cervical spinal cord compression. He informed me of spinal cord atrophy in my cervical spine. I am glad you have found successful treatment in different areas of the country. I am offering a bit of advice from someone who has had 5 surgeries( 3 in C spine, 1 in L spine, and 1 in T spine), please don't wait to get decompressed if you are having neurological symptoms. I waited as long as I could for my second C spine surgery, and now I have spinal cord atrophy with permanent damage. I am walking with a cane, now, but I am still walking! Keep moving, no matter what, it helps keep us flexible and mobile. Everyone, keep up the good fight! Don't let OPLL rule your lives! It is something that might not have a prevention or cure, but decompression is a viable treatment!

All my best,

Big George

[Pamela Brockus]

Hello to Big George and all!
So glad to hear from you Big George. I have been wondering how you have been getting along since your last surgery. Sorry to hear that you have spinal cord atrophy with permanent damage. You said you waited a long time for your c-spine surgery, too long it sounds like you think now. My question to you is did you see any neurosurgeons prior to the 2nd c-spine surgery, that encouraged you to have a second surgery, after you started having more neurological symptoms, but you just waited. I'm wondering if a neuro surgeon told you to have surgery, but you didn't have it then, until much later. I myself am just gradually having more pain throughout most of my body, a heavy feeling walking at times, but I saw a Neurosurgeon just a few months ago who said I didn't need surgery yet again in my c-spine  based on the mri I just had( I had c2-c7 surgery in 2006- only surgery I have had).  It is so hard to know what is the right thing to do. The last Neurosurgeon I saw, was a new one for me. Some dr's, I suspect, don't even want to operate on our complex opll messes. All you can do is follow your gut I guess on what to do. Sadly, hindsight is really easy isn't it? Thank you for getting on here today. It really helps me to read your hind sight perspective. If I keep getting worse, I will seek out the Neurosurgeon who did my surgery in 2006, whom I trust. Also, BIg George, have you had emg/nerve conduction studies on your legs since surgery? Does spinal cord damage show up on the emg/nerve conduction studies, do you know? 
Again, glad to hear form you Big George and glad to know your still doing as much as you can.
Pam from KS
 

---

Date: Tue, 22 Oct 2013 10:56:52 -0700
From: emer...@fuse.net
To: opll_di...@googlegroups.com

Subject: Re: OPLL in the neck C3-C6

[JAN MCKIM]

Dear Big George,

Thanks for sharing your experience and precautions about delaying surgery for opll tx.  I delayed surgery for one yr. after I was diagnosed with opll, and my symptoms did not get better, only worse.  When the numbness and tingling continued in my arms and legs, I scheduled the surgery for laminectomy and fusion of my cervical spine from C2-T1.  This was back in 2004, and I'm happy to say that it wasn't too late to decompress the spinal cord.  Altho' I don't have much range of motion in my neck, I no longer suffer from the numbness and tingling.  In hindsight, I wish that I had known about the Jho procedure which is much less invasive than a posterior surgical approach including laminectomy and fusion. 

This forum is so helpful for all of us to learn about treatments for OPLL.  Each of us has our own story to tell, and I truly value each of your insights and knowledge about this disabling disease.  So please continue to share any news of your conditions, and any breakthroughs in treatments.

Best wishes for everyone,
Jan
San Carlos, CA

---

From: Big George <emer...@fuse.net>
To: opll_di...@googlegroups.com
Sent: Tuesday, October 22, 2013 10:56 AM

Subject: Re: OPLL in the neck C3-C6

--

[Pamela Brockus]

Jan,
Your surgery was in 2004 and sounds like your opll has not continued to grow in the same or other area's of your spine, or at least not enough to cause further problems, which is wonderful for you. Opll is so unpredictable. It can grow and spread to any and all area's of the spine. Mine has spread and causing problems over the years since my surgery (c2-c7) in  2006 of the cervical spine. Sounds like several of us with opll are in the same boat, with it growing and spreading and causing more problems even after surgery's.  
I  myself am still not sure about the Jho procedure. I had a posterior surgery (laminoplasty with mini titanium plates).  It is hard to know what is best. I am hoping we will hear more about the Jho procedure by others in the coming days. 
Pam from Ks
 

---

Date: Tue, 22 Oct 2013 13:38:34 -0700
From: jjm...@sbcglobal.net

Subject: Re: OPLL in the neck C3-C6

To: opll_di...@googlegroups.com

[Tia]

Hi Jan, I am so glad to hear that your surgical procedure seemed to have helped. As a person considering surgery, it is very discouraging to constantly hear all the negative stories, and less than positive outcomes particularly with respect to surgery. I think it is particularly difficult when it is all new to you. I know initially, when I joined the discussions I was so upset by some of the horror stories I had come into contact with that my husband suggested that I steer clear of the blogs and such altogether. Thankfully, he helps me to focus by reminding me that everyone is an individual, and may not have the same experiences. With that said, I do find comfort when I hear about other's success in treatment and the positive attitudes of people like you, George, and Ajay; despite what may be going on physically. As a person studying to be a psychotherapist, I really think being around positive people, and keeping a positive attitude no matter what, and remaining prayerful, and informed are all ways to help combat any adversity, and that includes OPLL! We all can do that. Thus, we all should feel empowered. I will leave you all with one of my favorite quotes.   

"Every tomorrow has two handles. We can take hold of it with the handle of anxiety or the handle of faith."

- Henry Ward Beecher

Tia

---

From: JAN MCKIM <jjm...@sbcglobal.net>
To: "opll_di...@googlegroups.com" <opll_di...@googlegroups.com>
Sent: Tuesday, October 22, 2013 3:38 PM