Hi...from a noob who needs direction

[lac27513]

Do I have a problem here?

Hi, I've been reading and learning here for a few weeks without ever posting. Sorry for asking the question before introducing myself. I am six weeks post op having had an anterior cervical diskectomy and _________placement. In case it doesn't show, the link is to an image of the first xrays that I have seen since before the procedure and I'm wondering if I haven't made a huge mistake. I'll explain more about that later.

I've been off work since the end of February. I merely woke up one morning with a stiff neck and fever, but went to work anyway because I had a meeting. I felt progressively worse and thought I may be getting the flu so I told my supervisor that I needed to leave. I went to the GP doc the next day. They felt that I had 2 unrelated problems...a virus and after doing an xray, possibly a herniated disc. I knew that I have had 2 herniated discs in the past, but they had not been causing me any problems. But comparing the new xray to those in the past was significantly worse. My doctor told me stay home a few days gave me a course of steroids by mouth and referred me to a local pain management group. My range of motion became progressively worse. The pain management group ordered an MRI and nerve conduction studies. It showed DDD with HNP at C5-6 and C6-7, radiculopathy, along with another course of steroids by mouth. When I had no significant relief, they ordered PT which I was unable to tolerate. Next came epidural and transforaminal steroid injections. (3 each, 2 weeks apart) The doctor felt that if I had 2 more transforaminal injections, I would be better and my left arm pain would be at least as good as my right. I felt that I could not tolerate any more steroids because of their side effects, so I asked for a referral to the neurosurgeon. The pain management doctor didn't feel that would be of benefit but finally relented. I was having increasing symptoms including problems walking, and urinary frequency/urgency/incontinence along with the headaches, arm pain, neck range of motion problems. It was difficult and tiring just holding my head up. The pain management doctor suggested that I see a psychiatrist in addition to the neurosurgeon and I was started on antidepressants in addition to steroids that were already in my system. The pain management doctor kept telling me that he could fix it...and I was trying to go the conservative route, but I finally felt that I just wasn't getting any better. When he said that only 10% of his patients require surgery, I figured that he didn't want me messing up his statistics. My blood pressure had never been high in my life, but was now 154/92 and I was an emotional mess. I think it's called Roid Rage.


The neurosurgeon ordered another MRI after having seen that I failed conservative care. I was amazed the pain management doctor still wanted to do more injections.

This is from the 2nd MRI-
Findings-
C2-3 and C3-4 –Small central disc protrusion minimal distortion to ventral theca sac

C4-5-Moderate disc degeneration with disiccation and height loss and 2mm anterolisthesis, Moderate endplate osteophytic ridging is present, eccentric to the left, flattening the left ventral thecal sac, possible minor cord distortion. Mild bony foraminal narrowing on left.

C5-6- Severe disc degeneration with desiccation and height loss. Moderate endplate osteophytic ridging is present, eccentric to the right and left of midline. Right ventral thecal sac is flattened, possible canal stenosis and cord distortion. Uncovertebral joint hypertrophy and to a lesser degree facet hypertrophy leads to bilateral foraminal narrowing, moderate-severe in degree.

C6-7-Moderate-Severe disc degeneration. Moderate endplate osteophytic ridging flattens the ventral thecal sac. There is bony foraminal narrowing bilaterally, roughly moderate on the right and moderate-severe on the left.

Impression-
-Multi-level cervical spondylosis with bony foraminal narrowing most advanced at C5-6 and C6-7
-Small dorsal, central disc protrusions noted at C2-3 and C3-4.

The neurosurgeon felt that a single level ACDF at C5-6 would be sufficient. I explained that the reason that I had gone through all the conservative care was to avoid fusion. I was very active, with an active family. My insurance only covered fusion so he mentioned the possibility of participation in a clinical study for a new artificial disc. I read the protocol and after a few days thought, agreed to participate. It was a 50/50 chance of having the fusion anyway, so I figured that I couldn't lose by at least allowing myself to be randomized. In mid-June I received an Anterior cervical diskectomy and neo disc placement. I was discharged the next morning with pain meds and no collar after my post op xray. I never saw that xray or report. I read the operative report and I'm not sure that an xray was taken prior to closing...I don't even know if that is standard procedure or not.

My post op course has been rather disappointing. While the pain down my arm is mostly gone and the some of the worst of my neurological problems are improved, my neck pain, tolerance/fatigue and range of motion problems have not improved at all. I am still very limited in my range of motion, and cannot drive on the highway. (I'll admit to driving short distances when I have someone else in the car to help since only one of my kids is old enough to drive). I hate that shampoo and water runs down my face and into my eyes and mouth because I can’t extend my neck back. My hands go numb when I'm doing anything with my arms extended (using a hairdryer, driving, working on a computer). I still have bad headaches, and depression (now on 2 antidepressants!), difficulty swallowing and my voice is very weak. It is difficult to talk for any length of time. I still need head support when sitting for a long length of time and still need pain meds to be able to get some sleep at night. I was totally unprepared to be dead numb from the top of my scar to my jaw line. I don’t feel that I have had any change since the initial improvement after the surgery itself. I hate to listen myself complain because much of these problems are so minor compared to others, but to me they are just nagging reminders of my continuing frustration. I want MY life back.

After I saw my 6 week post op xray, I’m now wondering if I can even hope to have my life back. I am not totally comfortable with the neurosurgeon’s explanation when he said that this is not a problem. It appears to me, at least in the xray, that one of the 4 screws is angled down past the end of the vertebrae and extends into the disc space and into the replacement disc material. The other 3 screws are straight and perpendicular to the vertebral body, so why is one angled down past extends past the end of the vertebrae. Is it trivial to think that I’ll ever have any more range of motion in my neck? Can I be positive that the material in the artificial disc would never cause a problem since I’m not positive that it hasn’t been compromised? I’m having to trust something that I didn’t even consider when I read the protocol.

At first, I was able to do some work from home, but my supervisor required me to take short term disability because I was unable to supervise my one direct report from home. Once on short term disability, I was no longer allowed to work from home at all, but was called frequently at home for help anyway.

One thing that I do know is that short term disability will not last forever. I am now really being pressured to come back to work. My being a short woman with progressive lenses (*OK...they are bifocals) doing computer work is a problem. I don’t have a lot of options when it comes to accommodations. I have had ergonomic assessments at work, but when it comes to being able to see at different ranges…that’s a problem. I can’t have a pair of glasses for every job activity. My eyes are too dry for contacts (I tried) and because of the dry eyes, I'm not a LASIK candidate. It is hard to be constantly looking up to talk to someone, searching for an item on an upper shelf or even sitting on either side of a long conference table. I get so tired just trying to hold my head up. Outside activities like even trying to read music while making eye contact with another player or singer is difficult.

I never thought that these minor things would be such difficult problems to fix. I used to be such an active person. I did years of martial arts with my kids, I ran, I played in orchestras, I taught community first aid and CPR classes, I drove to all the kids activities and school events…all these things that made my life are affected by this. My family deserves much more than I am able to give right now. I’m afraid that I’ll never be normal again. Wow….I really am frustrated….and I apologize for complaining but would really appreciate some suggestions if you have any….(just don’t tell me to chop my head off!) Thanks for listening.

[Grumpy]

It's all about the money. They would have kept shooting you up till you said no-especially at $1300+ a pop.

They really should have done a 3 level on you. I got the same run around...first they said they would only fuse one. Then 4 days before surgery the second one blew so then they had to fix both. Then one month after surgery the 3rd one blew, which then I had to wait a year in EXCRUCIATING PAIN. No one knows the pain we go thru with blown discs in the neck. It stops all functioning. PT woun't be able to do a thing since you have pinched nerves. What were they thinking? If I was you, I would seek out and OSS-orthopedic spine specialist. Then after you've seen them, go visit another preferably in another state. Make sure the MRI's you had taken were the finest quality-HMO's love to go cheap on MRI's and do as few slices as possible.

You will get NO RELIEF until you either have them fused, or they install some ADR's.End of story. You will only get worse. I personally won't get fused again, and will only go the ADR route.

Good luck!

[Harrison]

Hi Lydia, welcome to our community. Like almost everyone here, you've been through the meatgrinder...so sorry but welcome.

Grumpy makes some interesting points. However, not all people in this community get surgery. In fact, most here -- if not everyone -- tries to avoid it!

There are some glimmers of hope on the horizon for biologics' solutions and even antimicrobial solutions that have helped some people in this global community avoid surgery.

So, that said, what two or three questions can we help you with right now?

PS: Yes, please keep your head. We have a few "Pez" ladies on this forum.

[lac27513]

Hi Harrison,
The biggest issue is that I'm questioning whether the screws were placed properly and whether the material in the artificial disc has been compromised. The op report doesn't say that an xray was done to confirm placement prior to the end of the procedure and I did not see the xray that was done the next morning prior to my discharge. I only saw the 6 wk post op xray and it frightened me. I didn't feel that I was making much progress anyway, so now I'm wondering if something is not right. I am not certain, but the neo disc looks like it's too big, which may be why the screws look too large to me too. I don't know how these things are sized, that is not part of the protocol either, but I'm only 5'2". The one screw that goes through the end of the vertebrae and into the neo disc itself...it doesn't look like it is supposed to be that way, but again,I don't know. I was very limited in the amount of movement my neck will allow in the first place. I still can't turn my head, and I don't see how it will ever heal properly. I know that I signed the consent to participate in the study, so I am totally to blame for my own problems...but I don't know who to talk to about this. How do I get a second opinion on a procedure that is so new? There is no standard procedure besides the protocol. I don't know if I'm fretting unnecessarily, but I'm afraid that I have made a huge mistake that I can't fix and I can only kick myself. Should an xray be done before the surgeon closes? I have not seen any examples of xrays that show one screw out of 4 coming out the bottom of the vertebrae and into the disc. My doc said that it is ok that way, but right now I don't know who or what to believe. Any pointers or knowledge from others with similar experiences on which way to turn? Gosh... I was so hopeful and now I feel like such a whiner! But thanks again for letting me vent.

[Grumpy]

Harrison,
I would agree with you on that surgery isn't always the answer when it comes to lumbar, and maybe the T section (although I really can't say on that since I'm not experiencing it) however, and I speak from experience (plus from knowing many others in the same boat) that when your neck has pinched nerves,or if one or more discs are leaking, it effects you so much more than any other part of the spine that might be compromised with the same problem and is much less tolerable. It's hard to explain, but it's difficult to live without your arms, pain travels to your head and thruout your body. It's like every nerve is close to the surface, being fried and throbbing. I totally understand the pain LAC is in, and I have also been thru the PT route where the PT person, telling me that if I don't move my neck it will fuse on it's own, and as he was pushing on it I blew another disc (that was the 3rd one 1 month after the first surgery). One PT person actually had the NERVE to tell me that I had a LOW THRESHOLD OF PAIN cause I kicked her as she was pushing on my arm while the nerve was being pinched!
Yes, if your neck mri is pretty benign and clearly shows that it's muscular, PT and shots are the answer. But a MRI report simular to LAC's when nerves are pinched, discs encroaching into the thecal sac and possibly leaking all over your spinal column (if confirmed by a discogram) you are getting into the pain zone that PT, heat, shots, just aren't going to do it. My best Pain management doctor I ever had also had a disc problem in his neck...he knew first hand these discs can cause. The problem is, even after surgery there is only a 30-40% chance of being pain free.

As the patient, my doctors did me a HUGE disservice by not doing the 3 at one time, knowing that it was a 3 level from the start, and putting me thru all that pain, and extra 2 surgeries, AND THE COST! I bet by not having them done at once instead of 3 separate surgeries, cost me and my insurance company and extra $135,000 over the 6 years.

[Toebin]

ohh gosh, so much to say and so many ideas....I hope I can post it so that it makes sense.

lac27513,

I totally understand where you are coming from . I too am in a clinical trial and thought I did due diligence in gathering all the information I needed. However it's very difficult to do that when you are ignorant to all the possibilities. Sometimes we just don't know what to ask !! I was randomized for a 2 level fusion C5/6-C6/7 with mixed results too. I'm 14 months post op with minimal fusion still and definitely a Pez Lady...lol

That being said , there are a couple of options for you.

You can always go out and get a second or third opinion on the disk and it's placement. I would try to choose a back surgeon that is familiar with ADR though so they can compare past experiences even if it's with a different type of ADR. Being in a study does not stop you from seeking information outside of the study medical group usually.

You "could" leave the study entirely if you so choose as well. At least on the 25 page consent I signed it was listed as an option. These sorts of studies can never really stop you from seeking outside help or binding you to their medical opinions alone. Just keep in mind however that working with the surgeon most familiar with your device is usually very important. Perhaps there is another surgeon IN the study group you could see for another opinion? Usually participating surgeons are listed on the clinical trial web site.

I can't see the image you posted as it looks like it is on your personal computer and not on a web server, so it's hard to visualize the screw placement you talk about. However, sometimes the manufacturer of the disk has imagery on their site that you can compare too ? Just a thought.

I was in a hard collar for the first 6 months due to non fusion and getting any flexibility back afterwords required a lot of patience and work. And as I am still not fused and at risk for hardware failure they don't really want me pushing things too hard.

The last thing I would say is, that not all pain is surgically "fixable". I am very fortunate that my surgeon and my entire medical team are very concerned for MY well being, beyond what the clinical trial needs. My pain didn't change at ALL post op. And today it remains the same as before I had my fusion. However we are all working very hard to figure out just what IS causing the pain. We've also discovered some odd medical issues I had that need further treatment.

All my neuro symptoms have disappeared but my pain hasn't. And I've learned there can be concomitant issues working side by side with your spinal disease. As an example, I've read that several auto immune pain syndromes can be triggered by the disc issues. Those require medical intervention but not particularly more surgery. A close look at your pain needs to be done so it can be addressed and treated.

And the last thing I would say is.. you are still relatively newly post op. From your history it's been 6 months at the most since your surgery? I've been told it can take up to 18 months for a nerve to heal after it's had trauma. Your nerves and the nerve roots need time to heal still. News that is difficult to hear when you just want to feel better and have your life back. Believe me I KNOW exactly how you feel.

If I can be of any further help feel free to either pm me through the forum or just add to this thread. I'll be happy to help !

ps: I SO understand your issue with your glasses. I wear progressive lenses and have had a difficult time with that issue too. Mainly I wear my glasses now to drive, and then when I need to read.. but in between I take them off as it's just too frustrating to try and find the right spot on the lenses when not being able to move my head well.

[lac27513]

Hi...and thanks for the kind, understanding words. I'm thankful for a means to communicate with others who can understand my frustrations. I will need to do some traveling to find someone else who has experience with this particular device. Part of my frustration in not having a speedy recovery is the pressure I'm getting to return to work. I was so long in the conservative care phase that my company's long term disability provider will be involved too. Looking at the xray and knowing my continuing problems, I'm worried that I have an even longer road before me. The screw placement actually looks like it will prevent much flexibility. The surgeon stressed to me that I shouldn't push my range of motion at all, all of which further increased my anxiety. At any rate, I am interested in the autoimmune issues that are triggered by disc problems and the potential future uses of biologics that Harrison mentioned as well. Sorry if my posts sound like I am freaking out. My frustrations blew a fuse! The suggestions are greatly appreciated!

LAC

[Toebin]

LAC,

I could take your hand right now and walk down that path with you and know exactly what to expect. I too had much angst, frustration, anger , fear and concern when it came to not only my job but my career.

My time frame did not go along with what was allowed by law and the federal family leave act. I was separated from my employer 4 months into this journey I've been on and I currently live on my long term disability and COBRA insurance.

Have you applied for social security disability yet ? Even if you don't need it, it's a good thing to get the paperwork started. And it can always be canceled.

Very real concerns and you have every right to be focused on them. However it's your body that is going to tell you when you can return to work. Even if your doctor was to sign a release today do you "feel" like you could go back and be productive ? That was the stopper for me, I'm a focused individual and loved my job, but I knew I could not go back and work, be productive with the sort of pain I am in.

And it's no ones fault, it's just my back/neck issues. Unfortunately.

You said your employer was allowing you to do some work from home. Is there any way for that agreement to be official and extended ?

[lac27513]

The long term disability provider told me today that they will require me to also apply for social security disability. Unfortunately I can't work from either,once short term disability started, that was the end of that. So I guess it's time to swallow my pride...I've 4 kids to think about. I just never ever thought that all this would have happened. It's always been hard for me to accept help. I've seen your signature and so many others and I wonder how do you cope with not just the physical, but also the personal, emotional and financial stress?

I can see this forum is helpful in sharing information and help in many ways. Thank you for you insight.

LAC

[Toebin]

It's pretty standard stuff for a long term disability carrier to do that. And just be grateful that you have the LTD, it's been a godsend for me and the hubby.

You'll find that most everyone here on the boards has a story and has traveled down a treacherous path to get to where they are today. But I like to think we are all pretty good at supporting each other as we move forward.

I just wish I had better news to give you. I know how difficult this all is. The important thing is to keep trying to drill down to get to the reason for your pain and get the best possible medical care you can. AND to stay as positive as you are able. There are also a lot of very successful cases here and that alone gives me strength to fight the good fight !!

Also Harrison and the rest are really good about keeping the library full of new technologies that are out there in respect to spinal care. It's amazing what is going on in this field.

Knowledge is Power, and we have the power to help make ourselves better.

We WILL get better, it just might take a little longer than the average person