Scheduled for C5/6 ADR with a Prodisc-C--questions about that type of implant

[annapurna]

I believe that your opinion isn't supported by facts. I did ask that you give me a little time to put together a better answer for you

[Fathub]

Originally Posted by annapurna

I believe that your opinion isn't supported by facts. I did ask that you give me a little time to put together a better answer for you

Anna........I would respectfully say YOUR opinion (at this point - which is what I said in the last post) ISN'T supported by facts.
I'm a man.....I run on logic and at this point I don't see anything to support your claims......now, if you got irrefutable evidence....I'm all ears but I'n not believing at this point in Stem Cell treatments.
I'll be patient and wait.

[Harrison]

I'll just weigh in with the "fact" that there are many different kinds of stem cell treatments; many variant techniques; and many conditions treated.

I had stem cell treatment using my own blood at IBC in Tijuana. I've spoken with dozens of patients through the years who have seen successes. AnnaPurna's comment is accurate and is also based on years of personal experience with stem cell treatments.

Facts can certainly exist without government studies. Hell, I would be dead now if I depended on doctors and their fortresses of medical data to tell me what is safe and what is not safe!

My story: http://www.whyamistillsick.com/story/

[Fathub]

Harrison,
Understood as after phone interviewing a ton of Bertagnoli's (and Ritter-Lang's) patients, I made a decision based on verbal interviews alone.
That being said, with the length of time that SC injections have been done......I'm really insisting on a scientific studies as the BS out there right now on snake oil solutions is at an all time high....
But I'll be patient and wait for anyone to show me.....

[JinSong]

Originally Posted by pbrav

JinSong, I am so sorry to read about your frustration and pain! I have been following your story with interest, and I have been impressed by the systematic way you have gone about looking for the best alternatives. I am so sorry you were not in a situation where you could choose the treatment you prefered. I guess this is not much comfort right now, but as a fellow academic I can assure you that you are not going to be a phd-student for ever - and your economic situation is going to give you much more freedom in the future. If you, as a worse case scenario, get problems with adjacent levels further down the road, you will most probably be able to choose the treatment you prefer - and you will be able to stop the deterioration with an adr of your own choice. I gather from your previous posts that you are a very resourceful person, and I am sure you will get out of this even stronger. I really hope your recovery will be less unpleasant soon, and I wish you all good luck.

Thanks for the kind words (and for following my story). I really was trying to do the best I could for my situation, which is part of why I'm so upset/frustrated by the way it ended. Recovery is still going very poorly, and I'm having problems getting enough pain medication to keep me comfortable--it's just constantly chasing the pain, worrying about running out of medication, and worrying about not being able to get refills. I'm also not at home because I did the surgery out of town, so I'm not really in a comfortable spot either. I'm really wishing I'd never gone through with this, but it didn't seen like I had much of a choice.

As for the future, I'm rather on your side with the experimental nature of all the stem cell injections and whatnot--not something I'd want to try without more evidence (and my insurance won't cover it anyway, which was half the problem in the first place). Now I'm mainly depressed because I feel like I've permanently ruined my neck. Even if I can get an ADR at the other levels in the future, all the studies I've read about hybrid procedures are bad. Correct me if anyone's seen more favorable outcomes because I wasn't specifically looking for hybrid procedure studies before, but it looks like doing a hybrid ADR/fusion is even worse than just doing the stupid fusion itself

[Cynlite]

I'm so sorry you fell after your surgery! I think you deserve one of these huge get well cards. I sure hope your story gets better and that you feel better soon. From another desert dweller. Hang in there.

[JinSong]

Thank you! It's been really tough--getting out and walking around a little bit was kind of the "highlight" of my day, and it really sucked after I fell down the stairs and messed up my ankle. I don't have any help at home, and I didn't get any formal time off work, so that really made everything extra difficult for me. The ankle's not broken, but the sprain damaged the ligaments enough that I need to be in the walking cast until it heals and the inflammation goes down. Sucks even more because I did the ACDF I'm not allowed to take any NSAIDs, which would really help with my ankle.

I had a great neurosurgeon, but they're two hours north of me, and I've had issues getting consistent pain medication post-op (the falling down the stairs bit didn't help). I mentioned it a bit above, but the hospital I was at was a total train wreck--I'm still traumatized from that whole experience. And I'm still pretty upset that I'm fused too, but there's nothing I can do about that now. At least I can feel my hands again.

[Cynlite]

I was just reviewing your posts again. I sure hope you are feeling a little bit better now. Your story is very similar to what I have experienced here. I know others in our state that have also struggled with getting decent care. I think our options are not the best in the country here and that includes The Barrow Institute which was just a big frustrating experience for me. I waited three months to get an appointment only to find that the office misinformed me on the surgeon using Mobi-C's. I vented all of this in my threads last year. My insurance won't let me go out of county so, unless I can change that in the future, I'm pretty limited in my care.

I reached out to many neurosurgeons in the U.S. and Europe last year. I never did get a consensus.

Down the road, you could look into getting ADR's next to your fusion provided your facet joints are not in too bad a shape. I know several people online who have had a fusion replaced with an ADR. When the body does not fuse properly, the surgeons can replace it. Theoretically, if you get an ADR next to a fusion, it will stop the degeneration of the adjacent discs so I've read.

I was just asking a patient yesterday if Dr. Clavel in Spain could replace a solid fusion. I thought it could not be done (and perhaps it can't) but, he seemed to think it could be done and he's over in Spain right now. If I can proceed with my surgery plans in Europe, I'll be sure to talk to Dr. Clavel about this because one of my levels autofused already and I'm pretty sure it's solid. It's a long shot I know.

I sure hope that you are feeling better and that you will have better options in your future. I know how hard it is to live with these problems and pain. Many others here do as well. Hang in there and don't give up.

[JinSong]

Oh yes, I'm at Barrows as well, and I LOVE my surgeon (Dr. Fusco), but I have had frustrations with their system, and the hospital I ended up at was an absolute nightmare (my surgery was done at Chandler instead of the main hospital downtown). I'm surprised your surgeon there didn't do Mobi-Cs! That's specifically why I went up there, and as you saw, I lost my case for it, but because of the retrolisthesis issue, the Barrows surgeon actually wanted to do the ACDF anyway. I think he was a better surgeon than my other option, so I went with him anyway. Did you actually do your surgery at Barrow?

This is kind of an update of this week:

I was having a horrible time getting pain management, and physical and emotional support, and there have been *some* improvements in some of those areas. Some people have helped me out more, while others have been outright abusive, but soon I should have more independence and be less at the mercy of other people's ability to help me out.

I survived my 7-week follow-up appointment today. Turns out the reason I'm in so much more pain is because the spacer (PEEK cage) in my fusion is oversized. The disc had been extruded so long that there was a ton of arthritis in the space, so the smaller cage was too loose, so he used a bigger cage that stretched the area much more. Now that one disc space is a lot taller than the others in my spine, which is aggravating everything.

Thankfully, he wants me to go to the spine group's PM doctor to do facet injections to bring down the inflammation and hopefully break the pain cycle. Before he told me to cancel that appointment (because he wanted to manage my case for at least three months), so I'm glad I kept it! I asked him where he thinks about my scapula pain and my continuing right arm pain are coming from, and he didn't really have an answer other than it could be just from spinal cord damage, or it could be from somewhere else. So PM might end up doing more epidural injections too.

And I told my NS about how I was having issues with pain control, and not getting meds refilled, and asked if we could just make a plan for when and how he'd want me to taper, and if he could give me a bigger prescription that more closely matched that. So he gave me bigger scripts this time at least so I don't have to play beg for medications every five days (they kept promising to mail me refills that would never come). Ironically, I get home, and a week and half later the other prescriptions they'd promised me were also in the mail!

I was upset because on my post-op xrays, I'm definitely not fusing yet, which he was concerned about, but not *freaking out about* I have a vitamin D deficiency, so I'm supposed to increase my dose of that and re-recheck xrays in three months. Like a lot of us, my neck lost its natural curve from muscle spasms, so he was like hey! The fusion gave you back some natural curvature...in one spot at least o_O So that's...good?

Despite that, he's still going to let me start weaning out of the collar over the next two weeks, as long as I'm careful, so I'm happy for that. No more sleeping in this thing!!!!

I'm a little scared for more neck injections, but happy that there's a reason for my continued pain, it's been validated, I got more medication, and there's a plan for how to move forward from here other than just *sit around and suffer*

So, I don't know what I'll do if I don't fuse, but it is good to know that it *might* be possible to replace it with an ADR, if I had to/need to. It's hard not to be worried about ASD given my ongoing issues and the other discs that are already bad, but what's done is done. I'm just happy there's a plan to manage my pain for the moment, and more independence is coming soon--boot should be coming off my leg in the next week or two, neck brace is being weaned off, and once I fix my car I'll be able to drive and be less reliant on others to help me. I'm still in a lot of pain, but just knowing things are going to be done about it makes me feel better mentally.

Thank you so much for checking in with me--I don't know what I would do without online support forums like this one. This stuff literally steals your life, and it's so hard to explain/share with people that haven't lived through it.

[JinSong]

Hey folks, it's meeee again. Not sure if replying to my old, original thread is the best place to put this, but I thought I'd start here. So much has changed since I first posted here...getting close to a full year ago. Wow.

Welp, I lost my appeals for an ADR last spring and had a C5/6 ACDF back in March. Since then, life has been AWFUL. Nothing has improved. I've got migraines, constant spasms, my old symptoms never resolved, and now I've got all those new issues. I'm seeing neurologists, doing physical therapy, on every drug known to man, and I've had every injection procedure out there (a bit of hyperbole, but seriously, I'm getting to the point where I've exhausted my options).

Meanwhile, I've got my own neurosurgeon telling me my pain has nothing to do with the ACDF surgery, and everything looks fine, other than my oversized graft and incomplete fusion. Yeah. Right. These problems just "magically" appeared after I had major surgery and never resolved. No connection at all.

I've been so depressed from the constant pain and the total disruption of my life and finances that this has caused, I've seriously been considering suicide, and I even "practiced" a few times. I've been ready to just say goodbye to this all.

Then a friend of mine poked at me and said that I needed to start talking to other surgeons for opinions since you know, surgeons have something of a biased opinion of their own work. As you can see from my signature probably, besides C5/6 which is currently fused (well not really--the graft's not taking), I've got other herniations in there. I need to update my signature because I'm the ripe old age of 33 now, ha.

Anyway, someone told me to send my imaging and history to Dr. Kenneth Light in San Francisco to see what he had to say about my case, since he's one of the people in the country that specializes in revising fusions to ADRs. I can't afford to go to Europe, but I live in Arizona, and I have friends in San Francisco, so doing surgery there wouldn't be impossible...and miraculously he's on my insurance plan.

So he tells me to send in my materials and he offered to review them for free, which I thought was quite generous. I figured he'd get back to me and say sorry Charlie, everything looks structrually fine (as my surgeon keeps saying). Not so much. He says at this point, 8 months post-op, the amount of fusion I've got in my graft is minimal, and probably contributing to all my pain. As well, there's a high risk of a non-union (aka failed fusion). My surgeon keeps claiming I'm fine, but he's actually been using the post-laminectomy syndrome/failed fusion CPT diagnosis codes on my paperwork. I know you can't technically call it failed until you're a year post-op, but in any event, things aren't looking promising there. In addition, he thinks my C4/5 now looks bad enough to be contributing to my pain as well. I thought I'd get like...I don't know a few years out of this stupid fusion before succumbing to ASD, but I guess not. I freaked out for a second, because the prospect of a 2-level fusion and a revision surgery, meaning two big surgeries within the same year was terrifying.

Then he says to me he'd revise my 1-level fusion into a 2-level ADR. THAT'S WHAT I WANTED IN THE FIRST PLACE. I know I need to get my expectations in check because there are so many variables here to consider, insurance and financing not being the least of my concerns. But literally nearly gun in my hand (not an actual gun...but things to end my life) were laid out on my counter when I got that message. Just the idea that I might have hope of SOME improvement in the hell I've been living in for the last 8 months--probably only those of you on here who have lived through the same pain and feelings can understand.

And now I have questions. Can you help me? Has anyone here had surgery with Dr. Light? I know there's a separate revision forum, but I haven't actually had the revision surgery, so I wasn't sure if I should post in there. Are there other U.S. based revision specialists I should be looking at before diving in with Dr. Light?

ANY insight would be so deeply appreciated.