One year Hell ADR in Germany (L4/5).Revision to fusion.

[Job13]

RIP Freedom of Speech

[Job13]

RIP Freedom of Speech

[Job13]

RIP Freedom of Speech

[Job13]

RIP Freedom of Speech

[Job13]

RIP Freedom of Speech

[dshobbies]

Wow Job13 and welcome to the forum.

I'm very relieved that you're finally experienceing some relief from your unrelenting and severe pain. It hurt just reading your story. I'm equally surprised at Dr. B and his staff, who did a great job for me. I don't even know how to comment.

I can only wish you better days, which seems to be the direction in which you're going. Also, while Neurontin may have it's side effects, it does a great job with nerve pain. I took it, 2700 mg daily, (Lyrica) for two years and others... for life.

You have my best wishes for a continued recovery for your ordeal. Please continue to keep us posted.

Dale

[B13s]

Welcome Job13, good to hear that you are getting better!
It would be also interesting to know which hospital/doctor did the last operation (the one that helped) ?

[Maria]

I do hope this post finds you doing better even if minimally so. If you're not doing better than that's ok to talk about too. I have so many ins and outs with low back pain and now cervial pain that I feel I'm on a roller coaster sometimes and the bed is of course my safe haven (uggh).

Anyway, know that I'm wishing you both the best in health and all around. Want to say Happy Holidays tho I remember when my spine was really bad post op and I found it difficult to feel this way. Not sure where you're at Job13 in terms of how you're doing so again, wishing you my best at this time~

[ans]

I'm glad that finally there seems to be a light at the end of this long tunnel. I hope your progress proceeds; you've been through hell.

Btw, who was your surgeon if I may ask? He/she sounds good.

Happy New Year ~ ans

[Jim M2]

Job13,

Thank you for the excellent information about your ADR and revision. There is very little experience in this area. I'm not aware of anyone else posting their revision experience on the forums except for you and Blairsara.

I've never heard the root cause of post-ADR facet pain attributed to hyperextension and hyperlordosis in the way you describe it. It makes good sense and it seems to fit my situation. In fact I experience most all of the painful symptoms you mentioned in Post #2. I questioned three US ADR surgeons about how alarmingly tall my L5S1 Charite seemed compared to the other levels. They didn't think there was anything remarkable about it. One even described it as a restored natural disk space just as you were told.

One big difference was how I was treated by Dr. Zeegers who performed the L5S1 ADR surgery in 2003. He was very concerned about my post-op pain levels. I wrote to him in the months following surgery. He always responded. Then I saw Dr. Z at a GPN patient seminar and bar-b-que at Mark's 13 months after surgery. He asked me to have a new CT/Myelo and send him updated x-rays. Later he emailed to ask some specific questions about my symptoms. After reviewing the diagnostics he emailed me a report of his findings and next steps I should consider. As with the US ADR surgeons he never mentioned hyperextension and associated phenonema as a possible root cause of facet pain. All of these doctors were looking for problems at L45, or stenosis, or they were expecting the facets to eventually calm down.

Now I'm 4 years+ post-adr with some improvement over the first couple of years. I have pain much like you described (but at a lower level) or gnawing discomfort all the time. I don't do much anymore. At this time I have no enthusiasm for investigating further. I see nothing out there that's worth the risk of invasion.

I get a kick out of your avatar--a screaming cat with automatic weapon blazing and a mushroom cloud in the background. If you're expressing frustration, it works.

I hope your recovery continues to go well. Please let us know the doctors and hospitals you're dealing with for your facet diagnosis and revision.

Jim

1981 L5S1 diskectomy
2003 L5S1 Charite

[Job13]

RIP Freedom of Speech

[mmglobal]

Dear Anastasia and Matt.... I'm glad to hear that you continue to make progress. It sounds like it's been tough, but still getting better and better. To me, seeing things like "able to sit through a 20 minute dinner" brings tears to my eyes... As little as that sounds, for someone who could not do that for so long... it's huge!

Keep it up... I hope to hear of more and more improvement. Sorry I missed you last month... maybe next time.

All the best,

Mark

[fuzzy]

I really hope that you continue to improve and like many of us you know too well that patience is key. You have the disadvantage that due to your long down time you are out of fitness and need to train a lot harder then some of us. But it can be done, keep working on it and you will get just a teeny bit better every day.

[Job13]

RIP Freedom of Speech

[ellecincos1]

I'm so sorry to hear about your devastating circumstance, you are very young you still have a life ahead of you to recover it may take many, many more months or years but you can do it one step at a time don't ever give up!
When your able, try water therapy it could help you.
Regards,
Myriam

[dshobbies]

Job13,

I'm sure everything you've said is very valid but not all share your experience. I found Dr. B great and Dr. Reagan uncaring and insensitive. Though I will have nerve problems for the rest of my life which I partially blame on Dr. Reagan, I'm grateful to Dr. B for giving me my life back.

I understand that you had much the reverse and I'm sorry you had to go through all you did but am glad that you're finally on the mend. Hopefully this path will lead you to pain free days and that you will have no further problems.

Dale

[fuzzy]

Thank you for sharing the continuation of your story. I am glad to hear you are on the road to recovery and I am 100% sure you will make steady improvement. Those stationary bikes are good exercise.

It seems you indicate Dr. Regan did your revision. If so this is very good news for those of us who think we need to go to the more experienced surgeons of Europe to have these treatments but it sounds like you got on an airplane to come to US to have this revision, a much more complicated procedure then a single level ADR? That flight must have been a torture trip! Are you now back in Europe or still in the US?

[KL Aguilar]

Dear Anastasia,

I am so very happy to read that you continue to improve. I have not revealed before that we met as I was afraid that doing so would reveal to others where your revision surgeon was located and thus possibly his identity. However, now that you are sharing more details, let me say that it was a great honor to meet you in person. Your story led me to ask all the right questions about my facets and helped me decide my surgical path. You are often in my thoughts and I wish you the very best.

[mmglobal]

Dear Anastasia and Matt,

I'm so glad to hear the Anastasia is improving and life is getting somewhat better. I understand the frustration that it will never be what it was, but for so many in such dire situations, any improvement is a godsend. I hope to hear the A's recovery continues and that the years to come bring something close to a normal life with normal activities.

I smiled when I read Dale's "Regan's a jerk... Bertagnoli was great" post. (my words, not hers.) It shows something that I discovered a long time ago... ALL of these guys have many patients who think they walk on water... and many patients who think they are evil incarnate. I've seen it many times... after failed surgery, there is often a falling out with the doctor.

Regarding your treatment on the other board.... you'll find that moderating an internet forum can be very touchy at times. There is a fine line that must be walked. We all hope that we can come to places like these and get useful information that will help us to make an informed decision about our treatment. I encourage failed patients to come and tell their story, so people can more certainly understand that spine surgery is still not an exact science. Even in the best of circumstances, we'll see a few disasters like yours. That is the risk we take when we consent to do surgery.

So please... continue to share your story here. I hope that the improving trend continues. While we've met in person a few times, I've only seen the 'in pain' Anastasia... I would love to get to know the relaxed, happy, vivacious Anastasia that Matt knows from years ago.

All the best,

Mark

[Maria]

Hi Anastasia,
I'm so happy to read that you continue to improve even if it's a slow path to recovery.

I saw Dr.Regan as a consult and found him to be very nice. He wasn't getting an insurance reimbursement to see me and was much nicer than many a consultation I had that WC paid pretty decently for.

Anyway, just glad what he did worked for you. I've been down the road of great surgeon, horrific failed result and all the stuff that came afterwards even being told I was "doctor hopping" because I was looking for answers/help back then...

Glad to know that you found the surgeon that worked out best to do a revision for you and thank you for sharing an update here with us. Keeping it real. Thanks~ and continued wishes re healing

[KL Aguilar]

I too saw Dr. Regan for a consultation, to determine if I was a candidate for a study he was doing. It turned out that I wasn't and yet he spent quite a lot of time with me, and even saw me for a long follow-up visit (and didn't charge me) to help me determine possible next steps.

[sahuaro]

Anastasia:
It is wonderful to learn that you are progressing and regaining some life. You have all of my wishes for continued progress. Thank you for posting in such detail.
I entrusted Dr. Regan with my surgery as well and have a great deal of respect for him.
I too would be interested to know if you are back in the US or Europe.

Barbara

[ans]

Dear A,

I'm glad that you are on the mend (wow, riding a bike twice/day) and might have a life (not sports-optimal) after being confined to bed for too long. You have a heartfelt, unfortunate, and compelling story that must be told.

Heal well, Allan

[fortitudine]

Dear Anastasia,
It is wonderful to read your post and realize how far you have come. No doubt things will continue to improve for months still to come.

Your story and others where there are dreadful and excellent outcomes with the same surgery and the same surgeons only prove what any doctor worth their salt will tell us, that surgery is as much art as it is science. It is too bad that we live in such a litigious society, where doctors are afraid to acknowledge any actions that might be construed as errors or wrongdoing, and thus close the door to helping the patient find a solution.

In your case, you have undergone incredible financial hardship as well, making things even more stressful. I hope that part of your life will also recover, and that we will hear good things from you as the year progresses.

[Job13]

RIP Freedom of Speech

[fuzzy]

Hello Anasthasia, you are a warrior. I like yur travel arrangement. Good to know it can be done that way.

Thanks for the thoughtful update. I read every word of it.

I am a german native and travel there all the time and those doctors will see me again, sooner then later. When I had my surgery last november I stayed there 6 weeks, not 2. I own a condo there. Doctor Z can not get away from me. I also have doctors amoungst my german relatives.. so I am in a similar situation as you.

My back has healed up great but I still have lots of neurolgical trouble with my feet that obviously are coming from my neck. I was the dr.s in Germany who discoverd this and told me this would likely persist after the lumbar surgery and my neck would be next. It looks like they were so right. Here in US they throw pills at me and tell me its in my brain. Insurance takes the right to tell I don't need another neuro workup etc etc.... So I still feel really good about the germans and their no nonsense approach to solving the problem. We as patients ofcause need to be caveat emptor and understand our situation better then the doctors and know the risks and deal with them. Not an easy task.

[Michelle]

Anastasia,
So glad to hear from you-I've often wondered about you!!! Didn't know why I hadn't seen your posts lately. So sorry to hear of your hell. Wow, it sounds awful! I feel bad about being one of the pro-surgery people, even before your surgery! I'm so glad you had the support of your hubby, who was looking for answers often before and after your surgery! Anyway, I'm so sorry for the way you were treated, and how it turned out. I wish your story could've been an easier journey, and understand your anger. I wish I could've helped! I hope for the best for you!! Keep us informed!

[Gktm300]

I'm not sure but I'm pretty sure she had a bad disc which was not her problem and a cracked sacrum. Bertagnoli told her the disc replacement probably wouldn't lessen her pain! She said to him I'm sure a dr as handsome as you will succeed. While the surgery was warranted it was unlikely to resolve her complaint. Thanks the story I was told. Also she isn't poor her dad owns a company. She went in to say she was in no pain before but was after. That sounds fishy right there. Who would go get Adr if they weren't in pain? Long story just wanted to post this as it was a fly in the ointment for me while deciding on Bertagnoli. I inky found two people complain about him and that's it out of over 10000