ADRSupport Community  

Go Back   ADRSupport Community > General Discussion > New Member Introductions

New Member Introductions If you just joined, please introduce yourself here. Please add a signature describing your spinal history (use the "User CP) and ask us how we can help you get started.


Reply
 
Thread Tools
  #1  
Old 06-25-2016, 02:35 PM
nasakido's Avatar
nasakido nasakido is offline
Senior Member
 
Join Date: Jun 2016
Posts: 124
Default 2-Level ADR Patient

Hey Everyone,

I am so glad I found this support forum. It truly was the deciding factor as to what surgeons I would begin seeking out in the, hopefully, last stages of my journey.

I will not go into all the details here about my injury and this long journey my family has been through because of my injury. But for those that may be curious, you can read/follow my blog. I hope this is okay to point to this because it really is a long story that I do not like repeating over and over; and this is just easier for me to do so I do not have to be on the internet very long. It is getting harder to do so every day because I am flat on my back over twenty-one hours now.

I have already had a skype session with Dr. Willem Zeegers on 19-June-2016, and contacted Dr. Pablo Clavel, Dr. Bertagnoli, Dr. Bierstedt, Dr. Karsten Ritter-Lang, Wooridul Spine Center, Texas Back Institute, Dr. Carl Lauryssen, and Spine Institute of San Diego. As well as have been continuing to work with my current orthopedic surgeon Dr. Glenn O'Sullivan at Jefferson Spine Care, and also Dr. Sigurd Berven at UCSF Spine Center.

As of 23-June-2016 I had all the information into Dr. Zeegers but have not paid/started the diagnosis yet, quoted at $1,100 USD, and do not know how much he will quote for a 2-Level ADR. I am still waiting on a response back from Dr. Clavel but the initial quote was $32,000 Euros. Dr. Bierstedt quoted me $32,500 Euros for a 2-Level ADR using the M6 at both levels. The Texas Back Institute quoted me $56,000 USD for a 2-Level ADR using the Activ-L (I do not want the Prodisc-L), and assistance through their lawyers to try and get insurance (BlueCross BlueShield) to pay for it or at least partial. And Dr. O'Sullivan quoted me $8,000 USD for his fee, $31,000 USD for the hospital portion, and then there would also be the anesthesia fee and possibly a surgeon's assistance fee as well. If I went through my current orthopedic surgeon we would be using the Activ-L as well. And of course if I go with a Hybrid, fusion at L5-S1 and Activ-L at L4-L5 it is a couple thousand dollars cheaper here in the states.

However, after much research and careful thought my family has narrowed our top choices down to Zeegers, and Clavel from over sees; and the Texas Back Institute as well as my current orthopedic surgeon O'Sullivan from the states. This could change. But this is where we are at right now at least and have a peace about things.

At the moment now I am waiting for my second court hearing to take place on 28-June-2016 which will hopefully be completely settled so I can get out from under Worker's Compensation and get the proper care I need. I cannot stand this broken system of very sub-par care they provide. Because they have stalled my care since August of 2015 I ended up losing my job in December. I was frustrated, angry, hurt... but in the end let it all go and I will not be pursuing it as my family holds fast to the sovereignty and providence of God in all things. And we have come to realize that this was probably best for our family; and we will accept what He has allowed to happen and will allow in our future. "Nevertheless, not my will, but Yours, be done."

I really was away from my family a lot with the position I had in the phone company... call outs all the time, and many nights where I could not come home at all until the next evening. Since my injury I have been able to see my children grow and mature... something I missed out on before. And my relationship with my spouse has become so much better. She truly is my best friend, and these past thirteen years I have felt blessed to have met her, and to be where we are right now in our lives. Yes this injury has been hard. But I have a strong will and very high pain tolerance so I have been able to deal with this fairly well, but not easy. Personally I would rather feel pain anyway so I do not do something I should not be doing, therefore injuring myself even greater because I was masking the pain with too much medication.

There are times I feel as though I am going crazy because of how hard it can be to control my brain and the amount of pain I am in. But there is not much else I can do because through this injury I have developed a severe allergy to NSAID's where I bleed internally, and other problematic symptoms to everything else my doctor has tried. I just have a very week system in being able to take medication... especially everything narcotic. So I am down to 1200mg 3x daily of Gabapentin to take the edge off of the nerve pain, and a small 4-5 oz. glass of red wine every evening just before bed. And lots of heat on my back throughout the day, a little stretching and a short walk to the mailbox daily. You have to keep moving no matter how bad it hurts.

Oh, and I cannot forget that I brew our own tea from leaves to help with my health and pain too. I guess I will list what I have found to be helpful so it may be of help to others.

In a small Muslin Cotton bag I put the following:

1/8 Tsp. Nettle Leaf
1/8 Tsp. Marshmallow Root
1/8 Tsp. Echinacea Purpurea
1/4 Tsp. Oat Straw
1/2 Tsp. Raspberry Leaf
1/2 Tsp. Raw Unprocessed Organic Honey
1/2-1 Tsp. Pure, Unrefined, Cold-Pressed Coconut Oil from Carrington Farms
1 Tsp. Lemon Balm
1/2 Tbsp. Chamomile Flowers
1x Calendula full Flower leaf or about 20-30 flower petals

All of our herbs and leaves we buy from Mountain Rose Herbs. I boil about 40oz. of water and then drape the Muslin Cotton bag over the side of the tea kettle and let steep for 5-10 minutes, pour and serve. After the evaporation of some of the water due to boiling and steeping this makes me a 14oz. cup of tea and my wife and two of our children 8oz. each.

I will post more once we make our final decision on the doctor we will be going with and/or what Dr. Zeegers or Dr. Clavel state in their diagnosis report. Wooridul Spine Center in Korea seems great, and there are excellent testimonials online. However, unless I know what surgeon will be operating on me, and unless I can view his success rate and credentials, I do not feel comfortable or confident in choosing something I know very little about. To be fair though, Wooridul has been very helpful and we have been corresponding back and forth quite a bit... so I give them credit for that.

I will begin the diagnosis once we know how our settlement goes, and we know for certain how much we have to work with for my surgery.

Again, I am glad I found this forum, and I hope what I have said can be of comfort and help to others. If anything, be encouraged and never give up hope.

"Coram Deo"
__________________
Injury 31-7-14
MRI w/o con. 30-8-14
RT L5-S1 Discectomy w/ RT S1 Foraminotomy 21-11-14
PT (50) 20-8-14 to 04-24-15
MRI w/ con 13-4-15
XR Pelvis 08-6-15
COR INJ 02-7-15
MRI 14-11-15
Discography w/ CT-Scan 19-1-16
QME 16-2-16
XR LL 29-4-16
Bone Density (DEXA) Scan 01-8-16
XR LL 01-8-16
Metal-LTT 12-8-16
MRI 17-8-16
EKG 21-10-16
2-LVL L4-S1 ADR LP-ESP 08-11-16
XR LL 24-11-16
A-THX (24) 12-12-16 to 24-02-17
XR LL 31-01-17
XR LL 08-5-17
CT-Scan 07-6-17
Reply With Quote
  #2  
Old 06-25-2016, 03:05 PM
nasakido's Avatar
nasakido nasakido is offline
Senior Member
 
Join Date: Jun 2016
Posts: 124
Default 2-Level Lumbar ADR Patient

I forgot to mention that I am also looking into getting a bone density test done and also metallic allergy blood test done as well. These are two very important tests if you are considering an ADR.
__________________
Injury 31-7-14
MRI w/o con. 30-8-14
RT L5-S1 Discectomy w/ RT S1 Foraminotomy 21-11-14
PT (50) 20-8-14 to 04-24-15
MRI w/ con 13-4-15
XR Pelvis 08-6-15
COR INJ 02-7-15
MRI 14-11-15
Discography w/ CT-Scan 19-1-16
QME 16-2-16
XR LL 29-4-16
Bone Density (DEXA) Scan 01-8-16
XR LL 01-8-16
Metal-LTT 12-8-16
MRI 17-8-16
EKG 21-10-16
2-LVL L4-S1 ADR LP-ESP 08-11-16
XR LL 24-11-16
A-THX (24) 12-12-16 to 24-02-17
XR LL 31-01-17
XR LL 08-5-17
CT-Scan 07-6-17
Reply With Quote
  #3  
Old 06-27-2016, 07:48 AM
Chris4377 Chris4377 is offline
Member
 
Join Date: May 2016
Posts: 50
Default

Dear Nasakido,

I'm very sorry for what happened to you. I just had my ADR on 10-06 and am at home recovering. Mentally it's really hard, physically I thought it would be better, but learned on this forum that it will take more time than I thought it would.

I just want to tell you about my surgeon, who is doing his job with a passion for helping people and not primarily for the cash. I'm still in touch with him over text messages and he even called at 8:15 pm last week. His name is Andreas Schmitz and his own clinic is located in Düsseldorf. He was one of the first in Germany to become a specislist for ADR. For 8 years he was an international trainer for ADR at the Charité in Berlin. I can only recommend this guy and unless you made up your mind already, I can send you the contact details.
__________________
Chronic back pain since 2009.
Tried all sorts of things.
Had ADR on 10th june 2016 with the LP-ESP disc at L5/S1.
Reply With Quote
  #4  
Old 06-27-2016, 05:02 PM
nasakido's Avatar
nasakido nasakido is offline
Senior Member
 
Join Date: Jun 2016
Posts: 124
Default

@Chris4377

Thank you for the information. For now I am going to continue with Dr. Zeegers or Dr. Clavel, and so far Dr. Bertagnoli caught an issue with my L1-L2 that was on my MRI report, but none of the doctors I have seen locally made any mention of that area being an issue. However, the MRI is obvious.

The more doctors I can inquire of the better, so I will gladly receive whatever information you can give me so I can contact the doctor that provided care for you.

My second court hearing is tomorrow with Workers Comp in settling my claim so I can actually get the care I need. But it came as a blow today when I found out that part of the settlement agreement is for me to resign from my current employer. Otherwise I get no settlement and they will continue not treating me. I could complain, but my family did pray for GOD to do whatever is necessary to keep us close to Himself and to trust Him fully. We got what we prayed for...

As my journey continues on I will update this post, unless it needs to be moved elsewhere, so the decisions I make can be of use to others too.

One thing though... never give up hope nor the fight. Mentally it is very hard, and physically it can be exhausting. However, you have to stretch properly, eat healthy, and exercise within the limitations of your body. Just keep moving, and do not lay around too much. Muscle atrophy is not easy to deal with. I know because this is the second time I have had it, and this time around I lost over 20 pounds because of it. I hurt and throb from my lower back to my feet. This is why I need my surgery bad because I am bed ridden right now. But, I am forcing myself to walk everyday even though it is causing severe pain, sleepless nights and my medicine to not work. It beats having muscle atrophy though and having to fight through it.

And my greatest encouragement to you, and to everyone else, is to never stop talking with GOD. Prayer is not just something where you are on your knees or lying prostrate. There is a time for praying in certain postures. But I believe more than anything we need to strive to give GOD our full attention throughout the day. In times of being blessed, in times of having doubt, in times of joy, in times of pain... let your requests be made known to GOD. And from a reformed perspective, as my family is, come before Him out of reverence and fear for He is Holy and our attitude should always reflect this.

Regards,
Nathan
__________________
Injury 31-7-14
MRI w/o con. 30-8-14
RT L5-S1 Discectomy w/ RT S1 Foraminotomy 21-11-14
PT (50) 20-8-14 to 04-24-15
MRI w/ con 13-4-15
XR Pelvis 08-6-15
COR INJ 02-7-15
MRI 14-11-15
Discography w/ CT-Scan 19-1-16
QME 16-2-16
XR LL 29-4-16
Bone Density (DEXA) Scan 01-8-16
XR LL 01-8-16
Metal-LTT 12-8-16
MRI 17-8-16
EKG 21-10-16
2-LVL L4-S1 ADR LP-ESP 08-11-16
XR LL 24-11-16
A-THX (24) 12-12-16 to 24-02-17
XR LL 31-01-17
XR LL 08-5-17
CT-Scan 07-6-17
Reply With Quote
  #5  
Old 06-27-2016, 10:37 PM
Ozphysician's Avatar
Ozphysician Ozphysician is offline
Member
 
Join Date: Apr 2016
Posts: 63
Default

Hey Nathan

I read part of your blog and also your posts on here and from one fellow believer to another I just want to encourage you. The pain and suffering you have been and continue to go through, is a "thousand times" worse than mine, so there is no comparison but I do understand some of what you are dealing with and will pray for you. I also wanted to share the verse.

Isaiah 48:10.....See I have refined you, though not as Silver; I have tested you in the furnace of affliction..... NIV

take care
__________________
Lumbar DDD progressing for the last 15 years
Facet joints with mild arthrosis at L4/L5 and L5/S1
Two ESI's only too afraid to have more [causal link to arachnoiditis]
Otherwise suffered in pain on and off
Recently had stem cell treatment for facets which have improved markedly
Looking at hybrid solution in the coming months
Reply With Quote
  #6  
Old 06-29-2016, 11:55 PM
nasakido's Avatar
nasakido nasakido is offline
Senior Member
 
Join Date: Jun 2016
Posts: 124
Default all things happen for our own good

@Ozphysician

Thank you for your kind words, and I believe prayer is critical as well. But we should only expect an answer in the way that GOD chooses to answer our prayers... for he works all things together for our good.

"Also we know that all things work together for the best unto them that love God, even to them that are called of his purpose (or for His good will and pleasure). For those which he knew before, he also predestined to be made like to the image of his Son, that he might be the firstborn among many brethren. Moreover, whom he predestined, them also he called, and whom he called, them also he justified, and whom he justified, them he also glorified.
What shall we then say to these things? If God be on our side, who can be against us?" -Romans 8:28-31 GNV

However, to the sensation or internal feeling or process of pain I would not say I am worse simply because each person's brain processes pain differently. God has given me a very high pain tolerance. So even though I have three bad discs... my L1-L2 is not as critical or severe as my L4-S1, and I am mostly bedridden, to another they could be in tears with the same issue. So it makes me more sad to see others hurting. I cry more for others than I ever do for my own pain.

But yes, I do believe that strengthening the brethren is very important. We must remain steadfast to Christ, and never give up hope.

Today was some of the best news I have received in almost two years. It is over... Workers Comp settled and they will be cutting me a check in 30 days. And it should cover my surgery, travel, expenses, PT and any long-term rehab necessary.

I may be emotionally drained, exhausted and feel dead because of how beat down I feel... but I can still utter with my lips, 'Praise GOD." Even if this day never came we are still called to live each day CORAM DEO,

Take Care
__________________
Injury 31-7-14
MRI w/o con. 30-8-14
RT L5-S1 Discectomy w/ RT S1 Foraminotomy 21-11-14
PT (50) 20-8-14 to 04-24-15
MRI w/ con 13-4-15
XR Pelvis 08-6-15
COR INJ 02-7-15
MRI 14-11-15
Discography w/ CT-Scan 19-1-16
QME 16-2-16
XR LL 29-4-16
Bone Density (DEXA) Scan 01-8-16
XR LL 01-8-16
Metal-LTT 12-8-16
MRI 17-8-16
EKG 21-10-16
2-LVL L4-S1 ADR LP-ESP 08-11-16
XR LL 24-11-16
A-THX (24) 12-12-16 to 24-02-17
XR LL 31-01-17
XR LL 08-5-17
CT-Scan 07-6-17
Reply With Quote
  #7  
Old 07-01-2016, 09:00 PM
Harrison's Avatar
Harrison Harrison is offline
Administrator
 
Join Date: Oct 2004
Posts: 6,907
Smile

Nasakido, glad you are on your way into the journey. Welcome. And can I buy some of your tea?!

Glad you are doing your homework. Keep going. When you have done enough work, you will know when it's right for you. I, too, believe in the power of prayer. I tend not to discuss it much as I try to maintain a secular tone as the founder. That said, I will pray for you!
__________________
"Harrison" - info (at) adrsupport.org
Fell on my ***winter 2003, Canceled fusion April 6 2004
Reborn June 25th, 2004, L5-S1 ADR Charite in Boston
Founder & moderator of ADRSupport - 2004
Founder Arthroplasty Patient Foundation a 501(c)(3) - 2006
Creator & producer, Why Am I Still Sick? - 2012
Donate www.arthropatient.org/about/donate
Reply With Quote
  #8  
Old 07-02-2016, 02:03 PM
nasakido's Avatar
nasakido nasakido is offline
Senior Member
 
Join Date: Jun 2016
Posts: 124
Default Thank you

@Harrison

Thank you for your prayer. And as things progress I will be back here to update this post. Right now I am still waiting to receive the diagnosis report from all the doctors I gave access to my medical records. I know what both my orthopedic doctors and the doctor from my QME has reported... but I want to see what these foreign doctors have to say.

Tea for sale??? I never thought of that one... LOL.

It is quite good though. With the little time I can be up I love making tea and love making homemade Sandwich bread:

2 1/2 Cups water
3 Cups Great River Organic Milling, Organic Whole Wheat Bread Flour
3 Cups Great River Organic Milling, Organic Specialty Whole Wheat Pastry Flour
1 Tbsp The Spice Lab Finely Ground Pure Himalayan Salt
3 Tbsp Kirkland Signature Organic Sugar
3 Tbsp Authentic Menu Imported Virgin Sunflower Oil
2 1/4 Tsp Fleischmanns Bread Machine Yeast

NOTE: We use the Sunbeam 5891 2-Pound Programmable Breadmaker for kneading only. We do not use the Breadmaker to bake the bread. We do not like the way it tastes nor is it very usable for sandwiches.

Mix all dry ingredients, EXCEPT yeast, in a large bowl then set aside. Slowly heat the water until it reaches 120-125 degrees. Pour immediately into Breadmaker baking pan. Add Sunflower Oil. Then slowly pour the dry ingredients into the Breadmaker baking pan over-top the water and oil. Make sure that the dry ingredients completely cover the water and oil. Add Bread Machine Yeast on-top of the dry ingredients. Close the Breadmaker. Select the kneed only setting (our setting is #8). Push start.

After 5 minutes open the lid and with a spatula make sure that all the ingredients are mixing/kneading well together. Assist the Breadmaker if needed until the dough is in a ball shape. Close the lid. The setting for kneading will take 1 1/2 hours.

When finished move the dough to a USA Pan Bakeware Aluminized Steel 13 x 4 x 4 Inch Pullman Pan and softly spread the dough evenly in the Pullman, pushing down to make sure all air pockets are gone. Wet a thin dish towel with warm/hot water then squeeze excess water out... cover the Pullman and let sit at room temperature for one hour.

Preheat oven to 350 degrees if your oven cooks hot or 370 degrees if it is exact. Remove the dish towel from the Pullman. Very carefully make sure the dough is not covering the top sides of the pan. If it is, then gently press the dough towards the insides, essential shaping the dough into sandwich style that slopes from the center towards all four sides in a curved shape. Then place the Pullman in the center rack in the oven with the lid off. Bake for 50 minutes or until golden brown on top. The darker the harder the crust will be.

Remove the bread from the Pullman and place on a wire rack on the counter so the moisture can evaporate from the loaf, including the bottom, while it cools.

This makes a very delicious healthy sandwich bread that has a perfect golden brown crust where the bread is soft yet thicker than most store bought bread.

Enjoy!
__________________
Injury 31-7-14
MRI w/o con. 30-8-14
RT L5-S1 Discectomy w/ RT S1 Foraminotomy 21-11-14
PT (50) 20-8-14 to 04-24-15
MRI w/ con 13-4-15
XR Pelvis 08-6-15
COR INJ 02-7-15
MRI 14-11-15
Discography w/ CT-Scan 19-1-16
QME 16-2-16
XR LL 29-4-16
Bone Density (DEXA) Scan 01-8-16
XR LL 01-8-16
Metal-LTT 12-8-16
MRI 17-8-16
EKG 21-10-16
2-LVL L4-S1 ADR LP-ESP 08-11-16
XR LL 24-11-16
A-THX (24) 12-12-16 to 24-02-17
XR LL 31-01-17
XR LL 08-5-17
CT-Scan 07-6-17
Reply With Quote
  #9  
Old 07-27-2016, 04:16 PM
nasakido's Avatar
nasakido nasakido is offline
Senior Member
 
Join Date: Jun 2016
Posts: 124
Default Diagnosis Consensus

Well, I have received a full diagnosis report from Dr. Ritter-Lang and Dr. Bierstedt and their synopsis is to replace my L4-L5 and L5-S1 with the M6-L. Out of the two Dr. Ritter-Lang wrote a pretty lengthy report of which I will quote a small portion here:

"L4-S1: surgical solution including removal of disc material, revision of the spinal canal and implantation of M6L-artificial disc... periradicular injection therapy L4/5 and L5/S1 on both sides will be performed to verify if a revision of the spinal canal from posterior is necessary, too. Should the decompression be required, we will do the anterior approach for the implantation of the ADR and the posterior approach for decompression in one operative session."

Dr. Bierstedt did not go into great depth, but he also wants to replace both discs with the M6-L:

"total discectomy by anterior surgical approach and disc replacement at L4/5 and L5/S1... M6-L, Spinal Kinetics."

I did not receive a full report from Dr. Clavel yet because he wants to wait for my newer tests to be done. However, here is what he says so far:

"I agree he needs surgery for L4-L5 and L5-S1 discs. But at L5-S1 I probably favour an ALIF. It is a somewhat small disc, with small facets. The left L5-S1
facet looks almost fused on the CT scan. I believe this level is too risky for an artificial disc. My preference is an anterior fusion at L5-S1 and artificial disc at
L4-L5 with the same clinical result ( very good )."

Also, Clavels assessment agrees with my two orthopedic surgeons here in the states, i.e. a Hybrid Fusion. So at least I am seeing some sort of consensus here between my surgeons and Clavel. This gives me more confidence than replacing both with the M6-L.

Dr. Bertagnoli is still reviewing my case, and I should here back from him soon.

And finally, I wait the 3 weeks for Dr. Zeegers diagnosis, as I paid him on the 22nd via wire transfer, and made sure he had all my current medical records to date.

I am not sure if much will change as far as any diagnosis goes once my new MRI, four view x-ray, and bone density scan are complete. One thing is for sure though... it most likely will show me getting worse since my last MRI six months ago. My pain and spasms are increasing every day. Today's episode knocked me off balance into my wife's arms... which is not a bad thing at all because that's where I want to be anyway. All I could do was laugh the pain away.

Most of this info can be found on my blog where I recently added a new post as of last night:

http://www.impctech.com/2016/07/this...1-sink-or.html

Coram Deo
__________________
Injury 31-7-14
MRI w/o con. 30-8-14
RT L5-S1 Discectomy w/ RT S1 Foraminotomy 21-11-14
PT (50) 20-8-14 to 04-24-15
MRI w/ con 13-4-15
XR Pelvis 08-6-15
COR INJ 02-7-15
MRI 14-11-15
Discography w/ CT-Scan 19-1-16
QME 16-2-16
XR LL 29-4-16
Bone Density (DEXA) Scan 01-8-16
XR LL 01-8-16
Metal-LTT 12-8-16
MRI 17-8-16
EKG 21-10-16
2-LVL L4-S1 ADR LP-ESP 08-11-16
XR LL 24-11-16
A-THX (24) 12-12-16 to 24-02-17
XR LL 31-01-17
XR LL 08-5-17
CT-Scan 07-6-17
Reply With Quote
  #10  
Old 07-28-2016, 09:13 AM
Romakis's Avatar
Romakis Romakis is offline
Senior Member
 
Join Date: Jan 2015
Posts: 197
Default Good news

I think this is good news. You have enough info to make an educated decision. I wouldn't wait too long if auto-fusion is looming.
__________________
46yo, DDD of L4-S1. Microdiscectomy L5-L4 in 2014. L4-L5-S1 M6 ADR with Dr. Clavel - June 2015.
Reply With Quote
Reply

Bookmarks

Tags
adr, clavel, surgery, wooridul, zeegers

Thread Tools

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Need help and advice....UK patient camus New Member Introductions 1 10-25-2012 03:36 PM


All times are GMT -4. The time now is 07:47 AM.


© Copyright 2006-2017 ADRSupport.org All rights reserved.