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Surgical Outcomes and Blogs Discuss L4-5 & L5-S1 Chartie Stenum - kc0iet in the Main forums forums; Please note that this was originally posted in 2004. I am restarting this thread, and trying to update it as ...

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Old 03-27-2009, 02:01 AM
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Default L4-5 & L5-S1 Chartie Stenum - kc0iet

Please note that this was originally posted in 2004. I am restarting this thread, and trying to update it as I have been away from the boards in a very long time and am not able to access the original post...

Originally Posted by kc0iet on July 27, 2004
SURGERY DATE: June 4, 2004

AGE AT SURGERY DATE: 39

SURGEON: Dr. Zecheal & Ritter-Lang

SURGERY LOCATION/CLINIC: Stenum Germany

DEVICE(s), Charite LEVEL(s):L4-5 & L5-S1

COST = 24,000. Euro (Approx. $30,000. US)
AMOUNT BILLED:
INSURANCE ALLOWED: $27,900 !!!!!
OUT OF POCKET: About $2000 plus travel!
TRAVEL: $1730.
EXPLANATIONS? Two coach tickets.


ONSET OF LUMBAR PROBLEMS, DATE OF INJURY, CAUSE, ETC...: Low back pain ongoing since age 19. DDD

PRIOR SPINE SURGERIES AND PROCEDURES (IDET, ESI, etc...): Steroid epidural injections (several through the years) - PT

PRE-OP MEDICATIONS: Bextra - Neurontin - Percocet

PRE-OP DIAGNOSTICS (discogram, nerve root blocks, etc...):Positive discogram in May 2004.

PRE-OP NEUROPATHIES (what, where, & degree of pain, numbness, tingling, sexual/bladder/bowel symptoms, etc.): Tingling and numbness in both feet and legs.

PRE-OP CONDITION (Please include %leg pain/% back pain, pain levels, type of pain, ability to work and function, disability status, etc.... be direct, but be as verbose as you need to):

Low back pain 65% Leg pain 35% Leg pain was achey with numbness and tingling in both feet, constant. Back and butt pain was all over the place depending on the amount of pain meds and activity level. Most days, with meds 6 out of 10.

Was able to function pretty well if I wore my brace until February of 2004. Have been off of work since 2/3/04. By the time I arrived in Stenum my quality of life, well, I had no life. I arrived in Stenum 2 days early and could not even enjoy it. Could barely even walk up the hill to the hospital.

TIME POST-OP AT ORIGINAL POST HERE: 7 weeks

DESCRIBE YOUR SURGICAL EXPERIENCE: No complications. Two level surgery completed in 65 minutes. Roaming the halls in the hospital the next day. Roaming the streets in Stenum and climbing stairs by day 4!

RATE FUNCTIONALITY / SATISFACTION AT INTERVALS BELOW:

FUNCTIONALITY:
1. Very poor: much worse... disabled after surgery.
2. Poor: worse after surgery.
3. Neutral: No improvement, or improvements offset by new problems.
4. Fair, some improvement, limitations are still serious.
5. Good, substantial improvement, some limitations.
6. Excellent: no limitations.

SATISFACTION:
1. Very sorry I had the surgery.
2. Somewhat sorry I had the surgery.
3. Too soon to tell, or I'm ambivalent about the surgery.
4. I'm somewhat glad I did my surgery.
5. I'm very glad I did my surgery.

FUNCTIONALITY: __4_ SATISFACTION: __5_ [6 WEEKS POST-OP]

FUNCTIONALITY: __4_ SATISFACTION: __5_ [3 MONTHS POST-OP]

FUNCTIONALITY: _3__ SATISFACTION: _4__ [6 MONTHS POST-OP]

FUNCTIONALITY: _3-__ SATISFACTION: _3__ [1 YEAR POST-OP]

FUNCTIONALITY: _2__ SATISFACTION: __2_ [2 YEARS POST-OP]

6 WEEKS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ECT... (discuss surgery induced symptoms [leg pain?]):
Doing very well. Still learning not to over do. Starting to do light PT exercises. I had NO leg pain until I started exercises, now leg pain has returned. Back pain is gone most of the time. Some days there is some pain but not the same pain as before surgery. Incision looks great. Some pain directly on incision but the abdominal pain is gone. Still some soreness in spine at discs. Pain level most of the time, with meds is 2 to 3 out of 10. I am presently taking Bextra 10mg daily, Oxycontin 20mg twice a day and Percocet if I am active. Like when I mow the yard, go camping or am up and on my feet for several hours. Still not back to work. I have sent in another work excuse thru Sept. 4th. My current job is very physically demanding and I can not take any narcotics.

Well, not as good as I had HOPED at this point, but in honesty as good or better than I EXPECTED.

Cheers until September!

3 MONTHS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]):Well all, today is my birthday! The big 40!! It is also my 3 month and 3 days post-op anniverary. Still doing very well. Still learning not to over do. Starting to do strength building exercises and more physical activities. The leg pain is completely gone most of the time since I started taking Calcium. Back pain is gone most of the time. Some days there is some pain but not the same pain as before surgery. Incision looks great. Slight pain directly on incision but the abdominal pain is pretty much gone. Still some soreness in spine at discs but very little. Pain level most of the time, with meds is 0 to 3 out of 10. I am presently taking, Oxycontin 20mg most nights but not all and Percocet if I am active (1 to 3 daily). Like when I mow the yard, go camping or am up and on my feet for several hours. Many days no drugs at all. Still not back to work. I have sent in another work excuse thru Oct. 1st. My current job is very physically demanding and 12 to 15 hours on my feet is not uncommon.

Cheers till December!

6 MONTHS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]): I did return to work in October, and that was a mistake. Apparently my spine was not ready to be on my feet 12 -15 hours a day etc. I am working but it is very difficult.

1 YEAR POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]): I am giving away most of my trips because I cannot tolerate it. Still working but when I take a trip I work four days and am flat on my back for three so that I can do it again.

2 YEARS POST-OP - DESCRIBE LIFESTYLE / PAIN / MEDICATIONS / NEUROPATHIES / ETC... (discuss surgery induced symptoms [leg pain?]): January 2006 was my last day at work. The pain in my legs and back was so severe that I was in tears at the end of every day. My ADR’s subsided, rotated and migrated. Films of my spine now look like a backwards ‘S’. I returned to Stenum in February of 2006 for a revision surgery and came home with a posterior fusion at L4-5. Two weeks later, something popped and the pain was back full force. No doctor’s here in the middle of nowhere so I traveled to Dallas, TX and a SCS was implanted, without success. I vow NO MORE SURGERIES! By June of 2006 I was using an electric wheelchair for mobility and rarely left my bedroom.


For the rest of my story (to date) I will start a new post in this thread…

Last edited by kc0iet; 03-28-2009 at 08:48 PM.
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Old 03-27-2009, 02:42 AM
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Default My Story - Part 1

Hi All,

It has been a very long time since I have posted, or even visited the boards. However, I am going to attempt to post my story with the hopes that it may save someone else from the same journey which I have endured.

Like most of you, I had suffered from back pain for many years. My back pain started at around the age of 18. I endured the pain for many years without seeking medical assistance. After all, at that age I was a United States Marine! – No Pain, No Gain ooh rah! So I pushed on for many years. I was in my late twenties when I began minimally invasive treatments and testing for my back problems; shots, chiro, tens units, physical therapy and so on. In my thirties I was finally diagnosed with DDD, some loss of disc height, tears, bulging at and mild arthritis at L4 through S1. By this time I lived in rural NE Missouri where the quality of medical care is a bad joke. I was in constant pain and my symptoms were consistently getting worse. With my low back pain, radiating down my legs (predominantly right sided) not responding to conventional methods the “F” word (fusion) kept coming up at more frequent intervals. Now, among other things, I am a very stubborn and determined individual. I had always heard that with a fusion the levels above would give out and the loss of motion was of great concern. I knew there had to be other options and I began my quest. It didn’t take long for me to learn that ADR had been preformed successfully for many years in Europe.

In the beginning of 2004 the pain was so overwhelming that I could not work. At this time I was a flight attendant which is much more physically demanding than many people realize. When I was working, my days were filled with 12 – 15 hours on my feet, twisting, bending and lifting. I was on family medical leave and receiving short term, employer sponsored, disability compensation. The key word there is short term. I knew that I had to find a way to fix my back soon or my career and seniority would be lost. As many of you have done, or are considering, I contacted the surgeons in Europe for a consultation. The staff at Stenum Hospital responded very quickly and advised me that I was a good candidate for ADR. In fact, I was in the waiting room at the Orthopedic Group here in Missouri when I received the phone call to offer me a surgery date. I still had not received a reply from the other surgeons that I had forwarded my case to. I was told that there was a very high probability that the ADR surgery would fix my back and that I would be able to return to work in four to six weeks! This was fantastic news, but how would I pay for this? I had been a single parent ever since my son was born in 1984. I had always worked as many jobs as it took to provide for my son but had never earned enough to accumulate any sort of savings. After some internal debate and discussions with my friends and family it quickly became apparent to me that cost was irrelevant to get my life back. I funded both the trip and the surgery with my credit cards.

It is difficult to explain the emotions I felt at that time. I was anxious but also relieved and very hopeful. The staff at Stenum was so reassuring that this was the right thing to do. So we left for Germany at the end of May 2004. I was scheduled for the first surgery on June 4, 2004. My two Chartie ADR’s were placed at L4-L5 and L5-S1 with approximately one hour of surgery time. As so many before me reported, I was up and walking that day and my leg pain was, for the most part, gone.


2004



I even requested to leave the hospital early. I walked more while I was in Germany than I had in months. I made the trip home without too many complications and after some rest from the long trip I was feeling pretty good. In fact, as you can see from my first post in this thread, I was mowing the yard and even went camping for the fourth of July in 2004.



OK EVERYONE, ISPINE SAYS MY POST IS TOO LONG SO I AM CUTTING IT IN HALF HERE AND WILL CONTINUE IN ANOTHER POST...

Last edited by kc0iet; 03-27-2009 at 02:49 AM.
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Old 03-27-2009, 02:51 AM
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Default My Story - Part 2

Then I return to work in October of 2004. Stenum staff told me that I could return to work within three weeks after returning home! By October, all of my short term disability compensation was depleted and the bills just kept coming so I felt I had no choice but to return to work. By December my symptoms were returning. I would fly four days and then be flat on my back in bed for the three days I was home. I went to my GP and had new films taken, but no one here has a clue what they are looking at with my films. I struggled on…By the following December I was in so much pain that I cried myself (almost) to sleep every night at the hotel. My last flight was on January 6th, 2006.

I requested new films and almost cried when I saw them. My spine looked like a backwards ‘S’. Unbelievably, the radiologist report and my doctor said everything looked normal! Everything was tilted, the ADR rotated and the plates were clearly subsided. I pointed this out to my doctor and began another “what do I do now” quest. I traveled from Missouri to Dallas for a consultation from a competent surgeon and he confirmed everything I saw in the films. Then I was again hit with the ‘F’ (fusion) word! I still did not want to accept this. I had also contacted Stenum and provided them with copies of my films. After some discussion Stenum said that they did not think there was rotation or sustenance. They felt that the cartilage and ligaments holding in the ADR’s was weak and felt that Dyneses was the best option, but more tests would be done when I arrived. I was scheduled for the Dyneses surgery on March 2, 2006 and back to Stenum I went. My second trip to Stenum was much different than my first. In 2004 we were all treated like Kings and Queens. When I returned in 2006 I was hidden away on the German side and largely ignored for several days. March 2nd came and went and I was told that they needed to discuss my case further. Surgery was rescheduled for March 4th. The only further ‘tests’ that were done were to make me flex and bend while taking more x-rays. On the 3rd I finally met with Dr. Zecheal and was told that the American doctors were wrong. There was no rotation or sustenance, it was merely perspective. I had repeated tried to get them to consider a revision surgery to remove the Charties and replace them with the Maverick discs. I was told that would not help me. Dr. Zecheal said he was going to discuss further with Dr. Ritter-Lang but felt I would have the Dyneses surgery in the morning and that would support my unstable ADR’s. That night a female doctor that I had never met came to my room, introduced herself and told me she would be assisting with my FUSION in the morning. Needless to say, I went a little bonkers! I let her know in no uncertain terms that I did not want a fusion. She let me know that they had discussed it and the fusion was my best option, and she left.

So here I was, in Germany, alone, scared, angry, frustrated, confused, you name it – I felt it! My travel partner was already gone for the night. She was staying at a boarding house about a mile from the hospital. I had walked there once after my ADR surgery in 2004. I needed to talk to her. She was the only one there that spoke English fluently at that hour. I took a couple of pain pills, grabbed my forearm crutches and headed out. I am not sure what time it was but it was very dark. Things look much different there when it is dark! If you have never been there, Stenum is what I would consider out in the country, few street lights, etc., you get the picture. Well, to make a long story short, I got lost. To this day I am not sure what town I ended up in with my sticks in my PJ’s but there was another hospital, traffic and lights. Finally I used my extensive (5 or 6) German Vocabulary to try to ask how to get back. No one had a clue what ‘hospital’ was. Just when I was ready to give up I asked one more driver and remembered the sign says ‘clinic’ not hospital! The driver tried to give me directions and fortunately she spoke a little English and we determined that it was far and she and her daughter gave me a ride back to Stenum. No one knew I had been gone for three hours! There was little time to talk to my travel partner in the morning when she arrived. I felt as if I had no alternatives. It was either trust their diagnosis, and have the fusion I had fought so long and hard to avoid or return home where I would continue to search and end up paying for a fusion here in the U.S. My posterior fusion was done that morning at level L4-L5. To make this nightmare even worse, the most unstable area of my spine was (is) L5-S1.

After my surgery, all the American patients had gone to the Hotel so I was allowed to go to the new American wing for recovery – where the staff speaks English and there is internet access. I still had pain but there was so much new pain from the surgery I could not tell if the fusion had helped or not. With the medications, I did feel better. I was up walking (with my sticks) the next day and left for the states a few days later. Within a couple of weeks of returning home I heard something POP in the area of the fusion and all of the back and leg pain returned full force.

I did return to the surgeon in Dallas in October of 2006. He wanted me to try the Spinal Cord Stimulator for pain relief before considering another evasive surgery. He did let me know that there was (still is) a non-union of the fusion. I did get the SCS, but there is no representative in the area to adjust the programming. Within a few months of getting it I would experience chest and thoracic pain whenever I try to use it. I did travel to have the programming adjusted when I tried to use it once and it turned on full force and would not turn off! The programmer was not able to adjust it to alleviate my pain but the chest / thoracic pain was not as intense. He felt the leads might need to be moved but offered no advise as to who might move them other than returning to Dallas. I sent a copy of my new films to Stenum, and told them of the report of a non-union for Dr. Zechael to review them, I checked back by email several times after I received the delivery confirmation, but I have never heard from them again.

2009



My new-year’s resolution for 2007 was NO MORE SURGERY! I decided that if I had to take pain meds and use a wheelchair for mobility – I could live with that. At my age, all of these surgeries were really kicking my butt! I sold everything of value that I had ever accumulated in order to pay the bills and survive while I waited for Social Security Disability. There had been no paycheck to paycheck to live by for a long time. My GP has added Fybermyalgia and RLS to my diagnosis’s. My SSD was finally approved, and in March of 2007 I started receiving services from Vocational Rehabilitation and started working on a college degree through an online campus. Since my fusion I have spent approximately 20 hours a day flat on my back in my hospital type bed in a town with a population of 297. No services to speak of other than my home health aide that comes by to feed me and take care of the house twice a day.

I have done my best to remain positive. I have only two more classes before I graduate Suma Cum Laude with my Bachelors. When school was in session I would suffer through the pain and take as little medication as possible so that I could complete my studies. Around the holidays (2008) I noticed that I had to take a lot more pain medication to control the pain. Around the first of March, 2009, the pain medication is no longer controlling the pain. I am currently taking Oxycontin, Percacet and Dilaudid. I am to the point that I can’t push my way through the pain and the mind fog to do my class work. I finally had new films taken and they don’t look good! New Films

So, here I am again… Now what do I do! I am again conceding defeat and looking for a surgeon to tell me my options. If you have made it through all of this post, then you should be commended. You are truly doing all you can to educate yourself and consider your options. I still believe that ADR is a good thing. Done correctly it can give you your life back. But if it is not done correctly, well you may find yourself in a similar position as I am currently in. DO YOUR HOMEWORK! CONSIDER YOUR OPTIONS! AND FIND OUT AS MUCH AS YOU CAN ABOUT THE SUCCESS / FAILURE RATE OF THE SURGEON YOU ARE CONSIDERING.

I write this not for sympathy, nor to detour anyone from their consideration for ADR surgery. I write this to let others know that ADR is a major surgery and you need to be certain that the surgeon’s goal is quality, NOT quantity!

Best of luck to all of you.

Last edited by kc0iet; 03-28-2009 at 08:51 PM.
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Old 03-27-2009, 02:38 PM
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Hi kc0iet

Thank You Thank You

Thanks for your story and hope you can resolve your pain.Living in pain sucks

Their must be a surgery here in the states to help?

I will hold out as long as I can

Thanks
Gil
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L5-S1 lam 1994
L2 to L5 DDD
L3 -L4 hern Dec 2007.
L4-L5 Annular fissure with mild central stenosis and moderate facet hypertrophy.
L5-S1DDDDD
L2-L3 Right-sided neural foraminal narrowing at and L3-L4 related to posterolateral hypertrophic spurs and facet hypertrophy.
C3-C4 limited DDD
9 injections Depo. P.T. 13 months 5 dose packs,
Nerve Block Injections.4 ESI S1
L5-S1 foraminotomy 09
L4-L5 Microdiscectomy 09 Reherniate 4-2010
Coflex-L Implants L4 to S1
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Old 03-27-2009, 03:28 PM
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kcoiet,

Thank you for your story....

What a wonderful job putting the your time-line
together.

We are all here to support one another.

Please stop in and say hello to us when ya
have some time.

You sound like you like to keep busy...

Todd
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Stenum Hospital * Germany

Surgery 10-19-07 ( L4-L5 Maverick disc )

For my true life story ...

go to -----> www.youtube.com

print -----> ADR surgery into the space bar

or ... http://www.maverick-disc.blogspot.com (my picture & movie updates)
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Old 03-27-2009, 06:45 PM
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Wow. Thank you so much for sharing your story. It is admirable that you want to help others, by letting them know what can go wrong. I really hope that you are able to find someone who can figure out a way to help you. No one should have to live like this.

I was also a single parent raising my son, coincidentally born in 1984 too.

Can I ask if you got bone density tests done before you had surgery, or since then even?

Also, what was your reasoning for asking to have the Charite discs removed and putting in Maverick discs?

I am struggling to figure out how to determine which disc is better. Though from all I have heard, I don't think I would ever want a Charite. I assume that the Charite was the disc to use though, back in 2004.

Again, thank you for sharing your story, and I hope you find some pain relief.
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Cathy

46 years old. 12-15 years of intermittent pain, 2 years with constant pain.

DDD, L4-5 and L5-S1, pain confirmed by discogram.
PT, ESI's, Facet injection and block, Acupuncture - all no help.

2-level (Prodisc-L) ADR surgery with Dr. Bertagnoli, May 26, 2009.

Currently taking Opana-ER (tapering off) and oxycodone
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Old 03-27-2009, 07:50 PM
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kcOiet,

My heart goes out to you. Other than sympathizing with your circumstances, there's little I can say. You put all your eggs into a basket and the bottom fell out. I'm sorry.

I know you want no more surgeries and have no more money but perhaps there is still hope for a successful revision surgery. I realize disability benefits won't pay for another surgery in Germany but Dr. Regan in Los Angeles has now done successful revision surgeries. Perhaps if and when you're ready, you'll be able to put this together and pain free days may lay ahead.

thank-you for sharing your story, Dale
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Dr. B in Bogen, Germany
Severe nerve damage in left leg, still working on it
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Old 03-27-2009, 08:46 PM
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You are such a strong person. I will be praying for you very hard. I met you at Stenum in 2/06. What a life. Don't give up. You are an inspiration.
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Rob Wilson
2/06 L4/5, L5/S1 ADR Stenum Hospital - Iliac vein cut w/ occlusion of iliac vein and hematoma
12/06 thru 8/07 Laser Spine Institute - 6 surgeries on L3/4 both sides, L4/5 both sides, L5/S1 both sides

4/08 Bonati Institute - redo of L5/S1 right
8/08 Bonati Institute - redo of L5/S1 left
12/08 Bonati Institute - redo of L4/5 right and left

9/8/09 Piriformis surgery for sciatica and cramping
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Old 03-27-2009, 09:02 PM
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Default Hi Rob

Great to hear from you!

Where is Bonatia Institute? Did they replace your ADR's?
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Old 03-27-2009, 09:08 PM
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They are in Florida. My ADR's are fine. Of course my 9 blood clots cause some swelling in my leg but it is much better than it was. After ADR I still had leg pain from the stenosis that needed to be cleaned out posteriorly.
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Rob Wilson
2/06 L4/5, L5/S1 ADR Stenum Hospital - Iliac vein cut w/ occlusion of iliac vein and hematoma
12/06 thru 8/07 Laser Spine Institute - 6 surgeries on L3/4 both sides, L4/5 both sides, L5/S1 both sides

4/08 Bonati Institute - redo of L5/S1 right
8/08 Bonati Institute - redo of L5/S1 left
12/08 Bonati Institute - redo of L4/5 right and left

9/8/09 Piriformis surgery for sciatica and cramping
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Old 03-28-2009, 01:18 AM
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Welcome back, sorry under such bad pain circumstances. I pray you can find someone to help you with your pain. Don't lose hope, God can do Anything! God Bless, Kathy
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34 years old-
1/06- In wreck with 18 wheeler
Numerous MRI's, PT, chiropractic, accupuncture, TENS therapy, massage therapy, facet injections, epidural injections, Nerve study, Discogram, confirms pain in L4/5, IDET, decompression, Bi-lateral neurotomy L3/4/5, denied by insurance twice, in Active L clinical trial, had surgery March 17, 2009 in Miami, FL- received Active L disc
Had Baby #3 after ADR!
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Old 03-28-2009, 12:14 PM
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Default Answers for Treefrog

Quote:
Originally Posted by treefrog View Post
Can I ask if you got bone density tests done before you had surgery, or since then even?

Also, what was your reasoning for asking to have the Charite discs removed and putting in Maverick discs?

I am struggling to figure out how to determine which disc is better. Though from all I have heard, I don't think I would ever want a Charite. I assume that the Charite was the disc to use though, back in 2004.

Again, thank you for sharing your story, and I hope you find some pain relief.
Hi Treefrog,

First; I have never had a bone density test done; then or now. Remember, I live in an area where medical treatment is at least 20 years behind the rest of the country! In fact, I just got a post card in the mail yesterday from my GP letting me know that my last x-ray's (View New Films Here) looked good! They even drew a smiley face on the card!!!!!!!!!! The ADR's have subsided to the point that almost half of the plate is in the bone; there is a non-union of the fusion, and it looks to me as if there is a substantial vertical crack in the vertebra that was not there before. Not to mention what ever is going on at L2-L3. But here in the middle of nowhere - everything looks good!

Second; The reasons that I asked (even begged) to have my Charitie's removed and replaced with the Maverick discs are:
1) I DID NOT want a fusion. I did not want the loss of motion and the progressive complications associated with fusions.

2) The surgeon I had seen in TX talked to me a quite a bit about the problems with the Charitie discs; the degeneration of the core, the problems with rotation, etc.

3) I still, then and now, remember the weeks after my original ADR surgery when the pain was gone and I was doing well. At that time I felt strongly that the reason the ADR's had failed was because I returned to work too soon. Now, I think that may have been part of it, but also feel that too small of a size was used lending to the substanence.

4) The Maverick disc is what Stenum was using at the time I was begging for the replacement.

Third; You are correct. In 2004, when I had my ADR surgery the Chartie was the only disc used at Stenum. The Alpha clinic was using the Pro Disc. At that time, a couple of things that led me to favor the Chartie was the reports that if there was ever a need to have the disc removed it was possible with the Chartie but not the Pro Disc, due to the notch made in the vertebra for the Pro Disc. Overall, it looked like - and posts I had read sounded like- the procedure for the Chartie was less invasive and recovery time shorter with the Chartie. Also, the Chartie was very close to FDA approval here in the US at that time. I assumed if future care was needed, here in the states, I would have a better chance of finding a physician that would take my case with an FDA approved device. Pro Disc and Chartie were the only two options in 2004.

Believe it or not, if I had the money and was given the option of having my ADR's and fusion replaced with new ADR's today, I would do it! But, I do not have the money, or even the means to get the money, for a consultation with Dr. Bertagnoli.

Last edited by kc0iet; 03-28-2009 at 04:45 PM.
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Old 03-28-2009, 02:17 PM
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kc0iet,

Thanks for sharing your story. I wish you the very best in the future.
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-Justin
1994 Football Injury
1997 Snow Skiing Injury
Laminotomy L4/L5 (3.7.97--17 years old)
1999 & 2003 MVA (not at fault both times)
Grade V Tears L4/L5 & L5/L6
2-Level ProDiscģ L4/L5 & L5/L6* *lumbosacral transitional vertebra (11.15.03--23 years old)
Dr. Rudolf Bertagnoli -- dr-bertagnoli.com
Pain-free for the last 4.5 yrs.
5.14.09 DSS with Dr. B.
I'm here to help. Only checking PMs currently.
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Old 03-28-2009, 05:49 PM
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I am so sorry that you have continued to struggle. You've remained incredibly strong and brave in spite of all that you have went through. I can only imagine the hell that you have gone through though I have been through some similar bouts with my spine. I have two Prestige discs and two Maverick discs in my spine.

I hope and pray that your situation can and will improve.

Go with God.

Terry Newton
__________________
1980 ruptured L4-L5
1988 ruptured SI-L5
1990 ruptured C5-C6
1994 ruptured C6-C7
1995 Hemi-Laminectomy C5-C6, C6-C7 Mayo Clinic
Bicycle Accident 2004
MRI, EMG, Facet Injections, Epidural Blocks, Lumbar Discogram.
Stenum Hospital Surgery November 4, 2006
Prestige Disc C5-C6, C6-C7
Maverick Disc S1-L5, L4-L5
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Old 03-30-2009, 05:35 AM
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I would try to get consultation with Dr Regan and one with Dr Bertagnoli to see what they have to say. Dr Regan has worked miracles with people who have had bad ADR's. He has dealt with extremely complicated ADR removals in the lumbar on patients that no other doctors would touch. He removes ADR's and does fusions. DOnt be so afraid of fusions now that your ADR's arent working out. The one lady who was at her wits end (same situation as you) had dr regan remove the ADR's and fuse her at both levels and she is fully healed and back to normal now. ANy type of health insurance should cover a 2 level fusion done here in the US Id think?? Dr Bertganoli is one of the top surgeons in the world and his advice would be well worth considering also. Seems to me that ADR's may not be good for you, maybe some people's spines just arent well adapted to have ADR's??
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Old 03-30-2009, 03:17 PM
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Default Thanks for answering

Thanks for the answers kc0iet. It sounds like you made the best decisions under the circumstances.

I really hope that you are able to get help. Even with no money.insurance, I would try to contact some of the doctor's that Steve55 mentioned. It wouldn't hurt to explain your situation, and ask for help. Their hands may be tied, but then again, there may be options available for those without the means to pay for treatment themselves.
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Cathy

46 years old. 12-15 years of intermittent pain, 2 years with constant pain.

DDD, L4-5 and L5-S1, pain confirmed by discogram.
PT, ESI's, Facet injection and block, Acupuncture - all no help.

2-level (Prodisc-L) ADR surgery with Dr. Bertagnoli, May 26, 2009.

Currently taking Opana-ER (tapering off) and oxycodone
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Old 07-29-2009, 01:24 AM
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June 2009 - Both Chartie ADR's removed and replased with cages. Ten days later the non-fusion of L4-5 was also removed and proper fusion rods for both levels L4-5 - S1

July 2009 - I developed sever blood clots due to the 7+ hour surgery to have the Chartie's removed. I have begun my L O N G recovery, but am doing well. My GP says the leg with the blood clot will bother me the rest of my life and that I will likely be on coumidan forever too. As per doctors orders - no activity other than walking for the first three months. As of today, I have walked one half mile or more; twice daily, for the past six days! That is walking - unassisted by anyone or anything!
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Old 07-29-2009, 01:54 PM
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Default surgery out-come

K,

Sounds like things are going well.

Thank you for the update!!

I've checked in on this site almost every day to see
how you are doing.

Walking that far is great news!! Take it slow......

Please keep us all posted as you heal.

Todd
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Surgery 10-19-07 ( L4-L5 Maverick disc )

For my true life story ...

go to -----> www.youtube.com

print -----> ADR surgery into the space bar

or ... http://www.maverick-disc.blogspot.com (my picture & movie updates)
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Old 08-04-2009, 08:19 PM
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Default Interesting findings during KC's surgeries.

I spoke to KC a few days ago. It's tough to listen to the descriptions of the limitations imposed by the DVT and the impact that will have on the rest of her life. However, it's wonderful to listen to descriptions of walking longer distances than ever possible without crutches, canes, wheelchairs... and without the RSD-like symptoms that occurred whenever she tried to do this before the surgery. It's been a tough road for KC and I hope that after a few months, it will all seem to be VERY worthwhile.

You may already know that I was able to observe her surgeries. It was planned to be anterior and posterior surgeries on the same day. The surgery started with the anterior procedure to remove both prostheses and replace them with synthes synfix cages. These anterior cages are similar to the STALIF cages that provide big-footprint fusion cages PLUS screw fixation to make them even more stable and rigid than the more traditional style cages.

One thing of note is that the surgeon was somewhat surprised to discover a significant amount of tissue behind the prosthesis, seeming to indicate that inadequate preparation of the disc space was performed in the original ADR surgery. A typical ADR surgery may go very quickly if there is not very much tedious work to do to prepare the site for the prosthesis and to adequately decompress behind the disc if there are osteophytes, calcified remnants of disc herniations, scar tissue, etc.. Inadequate preparation (simply not following the recommended procedure) substantially increases the risk of less than optimum outcomes. That's why the procedures exist.

After the anterior procedure was complete, it was decided that it would be prudent give KC an opportunity to recover some from the first surgery before proceeding with the posterior surgery. The risk of complications from 2 shorter surgeries is far less than the risk of complications from one longer surgery. (I have always wondered about the combined cervical/lumbar surgeries they do in one OR session at Stenum. I know no other facility that will do that. Interestingly enough, my client for my next trip overseas is an MD who needs both cervical and lumbar surgeries. When I started a discussion about the options, she just cut me off... "absolutely medically inappropriate!")

10 days after KC's anterior surgery, they went in posteriorly to explant the existing fusion hardware at L4-5 and implant new hardware at both L4-5 and L5-S1. We had never been able to understand why the revision surgery at Stenum only included L4-5 because there were clearly structural problems emanating from L5-S1 before the revision. There were more surprise findings upon exposing the fusion site at L4-5. Not only was there no fusion mass present, but there was no evidence of any effort to create one. I suppose itís possible that morselized bone was implanted and was completely resorbed, but the surgeon noted that apparently no effort was made to decorticate the bone before laying down the graft as is typically done during a fusion. It may be the case that the 2006 Stenum fusion procedure did not include an attempt to create a fusion mass. I donít know the reason for this because in a typical posterior fusion, the hardware needs to function as a load bearing device until bony fusion occurs. After the fusion occurs, the hardware is redundant. Without bony fusion, the pedicle screws will continue to bear the load and the system will be more at-risk for future problems. Iíve never seen another fusion procedure with no attempt to promote bony fusion. I still donít understand.

In any case, KC is progressing, albeit slowly. I hope to hear more good news soon!

All the best,

Mark
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1997 MVA
2000 L4-5 Microdiscectomy/laminotomy
2001 L5-S1 Micro-d/lami
2002 L4-S1 Charite' ADR - SUCCESS!
2009 C3-C4, C5-C6-C7, T1-T2 ProDisc-C Nova
Summer 2009, more bad thoracic discs!
Life After Surgery Website
President: Global Patient Network, Inc.
Founder: www.iSpine.org

Last edited by mmglobal; 05-07-2014 at 06:09 PM. Reason: No text change, only highlighting the most egregious issues.
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Old 08-06-2009, 01:56 PM
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Thank-you for that detailed explanation of the surgery and reversal Mark. Boy, KC has been through the ringer. I hope this latest revision holds the key to your recovery KC so you can begin to get back to the task of living your life! My very best to you.
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bicycle accident 6/01: 2 compression fractures @ T12-L1; vertibroplasty; 4/06: right hip labral tear & arthroscopic repair; 4/07: lumbar prodiscs @ 3 levels, L3-6 by Dr. Bertagnoli; 7/02/08: ALIF L6-S1; 7/30/08: reopened to remove bone cement, leaked onto S1 nerve root; 8/08: pulmonary embolism, double pneumonia, collapsed left lung, pleurisy, pleural effusion; ALIF fusion complete; 3/10/09: SI Joint Fusion by Dr. Stark; Jury still out.
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Old 08-08-2009, 08:42 PM
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Default Dvt

KC,

Remember me. I was in Stenum when you had your fusion revision. I was the one that had the substantial DVT in 9 ? places of my iliac / femoral vein. It was a very difficult time. But I have had great improvements. I still wear a knee high stocking and get some swelling but it is greatly improved. I spoke to Mark and it is fine if you get my number from him and call me to discuss. Some of the things that seemed to help are:

* healthy diet
* lots of water
* try some pycnogenol bark tablets
* lots of walking - I know it hurts
* of course I believe in lots of prayer which I will be doing for you
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2/06 L4/5, L5/S1 ADR Stenum Hospital - Iliac vein cut w/ occlusion of iliac vein and hematoma
12/06 thru 8/07 Laser Spine Institute - 6 surgeries on L3/4 both sides, L4/5 both sides, L5/S1 both sides

4/08 Bonati Institute - redo of L5/S1 right
8/08 Bonati Institute - redo of L5/S1 left
12/08 Bonati Institute - redo of L4/5 right and left

9/8/09 Piriformis surgery for sciatica and cramping
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Old 06-05-2011, 07:49 AM
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Smile Hello All My Spiney Friends!

It has been sooooo long since I have been on the forums that I forgot where all of them are!

Anyway, I just wanted to say hello and give you an overdue update.

It has been two years since I was in the hospital for my last pair (the 6th and 7th) major spine surgeries! I am doing really well. I still have a lot of health issues and am now hopelessly addicted to Fentanyl but rarely take any other pain meds and have NOT used my wheelchair since I got home from the hospital (July 2009). Thanks to the DVT's between surgeries in 09, I will always have to take Coumadin and keeping the levels where they need to be is a challenge...

But - I am about to take on another huge challenge. I'm not sure if I am ready, but I got in to Law School! I will be moving half way across the country, alone, and embarking on the most challenging academic pursuit of my life! Your prayers and positive mojo would be appreciated. I have been working towards this goal ever since I have been unable to work. I am both excited and scared ****less! Without further complications or delays, I will be 50 when I take the Bar Exam!

PS - Mark, did you change your email address? I've tried many times to email you. My prayers continue to be with you
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Old 06-05-2011, 12:25 PM
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Default re age

Hey Kc..
I remember when I was thinking about going to law school and how old I'd be when taking bar exams (back then I was nearing 40y.o.) and a friend said "you're going to be that age anyway".. so true!

Such exciting progress you've made and while medicated! I stopped taking Neurontin last August and have finally felt like I can think again tho the last few years on it seemed to really make my mind sluggish. Probably just wasn't bothering to try to think!

I don't know any docs in the area that you're relocating to however you're probably going to want to try to locate a good Pain Management doc to prescribe for you vs. a GP. When I relocated I tried to get a 3 month supplie of meds as it took me a while to find someone to prescribe for me (when I moved out of state).

Good luck w/everything and please keep us updated!
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Old 06-05-2011, 05:09 PM
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Wow KC,

I'm jealous. I was about 40 when I thought of going to law school and I'm sorry I didn't - and I would have taken the bar exam before 45.

So to you I say - good for you!!!! Gutsy move but after what you've been through, a walk in the park, which is difficult enough.

And of course, glad you're doing well enough to even consider it, let alone actually do it. I'm quite impressed. I know you'll be inundated with studies but please, please, keep us posted. Success stories give so many so much hope, even after initial bad outcomes - Please

Dale
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Dr. B in Bogen, Germany
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Old 05-07-2014, 04:50 PM
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Here is a picture that Janet sent me in August of 2012... she was just about to start her second year of law school. As mentioned above, when she returned from her surgery with Dr. Coufal, she put away her wheelchair and never used it again (until law school.) The demands of having to cross a large campus quickly carrying 50 pounds of books were too great, so she brought her wheelchair to Houston and it allowed her to stay in school.

These pictures still bring tears to my eyes.

__________________
1997 MVA
2000 L4-5 Microdiscectomy/laminotomy
2001 L5-S1 Micro-d/lami
2002 L4-S1 Charite' ADR - SUCCESS!
2009 C3-C4, C5-C6-C7, T1-T2 ProDisc-C Nova
Summer 2009, more bad thoracic discs!
Life After Surgery Website
President: Global Patient Network, Inc.
Founder: www.iSpine.org

Last edited by mmglobal; 05-07-2014 at 05:29 PM.
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Old 05-07-2014, 06:01 PM
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I just spoke to Janet. Unfortunately, the report is mixed. Regarding her schooling, Janet "made it through the hard part" and got more than 1/2 way through law school. Unfortunately, she needed to return home to care for her ailing mother and is no longer in school. I can't tell you how much I admire her ability and drive to have gotten that far, and her priorities for putting family first. Way to go Janet.

Warm Houston was good for her. Unfortunately, her pain syndrome reacts pretty severely to cold weather. The Missouri winters are really, really bad for her. In any case, she is still on a medication level that is a fraction of what she needed following her two botched Stenum, Ritter-Lang surgeries. She bought a recumbent trike that she absolutely LOVES and, in spite of the harsh winter, she has over 500 miles on it.

Her leg still gets pretty swollen from the DVT, but it doesn't hurt her nearly as much. You don't want to be having a long anterior revision surgery if you can avoid it... I've seen many, most OK, but there can be problems. That's why you really need to be with a careful, competent surgeon... make sure it gets done right the first time!

So, even though the news is mixed and her life could be much, much better; she is still a thousand times better than she was.

Hang in there Janet!

Love,

Mark

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1997 MVA
2000 L4-5 Microdiscectomy/laminotomy
2001 L5-S1 Micro-d/lami
2002 L4-S1 Charite' ADR - SUCCESS!
2009 C3-C4, C5-C6-C7, T1-T2 ProDisc-C Nova
Summer 2009, more bad thoracic discs!
Life After Surgery Website
President: Global Patient Network, Inc.
Founder: www.iSpine.org
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Old 05-08-2014, 06:58 PM
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Default re report

Mark thanks for updating on Janet. That's just incredible re the law school endeavor and even more so having gone back to take care of an ailing parent. Both photos of Janet are great~ congrats on the recumbent biking and doing as well as you are now Janet with all that you have going on! Would love to see you post here again if you've any free time or inclination to do so!
Maria
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Old 05-09-2014, 01:11 AM
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Cool Hello All!

I know, it has been forever since I have been here - sorry…

I was so glad to hear from Mark yesterday that I decided to check in. This month is proving especially hard for me as I would be graduating from Law School this month I was exactly half way through, and on the Dean's List when I left.

Anyway… how do you like my trike?? I guess I just like a challenge LOL. Climbing hills is MUCH harder and slower when you cannot stand up on the pedals LOL. I got the trike 9/27/2013 and ride every chance I get. That has not been much this year since the furnace was still kicking on LAST WEEK! The cold REALLY sets me back. In fact, I left my bed only to go to the doctor for meds from January through May. Hopefully I will bounce back quickly now that winter is finally over! But it is depressing to know that once the cold returns - I must return to hibernation. Unfortunately I put a quite a bit of weight back on over the long winter in bed. I was quite happy tipping the scales at 105# before winter - not so now!

I am still on Fentanyl and Percacet, but much less. During warm weather I was doing very well. I purchased a recumbent trike to further my rehabilitation, and did quite well with it until winter. During cold weather I must either stay in bed or take more medication. I am still unable to sit or stand without a significant increase in pain. I can only find comfort in a near zero gravity position. I cannot sit on the couch long enough to watch a TV show or sit at the table for a meal. But if I sit in my only acceptable position (in my hospital type bed, or on my reclined trike seat) I can sit as long as I want to. Still hopeful that more exercise will increase my strength, stamina and pain tolerance.

Thanks for keeping everyone posted for me Mark. Maybe some day I can ride my trike to CA to see you LOL.

Last edited by kc0iet; 05-09-2014 at 04:58 AM.
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Old 05-09-2014, 07:21 PM
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Default re the recumbent trike

I too had one when I was living in Florida and while I found the position better for my low back or tailbone I should say I also found that pedaling up an incline was much more difficult because my quads were really put to work and thus also there would be more strain on my lumbosacral area so in turn I had to ride on pretty flat terrain in order to have a pain free ride or one that didn't create pain.

When I moved back to CA while I would have had a great bike path to ride my trike on down by the beach I had no where to store it and I could not even carry my 2 wheel bike upstairs to my apt.

I was also going to mention that while living in Florida was great during good weather when the humidity got full blast there my everything hurt so bad like my hands, my fingers, thumbs, my neck, my back... I mean I could hardly stand it! It also rained there every day at some point during the summer and I would feel intense pressure in my low back until the rain started then it the pain would lessen. Of course that was when my back was much worse and I had all kinds of pain. Fortunately I was getting ESIs at the time as well as being on the same dose of opioid medicine that I remain on to date.

I too have gained weight in the last 2 years but not because of my back as I actually started to walk quite a bit back in 2004 but a bilateral case of posterior tibial tendonitis in both feet has slowed me down quite a bit so I too have gained about 15 lbs and was weighing just what you were as well! Can't even pedal my bike as that exacerbates the condition so am thinking of getting an electric bike and hoping that I could pedal it and stop when my feet start to hurt as the aggravation of pain comes on so suddenly (just like my back pain flare ups used to and occasionally still do)!

Will you be able to return to law school as some point perhaps? I hope so. I would not want to have to live anywhere with extreme temperatures myself (extreme cold/snow and such). I doubt I'd be getting out of bed either due to DDD thru out my spine and osteoarthritis thru out my whole body.

Anyway wishing you the best and hope all is well with your family. Maria
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