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8 surgeries-Last Removal of Hardware. HELP!

From: cj - on 01/28/2010 12:53pm

About me: I am 40 yrs old and just had my 8th spine surgery. I have DDD. Was not in any accident nor hurt at work. I just have been falling apart since 23 yrs old thats when it started with the 1st Neck Fusion. I almost made it the "10" year thing you hear about discs wearing out above/below fusions. Will that's when my 2nd neck fusion happen. I thought things were going well. I was back to work almost 2 years when I started having problems with my legs/gait. We all thought is was my neck until MRIs/Myelograms revealed 2 hearniations in the Lumbar Spine. So we planned to go in and treat the higher disc L 1-2 that was herniated with a Laminectomy. I didn't even make it 4 months after that with having to go go for L4-5 Laminectomy. In the mean time, work let me go because I was off past the Medical Leave time frame. But the biggest blow was that both these Laminectomys didn't work. I had to get both of those areas Fused with Screw/Rods. So now I was 4 Lumbar surgeries and things were not getting any better. I had more problems with leg pain/weakness/back pain and falling to having to use a cane. And I wasn't even 38 years old. The medical teams of doctors, PTs, Pool Therapist, Massage Therapist, & Pain Clinic were give it time. Well, I then ended up with having the hardware removed at L 1-2 and now just 2 weeks ago L4-5 hardware removed with refusion. So 6 back surgeries in 5 years has been the battle for my 40 yr old body. I hate this!! I hate that I had to go on disability. I hate not working! Is there anyone out there that has had a similar battle? I am so worried that my spine will not hold up and more surgeries will be down the line. HELP....

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on 01/28/2010 6:53pm

Hi, I am 43 years old and have advanced disc degeneration at multiple levels in my lumbar and cervical spine. I know it sucks....I have been out of work for a year and my disbility insurance had me apply for SSDI last month. I am housebound, walk with two canes if totally necessary to go out of the house. Life has taken a 180 degree change, I have always been an active person and even though I have been in multiple accidents over the years, I managed to forge on.....no more, I have reached my limit and the future is not so bright. I have researched tihs for many years and surgeons have even told me that surgery results are questionable and invasive. Most have not offered any surgery. One says he can, Dr Butterman at Midwest Spine Institue in Minnesota, offering an artificial disc at the cervical level and one at the lumbar level plus a fusion at each level. I am trying to research any other people who have had this done. I have plenty of research of artificial disc replacement in Germany. Email me at djprieve@yahoo.com and I will send you what I have. In the mean time search disc regeneration on the web and there is some interesting information available. You will not be able to regenerate the one that have been removed, however, preserving disc that remain will be a benefit.

Any surgeon recommendations are welcome, Dave

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on 01/28/2010 9:40pm

Yes over the years I research the artificial disc for neck & back. I was ruled our for having one for my neck due to previous fusion and Degenerative Disc Disease. Going to Germany was also out of the picture for me due to $$$ and concerns of care/follow up. Have you had surgery yet?

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on 01/29/2010 5:13pm

So sorry to hear what the both of you are going through. I would make sure you are getting multiple opinions from high quality docs. There is a ton of variety in treatment paradigms for situations like both of you have.

There are some great spine surgeons in the midwest at the cleveland clinic, rush university medical center, the mayfield clinic, u of washington, st louis, etc... These are the guys other surgeons turn to for advice. I try and see who is publishing in the surgeon journals and who are the medical editors on sites like this to get a sense of who is the best.

I wish you both the best of luck and will pray for you.

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on 01/29/2010 7:15pm

Yes I agree that researching is vital. And The Cleveland Clinic, Laser Spine Institute, University of Wisconsin, Duke University, Beaumont Hospital in MI, are all great hospitals that do research, work with artificial discs.

I am looking to talk to someone who has had multiple surgeries and have had the screws and rods taken out of their old back fusions. That is where I am at.

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on 02/04/2010 7:57pm

Hi CJ,

If you are falling then you may possibly have something that is shifting in your spine against your spinal cord which causes you to lose function. This happened to me and after several years of a misdiagnosis of Multiple Sclerosis, my surgeon found the cause in my cervical spine.

I know all this can be severely depressing. Do some research and find a qualified neurosurgeon. You may also want to look into qualifying for Social Security/Disability especially since your back injuries & surgeries have already cost you one job and you continue to suffer. Google or look on the Social Security website for info. You might need to hire a lawyer, but try applying on your own first. If accepted, you should also be eligible for Medicare health care services.

A good pain management specialist might be able to help you too.

I've had cervical and lumbar fusions, suffer from DDD, arthritis, etc.., also have gastroparesis (partial paralysis of my digestive system) caused from my cervical surgery. For exercise, I work out in an indoor therapy pool and find that going on daily walks when I am healthy enough works wonders for my strength - both physically & emotionally.

Hang in there and know you are not alone!

Mo

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on 02/13/2010 2:15pm

I was operated on in Jan. 2004 at the SE Spine Institute in Mt. Pleasant, SC and had Artificial Disc Replacement surgery. Art. Disc was implanted at L4 & L5-what was left of the original disc was pushing against my spinal cord. This was a study by Medronic and I have a Maverick Disc made out of chromium and cobalt! As a result of the surgery, I was left with nerve damage and have been in severe, constant pain for 6 yrs now. After a year or so with the dr that operated on me I was "kicked to the curb" and told to find another dr because there was nothing else they could do for me!!! I asked to be sent to Dr. Mark Netherton in Mt Pleasant and God Bless him, he has done everything possible to help me with my pain. Over the yrs I have developed bone spurs, osteo arthiritis and all disc in lumbar area are degenerating. I take four 80mg Oxycontins, two Lyrica, Phenergan and an anti depressant and Ambien to sleep. This is alot of meds but without them I would not be able to function. My pain is in the lower back with deep, stabbing pain(neuropathy) that runs thru my hips and all down my legs. I to go to a water aerobics class three times a week and for that hour I feel some better. We all have similar problems and it helps to see others in my same condition. If I had it to do over I would have a neurosurgeon adn not orthapedic. Right now I am scheduled to have a "Spinal Stimulater" done on March 1-the first week is a trial to see if I get some relief from the pain. I will be bed ridden for the week-I can't even take a shower. After the week, I go back to the dr to tell them if I want this done on a permanent basis. All I can do is pray that I will get some relief from the pain. God Bless all of you-I feel your pain and I know what you are going thru. I had to give up a very good job back in 2006 and am now on disability.

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on 02/19/2010 2:13pm

I found this site by accident. Just wanted to let you all know that even though I havnt had as extensive surgery yet as others, I still understand frustration and pain. Ive had 2 surgeries in past 4 months, laminectomy L3 4 5 and S1 with some microdiscectomy. I dont know if Ill ever be the same person I was before. The first surgery left me with severe pain at top of thigh where meets torso. Nothing relieved pain. Had to wait 4 months post op before they went back in to reexplore. This time the major pain went away but still have constant pain in leg. Still stiff, still sore. I feel like I cant breathe fully like I want to (if that makes any sense) feel tight in stomach area. My Dr. is well known neurosurgeon here so I know im in good hands but trying to explain to them how you feel and whats going on is frustrating. I know two people who had what I had done and they are going on with their lives as usual. I feel left behind. Even though its only been two weeks p.o. My job is still open for me. I have applied for disability just in case but nothing seems the same. Maybe I expect too much. Im just practicing walking right now. Too soon for pt. Does anyone else feel the tightness in stomach like I do, like its hard to breathe when your walking. Im not short of breath. I just feel like its a struggle to keep my torso upright, walk and breathe too. Its just not what it was before, and wondering if it will get easier.

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on 02/25/2010 2:45am

Dear Ci, I feel your pain buddy. I know what it is like to want to give up. I have not had any surgery. I don't qualify. I have arthritis all over my body. No Kidding! My neck, shoulders, elbows, spine from C5-6 down to my tail bone, hips, knees, ankles and feet. But the worst is my back and sacrum and sciatica. I have been in the club since 2001. I went on a trip with my family, including spouses' and grand-kids in 2000 for 3 weeks. From Orlando to the Key's. And we lived it up! Spent $18,000. I thank god all the time we did that. It's the last trip I will ever do like that. Anyhow, as far as your situation. Don't give up! Fight, fight like it were any other illness. You also have to demand treatment like it were any other illness.
But as for your question, the comment about your spine not holding up, I think that should be something you should discuss with your doctor. Do you have a good relationship with them? If not then you either have to try to discuss your concerns or find another doc. It is really important that when you have a chronic condition, no matter what the condition, you have good communication with them about. Just say what you are feeling, even if it is that they are not helping you. They usually don't like it, but they'll get over it! Most Dr's are professionals. Treat them that way! You will get better results. You do not need to know everything about your condition like a doctor. Although I do suggest that you research it as much as you can. But make them earn their money!
Also, for anyone dealing with depression as well as pain, seek help for that. It is common for people like us to feel depressed. Especially when you lose everything you had because of this lousy thing! I know, it happened to me. I was ready to end my life. Thank god my husband finally caught on and helped me see how I needed help. Other wise, I would be dead. Even though I am in pain everyday. I am glad to be here. It is possible for some people to find peace from the pain, but I think that is the luck of the draw. But you should not quit trying if there is hope. Find out your options and then exercise them. As far as the rest of your life, do not give into the feeling that you can't do anything. That is depression talking. I couldn't''t see any options either. But I got this laptop. Now I can find people who understand a big part of me. I can make friendships with people all over the country. I can just have fun if I want! DO NOT STOP TRYING NO MATTER WHAT!

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on 02/25/2010 11:55am

Thank you for your advice. I have done the research doctor thing and I do have a good relationship with my spine doctor. It is just exhaustiong at times. But I go for my 6wk checkup tomorrow to see how this past surgery is doing. Being back into the back brace for the 6th time in 5 years is allot of restrictions on my life. Most of my family & friends don't treat this like a illness. Which makes it hard to deal with it when they "blow" it off. Money is so tight & bills are so high. That it adds allot more on top of hurting and dealing with surgeries.......

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on 03/13/2010 3:29am

Hi, I'm new here and to answer your question, "Yes" I am in pretty much the exact same boat as you are.
I was an R.N. for years and I did huge amounts of lifting although I am a small person. All that BS they lecture you about body mechanics is just that, garbage! I lifted (attempted with another RN) a heavy patient and my back was finished. OMG, I wish I could go back and re-do all that again, I would never abuse my back the way I did; I'd be a secretary or something, anything but that! Anyway, I am in severe pain 24/7 now, I have a drug infusion pump which I am grateful for as it keeps me out of bed all the time but if you believed the ad's about it, they make you think you'll be out jogging or playing golf, NOT!!!!
I can bairly make it around the house. I had the fusion, hardware removal, stimulator trial (that doctor almost killed me giving me meningitis) during the stim trial. Pump implant and probably 20 epidurals,pt, aquatic therapy... everything and I'm still in severe intractable pain.... that's why I'm here, thinking about another surgery. I have to have some hope of getting out of this pain, but as I read all the posts here at SU, I can see we're all pretty much in the same boat. The one good thing is the doctor that did my (rotten) fusion, went to jail in NV =)... That was the best day of my life knowing that he got his... He crippled so many people and made them suffer a life of terrible pain, it makes me smile to know that SOB is in the can!!!!!!!!!! hehehehheh...... Jaynie

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on 08/27/2010 12:17am

I don't mean to sound harsh, but you're an idiot. Eight surgeries? What were you thinking? I have had my cervical spine and lumbar spine operated on for central canal stenosis and I have hardware in my neck. So I know the pain and recovery involved. Also, you say your issues started when you were 23, but there was no accident. I was born with VACTERL Association and my spine looks like something you might see in the movie Aliens. I have hemivertebrae, scoliosis, major spinal degneration, stenosis (both foraminal and central canal) and syringomyelia. The cervical spine surgery was mandatory because the central canal in C4-C5 had grown tightly around the spinal cord and I was a high risk for tearing or severing the spinal cord in even a small accident or what would otherwise be an inconsequenial fall or accident. I was told to not ride a bike. This was repaired 3 years ago. I had elective surgery on my lumbar spine because of pain. Here's the thing, I don't see one mention of physical therapy or core strengthening in your narrative. I understand that every case is different but I have congenital spinal issues and scoliosis and if anyone should be reciting your narrative out of the two of us it should be me. Which makes me wonder of course. What the hell? Your best friend should have been your physical therapist following your first surgery. Your narrative doesn't give your weight or specify whether or not you are in good physical condition. The most important thing you can do for your lumbar spine is to strengthen your core muscles. I'm not a doctor but my immediate gut reaction is that the last thing you need is another surgery. Have your neurosurgeon refer you to a physical therapist and go as many times as they will let you. Learn the exercises. I can tell you from personal experience that if I let myself go athletically speaking I have all kinds of difficulty walking, lots of back pain. Before starting my exercise regimine I couldn't walk to the gym (3 blocks away) without having to stop because my back and legs locked up completely on me. We back and neck surgery survivors have to keep ourselves fit....we can't allow ourselves to become obese and sedentary as the majority of Americans are doing these days. It doesn't matter how many surgeries you have you will never be pain free unless you get yourself in peak physical condition. Sorry again for the stern tone but the eight surgeries thing really set me off and I think your doctors have not done well by you. I am sorry for your suffering.

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on 08/27/2010 9:10am

One should never call another patient with spine problems an "idoit"! You should really read everything! Should not be so judgemental & spiteful to others looking for help.

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on 08/29/2010 12:15am

DEAR CI, I JUST READ AN ARTICLE ON THE HARDWARE (SCREWS) THAT ARE USED IN FUSION SURGERY. I WISH I READ IT B4 I HAD IT DONE. IT CAN MAKE THE SPINE EVEN WEAKER THAN IT IS, WHICH REQUIRES MORE SURGERY. WHY ARE WE (PATIENTS) UNAWARE OF THIS?? THE FDA DOESN'T REALLY APPROVE THE "MEDICAL DEVICES THAT ARE PUT IN OUR BODIES. IF SOMETHING DOESN'T WORK FOR 1 OR 2 PER DOCTOR, NOBODY TAKES IT SERIOUSLY. NEW DEVICES ARE APPROVED ON A "RIDER" (IT IS SIMILAR TOO SUCH AND SUCH, WHICH WAS APPROVED IN 1999 ETC) AND IT IS APPROVED BY THE FDA (NOT TO MENTION KICKBACKS TO DOCTORS) MEANWHILE, WE THE UNSUSPECTING HURTING PUBLIC ARE KEPT IN THE DARK. SORRY FOR YOUR PAIN, I WAS SUFFERING FOR OVER 10 YRS. WHEN FINALLY WALKING MORE THAN 2 STEPS WEAKNESS OVERTOOK ME.. FUSION THE ONLY OPTION. I'M PISSED OFF, BUT THINK ABOUT HEART DEVICES, SAME RULES APPLY. WHAT CAN WE DO? I'M OPEN TO ANY IDEA. MAYBE GETTING PISSED IS BETTER THAN GIVING UP??? HOLD ON TO YOUR SANITY.....

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on 10/14/2010 10:15pm

Hi Ci...
I have had multiple back surgeries also. 3 Laminectomies, Synolvial cyst removal, and PLIF almost 2 years ago. I have DDD at the lumbar and thoracic level. I've "been there and done that" regarding pain meds, injections, nerve blocks..etc. and still am in pain everyday. My kids are the only reason I get outta bed each morning. I just was hospitalized for a heart attack but learned the next day that yet another deg.disc causing pain and awaiting MRI results since legs are weak and back/chest pain constant. Anyway...you are def. not alone and I wish you and everyone on this site well and hope we all get a decrease in pain and increase in happiness/health asap.

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on 10/15/2010 11:37am

To all my spine friends out there. I thank everyone for their support and advice. Pain is something that we learning to live with and deal with in our own ways. Sugery is not always the answer for some, yet it is the answer for many. This does not mean all our pain goes away afterwards, but our ability to do more will increase over time. And the frustrating thing is that it takes time. Some days I just want to scream and others I can go out for a walk with my dog. It is our journey of learning how to cope and finding others to talk with who understand without judging. BE GRATEFUL FOR WHAT YOU HAVE, FOCUS ON THE POSITIVES. Some may say easier said than done. But we have to try and dig real deep some days. Everyday is a journey. Focus on the positives!

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on 10/15/2010 6:47pm

hi cj :)

i definitely empathize with you, and i'm glad you got some good related responses. although i haven't had the amount of problems you have, i'm also a prior chronic back pain sufferer, degenerative, discs, etc. Just wanted to send my support, and tell you to leave it to the professionals, sorry :) HOWEVER, if you're had 8 surgeries!! they've got to come up with something better than that. if you're not satisfied, get 2nd or even 3rd professional medical opinions if you haven't already, and be sure to do everything you're suppose to for as long as you're suppose to. unfortunately, back issues can take a long time to resolve because there are so many possibilities involved. try to keep your chin up, and don't let them do even more surgeries on you until you check with other specialists. checking with the leading medical facilities in the country would be my first suggestion, for sure, if you haven't already. Mayo Clinic is another great one.

All my best to you. keep us apprised of how you're doing and what may help. Take care.

Julie

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on 10/18/2010 10:41am

Nurse Jayne,
There are so many people, sitting in the waiting room, at my Pain Mgmt Dr's office that were operated on by the same surgeon that left me disabled and in constant pain 24 hrs a day!!! I worry about the Maverick Disc-Artificial Disc I have at L4 & L5-when will it wear out???? So many dr's love to operate and if I had it to do over again, I would have never let an Orthopedic surgeon touch me only a Neurosurgeon. I also trust more what nurses say then doctors. I understand everyone's pain and today I am starting a new pain med-Exalgo(Hydrmorphone) if anyone else has taken this, please respond. May all of you have a Pain Free Day!! God Bless-Joni

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on 10/18/2010 10:46am

One more thing-I go to a water aerobics class three times a week and it does help with my pain. It also helps me mentally, as everyone in the pool, has some problem-back-hip-knee and we can all bitch and moan and complain to each other. I encourage all of you to find a water aerobics class and go to it on a regular basis!!! In His Amazing Name----Joni

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on 11/23/2010 10:18pm

Well I have to say I am very proud on how strong you've been.. because I tell you I wish sometimes people would realize how painful and uncomfortable spinal surgeries are.... I am 39 and on January 2nd 2004 I got hit by a forklift at work.. and I was told by Walk in clinic that it was a muscle.. lol i couldnt believe how painful it was. jet i went to work thinking all was ok. when i just couldnt even walk after a shift was over.. as i complaint they sent me to therapist for muscle treatment.. it was enough, they sent me to specialist (orthopedics ) and sure enough he was surprised i hold it long enough. so he started treating me with injections ,(in time of injury til today I've had maybe 16 to 20 injections overall) they didnt help at time so i went into surgery on march 3 2005, L5,S1.. FUSION.. all was good until i had a nonfusion.. on march 2006 had my hardware removed and had a Laminectomy and re fused..on 2008 had a spinal stimulator trial installed and was pretty good.. since i had some bone removed for the first fusion. and now when i walk a lot not only the fusion hurts but the missing bone on my hip is a kiiler.. so the stimulator does calm that done but the fusion is not good.. im in pain , pain.pain.. now last year i had the permanent stimulator implanted and since i lost some weight it shifted to the side and had to have it repositioned.. 2 times.. so its been 6 for me although realy 8 because they opened me up on upper back to place the needles of the stimulator and plus the bone removal incision for the first fusion.. so 8 surgeries also... im 39 and i feel like shit.. but let me tell you.. workerscomp is the worst thing a human can go thru...social security hasnt still been approved cant work.. practicaly homeless.. have 6 kids.. the situation economic that im am in isn't helping the problem neither lol.. but all doctors say thats it theres nothing else that can be done.. so im in the same boat..

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on 03/09/2011 4:25am

jbarwick -

i am just curious about the *new medication pain management doctor you say is
wanting you to try for your back problem . (dilaudid )
has it worked ... and is it long or short acting ? i ask because what doctor has me
use isn't working to well for my chronic back pain from surgery . would like to hear
if it has helped ?

alc

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on 07/01/2011 8:50pm

Hi...ci...i know it has been awhile since your post (1/28/10) but just saw it and wanted to let you know you are NOT alone. I have DDD also.
I have had 6 lumbar spine surgeries in 5 years so I can relate to what you are going thru. I just had my second fusion (PLIF L4/S1) 6 months ago and still have leg and back pain. My neurosurgeon is one of the best in my area and says that my L5/S1 is so bad he coudn't go near it during my last surgery. I think from the stress of all the surgeries my L3 is starting to "go".
I have two children and an awesome husband that make the pain easier to endure.
I wish you all the best and would like to hear back from you if possible.
Take care!

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on 08/01/2011 9:51pm

8 must be the magic number. I have had 8 operation too. But I still in a lot of pain!!!!!!!!!!!!!!!!!!!!!!!!! I have a pain pump for 12 years with dilantin in it. The pump takes about 65% of the pain away. I'm 56, I was injurder in 1993 and have tried everything that I can think of.
I have had lamies, fusion , but the pain is getting worst if it can get anymore unbearible. No oral pain meds help, I can take up to 5 at a time 8mg dilantin or oxycontin. I can't stand up straight or keep my head up anymore. My neck is getting worst. I went to the doc. and he wants to do more surgerys. I don't want anymore unless they can promis me it will work 100%. I don't know what to do the pain makes me crazy, sometimes I feel like I can't go on.
When I feel like this, I pray to the Lord for help, he has helped so far. I know that I suck at typing and writing. if you need to talk email me @kbmadness@aol.com

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on 11/09/2011 12:32am

I have a similar history. Had diskectomy at age 38 at L4-5. Two years later fusion of C5-6. One year later fusion C4-5. Same year fusion from L4 to sacrum. Two years later, (this year) in April, Decompression of L3-4. That disk blew out again and I just had fusion of L3-4 with removal of hardware at L4 to sacrum. Thats 6 spinal surgeries. I'm not up to yours but I sure know how you feel. My incision was from about my bra line to almost my butt crack. Hurt like hell. I am 5 weeks post op and if my boss who is a doctor wasn't so nice, I couldn't work at all. He allows me to log on to the computer at work and work from home. That gives me 24 hours in a day to get it done. If I had to go back to a true work schedule I'd have to quit. I am now 54yrs old. I think that my age is playing a big part in my now being able to snap back any more. My surgeon is very compassionate, and he know that I will most likely have to go on disability. I don't want to give up but my family wants to spend quality time with me and see me not in pain and trying to be so tough all the time. Thats a big part of it. I'M NOT THAT TOUGH ANYMORE. Hope this helps you to know that your not alone.

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