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Lumbar fused with Sacrum
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LittleMaria71 posted:
We just found out that my 13 year old daughters Lumbar & Sacrum has been fused since birth. I'm having trouble finding information regarding this issue. I've found plenty about having it done but not what needs to be done if your born with it. What are the procedures. What are we to expect if we dont have anything done. I have questions but no answers. We don't want to fill her with pills so what's the best stretches to relieve her pain. My husband had back sergery and now he's worse then before.
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bj1208 responded:
hi littlemaria71 - welcome to the support group -

I've tried to google to see what I could find - couldn't find anything without a proper diagnoses.

you haven't said what type of doctors she has seen -

I would suggest going to an orthopedic spine specialist (or neurosurgeon spine specialist) - the surgeon may order an MRI or CT Scan and maybe some other tests. this does not mean surgery but they are the best at reading the results.

once that is done the surgeon can answer your questions.

Please let us know what has been done so far - the more information you give us the more we can assist you - take care - Joy~~
 
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LittleMaria71 replied to bj1208's response:
We've only seen the Dr. once so far. My daughter came home from camp complaining about her body hurting. We took her in thinking Tick. That's when they Xrayed her back and found the fusion by mistake. We have an MRI scheduled for Sept. 28th. The military drs. are never in a hurry for anything to be done. I have to go to a dr. that takes our Tri-Care Prime or we could be stuck with 1/2 the medical bills. They suggest a pedeatric neroligist. Are their neroligist that are also neurosurgeons?
What could be the alternitive if she doesn't have surgery? Tring to find some stretches that wont hurt her back.
 
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bj1208 replied to LittleMaria71's response:
hi -i'm not sure what they can do since this part is already fused - they may try to go in and stabilize it with rods; plate, screws etc - there really is no way to tell until she has the MRI and the doctor reviews it -

pediatric neurology does consist of a wide variety of care so they can do surgeries - but I think I would see if there are regular adult physicians since your daughter is 17

since you are military (i know how slow they can be) - you may want to search in your area and see if there are any orthopedic spine specialist that take your ins or even a neurosurgeon spine specialist - even though your daughter is 17 she may be able to be seen by a regular adult physician - i would take the MRI's and go see one of those and get as many opinions as you can - if you can find a doc that takes your ins and IF surgery is recommended I think it would be better to have one of those do it rather than a military doc (sorry but have head too many horror stories - not surgeries but problems).

please let us know what the MRI shows (be sure to get the written report) - take care - Joy~~
 
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inpaintwo responded:
Hi, at last i have found someone else with the same problem,i have just found this out on monday and like you waiting to see a specialist,the additional problem i have is that my sacrum has moved which is been giving me the pain , i have been to a chiropractor who twisted me over from one side to the next and told me that my sacrum is now back in line and i was to build up my core to hold it in, so i have been going to pilates class for weeks and have got to the top of the class , but i am still in ,so went and had a x-ray which found out this problem , i am 46 years old and have only had back pain for 18 months i find if i keep moving its not to bad , but if i rest i suffer more . your daughter has had her scan now is there any news on what can be done?????
 
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An_189576 replied to inpaintwo's response:
Hey there, have been in severe pain with lower back only for about 3 months, the pains are not so bad once moving around, but getting up out of the chair or off the couch makes me look like I'm riddled with arthritis .. which I am not. I had ultrasound done to rule out female problems, as I am at that age (49), but this was a non-event. My GP was utterly unhelpful - just said I'd have to live with the pain .. which I just don't accept. Went to see a Chiropracter yesterday who has x-ray machine - was able to show me on the x-ray that my L5 has, probably since birth, fused with my sacrum, there is also an S bend slightly higher in my spine, this is probably the real location of the pain I've been experiencing (pulling on muscles on one side constantly - so they are jaded), my hips are also slightly out one side being lower than the other .. its very early days yet but i am hopeful that at least now we know whats going on we can work on a resolution. I do lower back exercises every morning, I do swm a lot, cycle and run - although my running has been cut back to under half of what I was doing simply to see if this will help - this is my lifestyle, and whilst I dont mind having to adapt, I dont want to stop everything. The Chiropractor mentioned orthotics also which I've never had .. I am hopeful as its getting to the stage where I cant remember what it feels like to be pain free.
 
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bj1208 replied to An_189576's response:
hi and welcome to the support group -

before doing any more exercises it would be beneficial for you to have an MRI or CT Scan done - and to see either an Orthopedic Spine Specialist or Neurosurgeon Spine Specialist - this does not mean you need surgery but they are the best at reading MRI/CT Scans - once they examine you they can offer the best treatment plans - those could include pain management; physical therapy; chiropractic care; aquatics therapy etc., Spine Specialists are best at referring to the proper therapy treatments as they know what is going on with the back and will know the proper treatments.

if you need to be referred to the spine specialist and your primary care doctor refuses then it's time to get a new primary care physician - remember one golden rule: We employ doctors and should find new ones if we are not getting the proper care -

please keep us posted - take care - Joy
 
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papabear2010 responded:
have been lookin for the same answers i hope that u got a reply cause i havent. i found out that my lower lumbar has been enfused since brith and it has caused arthritis so be prepared for that to creep in when she gets older. plz contact me at this email and let me know what info u have on it plz ty.
 
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kaerumz responded:
My L5 has been fused to my sacrum since birth as well. I have always been very athletic and am now at 35 years old starting to have A LOT of lower back pain just on the one side and it goes up to my neck and my right leg gets locked up too. Not positive there is a connection but will go to an orthopedist soon to find out. I'll keep you posted.

Side Note: I actually have a 3D model of my lower back that shows the fusion as I used to work for a Rapid Prototyping company and had them convert the CT scan and build it for me.
 
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inpaintwo replied to kaerumz's response:
Hi , i have the same that my L5 is fused to my sacrum , not sure if its been since birth or not surgeon never said , but i can tell you now anyone else who has the same thing , its all down to your muscles i have been fine for about year now and i have one every 4 weeks , a sports massage , its painful at the time but nothing that you cant take , the pain i had was all down my left side , but its gone now and i havent looked back since , i go running every day for 30 minutes and have lost 1 and half stone in weight , just make sure you get someone who knows what they are doing , if no pain then there not doing it right
 
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amvan78 responded:
I'm 34 years old and found out last year that mine has always been fused, likely since birth as well. Had I not sarted seeing a chiropractor I never would have known. I've been living just fine with it this way. I consider it a super power or maybe those of us like this are just an evolved species or perhaps an anciet species trying to hold on! I plan to do nothing about the fusion as its always been this way and is not causing any issues for me.
 
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Ablesadvocare responded:
Hello,
I just came here looking for answers myself and let me tell you I was diagnosed with sondylisis back in 2000 after I broke my back in Iraq after jumping out of a plain. I have been fighting with back pain since. I just found out that my L5 is not connected to my sacrum in which at times ( more often than not) causes extreme syatic pains down the left side of my leg down to my heel. I was told it was a birth defect. I have many of exrays which never told me or the doctors anything until I found a doctor that was willing to give me an MRI. I have that apt next week.
I am sorry your daughter has to go through this at such a young age. I don't remember having problem when I was younger. But do to a traumatic event set things in motion. But I can tell you That the only that has relieved the pain is Hydrocodone 10/500 and antiinflamitories. Occationaly I have to go to the ER for a strong dose of an Antiinflamitory just so I can walk upright again. Over the years it has caused arthritis and Allot of severe pain.
Just keep pushing the doctors to explore options. I am hoping to have my L5 Fuzed for it is not seated like it was supposed to. If I may explain. Your sacrum, when you are born is in layers with the L5 being the top of an upside down tree. As you age your sacrum begins to fuze itself together like your cranium dose. Once you reach a certain age The L5 will seat itself and set the foundation for correct spinal growth. In some cases the L5 Dose not seat causing Spondylisis and possibly slight scoliosis or iregular curviture of the spine.
I have lots of info on this so please feel free to ask.
 
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Timmerjon replied to Ablesadvocare's response:
I too have a fused sacrum on the rightside & was born with it too.Throughout the years especially childhood I can remember feeling pain in lower back & down my legs especially after track & field competitions & other sports activities.The Dr.'s checked me out for everything..even for polio & couldn't find anything & said it was just growing pains. I would take children aspirins & they seemed to help..Then as an adult I found out that vigorous activities such as baseball, running, bowling and simply working for a living would cause the pain to increase & would take aspirin like candy, but it did help somewhat. Then around the age of 39 I injured myself at work while on my knees cutting up cardboard to place in a compactor I was too close to compactor & when I stood up I hit the compactors door latch which was sticking out too much..I hit it right where the sacrum is and this was in 2002..Having a fused sacrum predisposes a person to pain & inflammation upon a injury or a traumatic event to this area. I have had pain everyday for the last 11 years..it does not go away..every step you take, movement you make inflames it.I quickly realized that taking narcotics like morphine,percs, oxy's & even tylenol 3"s did nothing except mask the pain & once their effect was gone the pain was even worse & sacrum was inflamed even more..due to your ability to move.. Any manipulation of the spine/back by a Chiropractor/PhysioTherapist only inflames it more..I have found that the only thing you can do is to manage your pain by taking anti-inflammatory pills (N-SAIDS) ..make sure you take with food.. this is extremely important..you still feel pain, but it is at least more manageable & bearable..you need to feel it so you don't cause more damage so no narcotics..plus they are too easy to get addicted too..you have to learn to walk,bend ,lift, sit and every aspect of your life more slowly & consciously monitor every step & movement you take..use your arms. legs.and so on & no using the back to lift, keep the core muscles strong & proper posture..One of the things that aggravates mine the most is the movement involved in doing the dishes..so what i do is I do half to a full tray & once i start feeling pain, I will go laydown for a few minutes & return later to finish..Having a really hot bath helps alot..Relaxing in a hot tub helps too but with both once you start moving around again you usually start feeling pain again within 10 minutes or so..So basically the only thing that can be done is to get your pain to a more manageable & bearable level..learn & live with your limitations & realize that it is everyday movement that is causing the inflammation and don't use narcotics to mask the pain..manage it..understand it..As I am getting older the pain is getting progressively more, the disk & spine are degrading faster,the degeneration is becoming more severe, takes less to cause the inflammation..so now I will take a couple ASA #1 which has a low dose of codeine & available over the counter around supper time with food..never take the same time as the NSAID which I take with breakfast everyday..I hope this has helped someone understand this condition more..I remember looking for answers back in 2002 and never found any..had to figure things out for myself..take care all..
 
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Timmerjon responded:
I too have a fused sacrum on the rightside & was born with it too.Throughout the years especially childhood I can remember feeling pain in lower back & down my legs especially after track & field competitions & other sports activities.The Dr.'s checked me out for everything..even for polio & couldn't find anything & said it was just growing pains. I would take children aspirins & they seemed to help..Then as an adult I found out that vigorous activities such as baseball, running, bowling and simply working for a living would cause the pain to increase & would take aspirin like candy, but it did help somewhat. Then around the age of 39 I injured myself at work while on my knees cutting up cardboard to place in a compactor I was too close to compactor & when I stood up I hit the compactors door latch which was sticking out too much..I hit it right where the sacrum is and this was in 2002..Having a fused sacrum predisposes a person to pain & inflammation upon a injury or a traumatic event to this area. I have had pain everyday for the last 11 years..it does not go away..every step you take, movement you make inflames it.I quickly realized that taking narcotics like morphine,percs, oxy's & even tylenol 3"s did nothing except mask the pain & once their effect was gone the pain was even worse & sacrum was inflamed even more..due to your ability to move.. Any manipulation of the spine/back by a Chiropractor/PhysioTherapist only inflames it more..I have found that the only thing you can do is to manage your pain by taking anti-inflammatory pills (N-SAIDS) ..make sure you take with food.. this is extremely important..you still feel pain, but it is at least more manageable & bearable..you need to feel it so you don't cause more damage so no narcotics..plus they are too easy to get addicted too..you have to learn to walk,bend ,lift, sit and every aspect of your life more slowly &consciously monitor every step & movement you take..use your arms. legs.and so on & no using the back to lift, keep the core muscles strong & proper posture..One of the things that aggravates mine the most is the movement involved in doing the dishes..so what i do is I do half to a full tray & once i start feeling pain, I will go laydown for a few minutes & return later to finish..Having a really hot bath helps alot..Relaxing in a hot tub helps too but with both once you start moving around again you usually start feeling pain again within 10 minutes or so..So basically the only thing that can be done is to get your pain to a more manageable & bearable level..learn & live with your limitations & realize that it is everyday movement that is causing the inflammation and don't use narcotics to mask the pain..manage it..understand it..As I am getting older the pain is getting progressively more, the disk & spine are degrading faster,the degeneration is becoming more severe, takes less to cause the inflammation..so now I will take a couple ASA #1 which has a low dose of codeine & available over the counter around supper time with food..never take the same time as the NSAID which I take with breakfast everyday..I hope this has helped someone understand this condition more..I remember looking for answers back in 2002 and never found any..had to figure things out for myself..take care all
 
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hypertrev11 replied to kaerumz's response:
I have the same symptoms and causes as you do. I see your post was 2 years ago so I was wondering how/what you are doing for treatments? I just started getting adjustments for the curvature of my spine by a chiro. He said my curve is 18 degrees and his plan is to push it back until I get to about 10 degrees. I don't know if I like this plan or not.


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I also have had surgery for L5S1,protruding disc for sciatic pain. Everything was fine for a year. Then the pain came back and the doctor ... More
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