Fusion caused by birth defect

Fusion caused by birth defect

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Anonymous (not verified)
Title: Member
Fusion caused by birth defect

Hi everyone,
I discovered this site a couple of days ago and now I’m addicted to it!! Been reading loads of postings and gathering valuable information and advice. Everyone seems so nice; it’s good to know we are not the only person in the world who has these conditions (cos it sure feels like it sometimes).
Anyways, a little bit about me: I’m 32 year old female living in Milton Keynes (UK), I have 2 children and I’m training to be a teacher.
Approximately 5 years ago, all of a sudden I could not move my neck. To cut a very long story short, I eventually found out I had been born with C3/4 fused together (a birth defect). This is when the pain started; up until then I had no clue about this defect. Had lots of treatments in the last 2 years, injections, epidurals..Etc. and eventually had surgery last February to fuse C4/5 (wasn’t successful, pain worse than ever, but don’t let this put you off.. i don’t regret the op, and there are lots of success stories RE this op. ). I think they really don’t exactly know what is wrong with me, but they try these procedures to see if it helps. Due to have Radiofrequency Ablation (RFA), so any advice on that would be great.
My main question to everyone is; has anyone else been born with a fusion? So far, it seems everyone’s problems started with an accident. (Or am I the only freak)!! Lol
Best wishes,
Debbie

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lulusheart
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Last seen: 1 year 11 months ago
Title: Member
Joined: 06/19/2008 - 5:36pm
Pain in common!

Smile hi and welcome to the forum! Wave we are here to offer you support and answer what questions we can. that is quite a problem you have now. i certainly hope your next procedure helps with your pain. even though i do not have your problem we do have pain in common. ~X( i really hope you enjoy the forum. if you have any questions just throw me a pm. good luck! Jenny Smile

tiggerleelee (not verified)
Title: Member
Thanks jenny

It sure is something we all have in common. It is a bit strange though, that pain unites us all!! But I’m so glad I’ve found people who understand me and know what I go through on a daily basis. It really has boosted my spirits, reading some of the postings on here. A little while ago I was so down because it was the first time I had actually thought ‘this is me forever.’ I think I was kinda hoping that my op would really improve things and id never thought about the future until recently (think I was a bit in denial).
But hey, I always think ‘it could be worse.’ I just think of all the things I do have: like my precious children.
Anyway, thank you for the support, you take care.
Debs

J.J.Grey
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Last seen: 2 years 6 months ago
Title: Member
Joined: 06/23/2008 - 8:45pm
Welcome to SH

I have something very similar to you in that I am sacralized at L5/S1. Which is the same as fused and yes, I was born that way. My doc says that it should not be causing my pain and if anything it makes that area stronger but I don't know. I suffer alot of pain in my tailbone as well as my low back and leg. I know that my low back pain comes from my facet arthritis but don't know why that would cause pain in my tailbone and down leg to knee. I am sorry to hear of your failed surgery. You are not alone there either. I had a failed microD last December . And like you even though it was failed, I do not regret it as it did help my leg pain somewhat. I have had numerous RFA's and have had much success with them. If you have questions, please let me know and I will be glad to answer. You are right in that this forum has been a godsend for many of us to meet people and make friends that truly understand what we are going through. Good luck and I look forward to seeing you around the forum!

tiggerleelee (not verified)
Title: Member
Tx for reply

It’s kinda strange to find comfort in others who have the same ‘problem’ as me. I’ve never heard about anyone else who has been fused since birth, welcome to the club!! lol
How did you first discover that you had L5/S1 fused from birth? I have been told that the fusion from birth has caused the disks above and below to 'work overtime’; to compensate for the missing disk. Apparently this is what causes my pain. Plus i have other things going on in there that I can’t even pronounce!! Lol
I’m hoping that this RFA is going to dramatically improve my pain levels. How many RFA's have you had? What happens during the RFA and is it very painful? I asked my consultant if the RFA would be worse than the Trigger-point injections, epidurals and scapular nerve blocks I used to have (boy, were they soo painful. I had mine done awake so i didn’t have to stay in hospital) and the consultant said 'no, it won’t hurt as much, they (the trigger-point injections etc.) are nasty injections.'
Sorry to bombard you with questions!!
Take care, Debs

genac08 (not verified)
Title: Member
Identical problem

Very weird!!!! I am 25 years old and was in the er yesterday with serious neck pain. I have just found out that I have the same thing as you!! Fusion between 3/4!!! No, you are not the only freak! Scary that yoiu have had to go through all this, theysent me home with pain medication and muscle relaxers. I was under the impression that this was farely normal to be born with this birth defect and there wasn't too much to worry about. Since you have been going through this for 5 years, what do you think my next step should be?

Alex G
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Last seen: 2 years 6 months ago
Title: Member
Joined: 02/15/2009 - 6:49pm
re: Cervical fusion defect

Debbie-

I have two spinal birth defects (0ne of my neurosurgeons told me they often come in pairs) one two level fusion at C2/3 and another at L-5/S-1/L-6. My neck is fused in one spot and I have my lumbar spine and part of my sacrum fused to my hip. On the lumbar, I have 5 lumbar disks on one side, and 6 disks on the other. It threw off my entire spine, so I have spondylosis, and spondylolesthisis, plus an S shaped spine. I have severe pain, multiple surgeries, DDD, and adhesive arachnoiditis due to so many procedures, and a ton of pain.

Many orthopods and neurosurgeons over the years have commented that I should not hurt so much, but how would they know, as most have admitted to me they have not seen many if any patients such as myself. I have an intrathecal pump for pain, and often it controls the pain. It often does not control the pain, as the magnitude of the pain is frequently overwhelming.

I am hopeful that you find some relief, one way or the other for your situation. I wish I could find some rationale for deciding whether I caused this defect or if my parents DNA or genes caused it or if it was just a freak of nature. I wish someone or something were culpable even if it turned out to be me. I need to know who or what caused this mess. I have had 30 years of severe pain and would like some answers!

Alex

Alex G
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Last seen: 2 years 6 months ago
Title: Member
Joined: 02/15/2009 - 6:49pm
re: Cervical fusion defect

By the way, along the way, I have had 29 epidurals, over 10 nerve blocks as in trigger point or facet joint blocks. The last 7 or so were very painful and not helpful (as in pain relief) at all, 6 spine surgeries from L-4/5 to C/2, including a 4 level decomp (cervical) and discectomy, a lumbar fusion (3 level) an L-2 cauda equina surgery, a thoracic disk discectomy, etc. I have had over 12 myelograms, 2 of which with the dreaded pantopaque contrast, over 18 MRIs, 3 CT scans and other assorted x rays and unhealthy tests, spread out over 29 years. Sorry I did not remember to include all of this. Might as well add memory problems to the list, as well as frequent migraines these days as the arachnoiditis proceeds.

Alex G

J.J.Grey
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Last seen: 2 years 6 months ago
Title: Member
Joined: 06/23/2008 - 8:45pm
Welcome to SH

Yes, I was born with L5/S1 fused together. My doc keeps telling me that he does not think that it causes any of my pain but I really wonder about that. I have had excellent results with a rhizotomy for my facet joint pain. Just do not expect immediate relief as the nerves do take a little while to actually die. Usually my pain gets worse before it gets better with this procedure. It usually takes me 4-6 weeks to get the full benefit from this procedure. Good luck and please keep us posted.

littleloulou (not verified)
Title: Member
I was also born with a l5,s1

I was also born with a l5,s1 fusion and have pain in my lower back, buttocks , tail bone, down my leg and can have a twitching in my knee when the pain is bad. my doctor knows i'm in pain and keeps trying to find other reasons for it but nothing turns up. I have even had a bone scan and there is nothing no arthits (sp)or any other explanation. have you found anything that works? if so let me know I am looking for something and preferably not too scary lol.

Stacia718 (not verified)
Title: Member
Same or Similar Lumbar Birth Defect

Alex,

OMG...I can't believe I have found someone who has the same/similar issue!!! I have a 6th lumbar vertebrae and disc as well. I also am fused only on the Right side at L5-L6 and L6-S1. I have had a discogram where they inject dye into the discs to increase the pressure and determine if they are causing nerve pain. (Prior to that no one believed me that I was hurting.) Well low and behold, my discs at L5-L6 and L6-S1 are the problem, I about flew off the table as the pain shot down my leg. I then had an MRI so they could see the discs with the dye in them and they were bulging/herniated (6 years ago) and I was told that because of the bones growing together (fusing) on the right side, they were slowly crushing my discs. I have pain that radiates out to my right hip, down my but and leg, I have confirmed nerve damage in both legs, more so in the right, and I hurt all the time...I get weird twitches and I trip over my right foot a lot!!! I think the key is to find the right Doctors!!!(Lemme tell ya that took a while, but I finally did!)... I just want to know what caused this birth defect and remember a chiropractor telling me it was related to Spina Bifida, but I can't find any data on that. My brother also has the same or similar defect. (There is a chance this was caused by my father's exposure to Agent Orange in Vietnam, but I have to find out if this deformity is related to Spina Bifida for sure.)

I also have a fusion at C3-C4 (surgical) due to a car accident. Now that deal is causing me to loose multiple discs in my neck as well. I have a ton of pain and my arms are always falling asleep, numb, tingling...so that's that! Basically I've been told, once you do the surgery, it only leads to more as the spine becomes compromised by the change. Wonderous!!

Anyways that's my two cents. I'm so glad I found people who understand...it so makes the journey a tad easier!!! (

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