congenitally fused c5, c6....anyone have/heard of this?

congenitally fused c5, c6....anyone have/heard of this?

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Anonymous (not verified)
Title: Member
congenitally fused c5, c6....anyone have/heard of this?

To make a VERY long story short I will skip the details of how I found out that I was born with whatever it is that I have, and just ask for any information anyone might have on the subject. My c5 and c6 are fused, I just learned about this about a year ago and have been told that not much can be done to fix it. I would greatly appreciate any feedback. If you'd like more details I'd be happy to share. Thank you Smile

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flyersdon (not verified)
Title: Member
do you have pain from this

do you have any pain or symptoms from this?

bestkeptsecret21 (not verified)
Title: Member
yes, oh god yes.... at times

at times the pain is crippling. It has affected my muscles as well. I have arthritis in my neck, hips, hands and feet. I've had many random symptoms that have all lead back to this.

tammyc
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Last seen: 1 month 1 week ago
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Joined: 06/20/2008 - 7:55am
wow

I've heard of people being born with levels fused but don't really no much about it.Why is there nothing they can do about it,is it too dangerous to separate the levels and put in discs?

bestkeptsecret21 (not verified)
Title: Member
Well I've only known of my

Well I've only known of my condition for about a year. In that time I've been seeing my chiropractor and i've told my MD but he didn't seem too interested. I've been dealing with another illness up until about a year ago when i had my tonsils removed as well. I've been debating about asking for a referal from my MD to go see a specialist and try to see if there is anything that we can do.

avaccaro
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Last seen: 4 days 1 hour ago
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Joined: 07/28/2008 - 8:31am
I have a congenital fusion as well.

Hi BKS,

I was born with T4-T5 fused, and every doctor I've talked to has told me it shouldn't cause any problems and it's nothing to worry about.

When I saw my MRI films a few years ago and saw the fusion, I didn't know what to think of it. I was a little scared, to be honest, when I saw a bunch of healthy discs and then just two vertebrae on top of each other with a tiny black crack in the middle. I asked my neurologist, orthopedic surgeon and pain management doctor about it and every one shrugged it off. I do have pain around that area, but I also have a T8-T9 herniation, so that could be why.

None of my herniations were caused by any accidents or lifting incidents or anything of the sort. When I was around 12 or 13 I started getting sharp pains and gradually over the years it has gotten worse and worse. Right now I have a herniation at T8-T9 and a reherniation of L5-S1 after a bilateral laminectomy, foraminotomy and discectomy two years ago. Although all my doctors have tried to tell me different, I am somewhat convinced that this congential fusion or whatever caused the fusion in the first place while I was developing, has caused my back problems.

Unfortunately, like you said, there doesn't seem like there is much that can be done. When doing research on congenital fusions a while ago, I read about cases where they will do surgery on congenital fusions to relieve pressure on the spinal cord or to correct stenosis due to the fusions, but most of these cases have been on people with Klippel-Feil syndrome. (http://en.wikipedia.org/wiki/Klippel-Feil_syndrome) That disease is usually characterized by 2 or more cervical congential fusions though.

I wish you the best. I'm sorry if I was rambling, I just wanted to let you know you are not alone Smile

Take care,
Amanda

bestkeptsecret21 (not verified)
Title: Member
thank you very much! that

thank you very much! that informationi was very as helpful and learned a lot more than i knew about this type of thing. I think my parents and i have decided that it's finally time that I go to see a neurosurgeon and "real" doctor to get the offical mri and other findings as opposed to just seeing the chiropractor i am currently. I don't feel better for very long after i'm adjusted, and the research i've done says that what i have will get worse with age and is degenerative. I just need to go get some answers!!

jean jaye
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Last seen: 1 year 7 months ago
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Joined: 09/28/2008 - 11:23pm
Congenital Fusion

Hi,
I also found out only 4 years ago that I have a congenital fusion at C4/5. It has caused stress and put more pressure on the levels above and below for movement. That is why I have 2 levels that have herniated in my neck. ( one above & one below) All this was discovered when I had a big flare up after wrestling with a wet towel that got stuck in the washing machine-( really!!) I also have DDD and arthritis and spondy. I have seen 3 Neurosurgeons who all said that I am not a surgical candidate. I also found out that I have herniations at T 5/6 & T 8/9- don't know why?????????? I do have lots of pain symptoms! They are all on one side that correspond with the herniations. The pain is all on one side of the neck that radiates down to the middle of the Tspine and diagonally to the shoulder blade. The pain also goes from the neck to the right shoulder and the trap muscles. I have trouble with my right arm and right shoulder and right hand and digits. I have had success with the Fentanyl pain patch, topomax, weekly lidocaine trigger point injections, warm pool therapy, flexeril, and a wonderful husband. I must say that part of this is my fault. I was stubborn and didn't want to go on pain meds. I tried 5 ESI's, 1 medial branch block, & 1 rhizotomy/ denervation/ radio frequency nerve ablation. I waited too long in pain and got frozen shoulder syndrome, before I started the heavier meds. Everyone's situation is different, and many people go for years without even knowing that they have fusions. I had symptoms, but I was so busy raising my children that I didn't put the clues together. I just started to modify my behaviors. I went 40 years in denial- LOL!

My pain management program and therapy are working! I wish that I didn't need the meds, but I am thankful that I have relief. The goal of the therapy is to delay increasing the dosage of the patch. I know that I told you the LONG story- sorry. I am also thankful that I found this site. I have met so many wonderfully supportive and kind people, and I have learned so much. If you have any questions, feel free to PM me anytime!!!

Good Luck & God Bless,

glo
Smile

rednikki17 (not verified)
Title: Member
Hi

I've recently been diagnosed with a congenital cervical fusion in c5 and c6 too. Had neck problems since my early 20's (i am nearly 40 now!!)but no xray until a month ago when i was finally diagnosed (hooray for the NHS!). Some DDD to C4 too. I'm seeing a Chiropractor now and start Physio next month through work (i am a nurse Sigh ) I'm getting used to living with the pain which for me is more like a constant really dull ache. Some neuro probs too in my hands. Does anyone else have problems with muscle fatigue? I feel exhausted most of the time now. Trying to keep positive though and as active as i can. Any tips for excercise?

AZ Mama
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Last seen: 3 years 4 months ago
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Joined: 07/06/2011 - 1:18am
C5/C6 partial congenital fusion

After having horrible headaches which I was assuming as tension headaches because of how they would start, I decided to start with a chiropractor. He did xrays and said I had a C6/C7 partial fusion. My range of motion was good, at times I would get dizzy though which was weird but the headaches were awful! After a few adjustments I didn't feel much better. Then came the neck traction device. OUCH! I did that twice and since then I have limited range of motion in my neck and chronic pain in my neck but the headaches have lessened a bit. A trip to my primary Dr. and more xrays show it is a C5 and C6 partial fusion. He prescribed Soma which I would take at night, and I got a special pillow... not much progress. He suggessted PT but I'm scared to death to have anyone else manipulate my neck now. I'm not sure what other route to go. I'm tempted just to be medicated since the options aren't really out there...

AZ Mama
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Last seen: 3 years 4 months ago
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Joined: 07/06/2011 - 1:18am
Muscle fatigue

I too have this issue. I feel like lifting my arm or a leg and having it weigh 500 lbs. I thought it was exhaustion and went to Dr. for that concerned too about depression, I was told to take an adrenal revive vitamin supplement that is compounded in a pharmacy. She was certain that's what was causing my issues. I'm not certain I'm seeing the results with it though...I can usually make it through the day with aleve and ibuprofen, but by the time I get home I'm done... Very frustrating. Supposedly having this be congenital why now at 32 is it an issue?

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