Wednesday, January 02, 2008
Anyone out their with this same congenital defect? Born with hemi-vertebrae. Have had several diagnostic procedures, that lead to 4 spinal fusions with instrumentation. Spinal cord stimulator implanted in '06. Not taking care of the pain. More of an irritant than anything. Would like the pain pump implanted, however doctors tell me I am too young yet, (I am 40). They tell me the pain pump is for older people, and a last resort. Am taking several pain medications, but it is taking its tole on my liver/kidneys. Want to keep working and take care of my family. Anyone else with this same experience, or anyone with advice?
Hi Brenda,
Yes I was born with a hemivertebra between T11 andT12.I also have scoliosis and two cysts inside spinal cord.Is the hemivertebra the only birth defect you have?I am in chronic pain.I am contemplating surgery.They want to cut out half the hemi and put in rods and screws.I am VERY scared and not too sure how beneficial that would be?
Don't worry Brenda, you are not the only one. My hemi-vertebrae is between T8 and T9, I have scoliosis, my spine naturally fused itself from T7 to T11, and I have lived in chronic pain for the past 10 years. I'm now 23 and undergoing various testing to figure out what can be done for me.
Hi Jessie,
I am sorry to hear that you have the same problem, but with more to it. This is my only birth defect that I know of, other than defective nerves around it causing a lot of pain. I have had all the procedures known before having 6 back surgeries, including fusions with instrumentation, and lastly a spinal cord stimulator, which does not help me because of scar tissue that has formed around the leads. I am currently on Darvoct & Ultram for the pain medication for the pain, which gets me through the morning and part of the afternoon, but that is about it. I am 42 years old, married and have one daughter 14 years old, which keeps me going. I also work full time. However, I am not expecting to do that much longer. Just toooo much pain.
What are they able to do for you? Let me know if you would like - we could keep in touch with procedures and if they work or not. How have you been surviving to far? Taking any pain medications? Lets keep in touch. Best of luck to you! I wouldn't wish this on anyone. This is such a constant pain, and can never get away from it. Hang in there! Brenda
Well I went to my first neurologist yesterday because up until now, no doctor has wanted to treat me because of my age. I'm scheduled for multiple MRI's and EMG tests to start with. Then he wants to discuss surgical options, if I so desire. Most of the studies on the surgeries that I have read focus on posture and position of the spine. I just want to pain to go away. I don't care if I look like a hunchback, just no pain. I have taken all the non-narcotic cocktails for pain, but nothing even touches the pain. One doctor prescribed me Lortab 10/500's but those didn't even help. No one really has any idea what to do for me because of the natural fusion and my age. Right now it's just a waiting game. I will keep in touch when I find out my test results. It's nice to have someone to talk to.
Hi, I am 23 years old, and I have had neck, shoulder, and upper back pain for as long as I can remember. My parents even brought me to the chiropractor when I was in elementary school. After a wreck a year and a half ago, I went and had x-rays and an MRI, and they told me that I had congenital abnormalies of a hemi-vertebrae on C-7, which was that one of the bones was wedge shaped and caused a 45 degree angle curvature in my neck. The weird thing is that you cannot see the curvature unless I point it out. I was wondering if anyone had anymore information on this because the doctors did not tell me much about it or how or if it could be corrected. I am in pain every day in my neck and shoulders and it also causes me to have daily headaches. Thanks, C.C.
Hello C.C.,
I do not believe that their is much information out there about hemi-vertebrae. My Hemi-vertebrae was a little different that yours. Mine vertebrae is missing on the right hand side, but looks fairly normal on the left hand side. I have been searching for many years for information, but I think it is a slightly rare condition.
What are the doctors saying that they can do for you? Are you taking any pain medications right now? How have you been coping with the pain?
Hand in there!
Brenda
My 14 year old daughter was just diagnosed with scoliosis and they also said that she has a hemi-vertebrae and missing a rib too. They also saw a bulging of the spine around T11 and want to do more tests. They said she still has large growth areas around the hemi-vertebrae and are sending us to a spine surgeon for more tests on the bulging area and possibly surgery. Any advice would be helpful. cq.
I am sorry to hear that your daughter has a hemi-vertebrae. The only advise I can give you is to hear what the doctors say and try to get things corrected as much as possible before she stops growing. That is so very important. My daughter also has scoliosis, and it was caught too late; after she was done growing, and now it is too late to help her. She has a lot of pain every day. Your daughter will always have pain, however the doctors should be able to help make it less painful and slow the progression of the scoliosis. It will only get worse as she grows older. I had the spinal fusion with instrumentation, which has help stabilize my spine. Thier will always be pain, but would have been worse with out surgery.
Good luck to you and your daughter.
Brenda
Some of the best advice that I have ever had is to stay away from a Chiropractor! In addition to that statement, try to stay away from pain pills. Unfortunately, pills mask the pain, they don't cure it. Seek a credited back surgeon and take his/her advice.
HI. I am very interested in your story. My son was born 12/24/08 with hemi-vertebrae which cause his head to tilt. My husband and I are so nervous that this will be a debilitating issue for him. We have never met anyone with this issue. Please let me know how I can contact you to talk. Thanks!
You can contact me at raptrf@gmail.com. Hope all is going well.
Brenda
Hi; I have 2 hemivertebra, luckly they counteract each other (the triangular shapes each face a different way) I don't know what vertebrae# they are, but they are right between my shoulder blades. My first 2 chiropractors never mentioned the term hemivertebrae, or that the 2 were shaped differently. (I am 50 yrs old!!) after a car accident 2 1/2 years ago and going to my chiropractor for 1 year of treatments 2-3 times a week, I switched Chiropractors and SHE talked about me having hemiV ! I have been going to chiro since age of 19 for monthly maintenance. ANYWAY 2 1/2 years later and I still have constant WHOLE HEAD headaches and neck pain. Oh, and went thru 2 neuroligists and 2 M.R.I.s. NOW I am thinking maybe the head/neck MRI's didn't go down far enough on my spine? maybe the constant headache is from excasurbating(spelling) the 2 hemi's?? anyway, going to ask my chiro today when I go in about that. maybe can compare old chiro xrays with post accident xrays of that area.
I would never FUSE any of my spine. Anyone I have ever known that has done this has regretted it. not much help, but wanted to share my story.kim
Hello Kim,
Good to hear back from you. Sorry to hear you are still having problems. The comment that I would like to make is that I am not regretting having a spinal fusion. I did very much help to stabilize my spine. At least it is not going out all the time. However it did nothing to help with the pain. My thought is that with the Hemi-vertebrae (vertebra being defective), their must also be defective nerves around it. I have had every procedure possible with no relief. The only time I had relief was during one of the procedures they numbed the area, and at that point I felt no pain in that area for about 10 minutes. That tells me it is the nerves, but they see nothing on a mylogram with pinching nerves. Therefore, nerves are defective. Are you taking any medications to help with the pain? Pain medication does help keep the edge off so a person can make it through their day, but by later afternoon a person is so exhausted from the pain; that it just wipes you out. It sounds like your 2 Hemi-vertabrea fit together nicely, which helps your back to be stabilized, but something else must be going on. Don't give up, and keep looking for answers. That is the only way a doctor knows you are serious. Do not settle and stay on top of it. A life of pain is no fun, as you know. Their has to be an answer out there to help you. Brenda
yes brenda; i don't plan on giving up. I have only tried a few medications for pain. Nothing I tried touches it. I am more one for finding the Cause, ie; nerve damage or something. Very frustrated with Neurologists wanting to cover up the cause! I will probably try a 3rd neurologist soon! may try some naturopath therapies too? I went to acupunturist, it felt good while she was working on me, but pain has NEVER went away in 2 1/2 years, not even for a minute! very very frustrating but I am blessed that i can walk straight and the pain is usually 4-6 level with spikes up to about 8 and rare lows of level 3 on 1-10 scale. I am alive, walking,breathing, laughing and TRYING to enjoy life :) again, to everyone..........DON'T GIVE UP, keep asking questions and looking for answers!
I'm 27 and have suffered from thoratic scoliosis due to two hemivertabraes. I am going to go see a doctor of physical medicine today, and wondering if there is really anyway to help cure it. Has anyone had luck with surgery? I still am very flexible and can do daily tasks ok. I am just wondering if surgery has helped someone take the pain away?
Feel free to e-mail me : ryan_italiano@yahoo.com
-Ryan
Hello Ryan,
I have a hemi-vertabrea in the lower part of my back. My first surgery was to stabilize my back with a fusion. I am very happy with that, and yes it did help with my back always going out. However, it did not help with the pain in that area. They have tried everything so far except for the pain pump; said I am too young for that. They are usually a last ditch effort. They have come to the conclusion that it must be defective nerves in that area, and do not seem to know what to do for it. So....I am happy I had the surgeries and knowing that I have tried everything possible, but still have a lot of pain. Pain medicatioins help me get through a work day, so I am happy to be able to contribute to my family financially. I know it won't last for long, and I will have to quit work in order to survive with my pain level.
As for you; make sure and do your research. Find out your options, but knowing you will always have pain, but a surgery may help to stabilize and help some of the pain. I wish you well and if you have any further questions/comments, I am here.
Brenda
Dear Ryan; my two hemivertebrae are between my shoulder blades. Going to the Chiropractor and getting massage therapy helps to keep things in order(as best they CAN be) and helps keep the pain to a "liveable" level. I tried acupuncture too, felt good while she was working on me, but didn't last. I am sure I have nerve damage, from "double whiplash" car accident but TWO Neurologists had no solutions for me! very frustrating! If I was 27 I would only opt for surgery as the LAST option! but that's just me, I do not even like taking pain pills.
Brenda and Kim,
First, thank you for your responses. Gives me somethings to look into and think about. The new doctor wants to inject the area with a steriod, and if that doesn't help do botox to kill the muscles in the area that I have constant smasms. Have either of you had experience with these types of procedures?
Ryan
no i have not done those procedures. My aunt, who had the steroid injections in her neck said she regretted it. It did not help her pain. How bad is your pain level? Mine has been 5-7 lately, because I cannot afford the twice weekly massage therapy that I was doing and the chiro treatments. When I was doing those my pain level was 4-5. Look for a Nationally Certified Massage Therapist (or some other certification depending on what country you live in)
Ryan - yes I have had the steroid injections - this would be a diagnostic procedure to see if the pain is coming from that area. It did not work for me, however I have heard from people that it does help for 6 weeks and some up to 6 months. It helps settle down the nerves in that area. I think you should try it. It is not going to do you any harm, and it is the start of a long list of procedures that need to be done to try to figure out how the doctors can help you. They certainly will not want to treat you any further if you do not even try this procedure. It is not a pleasant procedure, but it is worth a try; and if it can give you some relief for a while, well than it certainly was worth it.
I have also heard of the botox injections. This too would be a procedure that would be worth a try. It would help you to determine if that is what is causing your pain. You may be surprised at the results. Good luck and keep us up to date with the results. Hoping it works!
Take care - Brenda
I do both chiropratic and massage therapy. It keeps me at about a 4-6 pain level. When I get a bad spasm nothing helps though. I go in on March 8th for the steriod treatment, I will let you know how it goes. Hopefully it helps more to the 6 months than 6 weeks! Hope you both have a great weekend.
Talk to you soon,
Ryan
Hi there.. I have a 3 yr old son who last year was diagnosed with hemi v... ((I will look back up exactly what it is)) They first said that surgery was a priority and we needed to get it done soon.. well here we are 10 months from when they said it, and weve had all the mri's and ct scans and all the other tests they needed but havent scheduled the surgery yet,,, I guess my question is a friends ciropractor got his xrays and says that we could possibly treat it with a brace and adjustments.. Will he still end up with the surgery/surgeries later on down the road? and will he have chronic pain for life?? Thank you for any answers you can give me on this!
Thank you,
Trevor's Mommy (Nikki)
Hello,
I would think eventually he will be needing surgery, but probably not until later in life. Now would be the time to get him in a brace, but at the same time keep his muscles strong. Those main core muscles are what is going to help him hold his back straight. I believe that no matter which way you decide to go, he will have pain. That will be an indicator as to when to have surgery. The main goal with surgery is the stabilization of the spine. It may not necessarily help with the pain, but will help him from getting or making worse, the scoliosis. Go with your gut instinct. I wish I would have done that with my daughter, but I trusted the doctors when they said she was done growing and bracing would not help. That was 3 years ago and she is still growing and her scoliosis is much much worse. Take into consideration all the advise from the doctors and use your best judgement.
Wishing you luck with your decisions.
Brenda
Ev,
My daughter was also born (Sept '09) with a hemi-vertebrae in her neck that causes her head to tilt. The neurosurgeon wants to do surgery when she is big enough, and has told us not to do physical therapy because it won't help, and could make things worse. I'm wondering how your son is doing and what doctors you've been to, and what information you've received.
Thanks!
I am so glad to find this support site!
My 19 year old son has a hemivertrebra, C5-6 partially fused. His neck pain has become constant. He saw a chiropractor and he found it send us to Neurosurgeon at age 15. He just said nothing you can do, it is congenial. No more information.
So I thought well its not serious, thank goodness. He said we could see chiroppractor, well that only helps for 3 minutes...by the time he walks out of teh office it starts hurting again. We sae another neurosurgeon last night, same story.
They just brushed us all. I can't bear seeing him in so much pain. He won't take pain medicine and he said it makes his head ring sometimes. He has even told me it burns so bad he doesn't know if he wnts to keep living, the pain is unbearable. I am seeking out information, researching and educating myself as doctors seem not to understand how bad the pain is! I am so upset that he is hurting. Read in this column someone is going to try botox, please let me know if it helps.
Baffled and worried. We have had 2 MRI's. Seeling doctor anywhere who can help!
Thank you, JoAnne
My son was born missing C1 and C2 and had a dislocation between c4 and c5. He underwent spinal surgery at 1 and a half. He had a spinal fusion from the base of his skull to T4. He is 4 1/2 now and very well adjust with no pain. I think he is the only child in the world with this issue.
He was diagnosed and 4 months and we had almost a year to find the best doctor in the world to treat him. Everyone we talked to pointed us to Dr Brockmeyer in Salt Lake City Utah at Primary Children's Hospital. He did a great job and saved our child's life.
Hi Brenda,
Im Andy 42 from glasgow, scotland,
I born with the last 3 vertebrae fused from birth, i was diagnosed when i was 33, i got worse when i was knocked down while helping pushing a car in the snow, she reversed over me lol and since then im in pain pretty much all the time. I take rememdine forte and celebrex for the pain but it last for long so i understand where you are going from. I still work full time and hope to keep working for as long as poss, not for me but for my 5 year old son.
all the best
Andy
I just found your post about your son. My 13 year old daughter just found out she has a Hemiverterbra at C5. She has always suffered from headaches. We did not realize until last week that the heads are caused from her Hemiverterbra. Can you please give me any advice and suggestions, plus share what the Doctors are recommending you do.
Thanks for your time.
Michele
Hello Michelle,
The doctors suggested spinal fusion. Make sure and see a specialist. The surgery did help to stabilize the area. It did help some but not completely. I am happy we did the surgery. Get a second and 3rd opinion.
Good Luck. Go with your gut choice. It will be right.
Brenda
My daughter saw a Spine Specialist yesterday. I was shock by the lack of information the Dr shared with us. He is starting her on physical therapy 3 days a week for 6 weeks, then talked about shots next. He said that therapy will help strengthen her neck, which could help reduce the headaches.
I am reading everyones posted, seems the older you get the more the pain increases. I am concerned for my daughter because she has a very defined curve in her neck and still has several years to grow. She has always suffered from headaches that continue to get worse.
If anyone could help by answering any of the question would be awesome! Her hemi vertebrae is at c5 she curves from c3 to c7 right now at 32%.
~ Since she is still growing do you think the curve in her neck will only get worse?
~ Would a spinal fusion reduce the curve in her neck and decrease her headaches.
~ Do you think since she is so young, will she continue to curve more as she grows, plus will the headaches and pain increase.
~ What is the best advice you can give us that in the future we will be thankful we did now.
Thanks so much for everyone's time. Talking to people that actually experience what my daughter is going through helps so much.
Thanks again and good luck to everyone!
Michele
JoAnne,
Not sure if my last message posted or not. I have done on the same things with neurosurgeons, and pain managment doctors. I have found taking muscle relaxers right before bed helps keep my spasms down the next day. I have vicodin on an as needed basis. Mostly don't need it, kinda getting use to the pain as it worsens. I am going to try out p90x, because I think some of my better months was when I was very physically active in high school with sports. Sports also added to the first time I had major pain as well...so we will see. Let me know how things are going.
Ryan Italiano
JoAnne,
I take two 10mg flexerils every night. It has really helped me not hurt in the morning and next day if I don't over extend myself. I work at Home Depot, so I often find myself doing a lot more than I should. Even when I hurt myself during the day, I wake up feeling better and relaxed. The flexeril helps me sleep through the pain also. Let me know how it goes.
Hello,
I read your post from 2009 about your son's hemivertebrae. My daughter's hemivertebrae was caught in our 19 week scan. She's now 7 months old.
I was just wondering you could tell me a bit about your son and how he is progressing. Does/did he have any other issues?
Any help would be much appreciated.
Our son was born 6/7/05 with a hemivertebrae in his C2 resulting a ignificant head tilt. We have seen a spinal surgeon 6 monthly who says he is reluctant to fuse the spine as it would restrict neck mobility. Apart from osteopathy, we have not used any other treatments but now that he is 6, we are starting to worry about the development of scoliosis. Would love to hear from anyone else with similar conditions.
Hi all
I am 57 yrs old mother of 2 I found I had hemivertebrae c5/c6 with cervical fusion congenital disorder on xray aged 20's, I have had pain from time to time but in the last few years more chronically & frequently.I have had various CT scans/MRI's & xrays. I find simple analgesia panadol/nurofen help & local creams=capsicum,tiger balm & the like help.I had a recent fall in the rain which really jarred my neck/spine so pain was bad for weeks. Physio helps with heat packs. I am now trying magnets as I know this pain & condition will not go away.I like to maintain a lifestyle with full time work & gentle exercise I now avoid any contact sports. I plan my life now from 6 to 12month plans & hope to travel in next few years as my husband & I enjoy long walks dependant on my pain better to do things now before old age kicks in...good luck to you all, try simple measures first.I am reluctant to try injections/surgery into that vital area..I also do tai chi but with modified kicks, good shoes are also a must as a cushion to your spine..happy to help in whatever way I can..:)