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Chiari and Bulging Discs
Hi Everyone I need some help with deciphering a term my NS used on a e-mail to me this morning....I told him about my pain in my neck and shoulders and asked him to double check my cervical spine to rule out the posibility of the bulging discs causing my pain....Here is what he said...."You do have mild disc dz at C34 and C45" What in the world does "dz" mean? Any idea? I also asked him to double check what it means to have not as much curve in my neck as there should be because( I forgot the medical term) that is mentioned in my MRI Report..... This is what he said: Change in curvature of cervical spine is expected from disc dz and chiari malformation....Haha so does that mean I have a double whammy? he said the disc bulging might need more attention as I get older too...Now that I think about it too my car accident XRAY whn I was diagnosed with whiplash aver a year ago the ER dr. mentioned my neck doesnt curve as it should too.....I wonder if I had the Chiari then too???.NICE! Just what I want to hear....Ugh!! My symptoms are slowly getting worse the bad neck and shoulder pain along with just moving my neck from side to side and up and down is really getting on my nerves and slowly getting worse....In his last e-mail to me about 2 weeks ago he said it would be reasonable to move the surgery date forward....Should I ? I just really want the holidays with my family while I'm out on leave from work and I am trying to tough it out.... Any advice would be awesome.
COMMUNITY LEADER
I do not feel anyone dealing with this needs false info....not that everything about surgery will be bad...many of us have had positive results....those that have not are the ones that yell the loudest.
Use the list of Drs to do your research on NS's .....keeping in mind the list is not meant as a referral nor an endorsement for those listed.
Since as I said I have EDS I tend to heal slower and I used all my FMLA time and was forced to use LTD and when that happens the employer terminates the employee....
Check to see how much time you have available to you...sick time, vacation time etc....
I hope you are able to convince your Dr to do more testing....
Thank you for your quick response. No, they did not do a CINE MRI- trying to convince my physicians to do cine is nearly impossible- there was no notable obstruction to CSF flow, by virtue of open ventricles from a prior brain MRI with contrast (forgot to mention that) in 2013 that was concurrent with the C-Spine MRI. There was also no notable syrinx in the C-Spine anyway- but as you noted, that was all that was imaged. Maybe when I have further consultation by a NS they will opt to do additional imaging of the entire spine to rule this out. I appreciate your honesty! Thank you. :)
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
You mentioned you had a MRI, but of what areas and have you had a CINE MRI?
It is very important to know if you have a CSF obstruction....the size of the herniation is not as important as if it was disrupting CSF flow...and if you have other related conditions like Syringomyelia....in order to to rule out a syrinx a MRI must be done of each area of the spine...cervical, thoracic and lumbar as a syrinx can form anywhere in the spine....many Drs only look to the cervical spine....
I had surgery and m much better for having had it....I do also have other related conditions that I am still dealing with...so it is best to know about them b4 so you do not think surgery failed you if you continue with issues post op.
Also find a true Chiari specialist to help you...they are well informed and experienced with not only Chiari but ALL related conditions,
Did you have a MRI or xray after the MVA? I am thinking about whip lash as I know first hand how that can affect us...I had it.
To help prevent post op issues...know ALL the conditions you have b4 hand , have a true Chiari specialist and know it will take time....we need to be patient b4 getting back to life as "normal" as that can also cause set backs post op....we all heal at our own rate....so listen to your body should you have surgery and do not rush to get back to living normally...allow as much time as it will take...you will have a better chance at recovery.
12 weeks?..that may be for the incision to heal but not to get back to work depending on what you do...12 weeks is a short time frame and I know I never could have returned to work in that time frame....
Sorry not sure I am giving you the encouragement you were looking for...but expect recovery to be longer .....and again make sure ALL related conditions are ruled out b4 you schedule surgery.
Hi Selma, I have been following this community for a few years. I was DX in 2013 with CM, by MRI- done for constant headaches. I am followed by a Neurologist that I like, and for the past 2 years have been taking Topomax (which has helped) and most recently Botox injections (which really improved my headaches immensely) I had initially decided to go this route to manage the daily pain, making a deal with myself- that until I noticed any neurological deficit, I would only then consider surgery. I have already had 2 NS consultations. Unfortunately I was in a MVA and my symptoms worsened. I started to notice numbness in my left arm, with some pain shooting down my arm into my hand/across my shoulder and pain in my upper thighs. I also have numbness in my feet. Another MRI was ordered and it showed that the chiari had actually gone from 1.0 cm to 1.5 below the foramen magnum. I now also have disc bulging at C5, C6, & C7. I guess my concern is just whether or not to go through with this. I am worried about the invasiveness of the procedure and the possibilities of the deficits afterwards. Do you know many people who seem much different afterwards who can't do what they used to be able to do before they had the surgery? I show horses as a hobby with my daughter- I would hate to give this up. Plus, I work- a lot! I worry about the downtime. I hear that it is about 12 weeks or better? Just looking for some encouragement before I see my Dr. Thanks!!
COMMUNITY LEADER
The loss of the curviture of the lordosis is usually not considered a big deal as I said bcuz it can appear just bcuz u were lying down and they will say it is most likely positional....the other cause can be from tight muscles or an after effect of whip lash....But it is muscle related and PT can help resolve it if that is the case.
Oh I agree with u, my quality if life had changed drastically and that was my driving force to find the right dr.
I had my tonsils cauterized...I have not heard of neone that had issues as a result and as of now I am not having ne ill effects...yes u will have a patch, this is y I always say make sure u do not have EDS, those of us with it run a higher risk of rejection. Ask what type of patch he uses.
"selma"
I am soooo glad U like Dr Won.
Oh I agree with u, my quality if life had changed drastically and that was my driving force to find the right dr.
I had my tonsils cauterized...I have not heard of neone that had issues as a result and as of now I am not having ne ill effects...yes u will have a patch, this is y I always say make sure u do not have EDS, those of us with it run a higher risk of rejection. Ask what type of patch he uses.
"selma"
I am soooo glad U like Dr Won.
Hi Selma,
Thank you for your quick response I truly appreciate it. In response to your question I had my Brain MRI in February. The funny thing is I just got my own copies of all of my MRI pictures on my file about a week and a half ago along with my reports. I knew about the bulging discs from my NL but not about the Loss of the cuvriture of the lordosis until I got my report. I think it is intresting that I have a combo of 3 things going on and only 2 were mentioned. I understand about surgery not being a cure but truly feel that if I don't do it my quality of life will deteriorate as it has recently if not even more and I am opting for surgery as a preventative measure as well. That way at least I can say I tried to help myself even if I don't get results. I just don't want it to get worse and if surgery is the only thing that can potentially offer the opportunity to either slow or stop the progression I think it will be worth it to me. I think you are right about the permanent nerve damage I really don't want that. I think based off all the research I have done and stories I have heard about people being denied surgery or some type of relief or acknowledgment of their symptoms I am lucky to have been offered the opportunity for some potential relief. I can see for myself in my MRI that I do have chiari and bluging discs now that I know what to look for and feel comfortable with Dr.Won now. I am fairly certain if I see another NS they would probably only recommend pain management which in turn will just allow things to potentially get worse. Dr. Won recommended PFD, and cauterization of the tonsils... Has anyone heard any feedback on the procedure of cauterizing the tonsils? Wont I have a dura patch too if he cuts into the dura and cauterizes the tonsils?
Thank you for your quick response I truly appreciate it. In response to your question I had my Brain MRI in February. The funny thing is I just got my own copies of all of my MRI pictures on my file about a week and a half ago along with my reports. I knew about the bulging discs from my NL but not about the Loss of the cuvriture of the lordosis until I got my report. I think it is intresting that I have a combo of 3 things going on and only 2 were mentioned. I understand about surgery not being a cure but truly feel that if I don't do it my quality of life will deteriorate as it has recently if not even more and I am opting for surgery as a preventative measure as well. That way at least I can say I tried to help myself even if I don't get results. I just don't want it to get worse and if surgery is the only thing that can potentially offer the opportunity to either slow or stop the progression I think it will be worth it to me. I think you are right about the permanent nerve damage I really don't want that. I think based off all the research I have done and stories I have heard about people being denied surgery or some type of relief or acknowledgment of their symptoms I am lucky to have been offered the opportunity for some potential relief. I can see for myself in my MRI that I do have chiari and bluging discs now that I know what to look for and feel comfortable with Dr.Won now. I am fairly certain if I see another NS they would probably only recommend pain management which in turn will just allow things to potentially get worse. Dr. Won recommended PFD, and cauterization of the tonsils... Has anyone heard any feedback on the procedure of cauterizing the tonsils? Wont I have a dura patch too if he cuts into the dura and cauterizes the tonsils?
COMMUNITY LEADER
Hi Devin, DZ is probably displazia.(sp)... same as buldging....
Loss of the curiture of the lordosis?......ur cervical spine is straightening out...sometimes it is positional....bcuz u were lying down for the MRI...sometimes it can be from tight muscles in the neck.It can also be the result of whiplash.( that's how I got mine)
Chiari in most chiarians is congential......a MVA can trigger the symptoms or herniation to grow.U may have had chiari when u had ur accident, but u may not have had a herniation.
How long since u had ur last Brain MRI?.....it is also possible for the herniation to grow rapidly and could be y u r feeling worse.....if ur MRI is 6 months old or better get another one and have it compared.
Only u and ur dr can make the decesion, but do remember that surgery is not a cure....u will always have chiari...some if not most of the symptoms may remain.Surgery is to stop the progression of symptoms.And if u wait too long it isi possible to have perm nerve damage.
"selma"
Loss of the curiture of the lordosis?......ur cervical spine is straightening out...sometimes it is positional....bcuz u were lying down for the MRI...sometimes it can be from tight muscles in the neck.It can also be the result of whiplash.( that's how I got mine)
Chiari in most chiarians is congential......a MVA can trigger the symptoms or herniation to grow.U may have had chiari when u had ur accident, but u may not have had a herniation.
How long since u had ur last Brain MRI?.....it is also possible for the herniation to grow rapidly and could be y u r feeling worse.....if ur MRI is 6 months old or better get another one and have it compared.
Only u and ur dr can make the decesion, but do remember that surgery is not a cure....u will always have chiari...some if not most of the symptoms may remain.Surgery is to stop the progression of symptoms.And if u wait too long it isi possible to have perm nerve damage.
"selma"
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