Facebook Pixel
EmpowHER Guest

Can Arachnoiditis be caused by multiple attempts of epidural from labor?

By Anonymous February 24, 2010 - 11:47pm
Rate This

started complaining about back pain and headache immediatly after birth of first child in Aug 2008. Doctors in hosp did nothing so i figured it was normal. After 6 months of back pain and headaches every single day my husband finally made me go see our PCP a mri was performed and revealed synovial cyst and protruding disc. i hae exhaused every avenue of pain relief. every thing from facet and epidural injections to chiropractors and medication, massage and losing weight i also had my nerves cauterized by radiofrequency nothing has helped. it just keeps getting worse. i am having tremendous problems standing, walking, sitting . which is affectingmy job in which i stand and bend and twist all day. while i have not been diagniosed with arachnioditis, i just happen to come across it on the internet and think it matches my symptoms perfectly. basicly i have been i pain that has worsened since the epidural during labor. I have vericose veins in the location where the epidural was. i should mention that it took the doctors 2 hours and 9 attempts to get the epidural to work, during which i was sitting on the bed hunched over the whole time. my symptoms since then include debilitating low back pain started out only in the area of the injection but has since spead to all of my lower back my hips and legs. i have muscle spasms in all the previously mentioned areas and also a lot of twiching in the same areas. i now have numbness and tingling and burning electrical type pain from my back to my toes. i have started falling down due to muscle weakness. my pcp has done every type of bloodwork imaginable sent me to rheumo and neuro and pain managment docs who began to do complete work ups all of which turned out nothing. for a while they even thought i might have M.S or lupus or another auto immune . while i do have symptoms of ms, my mri of brain showed no lesions and my EMG was normal i am awaiting the spinal tap results but my neuro thinks they will be normal as well. my condition worsens every single day i have also started having urinary problems. i have to go all the time some days overy20 times, and when i get there i have to push very hard to make the steam start. and must continue to do so that all of the urine gets out. i am also having blurrred vision and extreme memory loss and thinkin problems. my question is it possible for me to have arachnoiditis caused from my epidural attemps. if so why haven't they seen it when i had the original mri of my back...or is it possible that the synovial cyst (2) they found could really be arachnoiditis. also is this caused by malpractice/negligence. anyone with same symptoms i urge to respond. before this i was independant and strong now i am dependant on others to help out with daily living and rely on meds to get through another painful day. info on meds now used ( i had never had any pain or nerve meds before this pain) Neurontin 600 mil 3 x day

oxycodone 10/325 4 x day-------they are planning to switch to morphine next week
baclofen 10 mil 3 x day
cymbalta 60 mil 2 x day

indiana mama

Add a Comment36 Comments

(reply to Anonymous)

hey sorry i havent gotten back!! we should just exchange real email addy's and then we could get phone numbers as well. ive been ok. meeting with a new lawyer tomorrow and a new doctor all in one day. wish me luck! trying to get set up for the myelogram. other than that nothing new is going on other than i started going to a counsleor and that is going really well. ive applied for SSD 3x now and have a lawyer for that as well. its a long and annoying process...and i probably wont get it but gotta try at least! hope all is well with you and send me your email if you are comfortable with that!

July 26, 2010 - 7:41am
EmpowHER Guest
Anonymous (reply to purplehaze_ck)

my email is [email protected] do me a favor and put arachnioditis in the subject so i will open it...cant wait to talk to you.

July 30, 2010 - 11:21am

Went ad had another MRI of lumbar and sag las week and the Dr wants to see me to discuss the results also the place where i have had all my previous MRI' ( exept 1) normally only gives me a disk to keep. But this time they gave me a disc and big films. Not sure why ,as they didnt give a reason. The staph infection still hasn't cleared up and spread a bit. The orthopedic surgeon that did my spinal fusion said that only less than 10 %of people like me after surgery recover. But at the same time he said that everything went okay with the surgery and he kept reminding me of the odds, and that i didn't beat them He told me my odds before surgery however he told me that I woudn't be worse off. Funny how much worse off I am. So they took me off the fentanyl patch, only because they weren't working very well, but they did help a bit. minly i wasn't comfortable with them being around the kids . i was worried that the patches would come off with out me knowing it and the girls would think that they were stickers. so they put me on oxycontin...im on day 3 with pain as if i am not on medicine at all. it is flat out not working at this level. it is 20 mg. they also put me on 100 mg of topamax for the nerve pain but it seems to only help the headaches. which that it self is an accomplishment. i saw a new neurosurgeon that thinks i would benefit from a spinal cord stimulator. i dont think i want it just because i dont want anything in my back again! but from research and other chronic pain sufferers some people have success. So i dont know what i will decide and i am going to wait until the next MRI is complete and know the reults.

indiana mama

July 1, 2010 - 9:50pm

hey christina,
ok so here's what i found out....
rhizotomy is the same as radiofrequency nerve ablasion, the same procedure i had done, which did not work.
also the SPECT scan you talked about is actually only decent at reveal abnormalities that are very current. i only researched it for about 10 mins because everything i was reading talked about how it missed major things up to 60 % of the time. so basicly most dr's and hosp render it useless. it seems to only be used at chiro and sports rehab offices. by the way who recc these to you?

indiana mama

June 21, 2010 - 7:20am

i could be writing the same words as you...only i havent seen as many docs becuz i lost my insuracne for a while and couldnt afford to go to any for almost a year. i have heard many scarey stories about back surgeries making things worse rather than better, adn it all boils down to it is becuz they are trying to fix the wrong thing!! why is it so hard for a doc to say, this is what COULD hace happened when the needle punctured these parts so many times. it is becuz they dont want to get involved with a lawsuit. i have called like 20 lawyers in teh past 2 weeks. it is so frustrating. then i have my other docs secretary withholding my med refills becuz i cant make big enuf payments on my bill. have you ever had a myelogram or SPECT scan? those are two tests my doc recommended and i think i am going to get those asap. or at least the myelogram. you should look into them and ask your next doc about it. the neurologist i saw would not do a nerve conduction test on my back becuz he said the nerves are too intricate or something? so i dont know. i honestly do not know. i just think this is teh way it is going to be and we have to learn to manage it. i also saw an acupuncturist that did some sort of electro machine on my back that is supposed to stimuolate nerve regeneration? dude we totally have nerve damage. end of story. i have a slightly degenerative disc as well but from the research i have done pretty much everyone has the amount that i have and it wouldnt cause thsi much pain. have you tried epidural steroid injections? also looking into a rhizotomy, where they cauterize nerves to stop them from being in pain. just ideas maybe you can talk to your doc about them. i am so sorry your doc did not warn you that the surgery might not work or may make thigns worse. what a shitty doc. so manhy of thme are. and i live in MT and they are even worse here becuz their pay is so much lower to work here.

hang in there. when does your statute run out? i have like 7 months left on mine. losing hope there. but all i can do is try. if either one of us ever gets any leads we will help eachother!! take care

June 17, 2010 - 5:45pm
EmpowHER Guest
Anonymous (reply to purplehaze_ck)

hello christina,
make sure that you look into a myleogram...remmeber any foreign object into the subarachnoid space can cause arachnoiditis or cauda equina syndrome. but if you decide to just make sure that the dye isnt oil based or was it water based??? one or the other. research it and just make sure that you are informed.
as to epidural injections. i wouldnt do them again for anything. reember my very first post i tried them for many months and they never helped me at all. my mother on the other hand does get partial relief from them for about 2 to 3 weeks. however it is supposed to last 3 months. her doctor lets her do it every 2 months but from what i know that is the earliest the government will allow doc;s to do it. the main problem with this procedure is that it uses DEPO-MEDROL.. depo medrol is known to cause arachnoditis. the makers who hold the patent for this drug along with the FDA have notified hosp. and dr's not to use this medicine anywhere around the spinal cord, because of the risk of developing arach. i didn't know this until after i recieved them. anything that has special labeling and packaging for caution....? i also don't like the fact that dr's are allowed to use medicines for what is called off-label purposes. it is not right that they do not give , us, the patient the right to research and choose through informed consent. if i had been given this info ( that depo medrol could cause this horrible disease and that the fda and the makers do not approve it to be used ths way ) i would have never agreed to this procedure. as for rhizotomy? i had a procedure that was called nerve ablasion..which was a catrerization of the nerves of sort. basicly it takes the outside layers (sleeves) of the nerve off so that the actual nerves themselves become thinner and less likely to be pinched or impinged upon from the facet joints or vertabrae. i again had absolutely no improvemnt. i havent done alot of research about the SPECT but i will nad get back to you.
i think you really need to get into see new dr's and get some fresh ideas about what is the souce of your pain. as for me i have and will not give up my search until i have a diagnosis that myself and the dr feel confident about . as i said before everything that they have said that they see on mri they follow up saying.. but that shouldn't be causing you as much pain as what you have.
also ..nerve conduction and EMG. make sure that your test is complete. meaning that they test you legs and back and arms and neck. mine only tested 1 leg and every dr has said that it wasnt enough to make a decision about nerve damage. on the other hand the dr who did the test said it was enough. i will now need another test done. i have also researched this is conjuction with arachnoiditis, and it is not uncommon to have a normal nerve conduction and EMG and still have arach.
also do you have any autoimmune aspects. has your PCP or reg doc taken blood work to look at rheumotology..such as ANA or RNP or CRP or SED. if so ..the results? after these simple test is when all of my other test came. so maybe you need to start at step one. many arach sufferers have a double diagnosis of lupus, multiple sclerosis or mixed connective tissue disease. all of which i have been looked at or diagnosed with...lol then the diagnosis reversed
good luck and keep me posted
indiana mama

June 21, 2010 - 12:51am
EmpowHER Guest

hey ladies...so, am wondering if we can get together and find a lawyer who will take our cases together. seriously, these doctors cannot get away with this just because there is not a for sure diagnosis to pin on the damages. im trying to find a lawyer right now and it is absolutely rediculous. they say it is too hard of a case...arent they supposed to be good enough at their job to take hard cases? the only diagnosis i have gotten and its just a guess, is complex regional pain syndrome and or intercostal nerve damage or inflammation in the area of the epidural. im ready to give up on the lawsuit but with the pain so bad every day, i cannot give up. what are you guys doing about that part of it??

June 1, 2010 - 12:14pm
EmpowHER Guest
Anonymous (reply to Anonymous)

well here is what a top lawyer told me.... by the way he has actually tried and won suits for arachnoiditis....he says after reviewing all of my medical history that he can prove the mal practice but not the injury and you cant have mal practice if there isnt a diagnosis to support that it was at least 51% or more caused from the malpractice ( in our case the epidurals)..so in my case students were unsuppervised with me, which is a infraction. while the shouldnt have continued wile having so many problems that doesnt mean that they have caused damage..........HA HA HA i know how you feel . but the bottom line is we just have to look for the answers even if it takes multiple kinds of docs, just cause we one neuro doesnt mean we cant see another one. also i am going to see a neuro specialist at the university of indiana hopefully something someday will come up. ya know the not knowing is the worst, i hate when people ask what is wrong and the only thing i can say is " i have a bad back" or " deg disc disease"..which is all the docs can say to attribute any pain to. but in the same breath they say that it shouldn't cause as much pain as what i have. my mom said something to me the other day that makes alot of sense. maybe we all need to go out and look for " young" doctors" some young hot shot that hasn't been tainted by the medical profession.

indiana mama

June 9, 2010 - 9:49pm
EmpowHER Guest
Anonymous (reply to Anonymous)

so here is the update . becuase of the extream pain the newpain management doctor put me on fentanyl patches. not sure how i really feel about this. they do help with keepin the pain at the same lvelbut are hardly making it tolerable i havent had very many level 10 pains exept in the mornings and after a short nap. which sounds like it would be working. and is has allowed me to stay asleep a little longer. however it stll only keeps my pai n around a level 8. which isn't enough improvement to d muchmore tan what i was doing.......nohng!!!!! so i gave him a call to se if i could get n earlier appointment but i was no go. i dont understand what is going on. i also requested another new MRI afte the surgery. still waiting to here back on that. if you had told me my pain would have even had the slightest possability to get worse from the surgery i wouldn't have done it. even if something went wrong during the operation i dont know if i could go through with another surgery . i can not endure any more pain. i am going to see a new neurosurgeon at the end of the month along with the pain managemnt dr again and the orthopedic surgeon. i feel as though my life revolves around dr's. no let me change that. it DOES revolve around dr's . i also hae decided to see the university of indiana neurology department and rheumotology department . i am tired, so very tired of dr's not knowing what is going on. everyone seems to say that my pain can not be from degenerative disc and degenerative joints but it must because it's all they can find...what a contradiction. i also feel that most doc's wont truly look at my symptoms as part of something going wrong with the epidual. it is as if they don't know the rare complications that could have gone wrong. all i want is to be thoughly investigated. i want a new mri an new emg and nerve conduction. the one i had before has been critized by everyone for not being completed becuase it only had one leg done 4 times with the needle. the doctor that did this test also never tested my back. i have tried being very submissive with dr's letting them make their own conclusions as to what is going on. i have also voiced my concerns about specific problems such as arachnoiditis. they have seen me on bad days where i fail all the clinical test and been very emotional and crying in the office. they have also seen me on good days where i am strong and full of optimism. is there anyone who has a diagnosis of rare nature that took multiple doc's to figure out, also how long did it take. my worst fear is that one day after my statute of limitation runs out that will be the day that any doctor gives me a diagnosis that was caused by epidural. up till then i guess it is in the experts hands to inform me . thank you to all of those that read this blog and as always if you have a similar problem please, i urge you to respond. maybe we can unite and actually get somehting figured out...

indiana mama

June 17, 2010 - 11:45am
EmpowHER Guest

This DOES happen, it happened to me. No anesthesiologist will admit it becuase they don't ever see patients after they maim them, and it's hard to find a lawyer the way this disease works. It has ruined my life. I was a happy, busy corporate lawyer, the breadwinner of our family, and a botched epidural (and/or blood patch to treat the subsequent spinal headache) with my second son changed my life forever. Worse, this is progressive so it's not as if the damage is done and you learn to deal. You watch yourself get worse every day and live with fear of how bad you're going to get. 2 neurologists have finally admitted (although they won't write it down on a chart or anything) that it's arachnoiditis.

This happened to me at the University of Pennsylvania in Philadelphia-supposed to be one of the best hospitals in the nation. And I'm married to a doctor who was working there at the time- so I thought I was getting the best care possible. Nope. They botched it so bad my dural sac was filled with blood (they did an MRI a week after labor when I could barely move that showed a subdural hematoma and blood collected at the base of my spine). An epidural in the wrong hands will devistate your central nervous system. I wish I'd understood all this before. I know it rarely ahppens (thank God, for all those who this has not happened to). but it CAN and DOES happedn. Oh, and the epidural never worked anyway- I felt every bit of labor, and then was left with progressive pain and weakness so bad some days I don't want to live anymore.

May 17, 2010 - 5:52pm
Enter the characters shown in the image.
By submitting this form, you agree to EmpowHER's terms of service and privacy policy
Add a Comment

All user-generated information on this site is the opinion of its author only and is not a substitute for medical advice or treatment for any medical conditions. Members and guests are responsible for their own posts and the potential consequences of those posts detailed in our Terms of Service.

Bulging Disc

Get Email Updates

Bulging Disc Guide


Have a question? We're here to help. Ask the Community.


Health Newsletter

Receive the latest and greatest in women's health and wellness from EmpowHER - for free!