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

By Anonymous February 24, 2010 - 11:47pm
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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

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Anonymous (reply to Anonymous)

thank you for your comment. i was wondering how many and what type of doctors you have seen? also how long ago did this happen to you? i am scheduled to go to pain managment for pain meds now ifi cant get some releif then i'll be filing for disability. are you able to work? my main problem right now is that my doctors are starting to say thing like " we may nver know what's happeing" and " it's so rare that it is most likely not arachnoiditis" i just cant understand why a doc would say to a patient who they have seen decline for almost 2 years to basically just give up and accept something that we dont know whatever it is.
i hope that things get better for you, by the way what have they diagnosed you with ? and i know that the pain is overwhelming and i know the feelings of hoplessness and dispair but dont give up hope . know that there are people out there that really do understand what your feeling. i wish you all the best
indiana mama

June 9, 2010 - 9:20pm
EmpowHER Guest

hello christina,

thank you , thankyou, thank you for your well wishes. we do have an awaful lot in common. i dont have a lot of pain in my upper body, just one shoulder in paticular...but in saying that i dont know if i have ever told a doctor about that shoulder because it is soooo minute compred to my back. here lately (even before the surgery) it just feels as if it is literally broken, with every step and on "bad days" it hurts no matter what,
you cant stop trying to find a doctor, if for nothing else your sanity. and i have always been a believer that if you have been wronged you should be compensated. why is it that you think you only have 8 months left....have you been diagnosed with anyhting that the docs say is caused from the epidural. thats the first step then states have different statutes but most dont start until you recieve info of being hurt by the epi. just make sure that you get a reputable atty. and know that it will be many years before an offer is made...this is how my lawyer explained it to me. when i met with an atty he went over everything, including all my medical records and he said that he found many breaches un care at the hosp. but that without a diagnosis we couldnt sue. he put it to me this way....you have a big case once you get a diag and if that diag could have been caused by the breaches in care from the hosp. thats my main problem with the lawsuit, no doc will even give me a dx or even try to figure it out . its like when i go to one doc they just send me to another one and when i come back the only thing they can say is " well what did the other doc say" this has lead to my dislike and distrust in the medical proffesion.
but dont give up hope, even if the only hope we have is that it stops getting worse. also do you keep a pain diary? i find that it helps keep me sane...and when i have a good day i try to look back and see what could have made a difference.
well i hope that your pain gets better, and yes the one thing i have found out is make your payments to the doctors that you cant afford to not have. i know its hard but try to work something out with them
indiana mama

May 16, 2010 - 1:31pm
EmpowHER Guest

i just realized that i have not been signing in when i leave a post...so for all of those who are reading this some of my post are not listed as indiana mama, but except for 3 comments from this point i was posting the rest...thanks and sorry for any confusion

May 16, 2010 - 12:17pm
EmpowHER Guest

oh my i forgot to mention that since i discon. the baclofen and the neurontin and the cymbalta ...things just got worse not better the waya that the world famous cleveland clinic was so sure of. i will say that my brain doesn't feel as much in a fog and memory has improved but nothing else. and for the things that have gotton worse...muscle spasms even more often. more burning pain in my hips and legs and newly in my feet. i did get put on lamictal for my depression and mood swings...lol my husband likes it it seems to control my mood at least. my rheumo doesnt know hwat to think...with only mildly posistive ana ...she has done other test that confirm an autoimmune component but which one evades her...and after 1 year trying to figure it out she's moving gotta go to another one now.
i am giving the surgery until one month post opp before going to every doctor i currently have and drilling them for answers. also i would like to mention that just for the skeptics..i only have my PCP give me any pain meds i would never want any new doctor to think i am coming to them for meds. i am lucky that my pcp seems to be the only one who really cares, that is probley cause she knew me before my labor and she has seen me in tears since then.

May 15, 2010 - 8:03pm
(reply to Anonymous)

oh my goodness indiana mama, i am so sorry to hear that things took a turn for the worse after the surgery. i dont know much about that surgery, but i do know that i think that if what we have is caused by the epidural attempts, i dont think there is any surgery that will help it. i am considering trying epidural steroid injections soon but as they didnt help you i am not getting my hopes up. have you tried neurontin in a cream form? it has helped me a little bit. but since your pain has spread so much it might not be of any use to you.

you are very brave for going through with the surgery. just remember, you are doing the best you can in each moment you have, so every day is a new scale of what you can and cant do. im sure that probably doesn't help much since you are in so much pain and have tried so many more things than i have. your pain also sounds worse than mine. from what i have heard and researched on arachnoiditis, i dont think it is very commonly caught on MRI unless it was a huge huge level of damage to the nerves, where as the epidural pokes are so minute that it is most likely not going to be caught on MRI or anything. i wonder if there is any hospital in the US doing studies on it or something. i have kind of given up looking at this point. i usually look for a while, get overwhelmed and frustrated and take a break from it for a while. i have to find a new pain doc, too, because i wasnt paying enuf on my bill or something. the nurse/office manager was harassing me and i finally told her it was not ok for her to treat me that way. but now i have to go through the process of the new doc search etc and although im not looking forward to it, everything happens for a reason so maybe the next one will actually help me. i wish there were more woman docs, i feel like they would be more understanding and empathetic.

are you pursuing a lawsuit? i am, although i also had to fire my lawyer a few months ago because he wasnt doing anything on my case and i only have 8 or so months left to be able to sue the doctor. its super hard to find a lawyer, too, and its so emotionally draining and hard to tell the story over and over. some times i just want to give up on that part but since i cant work anymore i have to at least try.

my back pain is spreading as well, up higher and into my rib cage and now i am getting pain and numbness in my right hand, i cant even open jars or hold my arm up for more than a few seconds and it feels like its going to fall off. i dont know if its related but i would jnot doubt it. i am also thinking a lot about having another child, or wanting to, but i am so afraid of being bedridden and in pain while pregnant, not to mention there is no way id ever get an epidural again. i dont know if i will be able to have another child, but i will adopt if i decide i cant carry another. it is sad but it will be ok.

there is a website called "healingwell.com" and there is a section for people with chronic pain. its a place to connect with other people who are in pain like us and i dont go ther too often but when i do it helps me get out of the depressed mode and realize that this is real and it is important and there is support out there. you should check it out!!

look forward to hearing from hyou again. i am purplehaze_ck on healingwell if you want to chat there sometime.
blessings to you!!! you are an amazing woman going through a very hard thing, but you will make it through and answers will come!!! take care and let us know how you are in a week or two.

May 15, 2010 - 10:20pm
EmpowHER Guest

thanks for the response and kind words. to the first, yes the surgery was to fix the only thing that has shown up on MRI. i should say that they could tell from the mri and confirmed with the surgery that no nerves were being impinged, there for i should only expect 60/40 odds of it working. but i was willing to take the risk i decided along with my family to trust the doc's and if they say that nothing is going on other than a degenerative disc (L5/S1)
to trust that they can fix it. this is soooo much worse now i cant even get up to go to the bathroom by my self. we went to the doctors 9 days post opp, the nurse took an xray we waited for him. when he came in he looked at the xray and only spoke to me for about 90 seconds. he daid the xray looked fine and reinterated that it was a 40 % failure rate and that no other surgeon would have attempted the surgery. funny he never mentioned that this wasn't normal before. then he left saying he would see me in 4 weeks. i am at a loss i think i am just going to go see a dr in alabama, when we can afford it ...lol kinda hard on short term dis. if anyone know s dr antonio aldrete would love to know if he is worth the money. thnaks for the site i will check it out

May 15, 2010 - 7:43pm

Indiana Mama,

I am so sorry that you are in such pain. You have been through so much in the last couple of years, and now having to have spinal fusion surgery -- and to have to heal in both front and back -- is so much to deal with. I wish I could send you a hug and some more pain medicine.

Hang in there -- you had major, major surgery and it can take new moms two weeks to just start healing from a C-section. I am hoping that as the abdominal muscles start to heal, your pain will start to retreat.

I have a question for you -- what exactly was the point of the spinal fusion? Was it to take care of the slightly herniated/prolapsed disc you wrote about before?

You may have found this web site on your own, but I wanted to point it out to you. It's about postop care for spinal fusion patients and what they can expect in terms of recovery:


Do you have a post-op appointment scheduled with your doctor?

May 12, 2010 - 9:06am
EmpowHER Guest

so it has been a couple of months since i wrote on here but here goes...as of today i am 1 week post -op from spinal fusion. and it has been horrible and trying to cope is even worse than before. i had expected to be in more pain while in the hosp. but when they released me i thought it would then be in less pain over the next couple of days..well the exact opposite. if i thought i couldn't live with the pain before i wouldn't understand how to if this becomes permanent OMG that is even too much to visualize. the surgeon said everything went well durring surgery and now we just need me to heal...oh yeah he did an anterior (stomach) approach, it looks more like a c-section. no matter what happens i would not reccomend this just because of the pain. i mean how much sense does it make to have your back in more pain from the inflammation and brusing of surgery THEN to add the horrible pain of slicing all your abdominal muscles. another thing i dont understand is that he sent me home with a presription of lortab 5.( the minimum) but during my 6 day hosp stay he had put me on oxycodone 10..2 pills every 4 hours which is a huge dose ( that is 3 times the amount i would use before the surgery...this is just perplexing that he would cut it down so much when my pain level hasnt come down much since then but also because i had the best results with the oxycodone for the past 8 months but i agree that this surgery was to get out of pain because i didnt want to be on meds the rest of life. i also asked the surgeon to see if he say anything that could have been caused from the epidural that could have been adding to my pain. when i came ot he basicly told me that he didnt go up high enough and that (in not so many words) basicly his reasons for the surgery had been accomplished. the only thing i was hoping is for him to find nothing so i could get this arachnoiditis thing out of my head. well any comments would be appreciated
indiana mama

May 11, 2010 - 9:42am
EmpowHER Guest

so the update is that they now think that all the medications i have been put on since the back pain started has now caused some reversable side effects mainly the neurological ones, the main goal is to get me off the neurontin, baclofen and oxycodone and put on new meds that wont have the adverse reactions. however they could not explain the reason as to why i had the inflamaotory response in my csf. and as naturally to be expected they blamed some of my pain to an over exaggerated state and on depression....naturally i disagree. what i do know is that i hope when i get off this medication the nurological problems do go away so then we can work on the root problem the chronic back pain that radiates throughout the lower half. they want me to go to this functional restoration center in columbus for 3-6 weeks . not sure if it will be what we ultimatley decide, i am hopeing that something comes up closer to here, home. but i am committed to overcome what ever the hell this is . and i am willing to try anything.
please let me know if anyone has heard of these interdiciplnary funtional restoration programs...not sure what to expect

March 17, 2010 - 9:16pm
EmpowHER Guest

sorry i forgot to mention that my blood inflamation was normal limits but they found it in my cfs

March 6, 2010 - 1:52pm
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