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ask: 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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Alison Beaver Guide

Hi indiana mama,
I can't believe all of this is happening to you! I do have a few questions:
1. Why did your epidural take 2 hours and 9 attempts? What did your doctors and anesthesiologist say about the cause of this?
2. It would be difficult to say if one thing caused another thing (epidural causing spinal injury...I guess that's what you are asking)?. Perhaps your underlying medical conditions were the reason for the difficult epidural, or it could be the other way around?

I didn't read how you are being treated, except with pain medicine. It sounds like you have gone through every avenue, and I'm wondering what treatment options (surgery, for instance?) have been presented to you?

Even with a diagnosis of arachnoiditis, there is little treatment options for this condition. There are conditions that are just called "chronic pain", and it sounds like this is what you are being treated for...is that correct?

I have not heard of any spinal injuries caused from an epidural, as the epidural does not actually come close to your spinal cord (although it feels like it does!). There can be complications from an epidural, but I have not seen the link between an epidural and arachnoiditis.

I hope to hear back from you, and hopefully we will hear from other women who are going through similar chronic pain, and hear how they are helping to treat their symptoms. Do you feel that you need any additional resources (there are many for chronic pain; it just sounds like you have been through many different types of doctors and tests already).

February 25, 2010 - 2:49pm
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Anonymous (reply to Alison Beaver)

dear alison b,
thank you for your interest. first let me say that the only reason they gave me for having ( with the epidural) any problem is.... "well, this is being stubborne" then they sent in another what i can only expect was another student , and said the basicly same thing after trying. the docter that came in next who was a "real dr" kept appologizing for my pain and for the fact that others were having trouble...he explained to me that he got stuck in a c-section for over an hour. it then took him several more sticks at this point i had been hunched over for quite some time in a sitting position with a small nurse having problems holding me up. i was about 220 lbs and 25 when i gave birth and the nurse was a 130 lb and in her 50's... she got very fatigued and the doctor kept harping on her to hold me still, after each "poke" he would then wiggle it somewhat then take it out...i am assuming that he couldn't get it in. eventually he got it in and we waited till i started to feel numb but it only worked on one side i believe it was the left that was numb the nurse then called the doctor back in and we repeated the process again...and again we waited it worked and i started felling relif from the excruciating pain i had been enduring from the labor...i delivered a baby girl not long after she was perfectly healthy. afterwards when the doctor who did the anestgia came to check on me where i complained of a headache and back pain...he said it was normal to have these symptoms....in the following few weeks i noticed back pain, but was mostly concerned about this pounding headache that was day in and day out...it just never went away. i told all of the nurses and doctors that did thier routine calls through out that first week, they didn't seem concerned so i wasn't. i should mention that i was considered a high risk prenancy do to the fact that i had endometriosis(which is not all that serious) my high-risk ob/gyn said on my next pregnnancy i could see anyone , basicly there was no need to think i ever was or would ever have a high risk pregnancy. so it wasnt an underlying condition.
as to the second part of your question i was told that i wasn't a candidate for surgury. i am not exactly sure why but this specialist was supossed to be an expert. his recomendation was phys therapy, lose weight and pain management....all of which i have done....i lost 63 lbs in only 6 months and have kept it off. i went to the therapy 3 days a wk then 2 then 1 for a total of about 10 visits.. the said that since my range of motion decreased that they thought i sshould see someone for the pain managment part. i began seeing another very well liked dr in the medical feild, who everyone swore by including my mother who is very dismissive of any other dr i have ever known this women to go to !!! he had his own pain management clinic, nice new and modern..every gadget and thing-a-ma-bob he could get his hands on. i remember thinking this is going to work so i commited myself, husband and kids of getting in the car driving for 1 1/2 hours every two weeks to stay the night at my moms house so i could get my injections. the first thing he did was actually go over with me in his office, my x rays and mri of lumbar spine. i hadnt had anyone do that before. he said i had 2 synovial cyst but said they were not a problem and that the source of my pain had to be because of a slight herniation/ prolapse. he also stated that i had narrowing of the disc space. he said he could help with facet injections to start...3 injects later , no resluts, the next step was 3 injections into the disc, again nothing. each of these series of 3 were spaced out by 2 weeks. so at this point he suggested that we do a radio-frequency nerve ablasion. we did that was the end of last year. and up till this point it was for chronic pain
my doctor reccomended me going on disability becuase my condition has only worsened in time. but i havent given up yet. i love to work i like my job and customers and love the team i work with and my job is a one of a kind, meaning it is fun exiting and it pays very well.. while me and my husband live a somewhat country lifestyle meaningthat we don't have alotof bills and try to keep things simple so we can afford to make double house payments and go on vacations a year. the american dream right???!!!!!!

as to your 3rd ? here are some web sites i found just by googling "arachnoiditis &___________"
this is where so far i have got all of my info from.. wheni talked with my pcp about them she also thought that it sounded like what i have been going through, so my next apoinments are going to be up at the cleveland clinic , seeing 4 different specialist overnight trip to one place with at least another avenue and correct diagnosis. i also have plans to at least take the results ,slides, disc and all other reports and findings down to an expert listed in all of the web searchs i found through this, his name is dr antonio albrete , after talking directly with him, i am excited to have him review everything he is in alabama so i have to call him with a good time for me to come down for a consult w examination. i will kepp at that are interested in a posting on this site

i am suprised though that you havent at least heard of the complication during an epidural in the lumbar area if it was depo-medrol this can also cause arachnoiditis. very well documented in law and medical journals that i founf on the web....you just have to keep on googlin'........lol.........and find the right words and phrasing to get what you want!

sorry for such long responses but i get distracted easily and have to reread things alot. by the way i used to be a quick typer without the need for spell check, but now , no way....let me know if you would like more info and as always if anyone else has a simailar story please contact me

indiana mama

March 3, 2010 - 1:30am
purplehaze_ck (reply to Anonymous)

i was just wondering if you saw my comment on your first post?? you did not respond so just checking...i have the same problem as you. let me know if you see my other post.

March 3, 2010 - 12:00pm
purplehaze_ck

wow!! when i read this, i thought, was this something i posted a while back? i too have wondered this same question. 2 years ago when i had my first child, the anesthesiologist could not get the epidural placed right, and he tried over and over as well. my family and i took pictures a few days later, and all in all we could count close to 30 different hole pokes...and that is not counting places where he made multiple attempts in the same spot. my life is not the same. i have not been able to work and doing every day tasks is difficult. i too have been to pain docs, neuros, p.t., massage, ortho surgeons, etc etc etc. i dont get help, because no tests show any damage and also because no docs want to deal with something taht was caused by another doc. sometimes i will do ok for a few weeks, meaning, i can control the pain with meds, rest, heat and other tools so that it doesnt dominate my day. but than boom, all ofthe sudden i get a few terrible months where my life is miserable.

when this first happened, i did so much research, and the one thing i found that matched all of my symptoms and sounded like it could be caused by a needle going into your back over and over,, was arachnoiditis. but no one will listen to me when i bring it up. mainly, i think, because they dont know the answers. i am sueing the doc that did this to me, but his rebuttle is that there is no "standard of care" in his field. which means that there is no written rule that says an anesthesiologist can't poke you as many times as he deems necessary. even though, i have talked to soooo many docs who have said that 5 times is the max time they woudl ever attempt to place the epidural. the doc who did it to me doesnt even know hwo many times he tried.

i dont know what else to say other than maybe with my lawsuit i can get a "standard of care" in place. what idiot would do that to someone's spine/?!!! i am not all about suing doctors but i cannot describe how this has changed me. i was just thinking today, i want my life back!! i want my own mind and my own body. i cant live around and inside of the pain anymore. but the sad truth is that i might ahve to. i also know that it could be worse, but for me, when a lot of my hopes and dreams have been crushed becuz of my physical and emotional limitations, that doesn't help. please keep in touch with me. maybe we can find others who have been through this. in my mind, its like we have something that hasn't even been discovered or named yet, but that does not mean it should be ignored and written off as "nothing." if more people came forward maybe they would realize that this is real and it is NOT OK!!!!!!!!!!!!!! i am so sorry for what you are going through. i dont have a lot of the symtoms that you have such as the urination probs, but i do have literally NO sex drive and headaches all of the time, my appetite is messed up and i almost always feel sick to my stomach. i also have tried exercising, people act like i am lazy or something, but when i exercise it is so painful. but i dont care because if it will prevent me from getting worse i will do it. thats all i can hope for now, is that it does not get worse. i hope you dont either. i hope to hear from you again!!!

February 25, 2010 - 4:06pm
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Anonymous

hello purple

YES everything you said is the same as me. in the past 7 weeks i have only had 9 good days , meaning that i wasnt crying the whole day and that i could do some simple task arond the house. people dont realize how much you back controls everything....from tying your shoe , making a cup of coffe, and yes SEX, i havent had any sort of a sex drive for quite some time now . i was also wondering about any cognitive problems you have had. the reason it is taking me so long to get back to people is that i have extreme decreased memory. i have to constantly remind myself of what it is that im doing. for instance during jusst he little bit of typing i have done here, which has taken 30 min so far, i have stopped mid sentace to try and think what hte hell am i typing....aslo the other day i went to the hospital to pick up my records i looked at my list, my husband helps me make them so i casn just get through the day, saw that i was suposed to go to the front desk and ask for records ...so i went to the front desk asked for my records and got directions, very simple ones go take the first left and it is mid way up the corridor. now i must say looking back that the corridor was quite long . but anyways i took the left then got going and as i was looking at the names listed on all the doors i got very confused, i knew i was trying to go to one of these doors but suddenly could not remember why. i looked down at my list and thought " okay i must be in the hosp" so i started looking for the front desk again. this confusion lasted about 20 min until some one walked out and asked if they could help..once i got back to my car i bawled crying thinking i had just expierienced some form of dementia...me and my family have decided it will be best if i dont drive anymore. have you had any problems with memory like this. i would love to know. i find this part, meaning anything to do with my thinging abililtys is the hardest for me to get through to the doctors.
Also i just went and met with some malpractice att. who are goign to look at my case and see if thereis anything there. by the way where are you from ?

March 5, 2010 - 11:15am
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Anonymous

wondering if anyone can help me with a question...i got my report back from the cerebral spinal fluid (csf) and the main thing is that they found systemic inflammatory responce...but i have had my blood checked time and time again for inflamation, even on the same day as the cfs test...so what does that mean.

March 6, 2010 - 3:01am
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Anonymous

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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Anonymous

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
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Anonymous

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
Diane Porter

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:

http://www.spine-health.com/treatment/spinal-fusion/postoperative-care-s...

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

May 12, 2010 - 9:06am
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