my story...25+ attempts at placing an epidural and life has never been the same....

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purplehaze_ck
New Member


Date Joined Mar 2010
Total Posts : 9
   Posted 3/12/2010 7:36 PM (GMT -7)   
So...first of all, part of me feels guilty because in reading a lot of posts, what other people have going on makes my pain seem like nothing!! But it is something. The problem is, I dont know what it is yet. Or at least i think i do but i cant get a doctor to do so.

Two and a half years ago i had a baby, and he is amazing and i am so blessed. i was in labor for about 28 hours before i finally agreed to the epidural. the anesthesiologist, we'll call him bill the dbag, just kidding, just bill, placed the intrathecal (temporary epidural) just fine and i was completely pain free. bill told me that he usually waits two hours and then comes back to place the catheter epidural, but in this case he had a c-section to attend and he would come back in 30 minutes.

he came back. he started to attempt to place the epidural and for some reason could not get it in. i was completely numb, so i could not feel what he was doing. he stuck the needle in and out of my back for about 45 minutes before finally moving a few inches up my spine and trying another place. i think he tried 5 or so timse there and finally placed it. all i have to say is his ego was in control, not the part of him that cares for and protects patients.

2 days later i was trying to breastfeed my son and it felt like there were bugs with razor blades for feet running up and down my spine. he denied it was from stabbing my spine with needle almost 3o times...we could only count about 25 hole pokes but he had gone into some holes more than once. so of course i took the necessary precautions in case he did indeed mess up my back. took pictures, documented things. but i hoped it was just fleeting pain that would go away.

in the beginning, i saw a doc i had seen in the past for migraines, and he wouldnt even acknowledge what had happened to me. i saw a neurologist an orthopedic surgeon i went to pt...i went to who i thought was a pain management doc but after like 4 visits he told me he was a "pain rehabilitation" doc. he gave me meds but none worked other than a neurontin cream and hydrocodone. i know my story pales in comparison to all of yours, but i need help finding out what is wrong with me. from the research i have done and what a few docs have told me, its either arachnoiditis or CRPS. maybe both? i dont know. and now im in the middle of a lawsuit that is just as stressful as the pain. my pain is at a 6 all of the time and goes to a 9 or 10 with activities, sitting, standing, or stress.

obviously i could go on and on. but right now i need to know: where do i turn for at least an accurate diagnosis? what do you do if you have no insurance? (my hubby lost his job a year ago and we lost our ins, and my treatment has almost completely stopped, as well as my ability to find a new doctor) once the docs know another doc did this to me, they dont want to see me anyways.

for all of you suffering, i send my positive energy and thoughts your way. any feedback would mean the world to me, or anyone who has had a similar experience.

purplehaze_ck
New Member


Date Joined Mar 2010
Total Posts : 9
   Posted 3/12/2010 7:38 PM (GMT -7)   
ps...i live in MT, so there arent that many good docs here. and i dont know how to find someone out of state....

mrsm123
Veteran Member


Date Joined Dec 2007
Total Posts : 1228
   Posted 3/12/2010 8:27 PM (GMT -7)   
If it is arachnoiditis, that can show up on MRI scans. It has to be specifically asked to rule in or out though, at least from my experiences . I also have it, and had great difficulty until I asked specifically if it was there or not. Since arachnoiditis is caused directly in almost all cases from a medical procedure and epidurals are one of the biggest causes these days, you might continue to have great difficulty since it is caused by a mess up by another doctor.
Go to one of the arachnoiditis sites and do some reading. Others may have some suggestions on getting the MRI done but if I were you, I would specifically ask for one. I also wouldn't disclose right away that you are in currently in litigation with this doctor. Doesn't mean lie outright but just don't offer the information right away.
I'm not surprised that neurontin helped some with the symptoms since if it is a neuropathic injury , those type of medications are what is used to treat it.
CRPS is an entirely different ball of wax and the pain caused by that is much different than the pain caused by Arach......
Best of luck to you, I'm truly sorry that you were injured at what should have been a joyous time in your lives. I am relieved though that you were smart enough to document those sites.
Sandi
PLIF/TLIF Fusion w/Instrumentation L4-5 Spondololysthesis L4-5.Laminectomies L4-5, foraminal stenosis L3-4, L4-5, L5-S1, herniations L3-4, L4-5, L5-S1, central canal stenosis L3-4, L4-5 and L5-S1
POST OP CES 3/30-06
Neurogenic Bladder and Bowel, bilateral numbness legs and feet
Revision for failed Back surgery, pseudoarthrosis L4-5, hemilaminectomies L3-4, L4-5, L5-S1, bmp added to revision fusion, replaced two bent screws that were reversing out of vertebrae - August 2, 2007
On going back pain and neuropathic pain, failed back surgery, consult for scs, decided not to do that at this point.
Adhesive Arachnoiditis also......just what I didn't need..9/08- adding bilateral ulnar neuropathy with severe compression to the mix. They want me to see a surgeon for ulnar nerve surgery, but I'm not biting.
I've seen enough surgeons over the last few years.
Avascular necrosis of left wrist- maybe hips too


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 3/12/2010 9:21 PM (GMT -7)   
Make sure to keep all your documentations and make lots of copies as your lawyer should need those...I wish I knew how to help you, but will
offer up support and lots of soft healing hugz..
((((((((((((((((((((((((((((((((((purplehaze_ck))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
try www.webmd.com or do google searches on a doctors name, some doctors have ratings that you could look at...
just a thought...
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


purplehaze_ck
New Member


Date Joined Mar 2010
Total Posts : 9
   Posted 3/12/2010 10:38 PM (GMT -7)   
wow, thank you both for taking the time to give words of advice and wisdom. like i said, i read under your signatures what you are dealing with and i feel like i have it easy. my worry is as time goes by and i dont get help...the worse it gets and the more it seems to spread to the rest of my back, rib cage, and also my head.

i do not tell docs that i see anything about the litigation part. but it doesnt seem to matter either way. i have brought up arachnoiditis to a few docs and they have either said that a. theres no wahy i have it or id be "in a wheelchair" or b. it is possible but they dont know enough about it to even have a dialogue about it with me. i have had an mri, and have been told that no nerve damage is shown there. but i may need to get more opinions on that. but isnt it possible that it might not show up on mri? i have read that. i have researched arach. and i match with almost all of the symptoms. but then there are some that i match with CRPS. i dont know either way, obviously. but i feel like 2 1/2 yrs is probably just a short journey compared to what you have been through so i will have to be patient. i have an awful lawyer too and am in the process of trying to find a new one. i had also been in two car accidents previously and had very very mild back pain. but it was a completely different universe of pain compared to this. i also have very serious anxiety to the point where i will be in so much pain and i know i should lay down but in my mind i try to pretend that im ok and i jus tkeep going, cleaning, or looking up info online....and then by the time i do "allow" myself to rest, i just lay there crying, feeling like my spine is going to rip out of my skin.

im at a wall....and i feel like if i want anything done, i cant do it on my own. that is the worst part and i am sure you know EXACTLY what i mean, anyone who is ill feels this way-every cell in your being wants to do whatever it takes to be healthy again, but you dont have that power and its awful.

i could go on and on and on. but at the same time, i wish i could help all of the people who are worse off than me. but i know that i cant help anyone until i get better and i hate feeling like that. i have too much to offer this sick, sad world to give up or to let this stop me. but right now it is stopping me and part of me knows i might have to accept that. does that ever really happen?

ok i will stop now. thank you again. i was afraid no one would respond to my post because i dont have the long list of ailments. i just dont know what my ailment is other than pain, anxiety, depression, anger, loss of self confidence, etc etc. but i also know that i am lucky in many ways, so i will focus on that as much as i can. ****

cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 3/12/2010 10:40 PM (GMT -7)   
i just wanted to say i noticed the part where you feel almost bad because other people's pain. sweetie when your in pain, it's your's and it's as bad as it can be for you. therefore you have just as much right. some of us who have severe pain daily sort of build a tolerance to it anyways at some point but it is still there.

i have nerve pain and lyrica helped a great deal so i can see how the neurontin helped also. i have had epidural deliberately so i cannot offer any advice on that end.

never feel guilty at all about posting here, this is a wonderful site and that is what we are here for.

congrats on your healthy baby and best of luck in the lawsuit and life.

tabatha
27 yrs old-Fibromyalgia; PCOS; Surgery induced Menopause; Classic Migraines with Aura; Neuropathy; Ankylosing Spondylitis w/ narrowing around the spinal cord; Spinal Stenosis of the Cervical & Lumbar Spine; other little things
 
Medications for pain: Oxycontin; Soma **will update when change meds for sleep, etc.
 
Other treatment: Aquatic Therapy (still have to start); Sleep Study (need a sitter)


cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 3/12/2010 10:58 PM (GMT -7)   
im a bit of an insomniac so i come on here to chat at night. i'm in the chronic pain chat room now. you can get there by clicking chat rooms and picking a room then logging in.
27 yrs old-Fibromyalgia; PCOS; Surgery induced Menopause; Classic Migraines with Aura; Neuropathy; Ankylosing Spondylitis w/ narrowing around the spinal cord; Spinal Stenosis of the Cervical & Lumbar Spine; other little things
 
Medications for pain: Oxycontin; Soma **will update when change meds for sleep, etc.
 
Other treatment: Aquatic Therapy (still have to start); Sleep Study (need a sitter)


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 3/12/2010 11:21 PM (GMT -7)   
Hi and as cat said...never feel bad about talking of your pain. Pain is whatever it is to the person experiencing it. If it's non-remitting and disrupting your life then it's chronic and awful. We're not in the business to compare how much worse one persons' pain is than another. Takes too much energy...lol

If I were you I'd try a teaching/university hospital. Here's a link to get your started. If there's not much in your state then look to the state nearest you.

en.wikipedia.org/wiki/List_of_university_hospitals

There's also a link with Montana and U. of Washington where there's an excellent facility. Just some ideas...

Chutz
"Knowledge is knowing that a tomato is a fruit, but Wisdom is knowing not to put it in a fruit salad."

(\_/)
(o.o)
(> <) Co-Moderator Fibromyalgia & Chronic Pain Forums
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


MIKEL99
Veteran Member


Date Joined Feb 2010
Total Posts : 914
   Posted 3/13/2010 6:53 AM (GMT -7)   
Hey purplehaze , it was great meeting and talking with you last nite in the chat room and as cat8201 says all pain is difficult when its yours you can empathsize with others pain but don't minimize your own challenge .Sue that doctor for everything he has , he needs to pay





 
HIV+ also Hep c , need hip replacement surgery on hold because of unknown but cellulitus-like ailment  .most pain from hip condition and cellulitus-like ailment .hands numb may have carpal tunnel syndrome now . Great frustration because doctors unable to diagnos ailment              .Medecines - Oxycontin , percocet ,  Celelbrex , lasix .


skeye
Veteran Member


Date Joined Mar 2008
Total Posts : 2976
   Posted 3/13/2010 11:25 AM (GMT -7)   
Hi Purplehaze,

I just want to welcome you to HW! I'm sorry to hear about your pain, but am happy that you joined our ranks. This is a great place for support and understanding. If you stick around you will undoubtably make great friends. Hope this finds you well & not in too much pain.

hugs,
Skeye

purplehaze_ck
New Member


Date Joined Mar 2010
Total Posts : 9
   Posted 3/13/2010 3:39 PM (GMT -7)   
i wish i would have found a place like this sooner but either way i felt different last night after connecting with all of you...totally cliche but it really felt less lonely in my little world of pain...i even felt happy even though i stayed on the computer too long chatting and paid the price for it! sometimes the only way i can accept my pain or get through the hard times is to think of how much worse it could be. it allows me to focus on what i can do, not what i can't. but thanks for making it ok to talk about it and for all of the insight...its priceless in my book.

i will def check out the teaching universities, Chutz, thank you so much for the link. i look forward to sharing more with all of you and i hope that i can somehow be of help to you all as well.



"if i turn into another, dig me up from under what is covering the better parts of me..." brandon boyd
i dont know what my ailment is...im still trying to find out. but i had 25+epidural attmpts and have had chronic back pain ever since. maybe arachnoiditis or CRPS...but i cant say for sure.


Retired Mom
Veteran Member


Date Joined Feb 2010
Total Posts : 1753
   Posted 3/13/2010 3:39 PM (GMT -7)   
Hi Purple,

I just wanted to welcome you to the board. I can't offer much on your medical condition because that is one thing (thankfully) that I have never experienced. I can, however, tell you that you are in the right place.

Don't ever worry if you don't get a large response to an individual post here...sometimes it is because they don't have knowledge of the condition. You will always find support here and many of people willing to just listen if that is what you want.

Again, welcome
Formerly PrayingForRealRelief...
 
DDD, CHRONIC PAIN SYNDROME, TLIF L5-S1 2009 (failed), FIBRO, MINEYER'S (SP?), VERTIGO, MIGRAINES, GERD, SLEEP DISORDER, NISSEN FUNDOPLICATION (failed), DEPRESSION, EXTREME ANXIETY DISORDER, OCPD, PTSD, CHRONIC MUSCLE SPASMS, HUMAN GROWTH HORMONE DEFICIENCY, VITAMIN D DEFICIENCY, CARPLE TUNNEL SYNDROME, EXTREME IDIOPATHIC HYPOGLYCEMIA FROM AGE 12
 
 
 
 


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 3/14/2010 11:16 AM (GMT -7)   
OMG!!  Purple Haze I have the heebie jeebies.  Just thinking about them going in and out and in and out of your spine makes me sick...really?  They couldn't find the space any quicker?  What jerks.... I have had a couple of back surgeries....but the worst thing ever was having the Epidural Steroid Injections....without any pain meds... He said it was like trying to put a needle through a block of wood!!!  Man oh man...What an ordeal.
 
I am so sorry that now you are having problems..  Make sure you keep it cool...Dr.'s tend to stick together...I hope you can get some relief...
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


cat8201
Regular Member


Date Joined Nov 2009
Total Posts : 135
   Posted 3/15/2010 4:22 PM (GMT -7)   
hey purple, can i have your email please so i can add you to my facebook. mine is cat8201@live.com and my name shows up as Cat Tabatha.
27 yrs old-Fibromyalgia; PCOS; Surgery induced Menopause; Classic Migraines with Aura; Neuropathy; Ankylosing Spondylitis w/ narrowing around the spinal cord; Spinal Stenosis of the Cervical & Lumbar Spine; other little things
 
Medications for pain: Oxycontin; Soma **will update when change meds for sleep, etc.
 
Other treatment: Aquatic Therapy (still have to start); Sleep Study (need a sitter)

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