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Esi..csf leak..pdph.. X 2 blood patches..now what!!
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| iSpine Discuss Esi..csf leak..pdph.. X 2 blood patches..now what!! in the Main forums forums; OK!! Well, after EVERYTHING, I can't believe the pain I have been having in my low back, it takes ... |
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04-24-2009, 10:07 PM
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Esi..csf leak..pdph.. X 2 blood patches..now what!!
OK!! Well, after EVERYTHING, I can't believe the pain I have been having in my low back, it takes my breath away. It feels like contraction type pain, it comes then goes then comes then goes, IT IS CRAZY!! I seriously have to stop everything I am doing when it hits and wait for it to pass, WHAT IS IT?? Are there ANY ideas out there as what to do?? I have tried the heat thing, no luck.
Ugh!!! Is this EVER going to end? If it isn't one thing its another!! I was SUPPOSE to have a follow-up appt with my family dr today, but they called and cancelled cuz the dr had to take the day off, GRRRRRR!! When I asked the nurse she was so RUDE I wanted to reach in the phone and STRANGLE HER!! I have been re-booked for Monday SO I am hoping he MIGHT be able to help me out with the contractions I am having in my back-or whatever they are, if you were to look at my low back it is DESTROYED, BRUISED and there are 5 puncture marks, from all the needles...YUCK!!! I do want to THANK you all for taking the time to read my posts and help me out, you have ALL helped me get through it all when I thought I couldn't.... Mary 
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04-25-2009, 03:18 AM
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spasms?
Mary,
so sorry to hear how badly your back is feeling and I'm just wondering if in reaction to all the *stuff* the ol' back has gone thru there's some major spasms going on? Have you tried a muscle relaxer to see if that would help? How're you doing otherwise in terms of how you feel? No fever or anything?
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04-25-2009, 05:29 PM
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Mary,
My back reacts to whatever with spasms. My first surgeon (disco/lami 1994) recognized this and ordered muscle relaxers immediately, Toradol I think. All I have to do is move wrong, sneeze, take one step too many or even sit in the 'wrong' chair. If available to me, I can get them to stop in about 10 minutes by sitting in the zero gravity position or laying down with my legs elevated. I know how painful this is and hope they subside quickly. Dale
__________________
3 level Prodisc adr S1-L3, Oct 12, 2005 Dr. B in Bogen, Germany Severe nerve damage in left leg, still working on it
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04-25-2009, 06:25 PM
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re Toradol
If you can tolerate Toradol IM an injection of this works wonders for my muscle spasms in terms of subsiding especially for my neck.
For oral muscle relaxers I have Skelaxin which works well but I feel kind of *left over* for a while tho they are effective as well for me. Good luck and please keep us informed 
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04-25-2009, 07:41 PM
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? muscles spasms....
Muscle spasms eh? Well, if I told you I felt like I was in labor again would you believe me?? I had some Robaxacet and that is doing NOTHING! I really don't know what else to do, how much longer is this going to last? I don't have a prescription for muscle relaxants, I am assuming all the ones you guys mentioned have to be.
Ugh...all I know is I am NOT liking it very much, doesn't matter WHAT position I am in it keeps going and going and going, like the Energizer bunny!! Every 5 - 10 minutes it hits and lasts about 3 or 4 minutes. Anyways, I am going to go now and STOP complaining, I am sick of hearing myself talk about the same thing OVER & OVER!! I can only imagine how you guys are feeling about it.... Hope everyone is having a good day!! All the best, Mary
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04-25-2009, 11:40 PM
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Mary, do not feel bad about coming here and complaining, even about the same thing over and over. We are here to listen to you, no matter what.
You are in pain, and not getting any relief. We understand. I am mad on your behalf, that your doctor canceled your appointment on Friday. But I really hope that he helps you on Monday. You need some relief. I hope that it comes soon.
__________________
Cathy 46 years old. 12-15 years of intermittent pain, 2 years with constant pain. DDD, L4-5 and L5-S1, pain confirmed by discogram. PT, ESI's, Facet injection and block, Acupuncture - all no help. 2-level (Prodisc-L) ADR surgery with Dr. Bertagnoli, May 26, 2009. Currently taking Opana-ER (tapering off) and oxycodone
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04-26-2009, 05:03 AM
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Mary,
Ditto Cathy. When you're in pain, life is crap. Nothing is good but when doctors make it worse, you have no where to turn. That's where we come in, to support you, recommend what we can, and tell you to give all that crap right back to that doc. Cry, laugh, complain, whatever. No sweat! Dale
__________________
3 level Prodisc adr S1-L3, Oct 12, 2005 Dr. B in Bogen, Germany Severe nerve damage in left leg, still working on it
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04-26-2009, 10:58 AM
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Didn't someone else on a recent thread have a similar problem and went to the hospital for a morphine IV mixed with a muscle relaxant or valium or something?
The muscle had started spasming and she needed the above to break the pain cycle, I think. It was the morphine drip that helped so much, to let the muscle and brain rest from all the pain. I'll try searching here and on another forum, but it was a recent post...like in the last week. I'm sorry you are in so much pain, and please do NOT stop posting. That's what we're here for...we understand like no others do. Hugs, my dear. Things will get better......
__________________
DDD Herniated discs C4/5 & 5/6, L3/4, L4/5, L5/S1 Severe compression of spinal cord in two levels All conventional therapy exhausted, including spinal injections, PT, massage, etc. In appeal with Gov't Insurance for Out-of-country coverage for ADR hybrid surgery of above discs. Recently discovered that I am severely allergic to all common metals used in surgical hardware except for Titanium.
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04-26-2009, 11:04 AM
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Oh, forgot to add to be very careful about asking for pain medication by name if you go into a hospital and talk to someone who does not know you well.
The staff is very well versed in looking for 'people like us' who are just working the system to get a 'fix'. Take all medical documents with you to verify your medical condition to prove you are not looking for a quick 'trip'. Unfortunately there are others out there who ruin it for us who truly need help with pain. Gain their trust, then maybe suggest that this procedure has helped a similar case that you know of, etc. This is in no way a diagnosis, etc. or a suggestion on what you should be taking...I am not a doctor, but understand pain very well, and will try to find that other post which might help.
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DDD Herniated discs C4/5 & 5/6, L3/4, L4/5, L5/S1 Severe compression of spinal cord in two levels All conventional therapy exhausted, including spinal injections, PT, massage, etc. In appeal with Gov't Insurance for Out-of-country coverage for ADR hybrid surgery of above discs. Recently discovered that I am severely allergic to all common metals used in surgical hardware except for Titanium.
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04-26-2009, 11:18 AM
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Here is the post from Cindylou, after she ended up with a lot of pain after having a steroid injection. I haven't gone through both threads, so don't know how similar they are. Hope this helps.
" Just got home from the ER Hi everyone, Well, we finally got home from the ER. They had to hook me up to an IV and give me some morphine and ativan to finally break the pain pattern. Then the ER doc (who was terrific by the way) thought it best to do a brain Cat Scan, as he wanted to check for an aneurism, any bleeding on the brain. Fortunately, that came back ok. He said it's not 100% accurate, but still a good diagnostic test. That morphine is a complete miracle drug. They had to give me two rounds, and then we all concluded it was very likely that the injection irritated the nerve big time, and then it snowballed into spasming, etc. He discharged me with something stronger than Vicodin, but not a stupid large script of it. And he wants me to call my neck doctor's office tomorrow morning, and be seen by my GP within 3 days. How about a little UN-excitement for a bit, no? Thanks again everyone, for all the good advice, Cindylou"
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DDD Herniated discs C4/5 & 5/6, L3/4, L4/5, L5/S1 Severe compression of spinal cord in two levels All conventional therapy exhausted, including spinal injections, PT, massage, etc. In appeal with Gov't Insurance for Out-of-country coverage for ADR hybrid surgery of above discs. Recently discovered that I am severely allergic to all common metals used in surgical hardware except for Titanium.
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04-26-2009, 01:58 PM
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SERIOUSLY!! If I walk back into the ER they are going to look at me like I am CRAZY!!
Although Katie, that is an AWESOME idea to carry my reports around with me, especially to the ER, at least when they give you that 'eye' you can pull out the MRI report and say READ!!! LOL!! I have had enough of these spasms, I am assuming thats what it is....Grrrrrrrrrrrrrrr!!
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04-26-2009, 02:32 PM
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Mary,
There are all kinds of ways that you feel back pain. Yes, muscle relaxants are by prescription only. I take the generic for Flexeril and that is a safer drug over time according to research. There are several muscle relaxers. They kind of relax the brain and they do work. The important thing is to get your pain under control. I know that "take your breath away kind of pain". Right now, my pain is out of control despite the medicines and I am not sleeping very well so I may have to call the doctor's office on Monday and tell them about it so I can get it under control. It is ok to vent on here...we get it. Take care, runner
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04-26-2009, 03:00 PM
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Dear Mary, So WHAT??!!
They can do something for you for the pain, they are just choosing not to, probably because of what I've mentioned before. I have taken my hospital records from previous visits regarding weird allergy reactions, plus pain, and it really speeds things up. They even seem to appreciate it. We have to face the fact that they get an awful lot of people in every day, trying to get narcotics for the wrong reasons. The nurses are really just doing their jobs and saving their own behinds, but sometimes forget that there are legitimate pain patients out there. I have also taken along my prescription bottle, outlining the extraordinary doses I am supposed to take, and that settles things quickly too. You have been in pain long enough and need to be proactive, but in the right way, by proving your case. Good luck.
__________________
DDD Herniated discs C4/5 & 5/6, L3/4, L4/5, L5/S1 Severe compression of spinal cord in two levels All conventional therapy exhausted, including spinal injections, PT, massage, etc. In appeal with Gov't Insurance for Out-of-country coverage for ADR hybrid surgery of above discs. Recently discovered that I am severely allergic to all common metals used in surgical hardware except for Titanium.
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04-26-2009, 05:03 PM
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OK!!
I am biting the bullet and taking my behind to the ER. Enough is enough, I am going to start having preferred patient points soon, lol!! I will let you know what they say and do when I get back, HOPEFULLY the wait won't be too long, that is the WORST having to wait in a busy ER when you are in unrelenting pain!! Thanks for everything!! Keep you posted!! Mary
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04-26-2009, 05:28 PM
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Good on you
Yes, please keep us posted, and don't forget your past records that show you NEED this stuff!
__________________
DDD Herniated discs C4/5 & 5/6, L3/4, L4/5, L5/S1 Severe compression of spinal cord in two levels All conventional therapy exhausted, including spinal injections, PT, massage, etc. In appeal with Gov't Insurance for Out-of-country coverage for ADR hybrid surgery of above discs. Recently discovered that I am severely allergic to all common metals used in surgical hardware except for Titanium.
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04-26-2009, 08:34 PM
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Good you are going. Great advice on taking records. And don't worry about what they think about you returning there again. They are there to help you, we hope.
__________________
Nov 07: STALIF Fusion L5/S1 ACTIV-L ADR L4/L5 Nov 09: Prodisc-C ADR 2 level C 4/5/6
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04-26-2009, 09:33 PM
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Hope you are able to post when you return home Mary. Gosh, I cannot tell you how many times I have been to the ER for extenuating circumstances like out of control pain. If you are really in pain, these folks are trained to see this stuff. And taking the records is a good idea. When I went to the ER last week, I did remember to take my recent MRI chart note that spoke of my severe cervical stenosis, and I do think it helped. The ER doc had two medical students following him that day, and he asked each of them what they thought was going on with me. He even asked ME what I thought was happening to my body first! He was great. Such a good listener. And it was really cool when he asked the first medical student what she thought they should do for me, and God love her, the first thing she said was: "We need to get her pain managed. She looks like she is in excruciating pain. Then let's address the tests." I thought, she'll make a good doctor some day.
I hope you get the relief you need too. Cindylou
__________________
bicycle accident 6/01: 2 compression fractures @ T12-L1; vertibroplasty; 4/06: right hip labral tear & arthroscopic repair; 4/07: lumbar prodiscs @ 3 levels, L3-6 by Dr. Bertagnoli; 7/02/08: ALIF L6-S1; 7/30/08: reopened to remove bone cement, leaked onto S1 nerve root; 8/08: pulmonary embolism, double pneumonia, collapsed left lung, pleurisy, pleural effusion; ALIF fusion complete; 3/10/09: SI Joint Fusion by Dr. Stark; Jury still out.
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04-27-2009, 05:46 AM
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Mary, just checking in on you...have you gotten some relief yet?
__________________
DDD Herniated discs C4/5 & 5/6, L3/4, L4/5, L5/S1 Severe compression of spinal cord in two levels All conventional therapy exhausted, including spinal injections, PT, massage, etc. In appeal with Gov't Insurance for Out-of-country coverage for ADR hybrid surgery of above discs. Recently discovered that I am severely allergic to all common metals used in surgical hardware except for Titanium.
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04-27-2009, 04:21 PM
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hope you went and feel better
I'm hoping you went to the ER and got a diagnosis for your labor like pains (back I'm guessing) and are feeling somewhat better or at least pleasantly out of it and better...
I don't worry anymore what will be thought of me if I have to go somewhere multiple times because I've been on the other side of the working fence re healthcare/nursing and now I'm on this side.. I see the eyeball roll when Methadone is mentioned but when history of 2 back surgeries is mentioned and a failed surgery most nurses can identify with not wanting that (and backaches) and most doctors are there to do their job as are the nurses and allied healthcare staff. Give me too much attitude (this has rarely occured for me tho it has happened) and surely that will be duly noted and passed on to someone higher up re hospital administration. They are there to serve bottom line...feel better!
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04-27-2009, 04:53 PM
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Mary, how are you doing? I hope you were able to get some relief by going to the ER yesterday. And today is the appointment with your doctor, is that right?
Well, I hope they are getting you back into shape, and out of pain.
__________________
Cathy 46 years old. 12-15 years of intermittent pain, 2 years with constant pain. DDD, L4-5 and L5-S1, pain confirmed by discogram. PT, ESI's, Facet injection and block, Acupuncture - all no help. 2-level (Prodisc-L) ADR surgery with Dr. Bertagnoli, May 26, 2009. Currently taking Opana-ER (tapering off) and oxycodone
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04-27-2009, 11:03 PM
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Spasms...
Hi Mary, so sorry to hear about the terrible spasms. I have this from time to time. So far what seems to help for me if I'm acute is oral prednisone (as per discussion with doc re: how long etc.) and also a Toradol shot which makes things bearable. It's the shot that really acts fast for me tho and takes the edge off.
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04-27-2009, 11:59 PM
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Hi Mary, you're starting to worry me...we haven't heard from you since you said you were leaving for the ER. We certainly hope all is well.....
__________________
DDD Herniated discs C4/5 & 5/6, L3/4, L4/5, L5/S1 Severe compression of spinal cord in two levels All conventional therapy exhausted, including spinal injections, PT, massage, etc. In appeal with Gov't Insurance for Out-of-country coverage for ADR hybrid surgery of above discs. Recently discovered that I am severely allergic to all common metals used in surgical hardware except for Titanium.
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04-29-2009, 08:21 PM
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Hey Mary...I know everyone's just as anxious as me to see how you're doing...I hope they gave you something good and that you're just resting...
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05-01-2009, 12:22 PM
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Mary,
what the heck is going on?? Are you okay?? Just a quick update will ease our minds.
__________________
bicycle accident 6/01: 2 compression fractures @ T12-L1; vertibroplasty; 4/06: right hip labral tear & arthroscopic repair; 4/07: lumbar prodiscs @ 3 levels, L3-6 by Dr. Bertagnoli; 7/02/08: ALIF L6-S1; 7/30/08: reopened to remove bone cement, leaked onto S1 nerve root; 8/08: pulmonary embolism, double pneumonia, collapsed left lung, pleurisy, pleural effusion; ALIF fusion complete; 3/10/09: SI Joint Fusion by Dr. Stark; Jury still out.
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05-01-2009, 06:43 PM
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Good grief!!
OK!!
Here it goes, I went to the ER and they kept me there overnight to run some tests and do an MRI. My bloodwork came back showing an infection, so I was started on antibiotics via IV as well as Toradol (what a GREAT drug!) The MRI on the other hand did show something that had happened from the bloodpatches, I can't remember what they called it, I am really bad with all these medical terms, so, because of the MRI I had to stay another night to see if they could get the problem resolved without surgery, as it stands, I have an appt with the Nurosurgeon on Monday and everything will depend on what HE wants to do. I had to go back on the 29th and 30th both in the am and pm to get another dose of antibiotics via IV, they left the IV thing in my hand and because I had a little girl, they let me be home with her...... BUT, if I have anymore pain like it was, or any sign of a fever they will admit me again and then see where things go from there... I am sorry it has taken SO LONG for me to get in touch with you all, THANK YOU for your concern and if you don't really understand what I was explaining I apologize. Seriously, you need a medical degree to just try to understand everything they give you to process, and I can't remember half of what they said or understand the other half they said.  Hope everyone is keeping well, I will try to keep you updated with what the Surgeon says on Monday. Take Care Mary
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05-01-2009, 08:56 PM
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Well, all in all, I am glad you went to the ER Mary. Sounds like you more than needed it! Sounds also like you will know more on Monday, so that's good. You take care and thanks for popping in with an update. So appreciated. We do worry....even cyberly.
__________________
bicycle accident 6/01: 2 compression fractures @ T12-L1; vertibroplasty; 4/06: right hip labral tear & arthroscopic repair; 4/07: lumbar prodiscs @ 3 levels, L3-6 by Dr. Bertagnoli; 7/02/08: ALIF L6-S1; 7/30/08: reopened to remove bone cement, leaked onto S1 nerve root; 8/08: pulmonary embolism, double pneumonia, collapsed left lung, pleurisy, pleural effusion; ALIF fusion complete; 3/10/09: SI Joint Fusion by Dr. Stark; Jury still out.
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05-02-2009, 07:41 AM
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re the this experience
I've had nearly 30 ESIs and never had a problem since they started doing them under fluroscopy but mostly I think because of the talent/technique of the person doing this procedure.
The two times I've had myelograms with spinal fluid leaks my Neurosurgeons (different ones each time) wouldn't let me have a blood patch probably because of associated or potential further problems so I had to wait it out twice hospitalized flat in bed for 7 days but after this I was good to go. I'm really sorry to hear that you had this whole entire experience and I don't blame you for not wanting another ESI or blood patch ~ I'm sure I wouldn't either given what you've been thru. I just got an ESI today (transforaminal approach bilaterally at L5S1) and I'm doing Ok. But I've had good results with these procedures outside of the very first one done in the office back in the early 90's. That one was a nightmare and the reason I didn't want another one until 2001! Please keep us posted and I do hope you'll be feeling much better soon.
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05-02-2009, 06:33 PM
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Mary,
What an ordeal to have to go through. I'm glad you're doing better and I suppose Monday you'll have a better idea of what exactly is going on. I do hope you don't have to go back into the hospital. It's a good place when we need it but I hate it. Let us know what happens on Monday, Dale
__________________
3 level Prodisc adr S1-L3, Oct 12, 2005 Dr. B in Bogen, Germany Severe nerve damage in left leg, still working on it
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05-03-2009, 02:47 AM
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omg !
 I am glad to hear you are ok. As has been said sometimes things don't go right and it does not mean its a bad procedure but at the same time is it worth it? After one time you decided its not. 30 ESI and 2 myleograms oh wow when that lined up for me I decided to have surgery. Marymary I hope that it all heals up good and you can get back getting good help for your original problem and not issues from treatments meant to help you.
__________________
Nov 07: STALIF Fusion L5/S1 ACTIV-L ADR L4/L5 Nov 09: Prodisc-C ADR 2 level C 4/5/6
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05-03-2009, 05:25 PM
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to clarify
Fuzzy,
I did have a surgery after each myelogram. The 2nd one failed terribly which lead to 5 years of awful nerve pain in lower half of body and then residual pain and probs (chronic) and what has helped alleviate the pain besides pain meds has been the 30 ESIs! They do work for some people... I'm not saying I'm not a surgical case because I've had at least 6 surgical opinions rendering same opinion but I guess I have a great fear of being worse off than I am now and I have reasons for not having more lumbar surgery *yet*. We each march to our drummer re this whole thing...
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