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Update on treatment ordeal
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sbncmo posted:
Well, aquatic therapy was a big failure - I was worse after a month than when I started. My insurance said I had to go to the pain clinic before further testing. When I arrived there Tues, they had already decided to do epidurals, which upset me as I didn't have a say in my treatment. But since this was an initial visit & not the epidural visit, I was able to express my concerns, which were basically dismissed. The doctor was nice, but I'm still concerned about the treatment.

I have a friend who had an epidural. She was paralyzed for a yr, spent another yr in therapy learning to walk, and still has no feeling in her left leg - and never will. My brother had an epidural. The 1st helped fairly well. The 2nd made him much worse & it was decided not to do any more. I have another friend who gets them 3 times a year. Sometimes they work for 3 months, sometimes only a week. I don't trust epidurals.

This epidural will be given in the lumbar & the doctor said it should stop the pain from my lumbar down. I asked what about the top half of my body. He said he will use medicine for it. I don't know what med - I can't take Rx pain pills or NSAIDs. I'm at the point where I am throwing up after walking thru the store to get groceries. The pain in my upper body is almost as bad. Twice this week I have been awakened w/pain in my shoulders so bad that I'm laying there weeping & gasping for air. I don't know what to do, but I can't live with that kind of pain all the time. And my hands & wrists throb and burn with pain.

The doctor said an epidural below the neck would control all the pain, but because it is so very, very risky, he refuses to do it. I respect him & appreciate his honesty in that matter. But another matter that seriously concerns me is that he will be using a local anesthetic before the epidural. The anesthetic is a "caine" product. I told him I am allergic to these products, so he is having me take allergy medicine (methylpred) the night before & methylpred, cimetidine & benedryl the morning of the procedure, but I don't know if they will work. I don't want an injection that is going to swell larger & larger over an hours' time to put pressure on my spinal cord. When I go in next week, I will demand they give me a very small amount of anesthetic & watch it for 10 minutes before giving me a little more, then watch it again & repeat that procedure until they are sure the allergy medicine will work.

I went to this same pain clinic several years ago. They gave me injections in my neck, shoulders, back & hips where the pain was most severe. An hour later, I would be in physical therapy with lumps larger than my hand & the therapists couldn't work the lumps out. We didn't know what was going on & I was becoming more physically ill each time. I finally had to quit. About a year later, I said something to my family doctor about being allergic to lidocaine & she said I wasn't because that is what was in the shots I'd been getting at the pain clinic. I said "Well that explains a lot." She asked what & I told her how sick I'd gotten & about the huge lumps from the shots.

Now this doctor wants to use a caine product that starts with a "p" & he says I won't have any problems with it because of the meds I'm to take beforehand. I'm just very apprehensive about the whole thing. He claims to never have had any problems with his treatments, but I think we all know that no doctor has a perfect record. Don't get me wrong - I like him well enough, he's very friendly & tries to make his patients feel at ease. He even had me meet one of his patients who had been in the same condition I'm in now, who has made remarkable progress. But I'm concerned because of my many allergies. I don't know how that will affect this.

Any encouraging comments out there?

Shelia
Keep up the fight!
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bj1208 responded:
Hi Shelia - I know it's been a while since u last posted - gosh so sorry you are having so many problems -

I had to go back and read your story to get up to date on everything - you have a lot of things going on medically and I can understand all your concerns.

It may be a good idea if you were to call your case worker and discuss your medical problems and concerns. I would see if they will allow you to see a spine specialist for re-evaluation and treatment options. this may be the best way for you to go - it's very evident that certain treatments are not in your best interest.

please keep us updated - take care - ^ Joy ^
 
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sbncmo replied to bj1208's response:
Hi Joy. I am going to wait until I get the MRI since I hope it will reveal a lot more information. That is being done Tuesday, so it should be sent to my doctor & to the pain clinic by Thursday. I will call my PCP first to find out the results, then call the pain clinic to see how it will affect treatment and express to them again my concerns over the allergies. I know that benedryl does absolutely nothing for me, so I don't know if the other meds will work either. I know the pain clinic is used to just giving the local, waiting a few minutes, then doing the epidural, but I refuse to let them do that.

Anyway, the MRI may show the need for a spine specialist after all, so I will wait until the results come in.

And, I may be wrong here, but isn't it illogical to give a patient medicine they are allergic to just by covering it up with allergy medicines? To me, that just isn't good medical practice. But I will talk to them about it again Thursday & on the morning of the treatment - if they decide to go thru with it.

I'll keep you posted.

Shelia
Keep up the fight!
 
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davedsel57 replied to sbncmo's response:
Hello, Shelia.

Definitely discuss the allergic reaction with your doctor. You have the right to refuse any recommended treatment as well. If you are allergic to a med it also will not work for you. I understand how hard this all is for you, but being assertive and proactive with your doctor(s) will benefit you greatly.

Joy has given you good advice as always and I agree with what she said.

Continuing to pray for you that you find answers and pain relief soon.
Blessings, -Dave
 
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sbncmo replied to davedsel57's response:
Thanks Dave. One of the things that made me so mad was that the doctor had decided on the treatment before he even saw me. To me that is just plain careless & dangerous. And then to blow off my concerns about my allergy to caine products really made me mad.

I tried to find the anesthetic he mentioned - a caine anesthetic that starts with a "p" & there is one called procaine, another name for novacaine, if I'm remembering right. Not that the name really matters. If a patient is allergic to penicilin, a doctor doesn't give him a drug in the same family by a different name & add allergy meds to it.

Bad thing is, in looking over local anesthetics, they are ALL caine products - variations of novacaine & lidocaine. But believe me, I will make a stand for myself about this! My pain is unbearable most of the time, but I'm not going to let a doctor do something that could make the situation worse.

Thanks for your support, both of you, Dave & Joy.

Shelia
Keep up the fight!
 
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sbncmo replied to sbncmo's response:
Well, I had my MRI yesterday & my doctor called with the results & now I'm very depressed. The MRI report said nothing is wrong with my spine - no stenosis, no bulging discs, nothing. I guess that is good, but if nothing is wrong, then why do I have such continual, excrutiating pain? The x-rays showed mild DDD, but I think that is garbage - I've had this pain increasing for 30 years & that is not mild DDD! I'm sick of this! I'm fed up with the increasing pain & getting negative test results!

I've got the disk from the MRI & I'm going to have the pain doctor look at it Friday & explain it to me, not just go by the report that was sent to him. My visit with him Friday is definately going to be longer than he anticipates, because I wanted things explained & I'm going to make them do the anesthetic my way. He may not like that, but that's the way it's going to be!

I'm seeing my psychologist tomorrow morning. I don't know if he can make me feel better about this or not. He's very empathetic, like talking with a good friend, but he doesn't always provide answers. And I guess with depression, a person doesn't necessarily look for answers as much as looking for a hearing ear.

All the tests & treatments are worthless, pure garbage - they don't tell me anything, they make me feel worse, & I'm sick of it all! I don't know where to turn from here. I'm so limited by what I can do since I have state insurance & so little income. The state has all their rules & regulations & they won't budge. And with the tests coming back negative, they won't do anything. Now what?

Shelia
Keep up the fight!
 
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bj1208 replied to sbncmo's response:
Hi Shelia -

Since you have the MRI you should really take it to either an Orthopedic Spine Specialist or a Neurosurgeon Spine Specialist - they are the best at reading the results - they really don't go by what the radiologist reads the reports -

Pain Physician's may be able to do this but with the many pain doc's I've gone to there were quite a few that told me they don't know how to read the films and I really believe you need to see one of the spine specialists - and I believe the type of pain management you need to see is a PHYSIATRIST Pain Management - they go deeper into pain management than regular pain clinics - the spine specialist can refer to one -

I hope this helps a little - I know how frustrating it all can be - my back surgery was 3 years ago - and in the last 5 years I've been to so many pain clinics, orthopedic spine specialist, neurosurgeon spine specialist, physical therapy, chiropractic care etc that I've lost count of how many I've been to! LOL

When I start feeling down I look at what a wonderful husband I have, 5 kids between the 2 of us - 5 grandkids with one on the way - these are my cherish gold that keeps me going each day -

Keep ur chin up - things will get better - you're starting the climb on the ladder - each step is hard but when you find your cherish gold those steps get easier to take -

let us know what happens - and see if you can get in to see a spine specialist - take care - ^Joy^
 
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sbncmo replied to bj1208's response:
Thanks for the encouragement Joy. I am taking the MRI disk with me to the pain clinic tomorrow & will insist that he read it & explain it to me before any treatment. I'm rather skeptical that he can read it with the way he already waved my concerns away. I want to go to a spine specialist, but my insurance will not pay for it & with an income of less than $10,000 a year, I can't afford to pay for it myself. I have no choice but to do what my insurance is willing to do. It's not right & it's not fair, but I'm stuck with it. It stinks!

I saw my psychologist this morning & he encouraged me to make my stand with the doctor tomorrow. They can't do anything if I don't agree to it.

I have my signature line as "Keep up the fight!" But I feel like I've been beaten & have no strength left to fight. I have so many things to fight every day, all my physical & mental & emotional strength is zapped.

You are right though about thinking about my loved ones. They are my blessings. I know it is hard on them to see me suffering & not be able to do anything to help me. But they are here, comforting me thru all of this & a person can't ask for anything better than that.

Thanks again for your support & encouragement & your suggestions. If you can think of any way for me to get the "system" to work for me or a way for me to work around it, I'd sure like to hear about it.

I'll let you know how it goes tomorrow.

Shelia
Keep up the fight!
 
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bj1208 replied to sbncmo's response:
Shelia - another thing you can do is ask your pain doc to refer you to either an orthopedic spine specialist or a neurosurgeon spine specialist stating that you want to get an accurate diagnosis and opinion. they should do this, if not you should be able to go to your primary care physician with the request.

hopefully this will help get you in the right direction -

take care - ^Joy^
 
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sbncmo replied to bj1208's response:
I went back to the pain clinic today for the lumba epidural. I requested that the test the anesthetic first for any reaction & they did. The meds worked to prevent a reaction. I also can the doc the MRI disk & he looked at it & agreed that it was normal. So I asked why I'm in so much pain if the tests all show normal & he seemed irritated by then & said I have C1, S4 or something like that, but didn't really answer my question. How am I to know what a letter/number is? He walked out & the nurse & tech had me get on the bed with 2 pillows under my lumbar area & 1 pillow under my chest & it was so painful. They asked what was painful & I told them it was the position. The doc came back in to start the procedure & was saying to breathe normally (which I couldn't), that he liked me & didn't want to feel like he was making me uncomfortable. The procedure went okay & they had me stand, but the pain was so bad, that they had to get me into a chair immediately. I sat there for a few minutes & they took me into the recovery room.

In the recovery room, I looked down at my fingers & the nails were all purple - presumably from not being able to breathe prior & during the procedure. My oxygen level was 92 & my BP had skyrocketed. A minute or two after getting into the recovery room, I started having a strange taste on the back of my tongue, going down my throat. A few minutes later, I developed a headache. The nurse went to get the doc & he came in and said it was psychological, that he did everything right & I shouldn't have a headache with this particular treatment. (The odd taste could have been a sensory epileptic seizure) After he walked out, the nurse gave me the paper on what to be alert for & report if they happened - headache was the third item! I took headache pills, but they didn't help at all. I never questioned his doing anything wrong or accused him in any way & here a headache is listed as a possible result & he tells me it's all in my head! It really made me mad! After he left, the nurse said it wasn't that uncommon for people, like me, who are very sensitive to medicines, to have headaches or any of the other symptoms on the list. She told me that since I am so sensitive to meds, to really watch myself & report anything to the hospital.

I don't usually hurt when I am sitting, but I am really hurting now & walking even a few feet is painful. But the paper did say that the pain may be more severe for up to 36 hours. I feel like my entire torso is being crushed. I sure hope this helps.

The thing that gets me is that all the tests come back normal, yet they are treating me. Why give me steroids if there is nothing there to treat? I didn't ask him to refer me to a specialist because as long as tests come out "normal", specialists won't take me.

Anyway, I'm scheduled to go back for another epidural in 4 weeks. That surprised me because my brother, mother & some friends told me that you can only have epidurals every 4 months.

Well, I'd like some more insight on this. I have to go lay down. The pain is killing me - and the headache.

Shelia
Keep up the fight!
 
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bj1208 replied to sbncmo's response:
Hi Shelia - gosh sorry this keeps happening -

I still say you need to contact your case worker - let him/her know everything that goes on when you have these shots and also that the radiologist who read the MRI films says there is nothing on there and that your pain doc reviewed them too and said same -

I would demand that you get your case worker's approval to see a spine specialist - as I have said and Dave too, they are the best at reading these results - they don't go by the written statement - they look at the film and can see things that others cannot.

As an example, the radiologist will ask if there is another MRI (previously done) so that they can COMPARE the results. If going in blind and looking at it from a first time they may not see things.

But a spine specialist can look at the results and know what's going on -

so please do contact your case worker - i'm sure you have enough evidence to support seeing a spine specialist -

let us know what happens - take care - ^Joy^
 
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lazydazey replied to sbncmo's response:
So sorry to butt in here, and so very sorry for all you are going through...why did the doctor insist on giving you a treatment? Probably because he makes A LOT of money from doing it. Your doctor sounds like a complete jerk with the compassion of a rock, and you have my deepest sympathy. If I were you I would make sure I had someone with me (as a witness if nothing else) when you see him. Not all pain management doctors are like this, but there are some (my doctor and all the other pain management doctors in my area included) that insist on these injections whether they help or not. I get a set, have to go back in two weeks, get another set, wait another two weeks and then get one more set. I am on pain medication, and it has given me my life back...I hate that I have to take a pill to be able to do what someone without back problems takes for granted, but it is better than hurting so bad that I just want to cut my lower half off! There aren't any physiatrists in my neck of the woods, only greedy doctors that see me as a cash cow, and all of them in my area are the same-no shots, no meds. The shots have never done anything for me but give me horrific side effects; the last set I had shot my blood pressure up so high it blew a blood vessel in my right eye. My doctor doesn't care if they work, or what they do to me as long as he gets paid. Strangely though, as soon as my doctor realized my new insurance wouldn't pay him hardly anything (it was put toward deductible, which put the burden of payment on me and we had to set up a payment plan because gee, we just didn't have $1500.00 laying around!) suddenly he decided I didn't need the shots so often! The very first set I got, he tried to charge my insurance at the time $20,000! I am so sorry for your pain and frustration, there are many who post here that have been there, done that, hated it! I started having pain and problems in my late 20s, went to doctor after doctor, was treated terribly, like it was all in my head, like I was some "funky junkie"; while I just kept getting worse; fast forward to when I was 45, still in awful pain, I had resigned myself to existing like that; got a new pain, went to my family doc, and finally, finally a doctor actually listened to me and did an MRI. And then I was finally diagnosed-scoliosis, spinal stenosis, DDD, 3 messed up discs, and really bad arthritis over the whole mess. And then the fun really started, but that is another story....I tell you this not to discourage you, but to tell you don't give up! It is so sad to have to fight so hard just to get decent medical treatment, just to be treated with respect and dignity, but you need to keep fighting, need to hang in there until you find a doctor who will listen and find out what is wrong so they know what treatment you need. Joy and Dave have given you excellent advice, they truly know what they are talking about! Once again, sorry for butting in, but your posts really struck a chord with me, and I will keep you in my prayers. Hang in there, keep fighting until you find the answers you seek and whatever treatment you need. Take care, and God bless you.
 
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bj1208 replied to lazydazey's response:
Hi lazydazey - the majority of regular pain management clinics will start you over on injections - yes I had this done with the many ones I went to -

Finally the last one I saw stated if he had my med records on the first visit (didn't reach him til right before 2nd visit) that he would NOT have done the injection as the past ones did not work - so there are a very few out there that won't do injections if prior ones don't work.

This pain doc said he couldn't do anything for me - but did say that I would get better care by going to a PHYSIATRIST PAIN MANAGEMENT CLINIC - they go deeper into pain management than regular clinics. And as in my case, all other treatments failed, I am on heavy narcotics - which these types of clinics do not have a problem issuing IF need be.

Not all pain clinics are the same - sure they would love to have the money from the injections but there are some out there that in looking at past treatments will agree injections will not work.

I hope that you can find a PHYSIATRIST PAIN MANAGEMENT CLINIC in your area and give them a chance. I believe you will benefit from their care.

Take care - ^Joy^
 
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sbncmo replied to lazydazey's response:
Hi lazydazey. You aren't butting in. You understand what I am going thru. At this point, 36 hours later, the pain is the same if not worse. I'm not able to stand as long as before, yet sitting is painful when it wasn't before. I wish I could take Rx pain pills, but I can't. It's ridiculous.

My husband was with me during check-in and in the recovery room. He said the doctor is arrogant. I honestly don't know if this treatment is going to help. Past treatments & therapy has only made me worse. If this epidural does not help this month, I don't see the need to go for another one. There aren't many options around here for pain specialists.

I called the pain clinic back yesterday afternoon when my headache didn't let up. I was connected to the surgical nurse who also said headaches do not occur with epidurals, that I probably had a headache because I was "so tense during the procedure." I wasn't tense, I was in extreme pain, pain so bad that I couldn't breathe properly. The only one who seemed to care or understand was the recovery nurse.

I'm not a radiologist or trained to MRI's, but when I looked at the disk on my computer, it certainly looked like a disc was bulging. But again, I don't know anything about it. I wish I had a previous MRI for a comparison, but with these jerks, I don't know that it would help.

I'm going to try to talk with my medicaid worker & see if she can do anything. With all their regulations, I don't know if she can do anything. A pain specialty clinic (with physiatrists) 2 1/2 hours from here said they would take me if I can get a referal. I'll keep working on it, but it may take some time.

I'll keep you informed.

Shelia
Keep up the fight!
 
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lazydazey replied to sbncmo's response:
I also have more pain for a few days after the injections, and then it gets better; I also have headaches after the injections, but I have high blood pressure for which I take medicine and the medicine works wonderfully except when I get the injections. I seem to have a sensitivity to steroids (so do others in my family) so for me it might be a combination of that and messing with my blood pressure that makes the headaches worse. These injections work really well for some folks, my best friend gets them and they give her a lot of relief, I really wish they did work for me...but they don't.
If the physiatrist clinic said they would take you if you got a referal, then it sounds like they take medicaid, so I don't know why your caseworker would have a problem with a referal, but you won't know until you talk to her. Joy is so right, physiatrist clinics are the way to go if you possibly can, unfortunately there are none in my area or even close, I know, because I called every pain clinic around here and none of them are that kind of clinic.There are 5 pain management docs here, and they are all like my current doc; I went and talked to all of them and would have been no better off switching to them, so I didn't.
Now, the first set of injections I got, I got an awful awful headache, different from the kind I usually get, the worst I'd ever had-I called the doc's office bawling my eyes out and they calmly told me that sometimes that happens if there is a puncture that causes spinal fluid to leak out, but that it would eventually go away. Luckily that never happened again, and the headache only lasted a day and a half and then started subsiding.
I wasn't trying to freak you out with my post or discourage you, I was trying to make the point that you have to be your own advocate with the doctors you see. And I also didn't mean to sound like all doctors and pain clinics are bad and treat their patients horribly-there are some doctors out there and clinics too that are compassionate and treat patients with kindness and dignity. If you can get into that physiatrist clinic I bet you would see a world of difference in the way you are treated, and maybe they could find some way to get your pain under contol.
It has got to be frustrating for you to be in so much pain and then have the MRI come back saying everything is normal when you know the pain you are feeling is not! And it stinks that when you are in excruciating pain, just want it to stop so you can breathe, exhausted (because trying to get decent rest when you hurt doesn't usually work!) and then the person you go to for help treats you dismissively when you are at your most vulnerable just adds to your pain and misery. Then getting passed from doctor to doctor...I felt like I was on the carnival ride from hell and couldn't get off!
But please don't give up! There are good, decent doctors out there that should be able to find out what's wrong, figure out some way to help, you just have to find them. And be careful of depression, because that can go hand in hand with unrelenting pain, not being able to find the cause of that pain..take care of yourself, be kind to yourself, and never give up until you have an answer. Maybe if you could get into that physiatrist clinic maybe they could figure out a way to get you a referal to a spine specialist-if you do get in, I would ask them.
I knew there was something wrong for years, but no one woulld listen to me; when I finally got a diagnosis it wasn't exactly what I wanted to hear, but I did feel some relief because I knew at last what was causing the problems...don't be like me, don't give up and suffer for years, keep on with it until you get the answers you need. And do please keep us informed, this is such a wonderful support group, there are very kind and caring folks on here who have helped me and who really know what they are talking about. Sorry this is so long didn't mean to write a novel! God bless you.


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