I hope everyone is not suffering with pain too bad and that for those that are that you will soon find a doc to provide you with the care that you deserve!!
I'm alittle frustrated tonight and really need to vent.
First off my poor daughter who is 23 and has been a cheerleader all her life recentley had her MRI done which showed a ruptured disc as L5 and a herniated disc at L4. She also suffers from scoliosis as well as spina bifida, which we only just discovered she had in Nov of 2008 when I took her to see my surgeon about her back pain. We both have appts on Monday with the surgeon, they actually fit her in as there is a sense of urgency with what the MRI findings were. For the past week she has called me (she attends college) in tears, literally at times unable to talk due to how severe her pain is. I told her last week to call the oncall doc, which she did, however he completely dismissed her pain and told her to take aleve or to go to the ER. So since then she has been too afraid to call for anything. So today she called me again in tears and this time I was P***ed because she didnt want to call the Doc's for fear they would tell her the same thing. So I got on the phone and left a message for our surgeon's nurse, basically telling her that my daughter was experiencing intense pain and that when she called in last week she was told to take aleve and therefore she has been too afraid to call in to ask for anything else, so she has been suffering for a week and could they please call something in for her, to get her through until Monday's appt. Our nurse called me back and unfortunately I missed the call, but she left a message saying that she was soooooo sorry that she was told to take aleve last week, and they would most definatley call something in for her, that they didnt realize how much pain she was in because the oncall doc failed to say anything about her calling in tears last week, that it would be handled and for us to both come at the same time on Monday and again she apologized profusely and said she would get in touch with my daughter immediatley to get a pharmacy number to call her something in.
Dont get me wrong I absolutley love my surgeon and his nurse, they are wonderful people, its the other doc's in the practice that I cant stand. They did the same thing to me 5 months post op from my fusion when I had called in one night and I got the SAME oncall doc, and instead of calling in what I had been taking, he wanted me to stop that med completely and he wanted to switch me to what he wanted. I told him straight up, that I was not his patient, that he knew nothing at all about me or my history and had no right stopping any of my meds and switching them without the consent of my surgeon. I guess I was right, and he realized that and kept me on what I was taking. When I saw my surgeon the next time I had told him about the conversation and he said that it should have never happened, that nothing should be changed without his consent and that if the Doc had any concerns, he should have called something in to get me through the night until the next day and then had him handle it from there. He said he was going to discuss it with the other doc, but I guess its still happening, because he dismissed my daughters pain.
I explained to my daughter that she should never have to be afraid to ask for something for pain from her doctor's office and that it really ticks me off that patients, including myself are so fearful of being labeled because we do ask. This is really begining to irritate me now. At first I wouldnt say anything and I would suffer through it, then I got to where I would just come out and ask for something, if I was told no, then I would look for another doctor, but then your labeled yet again as doctor shopping. Well yes, of course i'm doctor shopping, but its not to get prescribed meds from each and everyone at the same time, it is to find ONE doctor that is willing to treat my pain with whatever works.
This is just getting ridiculous now that patients are really suffering from debilitating pain because there are idiots out there that want to enjoy a night of euphoria, they are taking away from us, the people that truly need the med. Its not that we WANT the med, we NEED it to function. What they take for granted and dont even think about on a daily basis, we struggle to do, suffering the consequences of pain afterwards.
Then you have the "good" doctors that are willing to treat patients in pain with strong meds and for long term, and they end up getting locked up because street junkies go in and fake they are sick, or the DEA sends in a dummy patient. I would have to say that most of the docs that are treating pain patients now almost 95% of the time want to constantly inject you even after you've been through them and its been found not to work. So once again we agree to be injected, even though for some it causes more pain on top of what we already deal with, just so we can get medication to control our pain. Patients will do anything just to get decent care and it sickens me that we have to be subjected to treatments that have failed in the past just to walk about of an office with a 30 day script.
I'm seeing this new PM doc now that wants to inject me every which way, and of course I agree'd to it, but I agree'd for two reasons. One was because I want to give him a chance to see if HIS way works, but I also agree'd to it so that I could get the meds that work for my pain. The truth of the matter is after being injected now for 2 yrs by 2 different docs, this is probably not going to work, although I am really trying to have a positive attitude. I am very thrilled about the aqua-therapy though, which has not been tried yet and i'm anxious to see how that works, but since i've had my fusion several other problems having to deal with pain are now apart of my life, so what was just a lumbar problem, has now turned into sciatic pain, osteopenia, muscle and nerve damage, a failing L4-L5 level, a dragging leg and much more pain than I ever had before my fusion.
I just feel broken and i'm so tired of fighting to get the pain control that I feel I deserve and that I shouldnt have to be so afraid to ask for and now i'm so worried about my daughter now and her having to go through the same crap. I'm hoping that since she is younger than me that she will heal faster and wont have any other problems afterwards. She has already been told that her only option is surgery, so our appt on Monday is simply to go over her MRI and to discuss how severe it is and what he would like to do and when. My appt with him, is to set up another Discography for the L4-L5 level, to see if we need to fuse that level now as well and to also go over this "partial" fusion word on the report and what does that mean.
I live 20 mins outside of DC and i'm just so tempted to take my venting to the "Hill" about how its completely ridiculous for us CP patients to have to suffer and be afraid to ask for relief so we can function like normal human's do. To let them know that I find it disgusting that patients with medical records, MRI's, Ct scans, xrays & discography's, ect that PROVE that there is a problem that does cause severe pain should have to even be questioned about treating they're pain, the proof is on paper, in pictures and is in black and white, provide this person the pain relief they need and stop treating them like a street junkies. Worry about the people that dont have proof there is a problem and treat the people that have proof with some respect. I dont know maybe i'll write a letter to my Congressman to let him know how I feel about all this.
I am sorry your daughter is in so much pain. THat is my fear...passing on my bad genes to my children. I plan on helping them stregthen their backs early on so it becomes part of their daily ritual.
I am too in the process of fighting for some pain control. My PM doc has decided not to change my meds and of course, I have to be compliant and do what he says. He normally is VERY good at listening to me, but for some reason, he wants to do it his way. So, here I sit..in PAIN, and horrible GI problems from this med he has me on. I plan on bringing my husband with me to my next apt so he can help me gently explain why this med is not working. But like you said..it STINKS that we have to sit by and suffer.
In my experience, every time i ask for more medication I get less or actually get none. Last time I wanted a higher dose I told my doctor I would like a smaller dose but would like to take it more often. This sort of reverse psycology worked and he actuall increased my dose. I am so tired of playing games with these doctors. It's rediculous.
Sorry to hear about your problems...Sounds as if things are really tough. I'm sooo sorry.
First, I would set up an appt / meeting with your surgeon and talk to him straight up about this internal conflict with the others in the practice, but more specifically, the one Doc. Makes me wonder if he did this on purpose (with your daughter) due to the last incident where your Doc talked to him about your meds.
I would just ask him point blank how we could avoid all of this moving forward...Maybe you have to deal with him directly from now on. I'd let him propose a solution since it's his office causing the problems.
Then, I'd tell him about your PM Doc and your situation there...Injections not working & etc. Ask him if maybe you can have a referral to a new PM doc. If you live 20 minutes from DC, there has to be a ton of options for you and surely your Doc knows of a good compassionate pain Doc. Make sure you use the word "compassionate" as it translates to "understanding" and "liberal."
I would reinforce that you've been very patient....Complying with everything and enduring a ton of painful injections. Really appeal to him passionately, but respectfully. After all, if he's your surgeon, then he of all people should know exactly what kind of pain you're really in.
That was a very good rant, Lisam. It is a battle and it's so wonderful when one finally finds a compassionate doc. I would be careful going overboard with injections, though. If they haven't helped you after a couple, they probably won't. I know many PM practices are injection mills, mostly because the profit is so large. ESI"s are not without possible complications, though. Though it's rare, arachnoiditis can be the outcome. I have this disease and wouldn't wish it on anyone. Even an epidural for childbirth pain can cause this disaster. In my arachnoiditis support group, there are at least 4 women who had no other assault on their spine than a childbirth epidural. I know you have to play the doc's game if he wants to inject, but please think about this problem that probably no doc will tell you about. It is often diagnosed as epidural fibrosis, FBSS, or other diagnoses that docs use when they are out of options or cannot help anymore. Blessings to you and your daughter as you seek treatment and relief.
I agree with you alot of what you suggested. We both have appts tomorrow (Monday) and I think I may just have to get serious with him. I normally get so intimidated when I talk to Doc's because they hold the power in they're hands to control whether I will suffer from pain or not. I really hate that someone has that much power over my life. Most of the time when I go into see a Doc, I will agree with everything that they have said, I will do whatever they want me to do, because i'm afraid that If I disagree with something or express my thoughts, that they will shut me down.
Is really sad actually that I feel this way or act this way. I just dont feel like people such as myself and many others like me, that suffer from CP are treated with respect or that we are believed. So many Doc's have been burned because of street junkies, that they have destroyed any trust that a doc might have in a legit pain patient. Even though we have proof of problems that clearly create pain, we are still questioned and doubted.
I think tomorrow i'm going to really speak the truth in how I feel, in that like you mentioned Ex, that i'm looking for a "compassionate" doc and not just someone that wishes to use me as a pin cushion after its been documented so many times that these procedures just dont work on my pain and simply make them worse. Why create more pain, when the goal is to decrease my pain to make me as comfortable as possible. There has to be a stopping point, where someone says, ok... look this is what she has been through, this is what has made it worse, this is everything that we've tried and nothing has worked on her, there is no point in putting her through anymore or this, lets just treat her pain with what has been working for her and allowing her to function at a level she is comfortable with. I think i'm going to ask our surgeon tomorrow about this stopping point. When does someone step to the plate and say enough is enough, we've done everything we can with treatments, its time to just let her live now.
I will certainely be back on after my appt to let you all know how it goes. Please keep my daughter in your thoughts and prayers that this isnt going to turn into an emergecy surgery type situation, she would ideally like to hold off until May so that she can finish out her semester of classes and so that she can graduate with her College class. I have a bad feeling about this though, being that one of her disc's has ruptured, but I can only hold some hope for her.
Good luck to you and your daughter Lisa. I hope you get somewhere with your approach to your doctor. And I hope your daughter is ok. I have heard of people that have had ruptured disc wait for surgery.....unless there is bladder/bowel issues, I think she will be ok till May. Lets hope so anyways. My daughter is in college too and I know the importance of attending class daily and taking exams ect. I pray that she can hold off surgery.....
Keep in touch and hopefully will be good news tomorrow,
OMG!!!!!! I am sooooooo P***ED right now I cant see straight. I can NOT believe that this is happening to my poor daughter!!!!! As you all know from reading the begining post, I called the doctor to get my daughter some pain relief for her back and they called in some pain medicine for her. This is after she has been suffering in tears and was too afraid to call them for fear they would tell her no. So I called and they took care of her.
She calls me tonight in tears again, and i'm thinking... oh no, the medicine isnt working and she must be in horrible pain. NO.... she calls to tell me that someone stole her entire bottle of pain medicine that was just called in for her on Friday. I just wanted to scream!!!!!!
I said to her "didnt you hide them"!!!! and she said that no, she meant to take them out of her purse prior to leaving for practice and hide them in the house, but realized when she got to practice they were still in her purse, so she put her purse in the lockers and went about her practice, thinking everything would be safe. So at the end of practice she drove home and was sore as they did a pyramid and it collapsed and she was landed on (which totally ticked me off that she was doing any of this in the first place) and when she went to find the medicine she couldnt find it anywhere, thats when she realized she had kept them in her purse and someone had gone through her purse and stole the ENTIRE bottle.
I explained to her, that she CANNOT carry around a full bottle of medicine, nor can she tell anyone, including her roommate what she is taking. That she is in college and everyone who enjoys pills is going to take what they can get regardless if it hurts the other person or not. That she cant even trust her friends at all, not with this. This is her first time having to deal with pain medicine and I guess she just didnt think anyone would be so cruel and bold to steal from her. I think she has learned a very valuable lesson in that she has to keep quiet and hide what she has and only carry on her what she needs for a day's worth.
It was a 7 day script, so thank god she wont have to be without too long before she can get a refill.
This just makes me soooo sick though that people would do this to another person.
Unfortunately most chronic pain sufferers have had their meds stolen at least ONCE and we know that people just don't CARE about how it may hurt YOU but just how THEY will feel doog for a while. I assume the meds were Vicoden or Ultram since they were called in and can be refilled. your daughter needs to be careful when she gets her next fill as the perps will be looking for it
Kat... Yes the medicine was vicodin 5mg. I felt horrible for her and at the same time so angry that someone would do this to her, knowing how much pain she was in. It just makes me sick.
We did go and see our surgeon today for our appts. and she did tell him the truth, about leaving them in her purse at practice ect.... The rx was written as a 7 day supply so, today would have been her 4th day on them, so he went ahead and wrote her another script. He stressed the importance of not telling ANYONE what she was taking and for her to hide her meds and to NOT hide them in her clothes drawer or under the mattress as these are normally the first place seekers will look for something. After we left I explained to her how lucky that she was that he wrote her another script, that most Doc's will not rewrite a script for pain medication if its been stolen as this is a classic story for many drug seekers and unfortunatley even if it is a legitimate story from a patient that is truly in pain, they have to follow they're policy and protect themselves and in doing so they will no write another script. So I told her to thank her lucky stars that he did this for her. When she left to go home, I stressed again the importance of keeping her meds in a private and safe place and to only keep on her what she needs for that day if she is going out anywhere.
Now on to her appt. and what happened. I did not know that a herniated disc was the same as a ruptured disc, so I learned something new today. Anyway she has a very large ruptured disc at L5 and the L4 is almost there, but isnt a concern at this point. He was really concerned about how big the other one was. There is no other option but surgery due to the size of it and he was absolutley amazed that she isnt experiencing pain down into her leg, he said he was actually shocked that she was in as good a condition as she was. He said that it was more than likely due to her being in such great shape from cheering for 15 yrs and for anyone else with that size rupture it would have laid them out in agony. I told him to not let her smiles and laughter fool him, that when she has her flare-ups she is in bed, cant move and in tears from intense pain, but he said he didnt doubt that at all, its just that with what he was looking at, she should be like her flare-ups 24/7. I guess it pays to be 23 yrs old and in great shape!!!
Ideally he would have liked to have gotten her into surgery ASAP, but because she is doing well and has good days that she can tolerate, then he said that he would be willing to hold off until she finishes her semester in May, HOWEVER, she has a tremendous amount of weakness in her left leg and if at any point her leg starts to drag, she is to call him immediatley and she will have to have emergecy surgery right away, no if's, and's or but's about it.
It got really sad when I brought up her cheerleading and of course she immediatley broke down and the tears were like waterfalls. I felt so bad for her. I explained that this has been her life for the past 15 yrs and it means everything to her and she was afraid he would tell her to stop. He said that she could continue to cheer, but in light moderation, nothing heavy, such as lifting others, or being tossed in the air and that he wanted her to understand that although he is allowing her to continue to cheer, she needs to understand that she will more than likely experience more pain than usual and that is something she will have to deal with as a consequece to doing what she loves to do. He said that she is in NO danger of landing funny and becoming paralized from this but that it will simply increase her pain. So he told her to just really take it easy on the cheering. I think that made her feel much better that she didnt have to completely give up her love of this sport. She is a highly competitive girl and to be told she would have to stop alltogether would have been very hard on her.
Ok.. the surgery that she has to have done is actually a much easier surgery than what I had to go through. I had a fusion done, but what he is going to do to her, is make a small incision in her back, cut through her muscles and simply remove the ruptured disc material and any other particles that are left floating around. I am not sure exactley what the procedure is called as he said alot of things today and I cant remember what he called it. It only requires a day stay in the hospital and the recovery time is approx 6 weeks with some physical therapy afterwards. He did say that eventually she will need a fusion down the road, but not anytime soon. So it is a much lighter surgery than what I had gone through and of course she was really happy about that. She was really worried about a fusion and taking 6 months to recover and missing her graduation.
So yes there is a sense of urgency in that she has a large rupture, but because of how well she is doing, he'll allow her to wait to finish classes, but if anything changes then he has to do what he has to do an she has to accept that.
Now on to me, He is a bit concerned with the intermitant dragging of my right leg and I need to keep an eye on it, just like my daughter if my leg begins to drag all the time, then its immediate surgery, right now he wants to just keep an eye on it and see if the leg brace helps at all. He is also in contact with my PM Doc and has agree'd with him that we should try the Injections, if the injections fail (as they have always in the past), then its onto another Discography to see if L4-L5 level needs to be fused. He said that either way if the pain simply continues and does not get better that it may be time to consider filing for disability and simply keep me comfortable with medications. So I guess in a sense my question about when does a Doc say that enough is enough, nothing has worked, was answered today, which would be if after these next set of treatments and or surgery dont work, then this would be the stopping point. I didnt ask, but i'm going to assume that if this next step does fail that he will refer me to someone that does treat long term with meds, because the place i'm going to now, does not treat long term.
So thats about it for the both of us for now. I will keep everyone posted as to what happens next and if anything changes.
Hope you all are as comfortable as possible...
Hi Lisa, I think the surgery she is going to have is called a Micro disectomy. My dad has had 2 of these and has done very well from both of them. It is a lot less recovery than what you and I had. I had a laminectomy for cauda equina syndrome as I lost bowel and bladder control and stil have a lot of numbness and issues from my injury. my surgery was so quick. I presented at the ER room with horendous back pain and numbmess in my saddle area to my legs, I remember not being able to feel my saddle area at all and could not tell if I was going potty or not. I was carted right off to the OR after my MRI was done. I have never been the same since. I am so glad your daughter needs the minor back operation and the sucess from the Micro D is really good and the recovery will be much faster. my hospital stay was 8 days and I could not go back to work for 4 months, but it wasn't as aggressive as a fusion like what you had. I really hope you don't need another back operation. that would be dreadful. I will pray for both you and your daughter. it would seem to me that she shouldn't do any cheering as its hard on her back and must cause a ton of pain for her with a ruptured disc. I hope she realizes this and doesn't do any more damage to her spine.
I am so glad he called in more meds for her, and I know she will be more careful this time. I hope the meds help with her pain.