<p>I’m hoping to get some advice from the wonderfully intelligent people here. I am at my wits end. My daughter has had 8 surgeries to try to correct a bone tumor (not cancerous, but locally destructive). She’s been good for 6 months, but now has pretty bad bone pain again. The bone is a mess from the multiple surgeries, so it’s hard to read the xrays, but there is questionable cystic expansion of the bone right where it hurts. The doctors are kind of dismissing us, basically saying she need to deal with the pain. I feel like they don’t know what to do, so they placate us and shove us out the door. She hasn’t been able to sleep in 2 nights because of the pain. We’ve tried, tylenol, motrin, vicodin, heat, cold, nothing works. She’s crying and I don’t know what to do. I’m so frustrated. I do not want my child dealing with this for the rest of her life. She’s supposed to be focusing on college admissions and the prom, not worrying about this AGAIN. Sigh. Thanks for letting me vent…</p>
<p>No advice, just sympathy. I know how horribly frustrating it is to see your child in pain and be helpless to relieve it. Doctors are so concerned about the possibility of addiction that they too often do not provide adequate pain relief.
<p>Does her medical team include a pain specialist? If not, perhaps that would help.</p>
<p>I’ve only had 2 surgeries. Got percoset for one, vicodin for the other. Vicodin did nothing. Percoset made me feel like myself (pain free). And totally agree with Silpat – doctors go by a “describe your pain in terms of 10 being the worst”. Tell them hers is 11. You don’t get any points for being stoic. You poor thing. If you’re like me, you wish you could take on her pain just to let her be in peace. <em>hugs</em></p>
<p>Have you tried a different set of doctors? There are specialists all over the country…maybe with a little research you could locate someone else. If I had a bad form of cancer, I would personally head straight for MDAnderson in Houston but there are lots of other great places. Near NJ, there’s Sloan-Kettering in NYC.</p>
<p>It’s very frustrating when physicians dismiss you. That doesn’t mean there isn’t someone out there that will listen and help. Sometimes you just need to be persistent. Hugs - know this must be very hard for both of you.</p>
<p>
This would be more than enough for me to go see some different doctors as MomLive said. </p>
<p>I hope the issue can get taken care of soon so your D doesn’t have to even think about this like you say.</p>
<p>Pain management basically told her to deal just deal with it. I wanted to choke him. He was sooo pompous. The problem with switching doctors is, at this point, no one else will touch her after 8 surgeries. Her doctor is really good. He one of the best in his field. I think he’s just…stumped.</p>
<p>Get her into Johns Hopkins asap ,where the best Drs for the truly unsolvable cases are. Its not an insult to her Dr if he can’t figure out the problem, but drop him like a stone if he refuses to help you find the most qualified Dr there, or give you copies of her files or questions your wanting to get her seen at Hopkins…</p>
<p>ouch. poor kid. It sounds like she is seeing specialists and maybe you don’t have lots of choices on who to see?? But, It sounds like you need to get another opinion or keep after the existing doctor. At a minimum she should see a pain specialist, another one. Keep going til you get satisfaction from someone. Sorry you and her and your family have to deal with this such an important time in her life.</p>
<p>I must second the endorsement of Johns Hopkins. My mother suffered needlessly for years from some well intentioned but bad medicine in Florida. The doctors at Hopkins were able to diagnose her from challenging and atypical symptoms and prescribe a course of treatment that has brought her lasting relief. Every one my mother dealt with was professional and compassionate. We are grateful for their vocation, they changed her life.</p>
<p>I feel for you and your daughter. I have watched a dear friend spend untold time and money to get her daughter to alternate teams of specialists across the country to deal with an unusual and frequently misdiagnosed illness that resulted in much pain and often inadequate pain treatment. I do think you need new opinions - even the best doctors are sometimes wrong and need some competition to keep them asking questions when it would be easier to assume there’s nothing new to be found.</p>
<p>I have so much sympathy for the pompous attitude as well - I wanted to smack one doctor up side the head for the callous things he said to my friend’s child, it was so obvious to those who knew her that he was way, way off course in thinking she was being overly dramatic. I have noticed, on the few times I’ve watched, that most of TV’s “Mystery Diagnosis” patients who suffer for years with bad diagnosis and sometimes condescending doctors are female - particularly young women who don’t look as though they are at death’s door but feel horrible just the same. </p>
<p>Given what I’ve watched others go through in similar situations I say put your game face on and don’t take no for an answer - get a second opinion, and a third and a fourth if that’s what it takes.</p>
<p>Good luck to you and your daughter - cyber hugs too.</p>
<p>Oh, I’m so sorry. I have had two surgeries for a slow-growing bone cancer (chondrosarcoma). After the first surgery I needed oxycodone for the pain for three months. I was extremely fortunate that my doctor was quite reasonable about pain medication: “if you need it, you need it.” The pain of the sarcoma was unrelenting; my sympathies are with your daughter. </p>
<p>I learned that there are only a few really good bone surgeons in the country. If I were in NJ and in your situation, I think I’d head for Sloan-Kettering… I know that was my back-up plan, even though I was in Seattle at the time. (I liked my doctor and I liked his plan–and his references were excellent.)</p>
<p>I would seek a new opinion as well. I also would look for a new paid doctor.</p>
<p>dkitty: I agree with menlopark and laketime about Hopkins. I have a daughter with a chronic illness (not bone issues) and switched her to a physician at Hopkins 3 1/2 years ago. My daughter’s doctor is wonderful and so are all of the other people we have met in the pediatric clinic that my daughter is seen at. Everyone that I have met at Hopkins is kind and gentle. Another thing that I really like about Hopkins is that the physicians are narrowly focused specialists so they are truly experts in whatever disease process they are committed to diagnosing and treating.</p>
<p>Another vote to go to the research hospital. My dad told so many stories about local docs dismissing problems vrs. Mayo docs solving them. Good luck!</p>
<p>I am sort of a medical mystery, and I have seen dozens and dozens of doctors, and when they get stuck unfortunately a lot of them do get dismissive because they don’t want to admit they don’t know what’s wrong. I do hope you can get another opinion, sometimes you just have to keep moving through doctors until you hit the right one.</p>
<p>I third? Fourth? Hopkins. I’m luckily pretty local and was sent there with a very mysterious eye/optic nerve/brain issue and everything seemed to work out with them they are some of the nicest doctors vie met and it’s not a diss to your doctor to try and find help that may be able to help :)</p>
<p>I agree that it’s time to search for a better medical team. I personally have seen 5 lung specialists in HI before I found one to work with the great lung doc I found in Denver. That doc helped me more in a week than the entire bunch for a year! The doc I finally found was willing and honored to be working with my Denver specialist.</p>
<p>I’m so sorry your D is in pain after so many surgeries. It sounds like many have had good success with Hopkins. I have also spoken with a doc there whom I thought was very nice, thoughtful and caring. We would have tried to get over to see him but he said he was already over-scheduled. I hope you can discuss with others where you might be able to find a good med team that can help your suffering D.</p>
<p>I’ve lost track of the recommendations…</p>
<p>Get your daughter to Johns Hopkins. Dr. Paul Colombani is the head of pediatric surgery. He’s who you go to when no one else can figure it out, or what they have done hasn’t worked.</p>
<p>PM me if you want more information on him.</p>
<p>Thanks for all the replies everyone. I searched the Hopkins website and found a couple of docs that might be appropriate. I’ll take her down there and see what they say. I did consider the Mayo Clinic as well. It’s so hard to know what the best answer is. I will also contact the doc in New York that someone PM’d me. She doesn’t want to traipse around the country going to doctors, but…Sometimes you can get a second opinion by having them review the records. Again, thanks for all the support.</p>
<p>Bone pain is very hard to handle.
I suggest that she find a Dr who uses TENS for pain.
My hospital uses it for women in labor- although I couldn’t get my H to get ahold of someone who would get it for me- but it is supposed to be very effective.
[TENS</a> and IDET Therapy for Back Pain Treatment](<a href=“http://www.webmd.com/back-pain/guide/electrothermal-therapy]TENS”>http://www.webmd.com/back-pain/guide/electrothermal-therapy)
My grandmother also used it for her back & she died about 18 years ago, so it has been out for a while.</p>