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Whom is a good Doctor for to resolve multiple areas of pain issues. Desperate.
Hi @timmytb, welcome to Mayo Clinic Connect. I added your question to the Chronic Pain group as well. See here: https://connect.mayoclinic.org/group/pain/
I'm sure you'll get several recommendations from fellow members. Allow me to kick things off.
Pain Medicine at Mayo Clinic
Mayo Clinic's pain medicine specialists are experts in helping adults and children with a wide range of painful disorders. They listen to your concerns and develop an individualized treatment plan to make sure you get the right therapy when you need it. For people with complicated medical histories and multidimensional pain syndromes, treatment may be multifaceted and require complex interventions. At Mayo Clinic you benefit from a team of doctors working together and with you, for you.
Pain Rehabilitation Center
Mayo Clinic's Pain Rehabilitation Center (PRC) helps people with chronic pain return to a more active lifestyle. Teams based at Mayo Clinic's campuses in Arizona, Florida and Minnesota use a rehabilitation approach that incorporates behavioral, physical and occupational therapies to help restore physical activities and improve quality of life. The program also helps participants eliminate the use of pain medications and decrease the use of other medications that can impact health and quality of life in the long run.
You can read more about PRC in these discussions:
– Questions about Mayo Clinic Pain Rehab Center https://connect.mayoclinic.org/discussion/status-of-mayo-clinic-pain-rehab-program/
Timmy, what is the cause of your pain issues?
Hello Colleen, thank you for support and reply.
My pain issues are doto ; all my discs are diseased cracked bulged drying out, at least 1 or 2 disc gone, more are going same way. Sciatic nerves are compressed flattened between vertebraes.
I have extensive low back stenosis, squeezing spinal canal inward space of about 4 or 5 discs, as well as pressure on Sciatic nerves.
I have curvature Spine. I have spinal arthritis. I've had 3 discs replaced over the years, 1 disc lower back, 2 discs neck plus titanium plate.
Pain shoulders arms-spurs,nerves.. I'm currently, because of pain med dramatic reductions, have no choice but to seek back surgery, but apparently have to have cortisone shots first, I've had them before back and shoulder, they Don't work on me, (they may work on others) but for maybe a week if that and pain reduce is minimal. But this is the procedure Dr uses or can't try a risky surgery again.
I'm currently desperately looking for other alternatives if possible.
I just would like to live remaining life out without incapacitating pain.
I'm 65 now.
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Timmy, thanks for elaborating. I think you'll appreciate connecting with member with similar issues in the Spine Health group here: https://connect.mayoclinic.org/group/spine-health/
If you are thinking of seeking care at Mayo Clinic, here is helpful information and contact info for each of the 3 campuses in AZ, FL and MN http://mayocl.in/1mtmR63
Colleen thank you for your info.
I'm currently not getting anywhere with another neurosurgeon (not at mayo) assigned to me by another current pcp, (not at mayo), It's a long story to say the least, and somewhat discouraging.
I just received few weeks ago new MRI., I need a Dr that knows a fixit.
What are the odds to get, a mayo Dr to look at my current MRI. ?
For a sound approach.
I have a mayo ID number.
@timmytb if you are interested in seeking an appointment at Mayo, you may use this link to make that request: http://mayocl.in/1mtmR63
Have you requested an appointment for your spine issues at Mayo previously?
I had surgery in 2013, hallux valgus, surgery, left foot was successful, right foot was complicated, and had issues, right from the start. The Dr. chose not to acknowledge, my discomfort, and issues, and re-directed me out of his hospital, to a neurologist, which is apparently code for bury the problem. Anyway. After, multiple tests, MRI's, EMG tests, X-rays, there were issues associated with my peroneal nerve, in my foot, which came as no surprise to me. I'm frustrated, and scared, if you couldn't already tell, so I apologize for the rant, and negativity. I'm quite sure I'm not alone. Anyway, the surgery, the foot, the first metatarsal, was not set right, over shortened, and then the peroneal nerve was compressed, the fat pad, under the first metararsal, has shifted to the second toe(of course), and my arch is quite pronounced in that foot. Metatarsal healed, over elevated, I have the x-rays that show this, although it has healed over, but you can still see how the arch on that foot is quite pronounced. I can't flex, the foot, I have to wear, flat shoes, which would be fine, if I didn't now, afer 8 years, of just accepting, that this is just the way "it is", now, I'm having trouble, with numbness in my knee, behind my knee, pain, in my ankle(which really has always been there), and trying to figure out how I'm ever going to find someone who understands, that's it's not just one thing. It's not just my foot, or just the peroneal nerve, it's both. So, this back and forth between a foot surgeon who says, "its a nerve problem, not my wheelhouse", and a neurologist who says "its a foot problem, not my wheelhouse", there has to be someone who understands, how these two issues, are interconnected, interrelated, and obviously, a result of the surgery , additionally, the foot in and of itself, is complex, nerves, why it's such a difficult field, and why it's so plagued with poor outcomes in surgery. I can be grateful, and I am that my left foot ,is fine. It shows, that the common approach, which I have heard twice, to shorten the second metatarsal, I will never agree to that. simply because my left foot (successful surgery), has the same longer second toe, the one I was born with, and to re-design, my whole foot, to somehow match up, with the over-shortened, misplaced, (the first metatarsal of the second toe also healed, in a mis-aligned slightly, out of place , fashion), seems completely Ludacris to me. Again, sorry. I can see on the x-rays, the curve, on the right(bad) foot is significantly lower on the spectrum, of a normal curved, align=ment of the joints below the toe, but no one has ever been willing to have a conversation about that obvious fact. What I really want, is a surgeon, who understands, or is willing to entertain, the idea, that the first metatarsal, needs to be lengthened (bone graft??), I have heard of this surgery. I'll never agree to shortening the second metatarsal. Never. And perhaps, finding the pulled nerves in-between, the first and second toe, that have always felt compressed, or squeezed, and somehow either, loosening the tendons, to give the peroneal nerve relief of pressure, and perhaps there is built up scar tissue, because the bad right foot, took so long to heal, much longer than the left(successful), surgery, and after the surgery, continued to bleed. (my bunion was really bad on that foot-significantly stretched tendons, or nerves between first and second toe). I'm really afraid, and obviously not a doctor, but when no one will actually talk to you honestly, and explain, the issues without either, redirecting me to someone else, or saying something to the effect of "its' complicated", doesn't help me at all. I KNOW IT'S COMPLICATED. And it leaves me in the position, of not feeling, heard and ignored, but also leaves me feeling like the whole decision making process, to address my issues, falls entirely on my very
inexperienced, shoulders. So, here we are. 8 years later, and I'm faced with the possibility now, of not only having issues with my foot, which I gladly was accepting at one point, of being a manageable thing, and trying very hard to have some perspective, given what many suffer, with foot issues, and thought myself, fortunate, comparatively, but that has all gone out the window, now that I have weakness , in my leg, now I am in an entirely different place. I think, It's quite possible, that I do not understand exactly how complicated it is, the risk of surgery, the fact that what I think of being this fixable, issue, may not be the case. I actually did keep that in mind throughout this entire process, but here I am, and it's quite one thing, to have minor foot discomfort , and having a significantly weakened right leg, which inhibits my ability to do pretty much everything. fortunately my PCP, is very aware, and understands, that I need to take this a step at a time. Right now I have had an x-ray, of my knee, that's how this all started 2 weeks ago, I woke up, and my right knee was numb. Now, I have numbness in my groin(slightly), my thigh is tight, and aches, as well as my ankle, and calf muscle. We initially thought, it could be a bakers cyst, the x-ray shows no signs of that, I will be seeing a orthopedic surgeon, who specialty is the knee. Dr. Thomas King, NH. I am hoping, he can help. It's really scary, and an intimidating process, because if I express my frustration, I run the risk of not getting the help I seek, because I think I know everything already. Where is that line, between what you know about your body, and what you instinctively know, and where you have to lay that all aside? Is it wrong and delusional, for me to think that "I " know what the problem is?
Hello @ajg, Welcome to Connect, an online community where patients and caregivers share their experiences, find support and exchange information with others. I can relate to the way you feel and are thinking about your frustration. I think there is absolutely nothing wrong with having that frank discussion with your doctors when it comes to your health. They may have the medical knowledge and training but you know your body and how you feel. You are in a position to advocate for your own health. I've had the feeling like you say – where is that line between what you know about your body and where you have to lay that all aside. You are definitely not delusional. I think the more we know about our own health and condition, the better we can communicate with the doctor and hopefully have a good outcome for a treatment.
You mentioned you will be seeing an orthopedic surgeon whose specialty is the knee. I'm wondering if it would be helpful to plan your conversation with the surgeon before your appointment. There are some great tips here — https://patientrevolution.org/visit-tools Do you normally plan or write down what you want to say to the doctor before an appointment?
Thank you so much for your kind and understanding response. I will definitely be following that link, for helpful tools, I'm very open-minded when it comes to learning how to communicate with Doctors, or at least I like to think so (HA). In answer to your question, I generally have this plan , loosely formed in my head, but I have been very prepared, or thought I was in the past, copious notes, index cards, practicing with a trusted and knowledgeable friend, and sometimes, they still don't have the answers for you, so I think, it need to be mindful of the fact that, not helping me is not the same as not wanting to help me, sometimes, they really don't know, That's hard to take, when your feeling desperate, and afraid. That said, it's probably a good idea, to always be prepared, whatever the expected response, just so that I'm clear, and don't get sidelined by emotions, which is expected when your in that situation; white coat, intimidated, fearful, etc. I feel like I have heard stories, experiences, from others, having gone to several Doctors, before they finally find someone who can help them. The process is very difficult, but I think it's important to understand the basics, of communication, Doctor to patient, and I recently read an article, in regards to "not trying to be the doctor", but also speaking up for yourself. I tend to be forceful, when I'm scared, which they sometimes misinterpret, as "telling them what to do",….so perhaps it's a balance. Thank you as well for your encouraging words, of support, in regards to me feeling like I know what I know, and trying to not be discouraged, if myself and a doctor, are not seeing eye to eye. I suppose that's to be expected, especially so when a situation is complicated. My mother was a nurse, so I was trained to be attuned to my body, and how it works. It can be a help, and also a hindrance, when I go too far, and try to reach for more than I'm able to understand something in it's entirety. It's very difficult to stop "trying to figure it out, on my own", when you haven't been listened to. You literally feel, alone, in your issues, and finding solutions, based on a limited amount of information. So, naturally you could draw the wrong conclusions, based on incorrect information, speculation, and fear. It's hard. I am really really glad, you responded in a way, that makes me feel validated. Thank you.
@ajg – I hope your upcoming appointment goes well and you are able to give us an update on how it went. You might find the following YouTube video interesting. I had the opportunity to hear Dr Montori at a Mayo Clinic talk a few years ago.
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