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chronic intractable pain
Good morning all.
I am fairly new to "NeuroTalk" and I am looking for some input. I have already posted several times to the section on Peripheral Neuropathy & the Spine section. Here is bridfly my story. I have been thru 7 spine surgeries which includes surgery to implant and remove a spinal cord stimulator. I have severe cervical and lumbar issues and have had surgery where Harrington Rods were used. I still have spine issues and ongoing problems that include: weakness in my arms; radiating pain into my shoulders; numbness in legs; loss of balance issues; An EMG was done and showed severe nerve problems in my cervical and lumbar regions; severe arthritis in cervical and lumbar regions and neuropathy. Other healh issues include; Type 2 diabetes; congenital absent left kidney; right kidney disease; surgery for a blood clot on my left leg and surgery for pancreatic cancer. I started to see a new neurologist about 8 months ago or so. He started me on medication for pain management. Initially I was on Oxydodone and baclofen but was taken off of it because of side effects that didnt go away. I had trouble breathing and lightheadedness. So I was put on Hydrocodone/Tyelenol 7.5-750 mg and can take a maximum of 6 tablets per day and Tizanidine 2 mg tablets where I take 3 tablets per day. But here is what i noticed on the Rx. He put down a diagnosis of "Chronic Intractable Pain." From what I saw when I googled it, it said basically that with all that is wrong there is no other treatmet options left. So does this mean just medicate me at this point that I am at the end of the road for finding any answers or treatment for what is wrong. I'm finding that when I see him and the meds arent working the answer is just increase the medications. How long can you go on and just increasing the medications so that I can survive and function during the day? I guess I am frustrated beyond belief at this point. I find it difficult getting thru the day without the medication. But on the medication I find it difficult as well due to side effects. I guess I am just looking for input on what Chrong Intractable Pain is and how to deal with chronic pain when there may be no answers or treatment left. Thanks for listening. Allan |
Hi Allan,
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There are many good resources on the web for information about chronic pain and ways of dealing with/treating it. Some can be found in the Sticky Thread above, including some I just added. Some others I've found helpful/useful are: Practical Pain Management Pain Treatment Topics and their respective links pages. Quote:
Pain medication is nothing to be feared or ashamed of. Many people are stigmatized for taking pain medications they need to function, and that's ignorant, illogical, reprehensible, and just plain wrong. Other kinds of patients are not stigmatized for taking other kinds of medications - only pain sufferers. People may argue that that's because there is so much abuse of pain medication, but the fact is that abuse among patients in chronic intractable pain with no history of abuse or psychological problems is extremely rare - less than 3%. Chronic Pain Fact Sheet http://www.cssa-inc.org/Articles/Chronic_Pain.htm Materials Distributed at AAPS 9/18/2004 Briefing to Congress - "Politics of Pain" http://www.aapsonline.org/painman/pbmaterials.htm Quote:
We all deal with it... well, we find ways of dealing with it. What choice do we have? We do whatever we have to do. I deal with it one day at a time. I spend a good deal of my days distracting myself from the pain. I try to be involved in chronic pain awareness and advocacy. Other people find other ways, and I hope they'll join in with what they do to deal. Doc |
Hi Allan ~ I'm so sorry you're dealing with all those issues. It sure has been a rough road for you.
My diagnosis too is "chronic intractable pain." I've also had surgeries, implant & removal, and now I'm just on medications as surgery is no longer an option. Have they ever suggested the Morphine pump to you? Or is that not an option? I'm concerned about long-term use of the Hydrocodone for you, as it has the "Tylenol" in it, which is VERY damaging to the liver when used long term. You should have a liver-panel test every 6 months to be sure the liver is working well and not being affected by the "Tylenol." I just thought perhaps the Morphine pump might be an option for you. I had the trial for it, but the docs weren't thinking cause the stimulator was too big for me and tried to working itself OUT of me -- and the pump is even bigger than the stimulator, so i don't know why the tried it on me. LOL But it worked GREAT, darn it. Are you not able to take any opiates at all, i.e. Methadone, MS Contin, etc.? They'd sure help with the pain. ;) I wish I knew what to suggest. I agree with Dr. Smith in that I'm not sure you have the best doctor in the world. :confused: I wish you the very best. God bless & take care. Hugs, Lee |
I too have daily pain, at different levels and numbness. I tried different meds mostly OTC, but here in Oz you can get codeine/ Panadein without a script. The thing that works for me is hydrotherapy. Daily baths. Nice long ones and a spa/ jacuzzi whenever I can get it.
I also think you may consider a pain clinic. Your doc doesn't seem to get what you are feeling and that,s not right. If he can't help you, he should refer you to a pain management doctor/clinic. Aussie |
Thanks for the input.
Doc you mentioned a website about intractable pain by Dr. Forrest T. I think when I was first looking into intractable pain I came across the site, saved to read later, then quite honestly I forgot that I had it. Will read it and see what I can get as far as informationa after I've read it. As to doctors, I started with the neurologist I think back in November or somewhere around that time. He was recommended, BUT quite honestly really have been questioning myself if he is the best doctor for me. So I will be looking for someone else. I am limited on what medications I can take. I was born with one kidney and am in kidney failure. So taking NSAID I can't take as per my kidney doctor. So there is some limitation on my medications. I had the spinal cord stimulator but didn't work for me. As to the Morphine pump Ive thought of it but didn't talk to the doctors about it. It sort of scared me being on the medication and not sure I can give you any explanation on why. None of my doctors mentioned the pump to me. I am finding that my days are getting worse over time. Getting out of bed sometimes is a big task, getting up from a chair is a problem at times too. Overall I think I have been getting worse and that bothers me big time too. Need to see who is on my insurance plan and make decisions on who to use. While I like my neurologist I am not sure that this is his area of expertise. so if I am thinking that then it is time to change. will keep you posted and thanks for listening. Allan |
Allan, you might want to look into Lidoderm patches.
Applied to the spine, they may block some of the pain for you. Application to the "sweet spot" may take a few days to find, because it is different for each person. I used them originally for my meralgia paresthetica, and after 2 weeks the nerve stopped firing so much, and I had a remission. Heat still can set it off some but not like it WAS, that is for sure. |
I think I was on some patch years ago and had trouble with side effect. May have been fetanyl patch but cant remember.
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Doc |
when I tried the morphine pump, the medication DID NOT get to my "head." It was explained to me that it only is bathing the nerves with the medication, and it doesn't get to the head, so there is no real side effects. Now, how true that is, I don't know. But I did NOT feel ANY side effects at all. All I know is that for the day that I had the trial, I didn't feel ANY pain at all!!! Unfortunately, like I said I couldn't have the pump. :(
The Lidoderm patches are only "topical" patches and do NOT get into the blood stream. So there should NOt be any side effects at all. I found that they didn't help my pain at all because they ARE topical. They didn't get deep enough to have any effect. :( The only problem you MIGHT have is with the adhesive that is used to keep the patch on. But they might be worth a try for you. Anything is worth trying at this point. ;) Wish I could help. God Bless Pebblebeach2 -- thanks for updating us. Hugs, Lee |
Leesa is correct.... that is why I mentioned the "sweet spot".
There are little if any guidelines about placement. The manufacturer did not do studies on this, and many doctors are clueless. I worked for several years at a large nursing home medication provider, and we'd get calls all day long about "where to place the patch" etc. Doctors and nurses tend to be confused too. One needs to have the nerve distribution understood from anatomy illustrations to have effectiveness. And in some patients, they don't stick well, but there are tricks for that too. I really like them. They have saved me from having to take medications, with awful their side effects. I'd also suggest using some ice packs on your spine at the levels where you know you have problems. Ice twice a day can be very effective too. I am doing that this week in fact for myself. Unless you have RSD.... ice is very good for turning off pain signals. I found HEAT very stimulating for myself. So I avoid that. I think people give up on Lidoderms way too soon. In my case, the nerve was so active I couldn't stand it... like 100 beestings all the time, etc. Some call MP pain like a lightning bolt, but that suggests it goes away for a while. Mine would stab me but remain like 100 beestings for hours. days... 14 days of Lidoderm and that stopped. I can feel twinges with it if I overdo it, like overextend my leg, or sit in a hot tub or sauna for 10min or more. But on a daily basis, my pain is in remission. It was nothing short of a miracle. |
Hi Allan
Sorry you are going through that with your back. I am fused C3-7. I don't usually recommend any kind of medication, but there are those that do not give you side effects at all. No light head, or sleepy feelings. I take MS Contin, and have for many years. I have not needed to up the medicaton, and it works most of all. I was increased gradually until some relief was found. I hope you ask your doctor about this medication as a possible alternative for you. Tylenol, does have liver problems assiciated with it. I have stomach issues, and this medication has not hurt me. Please let us know how you do. You have been through alot, and I wish your surgeries had turned out better. ginnie
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Thanks all on the response.
Ginnie as to MS Contin. I am not familiar with this medication. One thing and I am not sure if I included this in the post or not, but I am limited on medications as to what I can take. Because of being born with one kidney and having kidney disease in the one I have some medications are off limits for me. I have a feeling MS Contin I could probably take but need clearance on that from doctors. I am seeing a neurologist and really thinking of changing doctors. Not sure if I will a Pain doctor or another neurologist that specializes in pain is still up in the air. I'm seeing who is on my plan that I feel is best qualified to handle me since every doctor that I see says I am a complicated case. I feel like I live my life as ok which doctor do I see next and that is where my world revolves around. Just trying to survive each day. Anyway I appreciate all the input and support from everyone. I feel I can only talk to someone that is in my shoes, no one else seems to understand where I am coming from ............... |
hi pebble
I hope you find the doctors you need, so you don't have to look around for another one. That is hard to do, and I have had to do this as well. I have a pain specialist, and neurologist. The pain doctor is new after being with another one for the last 5 years. I hated to look around, and interviewed 3 before I found this one, who is also a Physiatrist. She takes the whole body into consideration, not just the pain problem. She is an MD of course, but the Physiatist, is another branch of medicine, that tries to use vitamines and gets you into a healthy state.
This med. that I mentioned is morphine in low dose. I really get no side effects at all from it, yet it controls the pain pretty good. I also have to be careful as I have barretts esophagus, that started with Gerds. I can't take the meds. that upset my stomach. It is a big decision to go on any narcotic, and this one is no exception. You have to commit yourself to be very careful and follow the directions exactly. You can't skip doses, or just take it when you want. I really hope you find both a doctor, and medication that will work for you. take care, ginnie |
MS Contin (also available generically) is continuous release morphine sulphate, which is metabolized in the liver. As I think you observed, there's really no way to tell how you (or anyone) will do on any pain medication without trying it, and carefully titrating to establish an effective dose with tolerable side effects. That could take some time, but that's just the way those things go.
It's possible to find/have a pain management doctor with a background in neurology, but there's nothing that should preclude you from having more than one doctor on your team. Again, it can take some time and considerable effort to build a team that's the right fit, but many of us can tell you it is soooo worth it. :yahoo: I think most of us have multiple doctors, but that's a personal choice of whether you prefer multiple perspectives or are more comfortable with one doctor managing all (a role usually filled by the PCP). There are no right/wrong answers there, but in this day of specialization, the latter may be a challenge to find, especially in a limited plan pool. Many of us know, and can relate to, the "guinea pig complex" well, and the unpredictable, unreliable life of one day at a time. Doc |
Hi all. I've been doing some research looking for another physician that may be able to deal with my pain issue.
I looked at the directory from my insurance company and found a list of doctors that deal in "Pain Management." I found a number listed in Philadelphia, Pa itself. I live in Jersey but can take a train and be in Philadelphia in about 1/2 hour. So it is convenient. I found one doctor that is affiliated with a major teaching hospital in Philadelphia. Two of my other doctors are at the same location and it is a great hospital. So between their reputation and having been a patient there I am confident in the facility. When I normally try and find a doctor I usually look for several things. First I usually do like a recommendation from someone else but when that is not possible I look at the following: I look at how long they have been around; who they are affiliated with; undergraduate work; medical school; fellowship etc. This one doctor is listed under Anesthesioligy with interests in Pain Management. His interests revolve around spine related issues. As to undergraduate education he went to Yale; Medical School NYU Medical School and did his residency at the same hospital that he is now affiliated with. On paper he looks good. I've run across some instances where on paper they look good and then meeting them it was another story. What criteria do you all look forward when evaluating a physician. I know beyond the above I wont know till I meet them. And then it comes down to ability to listen; communicate etc. Any opinions/suggestions. Thansk for listening. Allan |
We do pretty much all those same things. Sounds like you've got it pretty well covered, and I agree with your comments/observations. I can't think of anything off the top of my head, but I haven't had any sleep. :boy(sad):
Just did (think of something). Another thing we look for is any disciplinary actions, complaints, etc. I don't recall how/where; my better half does most of that for us. FWIW, Angie's List, a pay rating/review service (NAYY) is rating/reviewing doctors now. They haven't been doing medical professionals for very long, so they may not have a lot yet, but it's growing. Several of our doctors are also affiliated w/ the same major teaching/med center, which has advantages in that all our records, etc. are right there on the same system. Now if we could only get them to talk to each other! :rolleyes: Doc |
Hi Allan
You are right on track with finding a doctor. I do the same thing, and research qualifications. That ability to listen is so very important. May I also suggest you keep a journal to write down all your symptoms, when they occur, intensity, duration. Most pain physicians respect a patient when they keep track of what is happening to them. I hope you find some compassion in that doctor too. I interviewed 3 before I chose one. I wish you all the best. ginnie
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Thanks all for the response. I always felt that you had to get the best possilbe medical treatment possible. If you don't like one doctor for whatever reason, then my attitude is NEXT.
I have been to doctors who have TOP NOTCH rankings; education etc. But when it came to communication and them listening answering questions they ranked a big ZERO. It got to the point that some doctors walk in the door and my hunches kick in and say uh-oh. But then on the other hand I have been lucky in that some of my other doctors are the greatest. They have gone to bat for me when needed to the point that I feel literally that they have saved my life. One quick reason on why I feel being pro-active is so important. I was diagnosed with Parkinson's Disease in 1994. Got a 2nd opinion and confirmed the diagnosis. April of 1997 while consulting for surgery on my spine I was seen for a neuro consult and was told I don't have Parkinson's Disease. I was misdiagnosed and by that point I was on 3 heavy duty anti-Parkinson's medication. Since that time my attitude changed and began looking at things a lot differntly. So if people question me why I am always searching for answers, questioning doctors and yes suspicious at times and not trusting that is the reason. Thanks again all for your words; your input and your support. Allan |
Hi Pebble
Yes, that is what all of us should do. Question all doctors, and keep going until you find the best possible care. So many folks hesitate to drop a physician who is not doing their job. You are an inspiration to all of us to keep on going, until the right solution is found. ginnie
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I find that while yes I do get extremely frustrated with the way things are in my life. Eventually the light goes off and I find I have to get back on track again.
I've been thru too much and faced death too many times to just give up on life. I survived for a reason and must find a way of continuing on in life one way or another.................. |
Hi all. I was just wondering about something. First of all as you know I am oh Hydrocodone/aecetminophen 7.5-750 mg and tizandine 2mg 3x's per day. I take the Hydrocodone in varying amounts depending on how I feel.
The maximum per day is as per the scripts 1 1/2 tablets 4x's per day for a total of 6 tablets. I have not taken a full days dosage yet. Some days I may have taken only 2 tablets other days I may have taken 3 or 4 tablets. Now here is my question. Not sure where I read this so I may have mininformation. Isn't there an effect on the liver after long term use of Hydrocodone. If that is true then shouldn't some type of test i.e. blood work be done to make sure that there is no damage to the liver? Please clairfy your understandins. Thanks for listening. Allan |
Allan
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I take Oxycodone daily. Oxycodone and Hydrocodone both have Acetaminophn added to them. In my case, I take Oxycodone 7.5mg-325mg. The 325 is the amount of Acetaminophn. If you look at you Hydrocodone, you most likely will have the mg's added with another which is the amount of Acetaminophn. Since Acetaminophn is a cause for concern for liver damage, I have asked my Pain Spcialist to give me the lowest amount of Acetaminophn. Both these meds work better with this added; but the Oxycodone or Hydrocodone is not a concern for the liver; just what is added....Acetaminophn. Hope this is of some help. Gerry |
the dosage i am on is 7.5 - 750. I thought the 750 was the amount of acetemeniphen in the prescription. Or is that wrong?
is the 7.5 the hydrocodone dosage? what is the 750 mg for? |
Hi Allan
The first number is the amount of the narcotic. The second number which is the 750 in your case is the amount of aecetiminophen. Your liver should be checked now and then if you are on this long term. Take care....ginnie
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Yes
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The -750 is the amount of aceteminophn. The 7.5 is the dosage of Hydrocodone. Gerry |
Ger & Ginnie are correct
7.5 is the amount of hydrocodone. 750 is the amount of acetaminophen.
Are you sure the second number is 750 and not 650? (See below*) Both are metabolized in the liver. While the hydrocodone itself should not pose any problems to your liver, the acetaminophen can, and I'm surprised your doctor prescribed that high an amount of acetaminophen since there are so many dosage combinations available. http://www.askthedoctor.com/topics-a...r-disease.html The new (Fall, 2011) safety limits for acetaminophen are no more than 1000 mg. within any six hour period and no more than 3000 mg. within any 24 hour period. (It is recommended that patients taking acetaminophen for more than 4 weeks take no more than 2600 mg. within any 24 hour period.) Quote:
*(1½ times 650 = 975, which would fall within the safety limit) If you can get by on less than the prescribed dose, then you might discuss with your doctor keeping the hydrocodone the same, but lowering the acetaminophen to 650, 500, or 325. Patients who take acetaminophen longterm should get liver panels done periodically, 1-2 times/year. If it is a concern, you can take an OTC anti-oxidant supplement called N-acetyl cisteine (NAC) which may help protect your liver from damage from acetaminophen. http://yarchive.net/med/tylenol.html Doc |
Yes I am positive it is 750 mg.
And I was wondering how often the liver panel should be done. I have been on oxycodone then hydrocodone I guess at this point for 7 months at the most. I guess it should be checked somewhere in the next 5 months or so. Thanks for the input. |
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Doc |
Doc
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I asked my Pain Specialist for the lower dose to 325 acetaminophn. He originally was going to prescribe 7.5 - 750 for my Oxycodone. I take 7.5 -325 (325 being the acetaminophn). Had I not said anything, I would have been prescribed the 750. Gerry |
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Some have proposed combining NAC with all acetaminophen-containing medications, but from what I've seen , that would apparently be prohibitively expensive (among other things). However on an individual basis, it's not prohibitively expensive, and is available in a wide range of dosages (so people can titrate what works best for them individually). It's an interesting supplement (anti-oxidant) and I seem to read/learn more (good things) about it every year. Doc |
Dealing with chronic pain
For whatever reason there seem to be a lot of doctors that just don't listen well to their patients. I think doctors need to be more attuned to what we (the patients) go through. I've been dealing with chronic pain for 6 years now. I went through ACDF surgery this past December after being told that it would 'fix' my pain. Well it didn't and know I have even more problems than I had before. I feel like I've been jumping through hoops for years now trying to get relief and it's just not happening. I've done chiropractic, P.T., acupuncture, etc. etc. but I still have horrible muscles spasms in my neck and shoulders. My neurologist volunteered to take over my pain management from the surgeon who did my ACDF. The problem is he doesn't listen to me (or believe me) when I tell him how significant my pain still is. He is forcing me to cut my pain medication down suddenly by 2/3 of what I am used to taking. I tried to tell him that's too much of a reduction, at once but he won't listen. Actually hung up the phone while I was still talking to him. So now here I sit still in pain and feeling ill from medication withdrawal too due to having my dosage being cut so drastically at once. I want to find another doctor but don't know where to begin. How do I find someone who will listen to me?
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Dear Sally Mae
I am so sorry that your doctor will not listen. Try a physiosist. They can and do treat for pain. My doctor I researched along with four others. Believe me I interviewed them, not them interview me. My quality of life is at stake, and I needed pain meds. just like you do. She was very attentive right from the start. I do get pain control. In fact, she gave more than what I am using. I have the choice if I want to take extra or not. Please try this kind of physician, and start interviewing, psysiosist, or a pain specialist. Good doctors are around if you look. Bring your meds with you to appts. and a chart if you can to document all your symptoms. I hope you find the help you need. I wish you all the best. Let me know what happens. ginnie:hug:
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I agree that a doctor has to have the ability to LISTEN & communicate. I don't care how good a doctor maybe if he lacks the ability to listen and communicate then I move on. A doctor not only needs to be a good doctor but one who communicates. I don't want to walk out of an office visit still feeling like I have a million questions and no answer. I understand they have busy schedules but we as patients need reassurance as well as to what is going on with our health.
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I am going to a walk-in clinic today that a friend recommended. I'm hoping that they will address my issue short term and refer me to someone who can help for longer term care. |
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That could be construed as "doctor shopping". The preferred way is to ask for a referral for/to Pain Management (PM), keeping your other doctors in the loop ahead of time, and then seek out a PM specialist. N.B. I think the specialty Ginnie means is physiatrist http://www.aapmr.org/patients/aboutp...ysiatrist.aspx or google: physiatrist Good pain management doctors can come from other areas of medicine too. You'll find that some PM doctors do/will not prescribe opioid pain medications; this is sometimes referred to as Interventional Pain Management http://neurotalk.psychcentral.com/post888177-23.html The above link also has some information on how to find a good pain management clinic/doctor for you. Doc |
Dr. Shopping??
Dr. Smith,
If the intent is to achieve long term resolution of the problem, it shouldn't be construed as 'dr shopping'. Also, why should a patient have to suffer in the interim because a physician refuses to listen to them? I told my doctor that the new medication he prescribed was not working on my pain and he ignored my statement telling me "I would be fine". Well I'm not fine. That's why I'm looking for a new doctor. |
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If you have a physician who does not listen and hangs up the phone on you, then IMO, you don't have the right doctor for you, and you should find another. Going to a walk-in clinic cold and asking for pain meds (regardless of whether you're asking for a referral to another doctor) is, IMO not the way to do this. A better way, IMO, is to explain the situation to your PCP (who is the one to coordinate all other care) what is going on and request a referral from him/her for pain management, AND another neurologist -- this one isn't working out. Your PCP should be familiar with all of your records and medical history, and therefore, be the one to address your issue short term and refer you to someone who can help for longer term care. Google: how to find a good pain management doctor Did you go to the clinic, and if so, what happened? Doc |
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I went to a new primary care physician and I really lucked out because this new doctor took a lot of time to answer my questions and discuss my concerns. I also received a referral to pain management. I feel that this new doctor is going to continue to provide much better care than I have been receiving. He suggested that I take my MRI's to the pain mgmt doc and talk with them about radiographic neural abrasion as a treatment option. He thought it may be a better solution for the ongoing problem with my muscle spasms/pain. I still have a ways to go in terms of finding a migraine prophylactic med that works and has tolerable side effects. I ended up stopping the lyrica because the drowsiness/brain fog was causing too much interference with my ability to focus on my work during the day. I don't have all the answers yet but at least I feel I can trust my PCP to listen to me and be accessible when questions/concerns arise. :) |
That sounds much better; I hope things work out! :)
I got lucky with my PCP too; he has 20+ yrs in PM, communicates well (both ways), and has been very open to my ideas/input. He acknowledges that patients often know their own bodies, and more about their conditions, than the doctors that treat them. Assembling the right interdisciplinary team is paramount for pain patients, and the right PCP is the cornerstone/quarterback of the medical branch (shown in blue) of that team. The procedure suggested by your new PCP is also known as Radiofrequency (or RF) ablation and sometimes as facet rhizotomy. I found these other links describing it as well: http://www.aradiology.com/procedures...ion/index.html http://www.eorthopod.com/content/rad...uency-ablation From these four links (and where they may lead, along with Google) you should be able to glean enough information to be able to talk to your doctors about this procedure, and how it relates to your individual situation, in order to be able to make an informed decision. We're in the same boat as far as finding a good migraine prophylactic. After enough years, I've pretty much given up, and continue to fight the battles w/ ins. for enough abortives. I have gotten some relief with some PT exercises and changes in diet & lifestyle -- enough to reduce my frequency to below chronic (<15/month). Your new PCP should be able to help you with referrals, but I've found I still have to do my own homework in finding the specialists I want to see (PCPs recommendations didn't always work out -- not his fault), and then my PCP will give me the referral to see them. It's a lot of work, but again, having the right team of professionals in your corner makes a HUGE difference in the care you get. Best Wishes, Doc |
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