Quote from msmona:Thank you ever so much Carol. I just checked the percocet and it is 5mg/325 something else, and your right they dont do a thing for me. I called the pain mgt doctor and they said they could see me next week but I dont know if thats good to do and then get a second opinion too unless the pain mgt doctor can give it to me. the surgeon sounded like he didnt want me to go to pain mgt he said something like the shots not good because they do something to the blood sugar. They only gave me 50 percocets with no refills and the soma did not help either. they make you feel like you want to get rugged up on this but that is not my intent. I just need to get some relief this pain is really severe. Sometimes I cant even talk its that bad. His nurse isnt very helpful she makes comments like are you trying to be a martry (dont know if I spelled that right) but I did not like that comment she said it after I told her I only take one a day. Not very compassionate for sure. Maybe because of my other meds I am on .. I take ativan, trazadone, prevacid, cholestral meds, maybe they worry about the combination I dont know I want to call and tell her again how bad I am doing but she will say hang on you can do it. Lord if only people know how bad it can be when it affects your whole body and its starting to affect my mental state, I guess the stress of it all isnt helping. Thank you for writing I look forward to your mail...God Bless
So sorry to read of your problems. Wish you weren't having to deal with this, but I can share with you recommendations based on my own experience through 8 spine surgeries, including four fusions. The most major of my surgeries was just a year ago, when 10 levels of my spine were fused. Also, let me apologize, as this will be lengthy.
Seeing that you are a junior member, I assume you have read the board for a while, so apologize if this seems like a lot of repetition to you, but I urge you to please give these comments some serious consideration.
First, if you are facing fusion, has your doctor offered you the opportunity for an ADR, or any other options? If not, I would guess that you are dealing with a general ortho surgeon or general neuro surgeon versus one of these who has gone a step further and become a true spine specialist. I started that route when I first developed problems, as I knew they both treated back problems, not realizing that some completed extensive spine fellowships then devoted their total practice to the spine, versus doing brain surgery, working on shoulders, knees, etc. Their abilities, their expertise, their grasp of your suffering, etc., especially if you can search and get one that you can have the greatest confidence in, is so far above the general ortho and neuro.
After I became temporarily paralyzed while being treated by the first doctors, I was left hanging all alone to get better care. It wasn't easy, but by doing my research on the web, making lots of calls, and going to about 10 office visits for those second opinions, I found the most wonderful spine specialist. Were it not for that doctor, I would be permanently paralyzed today, but instead managed to return to an active life by spring this year. My only set-back was when my car was hit at 70 MPH a month ago; certainly not the fault of my surgery.
You can use the search feature, if you are interested and find the thread I started, or just search for the topic "how to find a spine specialist in your area", and of course if you need help, just post a note to quietcook.
Naturally, some insurance companies limit second opinions, some make you get a referral for them, but many like my own, figure it is better to allow the patient to get whatever is needed in appointments and opinions, so you make the best choice the first time around. Yes, it hurts to pay the co-pays for multiple visits, but I wanted to be certain I had the right doctor because it would affect me the rest of my life.
One thing too, is that the ortho and neuro's who had been treating me had been good with going through PT, medications, etc to avoid surgery, but the big thing that they did not tell me but the spine specialist did, is this general guideline: If a nerve(s) are being severely compressed and you are in that severe pain, have numbness, tingling, etc then if that is relieved in 6 months there is excellent chance of full recovery, but that drops to 75 percent at 9 months and only a 50 percent chance at 12 months. I was already past 10 months, so was extremely lucky that I chose well and did have excellent result of getting rid of the pain, but did not regain the feeling in the numb toes. So, considering your time of severe pain, if your chances because of severe pain for an extended period are already diminished, then be certain that you have the best doctor you can.
Some doctors will tell you that fusion can put additional stress on surrounding vertebrae/discs, so that is another reason to strive for ADR's, or even the flexible fusion called Dynesys. It cannot always be the way, because many of other have other health problems which make these impossible, but consider if you want the opportunity to let things be offered through a true spine specialist or just take what is handed because of a less skilled surgeon. Truly, the general ortho and neuro's are good for a discectomy, for initial treatments, but when it comes to a permanent fusion, perhaps a person has multiple DDD, more, and especially if they have other ailments such as fibromyalgia, diabetes (yes any steroid injections will make blood sugar go crazy for a diabetic), you want someone dedicated to the spine instead of a doctor who spends maybe 25-30 percent of their time treating the spine.
Okay, whether ortho, neuro or PM, please keep track of steroid injections you have had. More than 3 such injections in a 12 month period leaves you at risk, because as wonderful as steroids are for treating inflammation, swelling and such, it can cause big damages to bones as it makes them more brittle.
I also recommend that you take all films (you can sign them out from any doctor or hospital you have had them made) and take them with you to any doctor you see for an opinion. Also get a copy of your records, even if you have to pay for a copy and then go to the copy center to make several more. Make a list of questions you have so that you ask the same question of each doctor, and so you don't forget things you wish to ask. It places them on a level playing field. I also always keep with me for every visit, a brief typed medical history as well as family history, a dated page with all meds listed (allergies separated and in red) plus my name and insurance ifo at the top in bold letters, and a page with all surgeries detailed and dates of those surgeries and surgical injections. Doctor's like that, and when I was taken to the ER last month, that was a life saver for the docs and myself.
When you phone to make appointments, perhaps ask some questions of the staff before scheduling the appointment, such as what percentage of their patients are spine patients, and if it isn't 75-100 percent then they are not truly spine specialist. Many states allow doctors to list an area they consider themselves specializing in, but do not require they spend more time in that field than another. That's why we sometimes ready of a botched plastic surgery only to learn that the doctor actually studied and obtained their degree as OB-GYN.
Things I considered in deciding on the doc when going to the appointments. Did the doctor do an actual physical exam, check my reflexes, my strength, etc. Did they make their own diagnosis after an exam and reviewing the films and records I brought, or just take my current doc's diagnosis? Do they treat the patient for pain from now until it isn't needed, do they cut off meds at 5-6 weeks post-op regardless or prefer to use PM? Each of us have our own preference, but I want the spine specialist to treat as I don't feel that the PM has as great a grasp on the spine pain and if I were dealing with yet another party, the spine doc might not get all the information on small changes that would be signaling things they should be aware of. Just my own take.
Also, I wanted a doc that actually looked at the films I brought instead of just reading the radiology reports, and one who would allow me to be actively involved in my care, ask questons and not rush out of the room. I wanted to know their plan for PT, and in working with me to avoid surgery if possible.
It did take a lot of visits, but when I got to this doc, there was a world of difference in my visit. They read every one of the films in that big stack, did a physical exam instead of taking the reports as gospel, even ordered films their own staff took in positions never done in all the others. Answered my questions and didn't mind that I had a list. The appointment was so much more than any other I had gone through that there was no doubt that this was the doctor, even though they wanted me to again go through the test that had paralyzed me. The difference was that as a spine specialist he did not use the anesthia department like most ortho/neuro's do as standard practice. As a spine specialist, he has done all the invasive type injections and tests on my spine, himself.
Sincerely, I hope you will consider giving you and your family the best you can by insuring you have given yourself every opportunity with this spine. Don't want to discourage you at all, as many ortho/neuro's do great. I just want to encourage you to treat yourself just as well as you would want to provide any member of your family. You deserve to give yourself the best as well.
Best wishes and I hope you have relief from pain very soon.