I had the nasty surgery. The nodes came back clean from local lab and from Mayo Clinic. I still have nasty node at jaw line and now I had a new CT scan with contrast and she is setting up a new biopsy on a node already sampled, twice. And in the end she says she will remove this one too. She still insists I have lymphoma. I don't know guys this is seeming shifty to me. Seems as though she is pfishing for something that does not exist to save face. You tell me. I have Fibromyalgia and some thing Chronic Fatigue and FM are connected and one of the main symptoms "enlarged cervical and axillary lymph nodes. It's a thing I had forgotten about I have been fighting this stuff so long. I have no fever, I wish I was loosing weight, I have gained, no night sweats (sweat only my head and this is related to nerve damage from the OA). I have no other symptoms, at all. I think that this is a bad case of mistaken disease and she is now trying to save face.View Thread
Well, way back in the fall I was trying RFA for severe C-spine OA and head sweats. I don't know if anyone would recall the conversations. Well, I had the first injections to see if the RFA would work but I got sidelined and you would not believe the horrible journey I am just finishing up. I had a lump just in front of my left ear and an enlarged lymph node. The ENT freaked out, she performed a sloppy needle biopsy in the office, right then and there she told me I had lymphoma. She stuck me 5 times, she kept getting bad samples with blood in them and acted like it was my fault. She even hugged me as I was leaving. She freaked me out, you have no idea. It was November and I was gearing up for Christmas. And my daughter is out in the car and I have to tell her something but not a cancer diagnosis, not before Christmas. So I told her I had to come back to see the surgeon just to be sure. I neglected to tell her the Oncology surgeon, ENT. The next week that surgeon also tells me I have lymphoma and she orders a real biopsy in Interventional Radiology. So I go through that and it's almost Christmas. Surgery is scheduled no matter the biopsy results. Well the first biopsy is clear and it's "reactive lymph node". That means there was probably some kind of infection. Surgery to remove my entire parotid gland and lymph nodes is in January. The 2nd, real biopsy, comes back and it's just "reactive lymph nodes". But right before surgery the surgeon says that chemo will probably begin in February and will discuss after the surgery. Well it takes into February to find out that I have nothing but "reactive lymph nodes" nothing else. I do not have cancer. Those (&##%$#$%!!!!!! women I am so upset with them I don't know what to do. My entire life was in this huge limbo, I was making lists, writing letters to my grandkids, I was preparing them for life without me. And then to know that there was nothing, nothing. Those doctors are horrible people. They told me I had lymphoma and I did not. What can I do? Any lawyers on the list? I would like to sue the crap out of them. I really would.View Thread
Do not over indulge in your TENS, you will become immune to it believe me it has happened to me. I am happy it has helped you gain some relief. I used to attach my TENS and then tuck my heating pad into my sweat pants, tighten it up with the draw string, on a long extension cord, long enough to let me get up to get drinks, do a dish or two and so on. Eventually I needed to turn the TENS up higher and higher, a game I began to play with myself. How much can I do today? Like everything else it's best in moderation. I am surprised that it took that long for someone at PT to introduce you to TENS. It was at one of my first ever visits to PT that I was attached to it and my insurance paid for it. I know about the surgeries, I have a long list too. You sound like a candidate for something implanted, gets the treatment, drug or stimulation directly at the source and works much better. You have no control over the pain meds administered but I don't know about the electrical stim. You will plateau on the TENS. You don't mention PT. That is where I was first "fitted". The combination of TENS, exercise, heat and or ice, massage might be beneficial but after 16 weeks, 3 times a week I did hit the wall. I was getting worse, it was my first experience with all this and somethings really hurt to manipulate. They did not always listen to me and I don't recall them telling me that I have the right to refuse exercises or any treatment at any time without repercussions. In other words the right to complain, skip things, and actually leave sessions early. Also the right to talk things over with a nurse practitioner, on site. They did things in those 16 weeks that were not in the book, scared me and sent me home in tears when they increased my pain level. It was a tough go round. Probably the only person who left the place in more pain than when I started. Bless you and my prayers go out to you.View Thread
First of all let me say I understand your pain and I am sorry for it. I wish there was a magic bullet but there is none. You say that your medical benefits end next September, 2013, is that a mistake? As long as you are getting those benefits put them to work for you. Try chiropractic. Chiropractors are usually willing to help you stretch your benefits to accommodate visits and co-pays. You are an RN, working in a doctors office or hospital setting? Don't they usually help you out with visits and sessions within a medical group. I guess I don't fully understand your work place setting. For the needles, the injections for pain, not all injections have to be with cortisone. They can use just lidocaine. Chiropractors also use needling, the ancient art of acupuncture. They do acupressure and they can be very helpful and creative if you have limited medical coverage. Seek one out that has a good reputation. They are sometimes much more caring than other physicians. Just my opinion and my experience. First you need to calm down because in a stressful state you are doing more harm than good. Make a list of what your issues are, place them in order of importance, what you need is different than what you want. You may need to apply for SSD, do it now with a lawyer. The government pays them off the top you don't even get that bill. I had more than one treating physician and not one would say the words-You Cannot Work. It was a decision I had to come up with and then talk to my GP. He had all the paperwork from all the docs and he agreed and we filled out the papers in his office. Your GP won't necessarily come out and suggest it to you, it is up to you to make the decision. Once the decision is made you need to find a good lawyer (if in the US). The lawyer will take it from there and I mean it, they take charge. I have severe idiopathic generalized osteoarthritis, carpal tunnel (bilateral), ulnar nerve entrapment, fibromyalgia. I have had 3 back surgeries the final one a fusion, 2 x @ carpal tunnel release surgeries, ulna nerve transposition surgeries. I get absolutely everything bilaterally. Right thumb, left thumb, right knee, left knee, right ankle, left ankle. And in the beginning a neurologist tried to tell me that this was not possible. He was an ___________ (fill in the blank). I cried myself to sleep every night for months and months. It was a long time before I could even think about disability. Not me I am a baby boomer we don't get sick, we don't get old. I am not old. I was not old when this started I was still in my 40's. Well, had to adjust my standard of living and give myself a cost of living in a disabled world reduction in payroll. My "salary" was cut by two thirds. I had to adjust. We all have to adjust. I wish I could say things are going to get better. You will just get better at handling what comes at you. Decide what your passions are and work at those and decide what you don't need. I can only encourage you to keep going and find someone to encourage you along the way. Really, I found comfort in making lists and placing things in order of need and want and settling for what I needed first. And yes it is very, very hard and very depressing at times. I can only imagine going through all this and with a dx of depression at the outset. I can only offer you prayers and encouragement. I know having someone in your corner is important, I am in your corner, God bless. SharonView Thread
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