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My RFA Update
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sharim posted:
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.
Reply
 
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ctbeth responded:
Medical malpractice is professional negligence by act or omission by a health care provider in which the treatment provided falls below the accepted standard of practice in the medical community and causes injury or death to the patient, with most cases involving medical error.


Standards and regulations for medical malpractice vary by country and jurisdiction within countries.

Most attorneys-of-law take medical malpractice cases on a contingency plan. This means that the client does not pay any fees upfront.


If the case is favourable to the plantiff, the atty is paid from the award.


If the case is not likely to conclude with a favourable award to the plantiff, most attys will refuse to represent the patient or patient's family.


Good luck with that.


CTB
 
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annette030 responded:
Be really glad you don't have lymphoma!!! My husband and cousin both had it, and it killed my cousin. My husband is 25 years cancer free!!!!

It sounds like the original ENT doctor blew it, but who knows?

It was only two-three months out of your life, not the end of your life. Lots of people end up with cancer surgeries, mastectomies, etc., and never needed them at all, because they didn't have cancer. At least all you had were the biopsies.

Take care, Annette
 
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ctbeth replied to annette030's response:
...or others whose concerns are not handled promptly and the cancer diagnosis is too late.

I'd rather be diagnosed and NOT have it then be NOT diagnosed and have it.

Annette's comment really rings true: it was only a few months of your life.

Maybe be grateful that you do not have cancer and move on and enjoy your life.

It's really up to you if you believe that your MD was acting with nefarious intent, or was acting out of an immense concern.

Perhaps having a discussion with the ENT, whereby you could tell her your thoughts and feelings, would be a good start in your moving forward.

I wish you well.
 
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sharim replied to ctbeth's response:
I have now been flipped post op to the PA in the office, they do not see me now. So I cannot tell them just how I feel about the entire experience.
 
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ctbeth replied to sharim's response:
Hello Sharim,

Perhaps you could write the MD a letter stating exactly how you feel about what has happened,

That would enable you to process the events and know that you've expressed to the MD exactly how this experience effected you.

It may also be a purposeful way for you to begin moving forward by putting the past in its place.

Best wishes,

CTB
 
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sharim responded:
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.
 
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ctbeth replied to sharim's response:
Hi Sharim,

Wow, this has been going on for a while now. I had hoped that this was all behind you now.

First, it's nice to "see' you again, although I wish it was to tell us that everything has turned out wonderfully.

The Mayo Clinic is a pretty reputable organization. If it was me, I'd tend to take their diagnosis with credibility.

Is it possible to completely remove the ENT who insists that you have lymphoma?

Here's my suggestion: Get copies of all of your records, which will include lab work on you, biopsies, history and physical, and anything else.

Make an appointment with another ENT and review the first ENT's findings with another MD.

If the new MD's assessment is consistent with Mayo Clinic's assessment, perhaps that would be a good opportunity to return for Mayo (or an oncologist, hemotologist) for a consult and get a straight answer with all of your supporting medical records.

You do not have to agree to further biopsies and/ or any treatment that you do not want to undergo.

Treatment for lymphoma includes more than removing lymph nodes.

Should this ENT insist that you have lymphoma, and you have two negative biopsies, come right out and ask her to review your lab findings and ask her what, in your diagnostic results, would indicate to her that you, indeed, have lymphoma.

~~~~on another note~~~~~~~

May I ask if you take any pain medications?

Sweating, especially of the head and neck, is a common side effect of opiate meds, and other medicines. Anything like Oxycontin, Lortab/ Norco, Methadone, etc.

I have quite-recently read that patients taking Oxycontin particularly, experience abnormal sweating of the head.

I am many times wrong, but, as a neurology RN, (disabled now), I have not ever heard of sweating related to nerve damage from osteo-arthritis.

I was suffering from this a few years back while taking Methadone for pain management. It was so distressing that my MD changed my pain med to MSC, and I also take glyccopyrolate, in a small dose twice a day and it has reduced the awful side effect to the extent that I feel normal again.

Whilst I was taking the Methadone, I became a hermit, as the sweating was so ghastly that I would be dripping sweat from my head and neck just be showering, make-up, and drying my hair.

I cried a lot and got to the point that I seldom left my home.

Thankfully, some members of this group helped me realize that I should speak with my PMD and we made the med changes.

I know exactly the type of sweating to which you refer, and was far too young for menopause, which is what I initially suspected was the cause.

I may be jumping the gun, as it's said, as I don't know that you're taking opiate pain meds at all, so forgive me if I'm way out on this one, but it sounds so much like my experience.

Cervical spinal cord (as opposed to spinal nerve) injuries can result in autonomic dysreflexia, a condition in which there is excessive sweating above the level of the injury.

I am spinal cord injured and autonomic dysreflexia comes with a few additional autonomic manifestations that are life threatening, such as unbelievable headache, rapid blood pressure rise which can lead to stroke if untreated, redness of the skin above the area of injury, and a terrible panicky feeling of doom.

Autonomic dysreflexia is a medical emergency.

This syndrome (which you can research on your own) is a serious matter and is presented ONLY in spinal cord injuries, tumors, and other severe leisons of the cord itself. OA should not cause autonomic dysreflexia.

Persons with fibromyalgia commonly complain of excessive sweating.

I seriously hope that you can get relief from this phenomenon. To many who do not experience this, it seems like a mild side effect; for me, it was having devastating effects on my life.

I hope that you'll update us on your situation.

Beth


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