I had a Grand Mal Seizure 11 months ago. When I woke up from the seizure I couldn't breath and was having severe chest pain..It was the first seizure I had ever had. My husband and two children were in the room..My husband called 911 and I was transported to the ER..On the way my heart rate was 160's and my chest was hurting so bad the EMT gave me a nitro pill under my tongue..I had bitten the left side of my bottom lip almost completely through..They did a ct at the hospital and said it was normal and sent me to my doctor to start on seizure medication..After complaining for 11 months to my pain mangement doctor about severe pain in my upper back he finally ordered and MRI..I just received the results today, but from the receptionist./.I am not scheduled to see the doctor again until next Thursday.. The summary of the MRI is this, given to me over the phone and I have to wait 8 days to talk to the doctor and am very scared..
T-5, t-6, t-7 fractures with kyphosis, t2, t3, t4, t5, t6, t7, t10, t11 moderate disc bulge. T5, t6, disc protrusion to abut the cord. c6, c7 cord flattening..
I have been in extreme pain in that area of my back with many other symptoms since the first seizure. The nurse practitioner who I see for pain management of my lumbar spine from a previous L4-L5 discectomy from a lifting injury kept telling me it was only muscle pain from having the seizures..I told her all my symptoms that included pain with every breath, constant throbbing and sometimes stabbing pain in the upper back region around the spine..Generalized weakness, daily nausea, stomach cramps, unable to sleep, unable to move around very much, very ill every day, rectum has no felling in it and have a lot of trouble having bowel movements. Can't sleep more than 3-4 hours at night, constantly breaking out in a cold sweat, wake up shaking, nauseated, soaked in sweat..
My question is does anyone know anything about all the fractures, disc protrusions, cord flattening, and what abutting the cord means, and what can be done for any of this.. I am getting very depressed because I am so sick all the time that my life has basically stopped..I have 3 children am an RN and married, only 36 years old..I was always extremely active, working full time, cleaning my home, taking care of children, cooking, etc..and now can hardly drag myself out of bed due to the severe weakness and feeling constantly sick with many, many severe symptoms..None of the doctors would listen to me..
I am wondering what the doctor or nurse practitioner will say at my next appointment since I have been complaining of the severe pain in the exact level of the fractures shown on my MRI, the constant weakness and illness since the seizure..
Does anyone have any advice or experienced anything similar to my symptoms and severe pain..I have never written on a message board before so I am sorry that this is so long, but I have been sick and in pain for so long I wanted to try to explain everything..Thank you to anyone who responds..
Good grief, Anna, that is quite a litany. The part about waking up soaked in sweat really caught my eye. I don't like that at all.
I'm afraid your situation is far beyond my poor powers to assist. You may be able to find people on other boards who can help more. Try the Back Problems board with the same post.
Three things I will say....
1) Unless this nurse practitioner is someone who's going to bat for you against an indifferent medical establishment, she's not the person to whom you should entrust your diagnosis and treatment. This needs physicians, and specialists, at that.
2) It's possible that your spinal injuries are not the cause of your symptoms, or at least not the cause of all of them. A trauma severe enough to break all those vertebrae could easily have caused soft-tissue damage in other places.
3) Try to get out of the pain management arena. These people manage pain, and however good their intentions may be, this colors their outlook. I think you need to see a GP - at the very least - to discuss your overall situation. You probably also need to see a neurologist, an orthopedist/physiatrist and maybe a spinal surgeon. Don't sell yourself short.
Last edited by WebDozer; 11-22-2012 at 08:20 AM.
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Thank you for answering back. If you can believe this, the Nurse Practitioner did not even give me the results of my MRI on the last visit. I took my husband with me and told him that I would pretend I did not already know the results to see what she would do, since she had been telling me for three months that my upper back pain was "muscle pain"..As expected when I stated to her " I had the MRI done", she acted like she was looking through my file, changed the subject and said see you in two months. I Immediately went to the hospital where I had the MRI done to obtain a copy of the report just to make sure that the receptionist who originally gave me the results did not make a mistake. It was the correct report and this Nurse practitioner was never even going to tell me that I fractured my back during a seizure, ruptured all those discs, developed kyphosis from it and had two discs bulging so bad that they were flattening my spinal cord. I decided to call her and tell her that I obtained the report and she stated that she was not concerned since it wasn't acute (meaning it didn't just happen that day). I made an appointment with a neuro surgeon, I just can not believe she did not even apologize to me, how can you order an MRI for your patient because the patient is complaining of severe pain pointing to the area of t5, 6, 7 and telling her I could not even take a breath without pain, then get the MRI report that show fx's in the exact spot where I had been complaining about since the first seizure and not tell me??? and was not planing on ever telling me..What if I have another seizure and break more bones?? How can someone call themselves a Nurse Practitioner or professional and purposely withhold this report because she is embarrassed that she was wrong about it just being muscle pain and not want to admit it to me. If I had not obtained the results myself I would never have known that I broke my back during a seizure. I think this is something I had a right to know, especially by the person who ordered the test. I am furious that I am treated this way just because I take 2 pain pills per day. The healthcare system is so screwed up right now with regards to pain management, I did not choose to start taking pain medication at 37 years old, never took a drug before in my life, I am a medical professional myself and can not believe what these doctors are getting away with because they can just say "she/he is a drug addict".. I do not take pills to get hi, I take them because I have a life and children, and work and am just trying to get through the day. I would love to see this women work and take care of children, clean , cook do laundry, etc without taking anything for pain with the injuries and back surgeries I have had. I am seeking new doctors, but they will just treat me the same way. I am sick of being treated bad because I want to be able to live a life without severe pain everyday, which I have anyway, the pills I take barely take the edge off and I just deal with it, take Motrin and extra Tylenol. I am sorry this is so long, but I am so angry I do not even know what to do, I believe she violated some kind of patient right law, and I am going to do something about it. I will not stop until someone listens to me..
Please *do* see another doctor to get a second or real opinion. To me it reads like you should be under good regular medical care, by someone who knows your history and will go far enough to see beyond the pain meds. My GP writes me pain meds, carefully, after having a regular record with him for 25 years. It took a long time and a lot of pain. I am concerned when he retires how goes from there but my problems are also such that any dr can now see it, based on the records together with the imaging. You have enough history and records and no imaging for someone to tell you more then what you have been told so far. I hope you will get help soon!
Other than ditching the NP, have you made any progress?
I have appointments scheduled this month with a Family practitioner, neuro surgeon, and endocrinologist..(the endo doctor for my addison's disease)..I have not fired the pain management doctor/NP that I see now, because it took me three months just to get an appointment with them. The neurosurgeon whom I am seeing this month is the one who did my back surgery for L4-5, he is in practice with a pain doctor, so I am going to ask him to refer me to him.
I am Definitely establishing with a new pain doctor. I know I have to get in with these other new doctors and take all my records and MRI/Cat Scan images and hopefully be able to stay with these doctors permanently..One of my biggest problems is that before all this started, including my diagnoses of addison's disease, I was never sick, so do not even have GP.. When I call to schedule an appointment as a new patient they wonder why I do not already have a GP; one office I called, I asked if they were accepting new patients and the receptionist said "yes, but we do not prescribe pain medication for any reason ever"..I could not believe that she would say that to someone, I mean she said this before I even had a chance to tell her why I needed an appointment..
I do not want a GP so I can get pain medication, I am older now, have addison's and just need a GP for general issues, such as if I get sick with bronchitis, flu, and a physical every year. I just want a normal doctor that does not treat me bad because I have back problems and take 2 pain pills every day.
I tried to see one other GP before. a female, I thought everything was going well with her, it was when I began having symptoms of addison's and at the time did not know what was going on. Everything was going well until I called after hours once to ask if she would call something in for nausea because I had been vomiting for two days..(one of the symptoms of addison's). She would not even call something in for me. Then I missed one appointment after that because it was during the time that my symptoms of addisons were getting worse and worse, I had lost 30 pounds and was constantly vomiting and suffering from severe stomach pain, fatigue, etc., all symptoms of addison's. I had seen her about 8 times for these symptoms and she ordered a few basic blood panels, and finally told me on my last visit that she was "just a family doctor and did not have the ability or resources to figure out what was wrong with me". She told me to go to the ER, which I did and had already been about 10 times. Each time I went my potassium was always critically low and they would admit me and replenish the potassium and fluids and then send me home. So, after calling that time to ask her if she would call something in for nausea and then missing an appointment because I was actually to sick to go (vomiting, diarrhea, couldn't walk very well), she sent me a letter stating she was dismissing me from the practice for missing the appointment.
After that I just gave up, and when I was almost dead from the addison's ,my husband took me to the hospital and carried me in, they admitted me, and as usual my blood pressure was 70's over 40's, potassium low. A female hospitalist finally ordered the test that tells if you have addison's. she said my cortisol level was so low that I would not have lived another 3 months without treatment. She called in an endocrinologist who started me on treatment that very night. I started feeling better within days. I was so relieved to finally find out what had caused me to be so sick for a year and lose 30 pounds in a two month period. About 2 months after this is when I had the first seizure, the one that caused my fractures of T5, 6 and 7, and all the ruptured discs including the two that are pressing on my spinal cord, flattening it.
All I want is to make sure I do not break any more vertebra from my seizure condition, and be able to work and live as much of a normal life as possible. I can even deal with the pain if I have to..I do not care if I take pain medication or not. I just want to make sure these back injuries are not going to cause anymore problems. There is not cure for addisons, I just have to take the medication everyday for the rest of my life. I haven't had a seizure in over two months, so that is under control..But, I still am so angry at the way thee doctors treat me. I am not begging for pain medication, not even asking for it to be increased. But due to society and the way people are stereotyped if you do take pain medication, I do not know about anyone else, but the doctors treat me terrible, they talk very rude to me, condescending and outright mean. They do not take anything I say seriously, that is why it took them so long to diagnose my addsion's. They make assumptions about me before they even see me or hear what I have to say..Anything I complain about at all, they completely ignore thinking I am lying and trying to get a prescription for pain medication..Just as the NP did when I told her for three months that I had such severe pain in my mid back that I could not even take a breath without it hurting..
I am angry and depressed because I know when I go to my appointments it is going to be the same..I am scared that if something even worse happens to me and I try to tell he/she about it they will do as usual and not even order a simple blood test..I wish there was someone I could complain to or someone who could tell what I am doing wrong.. I just want my life back, I would like to be able to have one day without pain or symptoms of addisons, but I know that is never going to happen..At this point I just want to make sure my new back problems are not going to get worse.. I hope that someday, something will be done about the way doctors are treating people who really have pain, disease and injuries and do not hate them because they need to take a pain pill..So, yes I am doing everything I can think of right now.
I will try to establish a relationship with these new doctors, but it is very hard to sit back and let them verbally abuse me and not say anything back. I take my husband with me, and sometimes my mother and they still talk hatefully to me.. I can't figure out what to do, I have tried everything to change this..I am not a bad person, I am middle class, I have a college degree and so does my husband. We have three children, own our own home, we go to church, we are both Christians. I never make rude comments to anyone. I take very good care of myself as far as hygiene and dress, but nothing matters, the minute the doctor knows I take two pain pills everyday he/she immediately dismiss anything I say and do not take me seriously..
If anyone has any advice I would greatly appreciate it.. It seems like there should be something I could do, especially about the NP who was going to withhold the result of my MRI; results that were very serious. We as citizens have to abide by the law, we should have some kind of rights regarding the doctors and what they can and can not do..It may be just my opinion, but I think I had the right to know the results of that MRI that she ordered..Why was she not going to tell me??? I had do go and pay for the report myself and I have been seeing this person for almost two years..I know these posts are terrible to read because they are so long, but I can not figure a way to explain it without going onto detail.(so much has happened in the last two years), I really appreciate anyone that has taken the time to read my posts and offer any advice...