HELP

[lovelyladyone]

.The big question is why am i in so much pain? three months after my surgery on my back, which was suppost to make me better; but now i am ten time worse then before. My doctor tells me over and over that i will heal and some people take longer then other. The type of pain that i am having is unreal. The surgery was march the third. I had a large herniated lumbar disc, lumbar stenosis, spondylolethiasis, and a L4 to S1 fusion. Two days after surgery the doctor sent me to a nursing home i was there for thirty days, then april the third thet kick me out ;  the nursing home the doctor that was in the nursing home and some of the nurses said that i was not ready to leave yet; but because of the insurance company, but it really didn't matter, because they only walk me six times the whole time and it i was suppost walk every day. To make matter worse they had me on every pain meds you could think of and then send me home with nothing. And between the doctors and the pharmacy i had no pain meds for two weeks; it was like being under rubble waiting for help and when i did get it did not work. The pain got so bad i had to go back to the hospital for a week and they only pump me with all kinds of drugs, setroids, iv morphine and pill morphine,vicodin,valium,lortab,tramadol,gabapentin. He was just trying to get me out of pain then send me home. Then two days the pain was back i went to see him and he gave me RX of oxy 60mg twice aday on the other stuff but told me to stop the morphine. this last time that i was in the hospital they did a mri and ct.One doctor said everything looks alright then another doctor said that there is a bluge in between L4 and L5 and that may be causing some of this pain and does not know what else can be making this pain that bad. I think he does know but not telling me i am only 43 years old. And i am so afraid that i am going to be like this for ever. what should i do? HELP PLEASE DIANA

[lovelyladyone]

I hear you but these symptoms like the hot flashes started when I started back on my thyroid meds. that why I keep Stopping I think plus my hair start to fall out when I am on my meds, lost all my hair twice and don't want it out again,when i am on my meds, the thyroid meds.

[Tuckamore]

I know you didn't ask me but thought I would add what the endocrinologist told me last week. Hot flashes and cold flashed can often attributed to a thyroid problem.

Because you have neglected to take your thyroid medication for ten months I would consider the thyroid as a key factor in your symptoms. I encourage you to see a endocrinologist.

Good Luck,
~Tuck

[lovelyladyone]

I had thyroid disease my whole life, just about.. At the age of 17 the doctor said that I had hyperthyroidism and at 25 years old they said that I have graves disease and a toxic goiter and got treated with ratioactive idoine; now I am 43 years old; I am all the way hypothyroidism and my TSH is 16,566 way over what it should be, it should not be over 4,500. I am having hot flashes and sweats, night and day. I just started back on my thyroid meds. and I have not been taking them for the pass ten months. I had a major surgery on my back, had a 2 level fusion on L4 - S1 and having a lot of pain and still having lots of pain. So I been taking lots of pain meds., I take 750 vicodins and was taking 45mg twice a day  of morphine sul, but the doctor cut it down to 30mg. twice a day and valium plus high blood pressure meds and other meds. but I am taking thyroid meds for the pass three weeks 200mg.. I would like to know could my thyroid meds be causing these bad hot flashes and sweats plus these other meds. and my body temp. is 96.5 which is a low body temp and I am just getting over a cold which I was running a fever which the fever was 99.7 because its hard for me to get my body temp up and when I do have a fever I beleive when my is 99.5 if i didn't have thyroid disease and my thyroid was normal my fever would of been a lot higher then that. please help me I can't take to much more.
                                    Thank you
                               Lovelyladyone

[lovelyladyone]

I had thyroid disease my whole life, just about.. At the age of 17 the doctor said that I had hyperthyroidism and at 25 years old they said that I have graves disease and a toxic goiter and got treated with ratioactive idoine; now I am 43 years old; I am all the way hypothyroidism and my TSH is 16,566 way over what it should be, it should not be over 4,500. I am having hot flashes and sweats, night and day. I just started back on my thyroid meds. and I have not been taking them for the pass ten months. I had a major surgery on my back, had a 2 level fusion on L4 - S1 and having a lot of pain and still having lots of pain. So I been taking lots of pain meds., I take 750 vicodins and was taking 45mg twice a day  of morphine sul, but the doctor cut it down to 30mg. twice a day and valium plus high blood pressure meds and other meds. but I am taking thyroid meds for the pass three weeks 200mg.. I would like to know could my thyroid meds be causing these bad hot flashes and sweats plus these other meds. and my body temp. is 96.5 which is a low body temp and I am just getting over a cold which I was running a fever which the fever was 99.7 because its hard for me to get my body temp up and when I do have a fever I beleive when my is 99.5 if i didn't have thyroid disease and my thyroid was normal my fever would of been a lot higher then that. please help me I can't take to much more.
                                    Thank you
                               Lovelyladyone

[mummy3too]

I would also inquire to see if you can get a new MRI. Have any of the doctors talked about that? What are your pain symptoms? burning, sharp pains, terrible aching back pain? Are they new since surgery or the same and just worse?

Sometimes Arachnoiditis is also called FBSS. Failed Back Syndrome is a catch all for when surgery goes bad...

When you ask for your records, you do not even need a reason. Every patient is entitled to one copy of them... including your MRI's, X-rays, etc... I always ask for a copy and if they ask why, I just tell them for my own records. Once you have them, however, if you give them to someone else, you have just given away your copy - so be sure to get them back if you do..

[Tuckamore]

Hello Lovelyladyone,

I appreciate your update. Thank you. I do apologize that I did not respond to your post initially. My father had just passed away.

You may find that a PMP will be beneficial. You are much to young to be confined to a wheel chair. A second opinion with a surgeon that is not connected to your current one may also be beneficial. I would want to know if an error was made or if this is the response of my body to the trauma of the surgical procedure.

In my experience as soon as a medical care provider hears litigation they run. I have never been in litigation with the medical profession. However they are very cautious about treating anyone that is associated with any kind of litigation. Expect difficulties if they discover you have consulted legal representation.  

In my opinion the key is finding out why you are in more pain and unable to function or tolerate activity. I would think that it has been enough time since your surgical repair that you should be well on your way to recovery.  

We understand how tiring chronic pain can be. It is energy zapping. When we are exhausted from handling severe chronic pain day in and day out depression often rears it's ugly head...and so it becomes a cycle.  Consulting a pain management therapist may be helpful. They are trained in helping us deal with the emotional challenges of chronic pain. A person that has never had chronic pain finds it difficult to understand how just getting dressed for the day can spend much of our energy.....that is if we are even able to dress.

So please pursue answers. If you are referred to a PMP the clinic is usually associated with a PM Therapist. Be aware that in most cases a PMP will not search for a diagnosis. Their function is to treat pain when no other forms of treatment has been successful. At the very least you deserve good pain management....whatever that may encompass for you. The right combination of medications can make your pain more manageable and return you to some level of functioning. With inactivity muscle and supportive structures can atrophy and increase pain and reduce endurance. Therefore the quicker your pain is properly managed the better.

Please let us know how you are doing. I wish you the very best and hope that you will find answers and solutions. My heart goes out to you.

Take Care,
~Tuck

[lovelyladyone]

Thank you, I have not been on here for a month or so, still dealing with this pain,. I had my last day of PT; my insurance barely cover for three months and didn't start PT until June 9th and it was very painful. My family Doctor can't believe that I am still in a wheel chair and at home on a walker, she wants me to see a Pain management doctor and I do have a lawyer on this we r trying to put a case together. I got my records from the hospital and my mri after the surgery but they could not find the before ones. And my lawyer wants me to get the doctor that did the surgery, to get my records and all the x-rays he had taken at his office and when Iwent to his office last month, I even call in three days before I went in and ask could they please have my x-rays and records together for me to pick them up on my office visit and when i got there I even ask him twice could i get them, the first time i ask him; he acted like he didn't hear me then he had three sudents with him after i had to wait three hours to see him and another 45 mon in the room and my pt said i was only to sit 45 at a time and here he has me waiting almost 4 hours to see him and my app. that day was set for 3o'clock and they call me a week before to ask me if i minded if they change my time to 12:30 and i said ok but still didn't get seen to after 3o'clock and i got there at noon. And I only seen him one time since may; when they kept me for a week and pump me full of drugs. He has the worse  after care ever, and when i told him that my doctor wants me to see a pain management doctor; he told me I don't think that would be a good idea yet , because if something it may make it worse; yea right and he wants me to get other CT  first; for what to tell me everything fine again. And then I ask him again about my records and x-rays and then he like give me the doctor name and he will send them there and i told him that i don't have his name yet my family doctor has not gave it to me yet. What should i have said that my lawyer want them.I think he is feeling something that I may be suing, because when i was talking to his staff about getting my CT somewhere else he over heard me then told me that he only wanted done at the hospital where i had my surgery at something does not sound right about anything thats been done or said, one time i went to his office and one of his partner doctor said i am glad she not my patient, why would he say that and the doctor that said that is one of the top five in united states, he kind of said it joking but that not nice to say, only if he knows something that i don't know yet and when he said that my doctor didn't laugh, makes you think. And he try before I came in to stop the morphine cold turkey he is crazy, but he didn't, its a wonder, he messes everything else up. he going to need something stronger then morphine when i am finish with him. Because if i have to suffer the rest of my life he or someone going to paid for it, even so money won't help the pain. Some days I get so tire of being high or in pain. The pills in time will maybe kill me and i am tire because i really don't have no life. But i really do keep my faith in god that i'll be ok matters what. thanks again, I know you r like how long does this girl go on. Oh one more thing for the past two weeks I have been going through hot flashes and sweats and my body temp is 96.4, I don't know if its the morphine and vicodin or my thyroids or pre menopause or what but it driving me crazy hot and cold day and night

[JadedSweetheart]

Sometimes when you start PT after being inactive or not using certain muscles, it can hurt SO bad because the muscles are atrophied.  Rebuilding atrophied muscles is VERY painful.  One of the good things about it is that it eventually goes away, as opposed to our regular CP that never seems to go away.
It sounds like you have more things at work here than atrophied muscles, though.  I really do feel for you.  I hope you feel better soon!

[RunningMom]

Oh wow, my surgeon only gave me 10 days post op meds.  I was forced to grin and bare it for a few weeks until I was able to go back into pain management.  Even then I had minimum pain management.  I really understand what you are going through.  I've had a fusion over a year ago and the pain is absolutely horrible.

The best thing for you to do is not give up.  Find yourself a good pain management clinic and surgeon.  Find out why the pain is bad.  It took me over a year, but I finally found out WHY I'm hurting.  Now I'm desperate to find a new comptent neurosurgeon.  Good luck and I hope you are able to obtain decent pain relief.

[mummy3too]

Hi. I feel for you... I am so sorry you are going through this. I have very little memory of the 3 months after by last surgery - the pain was just so unreal. I swear it's your body's way of shutting down when the pain gets so bad. I totally and truely believe you are in extraordinary pain. Is it also possible for you to pick up your latest MRI's and radiologist's report? Sounds like there must be some descrepancy in your MRI - with one doc saying all is fine and another seeing something. Have they ruled out discitis?

There is also something else that can cause great pain - I was diagnosed with it after my last surgery.. that is arachnoiditis. Most doctors won't mention this and I have heard it's because it can be caused by an error in surgery (as well as some other things like infection). It is also rare.. so I am not saying you have this - but it is very very painful and can rear it's ugly head after surgery.

Just some thoughts - but more than anything, I wish you pain relief. I hope you can find a doctor soon to help you.

[lovelyladyone]

Yes its me again lovelyladyone and yes still in pain; yes I am going to PT now after really four months with out hardly any and she telling me that I may have this pain always and she just trying to bring the pain level down and I am doing everything they ask me to do, but with no improvements. And the pain is unreal you wouldn't believe the pain and when I get home its worse even the next day even worse. I went to go see my primary doctor two days ago and she don't believe that I am still in so much pain and that I am still in a wheel chair, so she sending me to a Pain Management practitioner. And the doctor that did the surgery is about to stop my morpine cold turkey is he crazy and he still has me waiting every time I need my meds, he is a striaght jerk as far as I am concern and he is in it just for the dollar, But I am waiting to hear something back from my lawyer. I went back in the hospital in may and they kept me for a week and filled me up with morphine in my viens every two to three hours and stroids three to four times a day in my viens got track marks like a junkie; plus my pill morphine, vicodins, valiums, lortab, nerve pills, then the last two days wanted to try a little PT on me then sent me home and then a few days later in pain again , oh of course they mess up on my RS"S again, had to wait another week before they got it striaght. I am trying very hard to be strong, really I am and I pray alot. I am going to claim that I will get better because right now I feel like I have no life , only if iI am high on all these pills and who wants to be high on all the time, this ****. this **** will slowly kill you . Am I right ?

[pmartin1664]

Diana,
I can't even start to tell you how upset I became to read that your medical team left you without pain management or medicine. And for two weeks, no less.  That's as close to malpractice should your attending doctor, and doctor at the rehab facility concur on your being discharged early and prior to their recomendation. Where was the concensus on some pain meds. In any event, you need to get into see someone right away. Even if you have to pick up the phone and call around. There are some fantastic PM practitioners out there. They are in practice to eliviate PAIN. That's their business. Most, do it well. So get in to see one as soon as you can. Only then will you be able to see some clearing become of this messy situation.  Keep us updated. I'm in RI, if I can help, don't hesitate.  Take Care, Pmartin

[Tuckamore]

Hi Diana,

I am so very sorry to hear about your painful recovery. It sounds like you have been through the mill and have experienced some not-so-good treatment. Honestly, discharging you without any pain medications is unthinkable!

You've asked a good question. "Why am I still in so much pain?"  There may be some long medical explanations for your pain. The facts are everyone body responds differently to surgery.

There is also something called Failed Back Surgery Syndrome (also called FBSS, or failed back syndrome). it's not actually a syndrome, it's a term used to describe patients that experienced continued pain after surgery. There is no rhyme or reason to why one person experiences FBSS and another doesn't. It happens even when everything connected with the surgery seemed to go perfectly, best surgeon, no infection, good repair and yet the person continues to experience pain. Sometimes ppl even have worse pain than before the surgical procedure. One of the reasons they beleive this happens is because the structural problem was not the real source of the person's pain. But there are many theories.

The important thing is that you are still experiencing extreme pain. As suggested above this pain needs to be treated, regardless of your MRI results. I don't know the practices of your state. In your neighboring state, Wisconsin it is our PCP that prescribe for and follow their chronic pain patients. I do not know your state practices. Whatever it may be please find pain management.

You may benefit from a long acting opiate with a short acting one for break through pain. You and a good physician can decide on what right for you. Often it takes some trial and error so don't be discouraged. Be assertive and refuse to accept this level of pain. There may be additional choices for you. Please don't think that I am suggesting that this is as good as it gets. In my opinion you may benefit from pain management until and if a solution is found to your pain.

Again I encourage you to be assertive. You are your own best advocate. And please let us know how you are doing. We will watch for your updates and hope that you find some workable solutions to your pain. Just please don't give up.

Take Care,
~Tuck

[Sarajmt]

Hi Lovelylady:  I agree with Mellie.  You need to see a Pain Management Physician.  You will probably need a referral.  Perhaps the last doctor you saw in hospital or your Primary Care doctor can do this for you.

Good luck to you.  I hope you find relief soon.

Sara

[namnam46]

Hi Lovelylady,

I'm so glad that you posted over here to get as much help as possible. I want you to know that I did PM you back a second time with some suggestions. So rather than retype here if you don't mind going back and reading you messages.  :)

Good Luck,,,Sherry

[mellie4]

Hi Diana.  Sorry you're going through all this.  I'm new to this site but not new to chronic, debilitating pain, though mine is in my hand.

I'm sure someone will be along soon to have some more answers for you.  Have you seen a pain management doctor?  I know my surgeon wasn't all that helpful with dealing with pain when it was clear the surgeries had poor outcomes.  I asked to go to pain management, and we're working on things, just not with a lot of success as of yet.

Pain clinics handle medications but they also offer a lot of other things as well, like different procedures that may help.

Good luck with everything.