What do you do when the dr. says we have done all we can

Yeah, Can you believe that. They said we are at the end of the road....nothing we can do for you, Gave me the name of a pain management Dr.....
I want to SCREAM.... The pain is unbearable. Trigeminal neurpathy in my face and a metal jaw & 9 screws.....wire all over the place and bone fragments in my face from a rib transplant. WHAT DO YOU DO??????? HOW MUCH PAIN MEDICINE CAN I TAKE BEFOR I DIE. I NEED ANSWERS.......PEASE........ANYBODY BEEN TOLD THIS???? I FELL LIKE I JUST GOT THE DEATH SENTENCE.

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Keep searching....thats what the internet is for...also pain management Dr's are very good and might be an answer!!

its not a death sentence....you just have to move on to a Dr. more qualified.......would be the pain management specialists. I have gone to them and they are good people!!!


Hugs;
Dee

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omg i though i was bad, you no the drs at good at saying that 2 patients but what good is that 2 u.dont stop going to see them keep at them if ur in as much pain they must give u something 2 releieve it.im suprised the didnt say it was in your head or your depressed,DAMN RITE UR DEPRESSED WITH THE PAIN YOUR IN.
if they cant help you who can.
do u mind me asking u u had 2 get that done to your face,it sound so sore 2 me.

get back 2 me i no its no a pian killer but talkin may take your mind of it

xxx

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Hi !!!
Another Morning wracked with pain however, I must admit that having a response from someone who doesn't even knows me, makes me feel somewhat better. Sometimes a Chronic pain patient just wants someone to listen. Thank you.
When I was about 18-19 years old I was in a car accident. We flew over a cliff and the only thing that stopped us is the car came between two tree's which made me fly forward and my face/mouth hit the rear view mirror. I had constant pain from then on.
Not long after the accident my jaw started to lock open and then lock closed. The disc inside had become tangled around the joint so they put in a silastic disc that was later proved NOT to be FDA approved. This disc was somewhat similar to the women who had the first breast implants that broke. This disc in my jaw broke into microscopic pieces and traveled to all the joints in my body. Which was called Giant cell syndrome. I was later diagnoised with DJD
( degenerative bone & tissue Diease ) I have had at least 6-7 surgeries on my jaw. Doctors took out my rib & a tendon from the top of my head and tried to make a new joint with my own body parts. It did NOT work. My rib fused to my skull. Then I had the metal Jaw put in. Thats the jaw on my right side and now they wan to do the left. ( I was hospitalized for 10 days, 2 years ago with a Systemic reaction to this silastic material. All the glands in my body started to swell at once and I could not even stand in the emergency room ). I "was" a Trigeminal neuralgia patient until I did the " Gamma Knife Procedure, twice. The photo of me is the cervical halo they screw into your head 4 times before you get the radiation. ( It is done so you can't move your head during the radiation ) Which is 40 minutes of radiation to the fifth cranial nerve in the brain. Nerve pain is weird. Very hard to describe. Well, this procedure had helped the stabbing nerve pain into my eyes, the sciatic feeling down my cheek and the numbness of my lip & forehead. However, I am still in severe pain in my mouth. I have welts that move all over the roof of my mouth, my teeth go numb and in the flash of a second it jumps from one tooth to the other or, it is sometimes all teeth. The point of pain and type of pain can change in an instant. I have tinnities ( ringing in the ears) I still have bi-lateral joint pain in the TMJ and high levels of dull aching pain behind both eyes. My cheeks hurt and I have a huge Knot at the base of my skull. This is a result of not being able to open my jaw. (Anytime one doesn't use a joint all the muscles around it start to pull in.) So, I get spasms all down the right side of my back. I also get spasms on the left side of my rib cage where they took out the rib and put it into my jaw. And now, That since this Radiation did get rid of ALL the pain, my "new" diagnosis has several words, TRIGEMINAL NEUROPATHY OR POST-TRAUMATIC TRIGEMINAL NEURALGIA OR LIKE IN MY CASE..... AFTER the SURGICAL PROCEDURES ARE TRIED and DID NOT WORK, I AM CALLED A "FAILED" TRIGEMINAL NEURALGIA. Basically, I'm a mess. A Frickin mess. And, yes.... I didn't use the word, you did....... but, I am extremely depressed. I'm trying to hide it from my husband because he gets frustrated because he can't help me. I know my friends don't want to hear about it. And why go to a psychologist ????? He can't change my medical problems and I'm not gonna pay some one to listen to what I just wrote. It was just yesterday they told me nothing can be done for me anymore. Gosh, it's like a knife in your heart. I'm trying so very hard to not give up but, this bullet hit hard. So, I guess, I go to another Doctor to treat the pain.....I am also diagnoised with severe irritable bowel syndrome ( probably from the use of Vicodin ES) GOOD GRIEF whats a girl to to do?? My husband told me he is taking me anywhere in the world for two weeks!!!! 1st class. I know he tries to make me feel better......so he told me to search the PC and find out where I want to go. At least that will keep my mind off of things..I'll write again soon.

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ji again, i dont want 2 call u pinhead girl it seems rude after reading what u have gone through.i can say that just reading your story u are a fighter because u must b to come through all that,WELL DONE.
in a strange way u make me sound 110% healthy.
1st the car accident, then to go through alll the surgery you have you r a fighter.
i know u might think that because its you its happening 2 that your not but if i were u i would of had a nervous breakdown.
as for being depressed u desevere 2 have self pity,i cant image the pain u have.i bet u dread every day u wake up.
take it as it comes but dont stop going 2 doctors the have 2 do something 4 you also do not give up hope if you do well all that you are going through has won.
i understand that your husband is fustrasted because he cant feel the pain your in,he sound a great guy and he loves you.try a holiday it wont make you better but it will cheer u up somehow.

weel thats me had ma say but u plz remeber i dont even know you but in my estimations you are A TRUE FIGHTER AND WELL DONE.
XXXXXXXXXX

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Thank you for the time it took to write your words of encouragement. I'll have to let it sink in for a while. Oh, and yes.....I do have a name, Diane, But everyone calls me Dino. So if you would like, share with me why you are on this web site. If you are on here for yourself then your pain is my pain. Anything that changes your body, mind soul or spirt is as painful as what I have. Pain is Pain. And Chronic pain is Chronic pain...no matter if it is in your toe or your heart or your bones..........
YOU DESERVE TO BE HEARD.
Dino~

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I Know the pain is hard to bare. You will make it through this. Keep searching for another Doctor that is qualified and comapssionate. I will pray for you.

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My psychologist recommended 2 books Living beyond your pain by Jeanne Dahl and Finding a joyful life in the heart of pain by darlene cohen. see amazon.com for used books. I haven't yet done it but plan to. Also I hear implants for pain help avg. 50% of the time. Any good pain management docs in Ohio? Thanks.

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Sounds like you need a new doctor! Sometime when you feel like read my post about they. Maybe it will give you some encouragement.
Try a Pain Management Dr. I only went so when I quit the rheumy couldn't say I didn't try. Helped a lot. The last time I saw him he said "Even if you are 70 there's no reason you have to suffer needlessly. Our goal now is to reach a level you can tolerate and still function. You're right you'll never be pain free but, I want you to have the best life possible."
I started to say no one should tell you they can't do anymore for you. But, in saying so you know you've just passed his level of competence.
Hope you can find someone who can help. Don't give up. I'm routing for you.
spiritlove

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OUCH!! I, too suffer chronic nerve pain but in my feet, legs, back, neck, hands and arms, This is just to let you know I understand nerve pain and how powerful it can be.
Saying that, I believe yours is worse than even I can imagine.
I think having the chronic pain in your head would be worse too. Don't give up, go to doctor after doctor if possible.
It took many doctors and tests to diagnose me and I am on 10 months waiting list for the local pain clinic. My life is very limited as physical exertion causes my troubles.

Men want to fix things and especially feel a responsibility in their family to make sure all is well. It frustrates him to see you like that yet not be able to help.

This is normal behavior and an unfortunate one for some marriages. He probably feels he is failing in some way in his duties as a husband and family man. Always talk to him and reassure him it is out of his hands but to be there for emotional support. Assure him this is his way to help. Just keep loving you.

He can also advocate at the doctor's for you as this must make it hard to think, speak or express yourself clearly. I know it affects me this way and your suffering must be much worse. Discuss before hand what he will bring up so you work together smoothly as a team. He can be demanding in getting you attention without being aggressive I hope!

Your post touched me because cursed as I am with my chronic issues I know I am lucky not to have what you have. Your suffering must be tremendous. I can easily imagine the frustration in daily life that goes with this. Watch out for depression. Remember if you stop feeling angry and begin to feel nothing ,get help. Even this site is not always enough to get us through real rough spots a times. The talking, real understanding and honest responses can go on here but medicines are sometimes needed as well which can' be gotten here. I fight depression daily with out outside help or medicines because of my circumstance and wait lists. I think medicine would help me above the support I get here. Although this site is my main support system at this time. It is getting harder to fight the depression off alone.

You have to kind of hide your suffering from hubby to give him a mind break but this is more stress and hardship on you. A vicious cycle. So sorry.

Warm regards
Tinman

I am very sorry you suffer this curse. My hope is you find relief enough to find and enjoy life again. That is my search right now. A search for a life, pain under control, freedom to enjoy living without a following punishment. I am truly sorry for you life as it is today. My thoughts are with and about you.

Tinman

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I do not know where you are from but just a suggestion.
If Cleveland Clinic in Clev. Ohio can rebuild a face which they have done you might call first and find out who to go to there. No matter what you need a new doctor. I hate it that they said nothing more they can do. Do not give up ever. I had a quote from a doctor saying you never give up, there is always a needle in a hay stack and I showed him that I highlighted it as he was telling us just the opposite. I lost all confidence in him and he was my husbands doctor who was going to test him but I will do everything I can to see he never sees him again.Enough said.

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Hang in and keep venting that is what we are here for to support one another maybe you need to step back and find another doctor who can look at everything you wnet through and give you a different perspective. maybe stop from having procedures done for now and concetrate just getting some pain relief before decidng anything else. get consults with different doctors till your satisfied with the one you want to stick with but whatever you do we are here so if you need to vent, if you need us to listen we will from one pain patient to another!

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hi dino, how u doing. yes im on this beacuse im looking for people who has addisons disease, i was takin to hospital because my body had swollen up, to cut long story they done a test that shows my adrenal gland isnt producing corisol ( u need it for load of things in life i.e stress), i was put on hydrocrisol tabd.
after seeing my endocronolist he say he no sure what i have because i dont sho signs od addions, 1 is weight lose, iv put on 2 & half srone in 3 month lol.
i think im misdiagnosed somewhere.
by god above answered my parays because on tue morning i wsas relly stressed because both ny boys had been up all nite sick and i wa so tirer, i had 2 get out so i went out the back door and it was pouring of rain and i looked at the sky and said to him.
plz hurry with my test 4 my familys sake, and today (wed) i got my date for mu brain scan.so ib to go next friday for it.
as iv said b4 we dont pay for health service in scotland but its a bit slow.
i just hoping they find what they r looking for and i dont havt 2 go 4 more test.

u take care & keep in touch.u hand in there but i said before im not as bad as u but talking helps get it out
xxxx

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Thank you .............Thank you so much, for your kind words. It means alot as you probably already know. I am also here for you.
Happy Thanksgiving!

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sometimes going to pain management is not such a bad thing because they can prescribe long lasting pain meds. the problem with me was I was being prescribed short acting pain meds like vicodan so they were no strong enough for my pain but they would not work long enough. Now between the long acting pain meds , break through meds and other treatments I can keep the pain at a level that I can tolerate. I been able to function more than before which is and added bonus. I will keep looking for new treatments and a cure but till then I'll make do. my doc had did everything he could for me and I knew it was time to move on to someone that can help more. I hope that will happen to you along with help from groups like this. so keep venting and don't give in or give up that is my pepp talk today and of course have a happy thanksgiving! please just make a goal that you will get the pain to a level you can tolerate. It is not unrealistic and it will give you something to strive for. Also accept that until some better treatment come along that you will continue to have this condition. I feel for you and we have good and bad days but I try and have good more than bad. when the pain gets bad just try any trick to get through it an lean on us because it is tough to say anything good past the pain but if you keep in your mind that it will pass you might not get as depressed. I hope this helps. by giving these pepp talks it is me trying to convince myself of the same thing. I am not always one of these up beat people but I can't afford to dwell in the negative it takes me to a place I don't want to be so I stay away and just deal with the pain as it happening and try to do things from letting it get so bad. you learn all sort of tactics from having life long pain if you didn;t you wouldn't be around. so lets help each other. I hope you can do something to help your pain now just focus on today worry about tomorrow when it comes. and eat alot but don't make youself sick!

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LOL.....Thank you.

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Very Interesting. Went to another Neurosurgeon yesterday and found out that once you have Gamma Knife surgery, You, are no longer a candidate for macrovascular decompression. However, if you do the latter first, you still hold the radiation in your back pocket. I will see him again tomorrow. The guy just kinda threw his hands up in the air in regards to my situation. As I looked on with tears streaming down my face, I thought I know I am a very complicated case but, GOD........aren't you listening to my prayers. It's getting harder and harder to hold on to the rope.

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Several years back I got the CD: Full Catastrophe Living by Jon Kabat-Sinn, Ph.D. (try Amazon, cheaper) along with many by Pema Chodron. Here's the deal. I try to meditate to keep my mind from spinning off regarding all this pain. Since I have such a hard time clearing my mind I bought some CDs on meditation. I have found that the CD's have served another purpose, one that I wasn't expecting. Anxiety often comes with pain and I often wake up in the middle of the night. I have found that if I put one of these on and just listen it calms me down, reinforces the reason to continue to meditate, gives me valuable positive reinforcement AND it often puts me to sleep! Win-Win. My husband is ok with it so that helps, I just keep it low. Sometimes I listen to them during the day also. I have listened to them (especially Full Catastrophe Living as it is geared towards those dealing with chronic pain) over so many times I can't believe it still works. I hope this helps, especially the one by Jon-Cabot, its 5 discs and really deals with a lot of the issues of pain management. Alot of bang for your buck. I may not get rid of the pain but at least less anxiety helps and I will take any little improvement. Good luck.

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I see one post saying they had good results from pain mgnt. docs..wondering what state or hospital or doc? Maybe one is close to it and it may help.
pinhead2009 may God be with you...I can only imagine what you've been through. You must be so very strong! and an inspiration to all of us! One thought...if they put in a disc that wasn't approved by the FDA maybe you could sue them and get enough money to go to the Mayo or Johns Hopkins or whatever place you choose/found via research to be best for you. Just a thought. I think it's terrible when professionals who went through years of school do dumb things like that. You deserved better. Anyway...just a thought.
My best to you.

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Thats how I feel, but its been 7 years looking for a diagnosis.
Tn mri- negative
occipital neuralgia, glosso-pharyngeal, vagus, more.
scar tissue face neck
so much pain. neuropathy-entire body, pinched nerves neck, dysphagia, nostril collapse, neuralgias, facial-neck edema.
no help medically yet,
sometimes i want to die!
pain is sooo bad.
can they improve any of it? I am told the scar tissue may make surgery risky. Many doctors afraid to go there. Its getting worse. Trying to go to McClains- part of Harvard. stay there for 2 weeks-plan. expensive!!!

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The Company that made the Bad Disc...long ago filed Bankrupt. The Doctor fled the country. Anyhow, I wouldn't sue them. I am sure that the Doc that put it in me believed that he was doing the right thing. Anyhow they could give me millions and know amount of money can take away the damage and the pain.
AND, ED48......your correct. The doctor who invented the metal implant in my jaw said he would not touch me. Way too many surgeries...scar tissue bone spurs nhe doesn't know where the nervers are any more or blood vesseles. However, he be happy to put an metal implant into the opposite side. Geez, why don't I just go out and shoot myself.

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