BlackWarGreymon
Greenlighter
- Joined
- Sep 16, 2015
- Messages
- 22
Good Morning,
I will begin with explaining my situation. I have an acquired advanced airway disease which resulted from prolonged intubation immediately after birth. After 110 surgeries I am fortunate to be alive still. I had a few surgeries around say the last 3 which really were not helpful and the doctor worked in areas in the upper airway and epiglottic region. Now I have more issues than I had previously and am in more pain than I was years before. I have since been told that further surgery on my airway is likely not to benefit someone such as myself and seeing how more harm has come than good I feel its best to not have any for as long as possible. The nature of this disease though is over time months to a few years my airway will grow more polyps and grow shut slowly resulting in more energy needed to breath and further pain especially since half of my airway is just collapsed and I got no structure really left that looks anything like a normal airway. I was told various options but the two main ones would be to have a trachea inserted which is not an option for me and won't get rid of the pain I have due to the failed upper airway and missing half my epiglottis function resulting in dysphagia and more tissue inflammation and scar tissue pain. The other option is to mess with my voice which I don't use my vocal cords because one is paralyzed and the other is buried in scar tissue! I can talk with a deep raspy voice because since birth my body has adapted. Had I been older it would not be so.
So basically further surgery for me is a no go. So they told me I would have to make lifestyle choices. They never said what those were and I can only guess as to what they meant. Anyhow now with this issue I been seeing a Pulmonologist with an internal med degree rather than an ENT doctor who would only do surgery anyhow.. I seen the best in the USA and don't care to let just any wise crack doctor try a stab at me, no way! Of course the Pulmonologist cannot treat my disease surgically so I see him because he is willing to treat me symptoms at least long term. Thing is the government says if your in pain chronically long term to see a pain management specialist. I been on Norco 10/325 120 for months then I went to Percocet 10/325 120 for three months but switched back because the Percocet cause me to have a stimulating effect and I found I had to take more after 2.5 weeks and the effect was not lasting as long. So my tolerance was going up faster than with Norco and I felt many times I took Percocet it did not work. So I just decide to stay on the Norco for now. I have tried Tramadol which I thought was ineffective period. I think my body lacks the enzyme to metabolise it to the M1 Metabolite or whatever.. My doctor has cut my dose of Norco to 90 then to 60. So now I asked for an addition medication to supplement with it. I currently also take Celebrex 200mg twice a day sometimes I take 400 twice a day and take breaks from it too. As with my Norco I sometimes take more than two a day as I really find taking it three times a day is best so that means I would run short 7 - 8 days early before my next refill. My doctor knows that but he is a bit of an ass too.
He tells me I don't need to go to a ENT and that seeing a Pain Management Doctor is up to me but he does not recommend it.. He tells me I am seeing the best doctor right here.. yeah I get a hint of self inflated worth. I take a few other medications for my GERD and even with insurance it all cost me a lot. So I mentioned that even prior to me not having insurance for like a year so self paying to see a doctor and pay out of pocket with rx coupons still cost me a lot. He tells me if I have trouble paying for my medications to sell my Norco on the street 2 - 3 tabs would be enough for me to pay for my meds. I was like um.. yeah whatever... That struck me as "I don't give a fuck" attitude and he thinks too big of himself. I will not nor never sell my medications I mean I never used any illegal drugs ever! The only advantage I have so far with this doctor is he always gives me my refills and he rarely does urine tests which is fine when he does I always make sure I have my medication in my system the day I go in just in case but still he is rarely doing urine tests and the last one I paid for was 100 dollars without insurance so yeah I really was against such things its costly... not to mention makes me feel like I am being interrogated...
I went to a Pain Management Doctor at the place I work, ironically because everyone said oh he is so good.. yeah I was not feeling well and debated even putting my health and personal things with my work.. kind of a no go but I decided to go in for one visit. I was given a script for the same pain meds and dose my previous doctor had me on and he made me sign some dumb contract before seeing him which I really laughed at seeing how I knew he smoked pot all the time himself and admits it yet he told me seeing him he would treat me like a drug addict and do genetic testing for addiction potential and all this bull... and so I was like yeah sure try to scare me whatever... So he basically took a stance and said he would do a spinal modulator for my pain maybe but I was like no that would cost a lot and the injections he asked me about I was like look there is no injection you can do to treat an airway disorder as advanced as mine so don't even sell me that bs... I was also told he was asking why I was coming to him for painkillers and that a few docs just got shut down in the area due to the recently DEA crackdown and so he was saying he is trying to fly under the radar and prescribe less and less to not draw attention for a visit. So basically I took my script and left and after 31 days I told him I was not returning and went back to see my main prescribing doctor!
The pain I have is getting to me and being able to take 3 Norco a day along with the Celebrex is better than taking just two but my doctor won't give me more than what he has me at now.. So sure I am going to push this time for 90 tablets and see how it goes because I will be seeing his new P.A. while he is out of office so maybe I will get lucky. But who knows.. Even so yeah I will admit I do often times in extreme pain take 30 - 40 mg of Norco at once but not as not a daily or weekly thing. My doctor tells me I can take 20mg at once max but not to do it often... but I question then why he won't give me anything stronger.. well its probably due to the recent crackdown and the fear...
So basically I am looking into this new pain management clinic and am going to get a referral and try it out. Maybe they will do more for me but having to sign a contract and such gots me a bit annoyed but if that is what it takes whatever... I been researching newer opiates anyhow and the newest one Nucynta is very expensive and I hear in higher dosage it can make one seeing things.. not something I want... Norco is a tried and proven opioid which always has worked for the most part. I did look into a longer acting drug that is cheaper like Levorphanol but I don't see my regular doctor doing that or even giving me Dilaudid. So I have to see a Pain Management Doctor for those most likely. Another drug I would like to take and have taken in the past was Dexamethasone (Decadron) and at high doses the effects on inflammation and pain are great but the side effects long term are very extreme and so I am not sure if its an option to take on a semi weekly basis or as needed because the side effects and risk of further health problems with steroids is extreme! I did ask my doctor for low dose Dexamethasone he probably would have given me some but my fear of side effects convinced him and myself to hold off but still Decadron was given to me by my past ENT for my issues along with Opioids so I know its a treatment regimen for my case. Oh I should mention that inhalers of steroid or other class for COPD or other Asthma related disorders do not work for my disease because its a fixed condition.
So basically I want to know if anyone has any suggestions and maybe can throw out some other medications for me to ask about or whatever. I mean has anyone taken Levorphanol at all and can tell me how effective it is? I have taken Hydromorphone 6 mg long ago after a surgery and I remember they kill pain well but the effect only last for 3.5 hours. Norco for me last at least 5 hours. Well any suggestion would be welcome!
I will begin with explaining my situation. I have an acquired advanced airway disease which resulted from prolonged intubation immediately after birth. After 110 surgeries I am fortunate to be alive still. I had a few surgeries around say the last 3 which really were not helpful and the doctor worked in areas in the upper airway and epiglottic region. Now I have more issues than I had previously and am in more pain than I was years before. I have since been told that further surgery on my airway is likely not to benefit someone such as myself and seeing how more harm has come than good I feel its best to not have any for as long as possible. The nature of this disease though is over time months to a few years my airway will grow more polyps and grow shut slowly resulting in more energy needed to breath and further pain especially since half of my airway is just collapsed and I got no structure really left that looks anything like a normal airway. I was told various options but the two main ones would be to have a trachea inserted which is not an option for me and won't get rid of the pain I have due to the failed upper airway and missing half my epiglottis function resulting in dysphagia and more tissue inflammation and scar tissue pain. The other option is to mess with my voice which I don't use my vocal cords because one is paralyzed and the other is buried in scar tissue! I can talk with a deep raspy voice because since birth my body has adapted. Had I been older it would not be so.
So basically further surgery for me is a no go. So they told me I would have to make lifestyle choices. They never said what those were and I can only guess as to what they meant. Anyhow now with this issue I been seeing a Pulmonologist with an internal med degree rather than an ENT doctor who would only do surgery anyhow.. I seen the best in the USA and don't care to let just any wise crack doctor try a stab at me, no way! Of course the Pulmonologist cannot treat my disease surgically so I see him because he is willing to treat me symptoms at least long term. Thing is the government says if your in pain chronically long term to see a pain management specialist. I been on Norco 10/325 120 for months then I went to Percocet 10/325 120 for three months but switched back because the Percocet cause me to have a stimulating effect and I found I had to take more after 2.5 weeks and the effect was not lasting as long. So my tolerance was going up faster than with Norco and I felt many times I took Percocet it did not work. So I just decide to stay on the Norco for now. I have tried Tramadol which I thought was ineffective period. I think my body lacks the enzyme to metabolise it to the M1 Metabolite or whatever.. My doctor has cut my dose of Norco to 90 then to 60. So now I asked for an addition medication to supplement with it. I currently also take Celebrex 200mg twice a day sometimes I take 400 twice a day and take breaks from it too. As with my Norco I sometimes take more than two a day as I really find taking it three times a day is best so that means I would run short 7 - 8 days early before my next refill. My doctor knows that but he is a bit of an ass too.
He tells me I don't need to go to a ENT and that seeing a Pain Management Doctor is up to me but he does not recommend it.. He tells me I am seeing the best doctor right here.. yeah I get a hint of self inflated worth. I take a few other medications for my GERD and even with insurance it all cost me a lot. So I mentioned that even prior to me not having insurance for like a year so self paying to see a doctor and pay out of pocket with rx coupons still cost me a lot. He tells me if I have trouble paying for my medications to sell my Norco on the street 2 - 3 tabs would be enough for me to pay for my meds. I was like um.. yeah whatever... That struck me as "I don't give a fuck" attitude and he thinks too big of himself. I will not nor never sell my medications I mean I never used any illegal drugs ever! The only advantage I have so far with this doctor is he always gives me my refills and he rarely does urine tests which is fine when he does I always make sure I have my medication in my system the day I go in just in case but still he is rarely doing urine tests and the last one I paid for was 100 dollars without insurance so yeah I really was against such things its costly... not to mention makes me feel like I am being interrogated...
I went to a Pain Management Doctor at the place I work, ironically because everyone said oh he is so good.. yeah I was not feeling well and debated even putting my health and personal things with my work.. kind of a no go but I decided to go in for one visit. I was given a script for the same pain meds and dose my previous doctor had me on and he made me sign some dumb contract before seeing him which I really laughed at seeing how I knew he smoked pot all the time himself and admits it yet he told me seeing him he would treat me like a drug addict and do genetic testing for addiction potential and all this bull... and so I was like yeah sure try to scare me whatever... So he basically took a stance and said he would do a spinal modulator for my pain maybe but I was like no that would cost a lot and the injections he asked me about I was like look there is no injection you can do to treat an airway disorder as advanced as mine so don't even sell me that bs... I was also told he was asking why I was coming to him for painkillers and that a few docs just got shut down in the area due to the recently DEA crackdown and so he was saying he is trying to fly under the radar and prescribe less and less to not draw attention for a visit. So basically I took my script and left and after 31 days I told him I was not returning and went back to see my main prescribing doctor!
The pain I have is getting to me and being able to take 3 Norco a day along with the Celebrex is better than taking just two but my doctor won't give me more than what he has me at now.. So sure I am going to push this time for 90 tablets and see how it goes because I will be seeing his new P.A. while he is out of office so maybe I will get lucky. But who knows.. Even so yeah I will admit I do often times in extreme pain take 30 - 40 mg of Norco at once but not as not a daily or weekly thing. My doctor tells me I can take 20mg at once max but not to do it often... but I question then why he won't give me anything stronger.. well its probably due to the recent crackdown and the fear...
So basically I am looking into this new pain management clinic and am going to get a referral and try it out. Maybe they will do more for me but having to sign a contract and such gots me a bit annoyed but if that is what it takes whatever... I been researching newer opiates anyhow and the newest one Nucynta is very expensive and I hear in higher dosage it can make one seeing things.. not something I want... Norco is a tried and proven opioid which always has worked for the most part. I did look into a longer acting drug that is cheaper like Levorphanol but I don't see my regular doctor doing that or even giving me Dilaudid. So I have to see a Pain Management Doctor for those most likely. Another drug I would like to take and have taken in the past was Dexamethasone (Decadron) and at high doses the effects on inflammation and pain are great but the side effects long term are very extreme and so I am not sure if its an option to take on a semi weekly basis or as needed because the side effects and risk of further health problems with steroids is extreme! I did ask my doctor for low dose Dexamethasone he probably would have given me some but my fear of side effects convinced him and myself to hold off but still Decadron was given to me by my past ENT for my issues along with Opioids so I know its a treatment regimen for my case. Oh I should mention that inhalers of steroid or other class for COPD or other Asthma related disorders do not work for my disease because its a fixed condition.
So basically I want to know if anyone has any suggestions and maybe can throw out some other medications for me to ask about or whatever. I mean has anyone taken Levorphanol at all and can tell me how effective it is? I have taken Hydromorphone 6 mg long ago after a surgery and I remember they kill pain well but the effect only last for 3.5 hours. Norco for me last at least 5 hours. Well any suggestion would be welcome!