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Old 01-13-2013, 07:53 PM   #1
Join Date: Jan 2013
Location: Minneapolis, MN, USA
Posts: 2
Arts470 HB User
Oxycodone liquid Switching to Methadone? Plus my story in a nutshell

Hello to all the wonderful people out there:

I was rummaging around the net trying to find some info on the proposed switch for me( to be administered by my primary doctor who has been over seeing my pain management) in two weeks from Oxycodone liquid hcl sol 5mg/5ml( dosage= 5ml-10ml every 4 hours/15ml at night time) to Methadone and decided it would be best to actually put my situation out there and see if anyone would be kind enough to share their thoughts and opinions. I am wondering mainly four things(though additional input and anecdotes are very much appreciated).

1. What is the advantage to using Methadone vs Oxycodone?
2. If the time it lasts is the main advantage(I have been wanting something that is more even not so up and down and my pain is constant with severe flare ups when I eat, talk, and move my neck certain directions) than is there another extended release pain medicine other than Methadone?
3. I mostly have heard of Methadone for recovering from Heroin addiction, is it actually as effective as oxycodone at relieving pain?
4. My main concern is being able to get off these meds when all of this is said and done and if I have to( due to chronic pain) use some form of medication it would be very situational and not around the clock. From what I have read online Methadone seems like the absolute worst to get off. This isnt so much of a question as it is a posed thought; I would love to hear feedback on what you think about the topic one way or the other. Would there be a reason why a doctor would think such a switch is a good idea. I know I have mentioned it being a pain carrying around the big bottle going to appointments and whatnot and the easy nature for it to leak here and there, but I would much prefer a little trouble than being stuck taking a medication forever or a month of withdrawls when I want to get off of it.

I have noticed that sometimes background info is helpful/necessary for others to respond, so here is a little bit of my journey/battle. I am a 25 year old woman relatively healthy, yet when I get sick such as with pnemonia/strep/bronchitis growing up- I really get sick. There is no such thing as the 'flu' or a 'cold' with my body I am either all the way healthy or all the way falling quickly into another illness.

I sustained a cracked wisdom tooth on the lower left side in January '12, but due to not having dental insurance I brushed it off, however, after a couple months of increasing sensitivity it began to give me terrible headaches and I went to the dentist in May '12. It was decided the tooth had become infected and due to the large chip in it/pulp exposed that it needed to be pulled out. I had the tooth removed the beginning of June '12. I did pretty good marginal swelling for the first six days and even seemed to get better days 6-9 after the procedure. However, on the tenth day I woke up so swollen my submental area(under chin) was touching my neck four inches down and I couldnt open my mouth at all. I went back to the dentist, he gave me different antibiotics and told me if I got any worse or did not see any improvement over night I needed to go to the ER, the next day I went to the hospital.

I was immediately rushed into surgery as the swelling was beginning to compromise my airway. Four days later I was released, although both my mom and I had a funny feeling I wasnt quite ready to go home. Less than 24 hours after being released my face swelled up even worse I couldnt breath and I had just entered one of the scariest moments of my life. The ambulance came, I was trached and once again off to surgery. I was in the hospital for 10 days that go round, and this time when they released me I had two tubes coming out of my neck to allow the infection to continue draining out. I was told I had Ludwig's Angina which apparently is pretty rare and it was a very serious illness to have. I began to realize I was not going to be going back to work anytime soon. I had the tubes removed a week after leaving the hospital, however, a week after they were removed and holes stitched up I began to swell up again and the trismus(ability to open mouth) was getting worse. A CT scan confirmed I had a new developing abscess and was sent back into surgery. I was in the hospital for 6 days. A week after going home I was once again admitted to the hospital the cellulitis was back and gaining ground and I underwent surgery for the fourth time. This is the middle now the middle of July. Due to the persistent infection my ENT decided to leave the tubes in my neck for quite a bit longer to insure all of the infection was gone before I was sewn back up. The tubes remained in my neck three weeks post surgery.

Throughout the end of July I sawn my ENT/surgeon(I happened to get him in the ER the first time around and sort of stuck with seeing him ever since) once to twice a week, began physical therapy to aid with helping my extremely swollen facial/neck muscles, and upon his direction went to Infectious Disease to see if there was something wrong with my immune system. I knew at this point something was definitely 'not normal' with my body, however, he(ENT) remained optimistic that this was the end to my deep space neck infections yet insistent that the way I reacted to the procedures and anti-biotics was not usual and not appropriate. Into the beginning of August I kept complaining that trismus was getting worse again and talking felt like I was shouting through a pin hole in my throat just to get a small sound out, ENT insisted I was getting better I had just been sick for so long and was probably getting tired of it but to trust I was on the up and up so I let my worry go and trusted their thoughts.

It was August 18th I was set to go to my grandma's 75th birthday in Boston(I am from Minneapolis) but on the evening before my neck scar began pouring out blood and purulent fluid even though my tubes had been pulled out three and a half weeks previous and I had had no drainage for the past three weeks. Needless to say I didnt go to Boston. A CT scan confirmed I had a large subcuntaneous fistula extending into the deep part of my left submandibular gland and in addition my submandibular gland was four times the size of that of my right, it was edging into other spaces causing mass inflammation of my muscles. This was, I believe, the turning point after which my ENT/surgeon began listening to everything I feel and he has since become extremely attentive to minimal changes since I am as he says 'the one in a million chance'. I went into surgery to excise the fistula and had my submandibular gland(left side) removed. My doctor commented to my family after the procedure that he was a little iffy if he should go ahead and remove the gland previous to the surgery, however, when he got to look at it he said the gland was sooo infected it without a doubt would have kept getting me sick and invading other nearby structures- it had to go. I was in the hospital for five days.

This enters in the 'I think I am better' but 'I am really not' phase of treatment. I, along with my surgeon, genuinely believed for the first time since May that I was getting better. The pain for the first time in close to five months became persistent yet intermittent, which is unfortunately now something I can only dream of. For the next month, until the mid October I was going to PT twice a week, seeing my ENT once every two weeks, and ID was continuing to work on my immune system issue. Then it all came crashing down. I remember having to get up early to go to PT getting on the bus at 6am, it was cold and I was burning up. Not sure exactly how I managed to make it through the bus ride followed by the mile walk, but where there is a will there is a way and I knew I needed help. When I arrived, Jennifer(my PT), knew there was something drastically wrong and called up to get me into see ENT right away. I had a temp of 102.7 and was for all intent and purposes delusional, yet, the CT showed nothing minus mass inflammation of my muscles in my face and neck which we already knew of. I was sent to see my oral surgeon with my ENT hoping that she would be able to shed some answers on why I kept getting sick. Xrays confirmed there was indeed root tip and piece of the infected tooth left so we planned oral surgery for Nov. 9th.

The oral surgery went well, however, she stated after looking at the bed of the old tooth she did not believe this to be the place of the problem and said I had to see ID(infectious disease) right away as she was sure I had some sort of super infection keeping me sick. I tried to explain that I was already seeing ID and they didnt think there was anything wrong minus my ENT issues and were still working on my immune system work up. She didnt want to listen- she is never good about that with me. I found out on Nov 14th from ID that I do in fact have an IGg deficiency which would make it hard for me to fight infections once I got one. There is replacement therapy, however, my insurance wont cover it till after one year of being diagnosed, or if it was at even worse levels than it is now. ID expects me to need such therapy in about three to five years unless I remain ill than I may need it fall of '13.

We still didnt have an answer on why my jaw felt like it was being separated and my face being crushed in half; I could tell my ENT felt absolutely terrible and was in a scramble to try and figure it out. I went to Boston to see my family for Thanksgiving with his blessing and my ID docs not blessing( I had just gotten a cold turned bronchitis she was afraid I was going to come down with pnemonia) and while I was up there I went to a maxiofacial oral surgeon/ENT MD for a second opinion via my grandmothers wishes. My fever was still persisting at times making me incoherent, I was not in good shape the day I went in for my second opinion. This man is truly remarkable though, I gave him stacks of manilla folders of records containing bloodwork/surgery notes/office visit notes/scan results and he was pulling things out that had never been brought up to me before. His major concern was that at some point in this whole process my mandible had become infected. I mentioned, well I have had CT's wouldnt that show Osteomyelitis? Oddly, ct scans often miss jaw osteomyelitis especially a newly forming infection in the bone. Given my fever, I was sent back home early to see my ENT in MN.

At my first appointment back home for the first time I broke down and cried, normally I crack jokes in my notebook that I write down and we banter a bit back and forth. I have been a pretty good sport but it had reached the point that I just couldnt do it anymore. He promised we would do something; I could feel that he could sense the change in me that I had been pushed over the brink and it was crucial to find some reason to hope. It is one thing to have an illness that is tearing your life apart it is whole nother thing when the Docs have no idea what is going on and you are left feeling half crazy.

I went for an MRI instead of a CT this time on the Doctor from Bostons opinion since it is better for detecting jaw Osteomyelitis, and sure enough as conclusive as a scan can be the radiologist was convinced my mandible was infected and it was beginning to move up past the medial angle( why my ear is hurting so dang bad). I went in for surgery to drain an abscess that had also developed in my neck as well as a biopsy/culture of my left mandible the week before xmas and got out on Christmas Eve. I had a picc line( a long term iv) put in in the hospital and I was given my first treatment of the Invanz while admitted to make sure I wouldnt have an adverse reaction( I am allergic to penecillin, amoxacillin, and levoflaxin). I was then discharged and began my 8 week course of iv antibiotics(Invanz). My ID doctor did a bunch of leg work and was able to pull some strings with my insurance company so that I am able to have home care instead of be in the hospital for 2 months which I was super excited about. I have been on anti-biotics minus a 16 day lapse since May( 8 1/2 months) mainly Flagyl and Clindamycin with sometimes them throwing in Bactrim mainly before the planned surgeries.

This brings us to the present, I apologize for writing so much it seemed impossible to cut it down any farther without leaving out details. I have about three more weeks of this round of the 8 week anti-biotic iv treatment of Invanz. I just went in for a CT scan this past friday(Jan 11th) after my ENT felt a mass he did not like inside my mouth, the scan was clean for abscesses( which he was ecstatic about) but in all honesty the inflammation around my mandible was worse than it was in the beginning of December yet the infection in my neck has calmed down: you win some you lose some. The plan right now is to finish these next three weeks of the iv treatment then wait one week repeat the MRI, take blood levels twice a week( to check ESR, C Reactive Protein, and WBC), and if things spike or show the infection is persisting I will go back in for a more invasive debridement surgery have some fillament put in and go back on home iv treatment for another 4 to 8 weeks depending.

And here we are full circle to my questions on Oxycodone vs Methadone, this past Friday I saw my primary doctor who has been overseeing my pain management working alongside my ENT/surgeon and Infectious Disease( who is overseeing my iv anti-biotic treatment). I dont drink and minus smoking a little maryjane in college days have never done any form of drugs and to be honest all the meds I take just remind me of being sick vs the life I used to have. I dont want any of them. But to stay on tract, she gave me the same prescription she has been giving me for the last month and a half when the pain started to pick up to the point it was torturous, 55ml/mg a day, however, she mentioned that she wanted me to try and stick to a certain amount every four hours and not to take it as needed. She followed that by saying, ' We will see how you do on this and then depending on that switch you to the Methadone in two weeks'. I am a little disconcerted about this, why would she think Methadone is a good option? I know she mentioned it would cut down having to take it so many times a day, but arent there other options? Is there any form of pain medication that is liquid or a really really tiny pill( I am clueless about any of this stuff and apparently have to start researching before I get put on something hellish)that I could swallow to do the same thing? My approach through this whole muck is that Doctors know best, I do not second guess though I am not a fly on the wall at the same time, but when I heard 'Methadone' it made me straighten up in my chair. Two weeks before she had told me 'Dont let anyone look at you funny or give you crap for the amount of medication you need, you are doing everything right and have been handed a terrible situation. I just wanted to let you know I am proud of you and how you have dealt with these last nine months', but now she is talking Methadone which only makes me think she thinks I need rehab or something. I am so confused. Is it really used for pain management? Does it really work? Is she only thinking of it because it is the only other liquid option available and it is horribly hard for me to swallow?

Any thoughts/questions/opinions on any of this would help so much! Sometimes it gets really lonely on a physical and mental level being sick for so long and I know so many of you have such a harder battle than myself and I am thankful for everyday I have here. Really, I havent talked to anyone that has been in a situation like mine and do not have anyone around me other than my doctors that know anything about these medications, so it would be really great to get some guidance on the matter.

Have a lovely evening!

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