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Posted 8/12/2012 1:46 AM (GMT 0)
This is my first visit to any chatroom, so I'm a little nervous about opening up. I have an incurable syndrome called Adhesivie Arachnoidits because it affects the aracnoid layer of the spinal chord. It's cause is unknown, though most think it has to do with failed back surgeries &/or injections. I've had 3 back surgeries, the last a fusion, for ruptured discs. Over the last 20 years, my condition has deteriorated to where I live a life of uncontrolable pain. The pain is mostly nerve pain, although I suffer from fibromyalgia and arthritis as well. I had my right hip replaced two years ago, and will have the other replaced this summer. Nothing can control my pain. I've been on every narcotic there is and I tried an interthecal pain pump (unsuccessfully). I've raised two children, and am married, but if I can't get this pain to a managable point, I'm going to have to file for disability. The only reason I'm able to work now is that my husband of 25 years is unemployed and without my income we'd be destitute as well. Every day there seems to be more pain or a different type of pain. I've built up such a tollerance to narcartics, nothing is helping. I feel as if I'm going crazy. I can't walk without a walker, cane or most days a wheel chair. Does anyone else live like this?
Posted 8/12/2012 2:32 AM (GMT 0)
Good evening Spiderwoman!…and Welcome to our Chronic Pain forum!

…I'm terribly sorry to hear that you are suffering from this horrible and extremely painful condition. One thing I would suggest it to look up the "COWFA" organization that deals strictly with this condition. There are several us here that are interested in hearing about your pain pump experience, so feel free to share that with us. My Dr has mentioned it several times, and at one time a few months ago I was scheduled for an appointment for one.

You and I share some likenesses in that I too continue to work to support my family here, and it is very hard to do while suffering from back pain. I'm guessing that you have tried all of the nerve med's? (lyrica, gabapentin and so forth) You are indeed in a bad spot if the pump has failed, and I cringe at that thought! shakehead I myself had a double lumbar fusion two years ago and currently am suffering with bulging disc in my cervical as well. The lumbar is now considered a failed back syndrome…and is of the worst of my pain, and one by one I'm going through the pain med's with little success so far.

One thought…is even though you have built up a tolerance to many of the pain med's…they can be rebuilt if you have been off of them for several months to a few years…so you might want to revisit a few of them just to see if they will once again help. I feel badly for you, and your condition is considered one of the most painful of the back pains to experience.

Also, for an extreme measure…has your Dr suggested the Fentanyl suckers?….they don't get scripted often for chronic pain..but one of our Moderators does use them for CP. It might be worth a look at them…especially if your pain pump med's failed to bring you relief. I would think your PM/DR would be sympathetic to the possibility.

Take care, and we are so very glad you joined this forum! Enjoy!

SE wink
Posted 8/12/2012 3:44 AM (GMT 0)
Hello Screaming Eagle. Thank you for your warm and sympathetic welcome. I'll adress a few of the points you mentioned for informational purposes, and hopefully to solve a mystery. First of all, the mystery.  I have tried three times, unsuccessfully, to join COFWA. I have completed their lenghty and somewhat personal registration 3 times, but have unfortunately never heard back from them. That's what led me to try your site. It is current, and I hoped I might find someone who would relate to my situation. I don't know if I did something wrong or what happened, but I finally gave up trying to contact them.

I'll be happy to tell you about my experience with the Interthecal pain pump.  I was wearing Fentynal patches, 200 mcg. and taking dilaudid and neurontin at the same time.  It wasn't touching my pain, so we decided to try the pump. I took about 10 days off work, weaning myself off all medications so I would know exactly how much relief I was getting from the pump. Needless to say, I was in unbearable pain when we began the processs. My physician inserted the trial catheter into my spine. Due to the copious amount of scar tissue he was almost unable to insert it, and the scar tissue may have been part of the reason why the process didn't work.  Anyway, we finally got the catheter in and hooked up to the hand held pump. I stayed overnight in the hospital because we wanted to have plenty of time to increase the dosage of morphine. I walked the halls for 15 minute intervals, rested in bed lying and sitting, and sat in a chair. I don't know where he started the dosage, but it had to be pretty high for me to be able to function. Every hour to two hours, he would call and ask me how my pain was on a  scale of 0-10. I would tell him and he would increase the medicine a bit more.  After 24 hours I realized that I was getting massive amounts of morphine and no more relief than what I had been getting with the Fentynal routine I had been on. We met face to face, and I very dejectedly decided to remove the catheter and return to my previous medical protocol.The risk/reward factor just wasn't high enough. Needless to say, I was devasted. This was my last hope, and I really thought it was going to work.

about 5 months later, I switched to a different narcotic combination which gives a bit more relief than the last, but only if I don't exert myself (like go to work).  There was one drug that I was able to take called Fentora that gave me more relief than anything I have ever been given before or after. It was available by voucher & perscription for a limited time and it was amazing.  Then the FDA got there hands on it and decided it could only be prescribed to people suffering from cancer.  It is no longer available to me.  It's ironic that a diagnosis of basal cell skin cancer could change all of that.  Regardless, that's my experience with the pump and the other points you mentioned.  I don't know how long this current medication is going to allow me to work.  I want to keep working, but I pray everyday that I won't have to much longer.  The pain makes it nearly impossible.

Take care, and thanks for your encouragement. 

Posted 8/12/2012 3:56 AM (GMT 0)
…take a look at this post, just posted a few days ago…it mentions the Fentanyl suckers, and one of our mods was just approved for it…and is called Actiq
I'm thinking the Fentora is about the same…but I'm not familiar enough to really comment with confidence on it. I will ask Tina to take a peek at this post and see if she can help shed some light on this for you.

It is cases like yours that leave me absolutely broken hearted and at a loss for suggestions. I will offer this though!…you are very welcome to vent, and seek support here on this forum anytime you need it. Please do keep checking this post, as someone may see it, and have a few suggestions for you.

Good luck!…and again…I'm so sorry that you have been left in this type of situation.

www.healingwell.com/community/default.aspx?f=16&m=2482481

SEwink
Posted 8/12/2012 4:05 AM (GMT 0)
Thanks. I have a doctor's appt. Tues. and I can check it out. If you can find out & let me know, I might be able to get a script. My doc. is willing to do anything he can to help me. This sounds promising! :-)
Posted 8/12/2012 4:10 AM (GMT 0)
I just sent Tina an email…and she should respond either late tonight or in the morning…keep checking…and hopefully we can get you some help.

SE wink
Posted 8/12/2012 4:20 AM (GMT 0)
Will do! I'm so happy to have found you all!
Posted 8/12/2012 4:27 AM (GMT 0)
…I just spoke with Tina…she is headed here…so hang on! smilewinkgrin

SE
Posted 8/12/2012 4:39 AM (GMT 0)
Hi Spiderwoman,

Welcome to our board here at HealingWell... glad you found your way here. I hope you will find the members here friendly and supportive :) I have heard of your condition and it sounds horribly painful. I'm so sorry that you are suffering from this.

I have multiple pain issues as well.... and pretty much have exhausted all of the oral meds as well. I did take a "drug holiday" from dilaudid for about 7 months... and, for the moment, it is helping some.... and I just got approved for another round of Actiq (the fentanyl suckers). (I've also had the pain pump trial; but have opted to wait on this for right now).

Anyway.... getting Actiq and Fentora approved can be a bit tricky. Most insurances will deny it the first time around, especially for chronic, non-cancerous pain. Many pain doctors, though, do use it "off label".... and can do a pre-authorization for the med.... my doctor specifically wrote on it that we've exhausted all oral medication.... and that we are using this medication to keep me out of the ER multiple times per month.

As you've found w/ the Fentora.... the great thing about oral fentanyl is that it has a very quick onset - which is great when you are in severe pain.

Someone here recently told me about the voucher w/ Fentora and I looked it up online... It will give you 28 tablets w/ a prescription.

Anyway... talk to your doctor about the Actiq. It is listed for "cancer pain"... but, as I said, many doctors use it "off label".... as doctors do w/ many drugs. It's just VERY expensive and your doctor may have to jump through a few hoops to get it approved for you. However, from what you describe, you (like me) are at the end of the road, in terms of what works for you.... so I really hope you can get it approved.

If you have any other questions, please feel free to ask. Take care, and again - welcome smilewinkgrin --Tina
Posted 8/12/2012 4:49 AM (GMT 0)
Thank you so much.  I will do as you suggested and speak to my pain management specialist on Tuesday.  Maybe there is something he can do.  We'll see if there isn't some way to get around it with the insurance company.  I really need this. I'll keep in touch, and keep on the lookout for any additional advice. Thanks again for the warm welcome.

 

Posted 8/12/2012 4:49 AM (GMT 0)
One more thing...

Actiq is the fentanyl sucker... it dissolves through your buccal membrane (lining of the mouth).... it comes in strengths from 200mcg up to 1600mcg.

Fentora (as you know...) is a quick dissolving tablet that you place in your mouth between your gum and cheek. The strengths go from 100mcg to 800mcg.

I've used both... and always had more success w/ the Actiq... but that's just me...

Anyhow, I wish you luck on getting something to help w/ your pain!

--Tina
Posted 8/12/2012 4:49 AM (GMT 0)
…the only other thing I question..is why morphine was the only med tried for the pain pump trial. I understand that it is the primary med used for this, but I have known of patients that have had dilaudid added when the morphine was not working for the trial. Also, has your Dr considered liquid med's (oxycodone)? I think part of the difficulty is that the nerves in question causing the problem are located under the protective membrane of the spinal cord.

I hope your Dr can help push for the Fentanyl suckers…since all else has failed.

Also here is a link that will give you plenty of reading on the subject. I simply used our search feature located in the upper righthand corner of the forum page.

www.healingwell.com/community/search.aspx?cx=010904608862850737972%3A1v124njdg5g&cof=FORID%3A9&ie=UTF-8&q=Adhesive+Arachnoiditis&sa=Search&siteurl=www.healingwell.com%2Fcommunity%2Fsearch.aspx%3Ff%3D16&ref=www.healingwell.com%2Fcommunity%2Fdefault.aspx%3Ff%3D16%26m%3D2485960&ss=

Take care, and have a good evening!

SE wink
Posted 8/12/2012 12:46 PM (GMT 0)
Good morning. You can't imagin how excited I am about the possibility of these alternative suggestions!! Actiq sounds extremely promising if I can get the insurance company to approve it. Was yours approved on a diagnosis some sort of Chronic Pain syndrome? I am currently taking Oxycontin in pill formula, 140 mg. every 8 hours with and additions 20 mg tablet for break-through pain. This is sufficiant if I'm hanging around the house doing very little. When I'm at work, I'm ok for about 1 1/2 hours on my cane (if I wake up and it's a good day). After 1 1/2 hours I have to go to the wheel chair, and by the middle of the afternoon I'm in agony and I would have to over dose in order to get relief. I cope as best I can until I can get home, into bed and wait (in tears and moaning loudly) unitl my next dose; that takes 1-2 hours to kick in. It's just not working! The Fentora was fast-acting and gave me immediate relief for about an hour or 2. If you've had better success with Actiq & it's allowed for chroni pain, I may have hope. In addition, I'm going to ask about the liquid form of Oxycontin. Obviously it will work faster when I really need relief.
As for why he didn't put anything other than morphine into the pain pump, I can't answer that. Maybe he felt that the amount of scar tissue was prohibiting proper distribution/absorbtion of the medication and that nothing else would be able to reach the source either. Does that sound lame? He originally spoke about introducing a "cocktail" of medications through the pump, but having no success with the amount of morphine we tried discouraged him from trying to persuade me to continue with the process. I was ready to go through with it if it had worked. I had dreams of freedom from pain and being able to exercise, lose weight, walk around at the mall or grocery store....live a normal life. He knew how much I wanted it, so I'm sure there must have been a good reason why we stopped after trying just the morphine.
Thank you for the hope you've given me. I can't wait until Tueday's appointment!!!
Posted 8/12/2012 1:01 PM (GMT 0)
…it's a liquid form of Oxycodone…not Oxycontin…just wanted to clarify for you. smilewinkgrin Also, I think it might be worth at least seeking an answer about the trial pump and other med's vs. the morphine…as you really don't have much to loose here. That is one thing that I will ask if I have the trial. I would want to give it the best shot before giving up on the idea. Have you gotten a second opinion on it?

As I read the dosage of your med's…all I can say is WOW! Thats a lot!…and I have never met a patient at those levels. Again I feel badly for you! Please do keep us updated on all of this, and I hope you make this your Chronic Pain support home. I have been here since 2009, and have enjoyed it immensely, and I believe you will too! Were not Dr's…but we do have a lot of members with a vast amount of experience in dealing with chronic pain.

I will also invite you to read the chronic pain 101 located at the top of our home page, and it is always wise to take a peek at the forum rules while your at it. Let's hope your appointment goes well on Tuesday of this next week. My appointment is on Monday, and I'm hoping for a change of med's and on to some much needed relief as well.

I don't want you to get your hopes too high, as the Fentanyl suckers are a rare med to be scripted for chronic pain…but like Tina, I would think that there are special cases, and Dr's that may be sympathetic enough to push the approval for them. Again, since your pump trial was a failure, I would think you would be a special case for consideration. We can only hope this for you.

There is another member who I know of that has been diagnosed with this, and she has a pretty extensive medical knowledge on almost everything that she is afflicted with.. and then some! (mrsm123)…However, I have not seen her post here in quite some time, but she does lurk here now and then. I'm hoping that maybe she will see this post and comment on it. Straydog is one of our pump experts as well, and might be a good source of information for you on them.

One tip that is important to many of our members, is that when you post we ask that you try and break up your paragraphs into 4 to 6 lines at most, as it helps us that have poor eyesight and tracking problems. It makes reading so much easier for us. Thanks for your consideration on this!wink

Take care,

SE wink
Posted 8/12/2012 1:46 PM (GMT 0)
I am having trouble reading this post on the Ipad, not sure if I changed a setting but its all over the place. So forgive me if I repeat alot. I am also having a tough week and am not up to typing to much.

Arachnoiditis was a dx that I got before back surgeries. The dr says "possibly" caused by menangitis. At that time I started with PM. Pretty much been on fentynl since then. I have acquired other dx since then, multiple surgeries and treatments. Fentora was my best and most effective BT treatment, but of course I changed jobs and insurance and the job wont pay. So after two years of effective BT pain relief which still allowed me to function not impaired I was out of luck. The next best thing for me is Oxyfast, this is the liquid oxycodone, it is hard to find as most pharmacies cant get it thru their distributors. I also cant take it while working as I feel it impairs me. I am prescribed 10-20mg every 4 hours prn. Must note that I have had gastric bypass, so my absorbtion is messed up. Hits super hard and quick, but only last very shortly.

My PM dr still wants to try again to appeal for the fentora or at least the Actiq but it doesnt look good. I just got my spinal cord stimulator 3 weeks ago and am hoping this puts a dent in my pain. We will see. So far I can still work, although my PM dr suggested SSD years ago. I manage every day by holding my breath and breaking down while people arent looking. I feel I am to young to give in to pain. Irrational I know,lol.

As others have said, welcome to HW! Make yourself at home!

Hugs,
Shell
Posted 8/12/2012 2:25 PM (GMT 0)
Good morning Shell!….I have also heard of Chemical induced Arachnoiditis caused by injections..such as Epidurals. Not sure there is a need here for this little tidbit…but thought I would post the information as well. rolleyes tongue

I do remember that one of my best friends was on the Oxyfast, and she did rather well on it. Thanks for calling out the name of the product…I will try to keep a mental note of it now. (that would be a miracle in itself! smilewinkgrin..)

SE wink
Posted 8/12/2012 2:52 PM (GMT 0)
Sorry to have been so long winded. Just releived to have someone to talk to. No one has ever understood what it's like. I'll make my future posts shorter. Thanks so much for all of the good suggestions.
Posted 8/12/2012 3:13 PM (GMT 0)
LOL…you can be a windy as you want!…were just asking for paragraphs to be split up a bit. There is no rule on it here…so don't worry if you forget…we just want all member to be able to read your post. It benefits us all.

SE wink
Posted 8/12/2012 3:28 PM (GMT 0)
All is ok, for some reason just this post is goofy for me, I cant enlarge it and it scrolls way over to the right. Its a computer issue I think.

Not sure if the "brand name" Oxyfast is even still available. The pharmacy was clueless when I asked for it. It took a Mom and Pop phar to get it. Once they closed, the owner went to work for a chain and then they finally got it for me. I get a generic made by Glenmark typically. Just marked Oxycodon Hyrochloride oral solution. 100/mg/5ml, 20mg/1ml.

You are correct SE, when I was dx'd, the NS did say it could be from injections, injury, surgery or illness. Who knows in my case.
Posted 8/13/2012 1:40 PM (GMT 0)
Hi SpiderWoman and welcome to the chronic pain forum. I read about your trial for the pump and I am really so sorry about what happened. You know, it very much sounds like the catheter was not in the right spot. If that catheter is not where its suppose to be then you get no relief. I have a question, I wonder if its possible to place the catheter with guided imaging? They do eppies and procedures all the time using this technique so I wonder why they couldn't do the same for this. Perhaps you can put this question out there to your dr on your next visit. From what you have gone through with all the surgeries and end up in the shape that you are in now, I think if there is any way possible for you to do another trial I would sure ask about this. I know SE asked about Morphine being used, I think that may be pretty much standard with the trials. I had Morphine during my trial and could not tolerate it in the pump after the permanent one was implanted.

Also, if you are able to get the lollipops Tina is talking about, please be very careful with your teeth, these can cause major dental problems. Be sure to brush your teeth after using one. We have had prior members here that ended up with a mouthful of cavities from using these long term.

Anyway, I wanted to pop on an tell you hello and welcome aboard. Take care....Susie
Posted 8/13/2012 9:56 PM (GMT 0)
Hello Straydog,

I just wanted to let you know that he did use the flouroscope for guided imaging when inserting the catheter.  He had to since I have so much scar tissue back there. I know he had a terrible time putting it in. He said it usually took about 10 minutes to position a catheter. It took him almost an hour using the guided imagery equipment. I don't know if he could positition it in the optimal location, but he did the best he could.

With Adhesive Arachnoiditis, exstensive spinal chord scarring, permanant inflamation of the arachnoid layer of the chord, and bundling of the nerve roots are the usual presentation of the syndrome.  Apparently all of my surgeries, epidurals, and injections have made my back a giant mess.  There is no guarantee that he can successfully implant a catheter where it needs to go to deliver the medicine effectively, so I'm very hesitant about attempting another trial.

In addition to Arachnoiditis, I've got fibromyalgia, and my joints are deteriorating due to arthritis. I had my right hip replaced (2 years ago at age 46), and now I need my left one replaced. With all that's going on if I try to do anything, like work, my meds don't cut it. I've got to get something like Aqtiq or Fentora,or I'm going to have to file for SS dissability.  I can't take it any more & I certainly can't spend my days hiding tears from my 7th graders! There can't be anything worse than this type of pain. It eats at your soul! (Sorry it's been a very painful day). sad

Posted 8/14/2012 12:13 AM (GMT 0)
Oh Spiderwoman, bless your heart, I did not realize the dr did use guided imagery at the time of the trial. With that being said I totally understand your being hesitant in doing another trial, I don't blame you a bit.

I do hope your dr will come through for you and give you the medication you need to help control your pain. Your quality of life is being robbed. Please keep us posted on how your appt goes with your dr....Susie
Posted 9/7/2012 12:47 AM (GMT 0)
I was injured in an oilfield accident in early 2009, After several months a neurologist scheduled me for a decompression surgery. It was supposed to be a 3 hour in and out procedure but when he got in, my spinal cord at the cauda aquina was in such a mess that the surgery went for 14 hours. I was scheduled to be in the hospital for two days but the extended use of drugs to keep me under caused severe intestinal problems, (they would not wake up). My stay lasted for 12 days. After healing for six to eight weeks I started feeling better.

After ten to twelve months, the same problems started and I was sent to a different specialist who did a spinal fusion from the front. After healing for a month or two I was feeling great. Spending time with the kids and actually being able to participate in some of their paintball games and such. After six or eight months my condition rapidly deteriorated and I was getting worse than before. The same Doc sent me for a post-op MRI to discover by another specialist that I had adhesive arachnoiditis.

I take time released morphine sulphate three times a day, with Hydroco/apap, Lyrica, Gabapenten, and Flexeril to polish it all off. I am only 41 now and I feel and move like I'm 65. My doctor has scheduled me for a visit to have the spinal neuro-stimulater implanted thinking I might be able to use less meds. Has any one had this device and if so, how well does it work? I can't take much more of this kind of living, I feel like my kids are ashamed of me when their friends are around and I'm on a walker or with a cane. I'm at the end of the rope and don't know where to go from here. Is there any one who has this problem and knows how this neuro-stimulater works? Is it effective? For now I hide the pain because my wife and kids don't understand, I just wait for the rain because it hides the tears and I get a little time to let it out. To top things off, I started having serious stomach problems and during another 10 day hospital stay, I was told that I have an adhesion caused by the fusion surgery and it has caused a tumor between my stomach and the upper intestine which has caused a nasty blockage so I can now only eat soups and soft food. I'm being scheduled to see another specialist to surgically fix that issue. Does anyone have any words of wisdom, something to help ease my mind?
Posted 9/12/2012 12:18 AM (GMT 0)
Dear Strapped,

I'm so sorry about your troubles, but I'm so glad to meet you. You are the first person I've met with adhesive arachnoiditis. I want to tell you that things get easier, but I wouldn't be truthful if I did. I'll be forty-nine in November and have 2 daughters who can't accept their mom in an electric scooter, or on a walker, or with a cane.

 I can't go shopping with them for more than a quick trip because I can't walk or stand for more than 10 minutes at a time, and if I go somewhere with them with the scooter, their afraid I'll run into someone & embarass them or something. My girls are 23 & 18 so you'd think they'd be able to accept the fact that I've become disabled, but they act like it's all going to go away.

I'm having a hard enough time with the emotional realization that my life has changed dramatically, and I can't do any of the things I could before.  I am a teacher, and I'm working from my scooter because I have to.  My husband has been unemployed for almost 4 years and until he can find a job with insurance, I can't stop.  There are days when I can barely get out of bed, but I do it anyway because I have no choice.

I tried the pain pump, but it didn't work. I was going to ask about the neuro stimulator, but just found out my pain management doc. is leaving, so I don't know who I'm going to find and what they'll want to do.  Things are so uncertain right now. I was going to file for Social Security Disability, but until we find out what our finances will be like, I can't do anything more.

I'm really sorry about your stomach complications. It's bad enough to have to deal with the debilitating pain in your back without having to deal with intestinal problems. Wish I could help by answering some of your other questions. I was diagnosed with aracnoiditis 3 years ago, so I can tell you a lot about my experiences with that. If you have any questions, ask away. There aren't many of us around.

Take Care,

Spiderwoman

Posted 9/12/2012 8:38 PM (GMT 0)
Gosh, Spiderwoman, I feel like we could be long lost twins! My daughter also thinks that one day I am going to be miraculously better. She too gets embarrased when I am out and about on my scooter, I guess its a teenage thing. My step grandson loves the scooter though, he is such a helper to me, since the day he was born this is all he knows from me.

I am an occupational therapist in schools so also know the deal with the kiddos with the scooter. I think when I was heavier it was more accepted. Now that I lost weight everyone assumed that my pain was going to go away and I was going to be perfectly fine and pain free. When I say, thats not how it works, I get some stares. Thankfully this year I have not needed to use my scooter, but I am using my cane a good portion of days. I probably wont lose that, but thats fine with me.

Its hard to tell how good my SCS is working for the pain associated with AA. I have multiple similiar dxs that all cross over somewhat. I can say its working great for my burning RSD pain areas as well as the aching in my feet and legs. In the morning I can swing my legs right out of bed and stand straight up without gasping in pain. I want to say that from the hips down I dont go much above a 4-5 pain level, thats awesome!! Still on my LA med, but I will take that decrease. My lower back on the other hand doesnt seem to be much different. But I am only 8-9 weeks out and am sure I will need reprogramming frequently as we go during the first year.

I cant say I have decreased LA or BT meds at this point. I was always greatly undermedicated, by my own choice. Due to my job requirements and my need to not feel impaired I chose to suck it up and deal with pain. My PM DR recommended SSD years ago, but I too needed to continue working to keep my benefits. Its a viscious cycle!

I wishyou luck with whatever you decide to do. Maybe the SCS would be worth looking into! The great thing is thatyou do the trial to get an idea of what it will feel like. That way its not a major surgery and then you hate it. Keep us all posted on what you decide!

Hugs,
Michelle
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