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    Old 03-28-2008, 08:46 PM   #1
    duttin
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    Hoping someone can help

    I am scheduled to see a pain management Doctor for bilateral ADHEASIVE

    ARACHNOIDITIS and MULTIPLE SCLEROSIS. My neurosurgeon would like a

    spinal cord stimulator put in and my neurologist would like a baclofen pump

    also put in.

    My question is will a PM DR. follow the advice of my DRs. or will they come up

    with their own game plan?

    Also will they take control of all my current meds.I'm on baclofen,zanaflex,

    valium and ativan for chronic muscle spasms.Neurontin for neuropathic pain,

    buspar for mild anxiety , methadone for pain and provigil for chronic fatigue.

    Rebif injections for the Multiple Sclerosis.

    Do I have to sign a contract before I see the the PM DR? Will they give me

    time to consult with my current DRs before I agree with their course of

    treatment?

    As you can see I'm kinda dumbfounded when it comes to pain management

    and how it works.

    Any advice would be appreciated.

     
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    Old 03-28-2008, 10:23 PM   #2
    cmpgirl
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    Re: Hoping someone can help

    Hey Duttin: Welcome to the Pain Board! I will try to answer your questions as best I can. First, as far as the contract goes, this depends from state to state and doc to doc. I live in NY state and have never had to sign one. I see you are from Ohio and there is probably someone here more familiar with your state.

    Most good PM docs will work with you and your other physicians. They want to do what is best for you, the patient. I do know that there are many different types of pain docs as well. Some subscribe to the "no narcotics modality" some like therapeutic and others are a mix of the two.

    My advice to you is to go into this with a kind of an interview attitude. As if you are interviewing them. I would not sign any contracts, unless you know for sure that this doc is a good fit for you. If they seem to be disinterested or dismissive, thank them and try another. You as the patient, are essentially hiring them.

    I hope I've answered most of your questions. There are many here that can add things that I may have forgotten or do not know myself. I wish you the very best and please feel free to post often. There's a really great and supportive group of people here. God Bless, cmpgirl

     
    Old 03-29-2008, 05:24 AM   #3
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    Re: Hoping someone can help

    Welcome on board!
    I know what you are going through. I don't have MS, but I "inhereted "Arachnoidites after my first fusion and all ordeal with steroids injections, dye in myelogram, etc.
    I know what this diagnoses mean and how to leave with this not treatable, not curable severe painful condition.
    I am also under PM care. I go to NYC to see my surgeon, PM and Neurologist.
    I believe every DR works differently. In this particular Hospital they work as a team.
    After I see my PM he immideately consults Neurologist and surgeon office about my treatments, they do same thing: report to him my new tests and treatments. Last time i saw Neurologist, he called both of them while I was there to check with them if it's OK I have MRI of my neck or they suggest to check something else. I love this, feels good that your destony not in one DR's hands.
    I think you can ask your DR this question, he may explain to you how it works. And if something concerns you - you can request "team work" there too.
    Good luck to you and I hope it will work well for you!

     
    Old 03-29-2008, 05:52 AM   #4
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    Re: Hoping someone can help

    Welcome to the board! Many people here have a wide array of experiences, so you'll have a lot of opinions to help you.

    Both Moldova and Cmpgirl are correct. Each "clinic" has their own philosophy and Docs can all practice differently, yet achieve the same results.

    In my case, I was referred to a PM Doc from my surgeon (ENT). The ENT treated my pain for several years, and it got to the point where I need to start seeing a PM. My PM is an anesthesiologist...Does lots of treatment work, surgical pumps & etc. He has his own regimen, yet, he's also very big on if something is working, don't mess with it.

    When I first came on board, he left my meds the same, but suggested we try some things which I did because I didn't want him to think I was there just for meds...Some things improved for the better and some weren't all that great. Over a period of time, we got things stabilized. In fact, earlier this year, he offered to allow me to come in only every other month and get two scripts at once (one post dated). However, I chose to stay on a monthly visit in case I need some help. Trying to get an appointment there is very tough, so I'd rather just go monthly and be conservative.

    I think you have to go into the appointment with an open mind and see how things go. Hopefully, things will go well. If you don't care for the new approach, then maybe your Doc can refer you to someone else. Just as a heads up, most legit PM Docs today have very strict rules and procedures so make sure you have a good understanding. There isn't much room for mistakes so just keep that in mind.

    Hope this helps some.

    Ex

     
    Old 03-29-2008, 09:15 AM   #5
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    Re: Hoping someone can help

    just curious as to what other modalities or even narcotics you may have already tried? the one big thing about the stim and i am sure with the pump as well is they really are not recocmmended til AFTER you have really tried other options. i know for certain this is medtronics rxing literature. i am only asking this becasue right after my spinal cord surgery was done and i had not EVEN begun to really try anything yet to manage my pain using other options,my NS too was very very quick to advocate the spinal cord stim. this is just something that you really have to stop and think about before going ahead with it.

    the stim i know,at least the electrode points cannot be removed once they are in place. this would also limit the possibilities of obtaining an MRI/MRA type of testing too. there are just ALOT of things you have to really condsider and take a hard look at before consenting to either of these types of pain management,espescially if you haven't even tried alot of other options first. i don;t know what you have or have not tried yet,but going thu PM really gives you alot of other options other than just implanting something into your body. just give things some time to really find out if you really even need this at all. if something else works for you,why go thru that and all that comes along for the ride,ya know? you just NEED to be certain before consenting,thats all. giving the whole PM process a really good try first,really would benefit you in the best way.

    if this is actually going to be your very first visit and try with a good PM clinic,just give it some time and DO NOT let any doc pressure you into doing something til you KNOW in your heart that you have at least tried other modalities first and just really "feel" this IS the best possible option for you.there is just alot that comes along for the ride with either of these options.

    i would very highly recommend at least giving the TENS unit a good solid try before even contemplating the implanted stim,just to see if your pain even responds to the electrical stimulation. if that doesn't even work a bit for you,your overall chances of the implanted one are just a bit less hopeful. and do your research on both of these devices to really see just what is involved in having the surgical proceure done and what the overall risks are to you and what the maintannce involves. its just if you can obtain good relief using another option, or options, why go this route if you really don't HAVE TO. you just need to be sure,thats all. good luck with the PM and please keep us posted.marcia
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    9-22-03,removal of cavernous hemangioma that was inside spinal cord. Neuro damage to L hand L leg and R leg.

     
    Old 03-29-2008, 10:20 AM   #6
    JoJo921
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    Re: Hoping someone can help

    Hello,
    If you are going to see a pm doc I would listen real carefully to options that they will probably give you. I for one am not real big on the implants and feel that pain can be controlled much easier using conventional methods. It is much easier to adjust dosages and your relief from pain could come alot easier. Talk to your pm doc and explain your concerns about the implants and let him offer other options before a final desicion is made. GOOD LUCK!

     
    Old 03-29-2008, 04:56 PM   #7
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    Re: Hoping someone can help

    I have tried chiropractic care and numerous times of physical therapy. I also

    have tried other pain meds,vicidon,oxycodene and oxycotin.Now my neuro

    has switched me to methadone along with the other meds I previously posted.

    Last night was the first night that I slept all night long in months.

    I had went to the same pain clinic 3 years ago, but the DR. refused to listen

    to me and he done a few spinal injections,which I got no releif from them and

    he insisted on wanting to continue to do them,plus this PM DR. switched my

    spacticity meds to something that didn't work.

    Now I will be seeing a different pain DR. in the same facility and really hoping

    he listens.

    I have researched the stimulator and pain pump and the risk of infection is to

    great.Especially since I have had multiple treatments of solu-medrol (steroids)

    infusions.

    I feel that my neurologist has everything under control,plus I see him every 3

    months and I pick up my scripts in his office each month,plus my neuro

    does blood work every 3 months to make sure my meds aren't effecting my

    liver and so forth.

    When I was at the pain clinic in the past they never checked the liver

    enzymes and so forth.

    I will go with an open mind and see what this new PM DR. says, I would prefer

    the TENS unit,but the pain stimulator and pain pump isn't an option it has to

    be my last resort

    I never was big on any meds,I would advoid them at all cost, the meds I'm on

    I follow them to a tee.I have never over taken any at anytime, so following a

    strict regiman is not a problem for me.My worst fears is having a DR. turn my

    life upside down.

    Thank you for your advice

     
    Old 03-29-2008, 09:04 PM   #8
    stymie82
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    Re: Hoping someone can help

    Duttin,I am a fellow arachnoiditis sufferer. My pain meds are handled by my wonderful PCP, who cares about my quality of life. I'm also on Neurontin, baclofen, Celexa, and a couple other drugs beside the opioids. I belong to the best online support group for arachnoiditis. I don't think I am allowed to give the name here, but you could easily find it by searching. The consensus there is that the pain pump is kind of a last-ditch option, if your pain cannot be controlled by a regular med regimen.
    There are a few members who swear by their stim unit, and quite a few who had less than good results with them. I've read materials that state "stim units are not thought to be a good long-term treatment for Adhesive Arachnoiditis". After my diagnosis in 10/07 my neurosurgeon who diagnosed me was really pushing me to get the stim unit, but I decided to not do it at that time. As long as I can get the good treatment I have gotten so far, I will say this course. May the Lord strengthen you as we travel down this road.

     
    Old 03-29-2008, 11:41 PM   #9
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    Re: Hoping someone can help

    Hi Duttin: My cousin has failed back syndrome and severe neuropathy and he had been through every med and every therapy known to man. Some of these have helped with his muscle and joint pain, but none have worked for the nerve pain. It was getting to a point where he could barely walk. He did the week-long trial of the stim and was amazed at the relief he got. He said he could feel it while he was till on the table. He will be having the permenant done as soon as his insurance (comp actually) gives the OK.

    He stressed to me that it didn't do much for the non-nerve pain, but believes that the opiates he takes will now do a better job for the rest of his pain.

    I know everyone is different and this really was a last resort type of modality for him. I think that's why they do a temp implant first, to make sure it will be beneficial.

    Good luck with the new PM doc and let us know how you are doing. God Bless, cmpgirl

     
    Old 03-30-2008, 09:59 AM   #10
    duttin
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    Re: Hoping someone can help

    Stymie,

    Do You Have Adhesive Arachnoiditis Or Just Arachnoiditis,i Have It Bilaterally.

    I Have Decided After Extensive Research That Any Implant Is Not An Option,i Have Metal Rods In My Back, So The Electrodes Would Have To Be Placed At A Thoracic Level And I Have Lesions From Ms In That Area,so Implanting Anything Is Out Of The Question.

    I Don't Feel That Implants Should Be An Option Do To The High Risk Of Infection,i Have Been On Very High Doses Of Infused Steroids,so My System At This Point Can Reject The Implants,plus With My Disease Modifying Meds For My Ms,kinda Breaks Down My Immune System Also.

    The Thought Of Any Surgical Process Scares The Crap Out Of Me Anyways.

    I Honestly Think That With Proper Meds The Pain From The Aa And The Ms Can Be Controlled Through Meds.


    Cmpgirl,

    Thats Fantastic That Your Cousin Has Found Great Relief From The Stim,i Have Some Nerve Pain,but My Pain Radiates From The Lumbar Down Into The Legs.

    My Neurontin,i Take Low Doses At 300mgs Twice A Day,it Seems To Help A Great Deal.

    I Can Relate To The Walking Difficulties, I Wear Leg Braces That Aid In Keeping Me Supported.

    I Am Not A Big Fan Of Pain Meds,i Had Not Been On Any Meds For My Back Pain Since 2000,i Suffered Through It,until 4 Months Ago And All Hey-dey Broke Loose,thats When My Neuro Decided To Do An Updated Mri And That When The Bilateral Arachnoiditis Was Found,it Wasn't There In 2004.

    However I Did Have Bilateral Radiculopathy,but That Pain Was Manageable Through My Spasmatic Meds.

    Now I'm Hoping They Can Control The Pain Through Meds,i Have The Adhesive Arachnoiditis And Multiple Sclerosis,so They Are Feeding Off One Another.

    But I Have Great Faith In My Neurologist,he Has Done An Excellent Job This Far,if My Pain Reaches A Level To Where Pain Meds Aren't Working,he Always Makes Time For Me To Come In Or He'll Have Me Pick Up A New Script.i Don't Feel That A Pm Will Do This Well.

    But I Am Keeping An Open Mind And Will Be Willing To Explain My Concerns With The Pm Dr. When I See Him.

    Your Insights Are Very Valuable To Me.

     
    Old 03-31-2008, 08:55 PM   #11
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    Re: Hoping someone can help

    duttin, I have adhesive arachnoiditis. My left leg was involved first, then the nerve pain, numbness, etc. started in the right leg also. I'm blessed that I have a great PCP who will work with me finding the best cocktail of pain meds for my situation. May the Lord strengthen you and richly bless you.

     
    Old 04-01-2008, 09:44 AM   #12
    duttin
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    Re: Hoping someone can help

    Stymie,

    How Did You Develope The Aa, Mine Is From 2 Failed Back Surgeries,many Myelograms And Lumbar Punctures.

    I Do Know That Aa Is Rare And Extremely Painful,my Neurologist And Neurosurgeon Explained That It Is The Most Painful,incurable ,nonlife Threatening Disease A Person Can Endure.

    I Live In Ohio,here A Specialist Can Only Order Opiates And The Script Must Have My Address On It And The Reason Why I Need The Med.the Dea Is Very Strict Here.

    I Have My Reservations On A Pain Clinic,last Night I Ended Up In The Er For A Fever That I Couldn't Break.it Was 104.7,my Pulse Rate Got To 162 And Should,even Though They Got The Fever Broke,the Pulse Rate Was Still 158,so They Gave Me Morphine, I Was In Such Extreme Pain From The Fever,they Beleive Its A Viral Infection.

    If I Went To A Pain Clinic They Couldn't Of Treated My Pain.

    I Keep Moving,even With The Multiple Sclerosis And The Aa.i Wear Leg Braces To Help With The Bilateral Drop Foot.life Is All Good And Refuse To Give In Or Up.

    The Lord Has Given Me Strength And I'm Very Blessed To Have A Very Good Team Of Drs And Great Family Support.my Kids Are A Awesome Help.

     
    Old 04-01-2008, 10:02 AM   #13
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    Re: Hoping someone can help

    Hey Duttin: I noticed in your last post you said, "If I went to a pain clinic they couldn't have treated my pain". I'm not sure what you mean. Is it that you feel that a Pain Management doc would not know how to treat your particular condition? If so, have you checked with any PM docs to see if any of them do know your condition or have treated other's who have it?

    I'm just curious. Thanks, cmpgirl

     
    Old 04-01-2008, 10:50 AM   #14
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    Re: Hoping someone can help

    Cmpgirl,

    I Should Of Clarified Myself, Here In Ohio,if You Are Under A Contract With A Pain Clinic,a Hospital Has To Have A Pain Clinic Drs. Permission To Administer Additional Pain Meds.or At Least At My Pain Clinic Thats The Way The Contract Reads.my Appointment With The Pain Clinic Isn't For A Few Weeks Yet.

    I Feel That My Neurologist Has Handled Everything Very Well So Far.

    I Plan On Going To The Pain Clinic And Seeing What The Dr Has To Say.

    My Biggest Fear About Going To A Pain Clinic Is Them Not Listening And Changing All My Meds That Are Working,especially My Spasmatic Meds.they Had Done That In The Past,this Is A Different Dr At The Same Clinic.

    Yes, This Dr Does Have A Patient With Aa, A Friend Of Mine.this Dr.beleives In Using Steroid Injections For Aa,but Its Not Recommended For Aa,through The Literature I Have Read.

    But Will Keep An Open Mind With The Pm Dr. My Neuro Said If I Don't Feel Comfortable With The Pm Dr. Then He'll Continue To Treat The Pain.

     
    Old 04-01-2008, 11:26 AM   #15
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    Re: Hoping someone can help

    Hey Duttin: My bad. I didn't realize you actually had already been to a pain clinic. I guess I read it wrong in your previous post. I have never had to sign a contract with my PM. I don't think they are required in NY, or just not by my doc. I do understand how they work, though. I have a relative who lives in another state and has a contract and I've learned a lot about them, here on the boards.

    Thanks for clarifying for me. Take care and I hope you are feeling better. cmpgirl

     
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