It appears you have not yet Signed Up with our community. To Sign Up for free, please click here....



Arachnoiditis Message Board

  • i was so blessed but didnt know it

  • Post New Thread   Closed Thread
    Thread Tools Search this Thread
    Old 10-08-2012, 11:58 AM   #1
    gmak
    Senior Veteran
    (female)
     
    Join Date: Oct 2012
    Location: USA
    Posts: 2,648
    gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
    i was so blessed but didnt know it

    At age 26 my back was injured when a patient fell on me resulting in 4 lumbar lams with [email protected] L4-S1 & dural grafting. That neurosurgeon treated me for 17 years until he retired. Then i saw a PM/ anes. Many,many epi steroid injs later & such arrogance that left me with partially treated severe chronic pain, my gastro admitted me to hosp & 6 drs did work up & decided to send me to a PM&R dr that i saw for 12 yrs. He was caring & treated me @ 1 office. He put me on fentanyl patch, avinza, msir for breakthru. He established me @ the highest level of functioning that could be with my problems & i never had to feel drugged. 2 time- released meds was perfect for relieving the pain. He left & this began the downward spiral i am currently on. I saw a neurosurgeon, had MRI& he told me that i had adhesive arachnoiditis & nothing could be done. Seek pain mgmt. Saw 2 microinvasive neurosurgeons @ baylor & response:seek pain mgmt. But, they gave me no names! So, go back to gastro & he makes appt for me as personal friend. This guy(PM/anes) calls me a drug addict, tells me i am on my way ti the morgue, in the tunnel of death 6 times in 15 mins. He doesnt want to read MRI report or hear about my pain or 30 yr history! Horrible. Said he would wean me off fentanyl by end of 2012. Asked what about the pain? Answer " live with it" This is not possible as the pain is incompatible with being alive! Next day saw PM&R dr who agreed to treat me. But, only 1 long acting & 1 short acting opioid. This place requires urine drug screen everytime, every month. Due to AA i have trouble getting urine started so i had to self cath! Horrible. The drs travel around, want to do procedures(dangerous with AA)& if you need anything you have to be seen. Which means cram catheter. I dont feel cared for, & the neuropathic pain is now here with electric shocks down both legs, feet numb but have pain, and my back is vibrating or buzzing so hard that my teeth shake. Not one dr i had prior to my pm& r LEAVING Ever told me i had arachnoiditis! It has been on my records since 1988! MRI shows severe AA & a grossly patulous sac& tethered cord! My family wants me to see an expert on AA. Does anyone know a dr that can do surgery on tethered cord or that can help me? Anything you know about this or a dr, please let me know! I am floundering. And would be so thankful & appreciative of any response! P.s. i will never write this much ever again

     
    The following 3 users give hugs of support to: gmak
    ladylaura777 (10-20-2012),luck25 (10-09-2012),pooby (10-15-2012)
    Sponsors Lightbulb
       
    Old 10-08-2012, 09:55 PM   #2
    luck25
    Member
    (male)
     
    Join Date: Aug 2012
    Location: Utah
    Posts: 69
    luck25 HB Userluck25 HB User
    Re: i was so blessed but didnt know it

    That sounds horrible. I'm not sure what AA is, and I'm sure your pain is reeling. I'm sorry for that. I know how it is to deal with doctors. I hope you find the treatment you deserve. Good luck.

     
    Old 10-08-2012, 10:11 PM   #3
    gmak
    Senior Veteran
    (female)
     
    Join Date: Oct 2012
    Location: USA
    Posts: 2,648
    gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
    Re: i was so blessed but didnt know it

    Quote:
    Originally Posted by luck25 View Post
    That sounds horrible. I'm not sure what AA is, and I'm sure your pain is reeling. I'm sorry for that. I know how it is to deal with doctors. I hope you find the treatment you deserve. Good luck.
    Thank you for your concern! Aa-adhesive arachnoiditis is when your spinal nerves swell & scar tissue embeds the spinal cord and nerves into the membrane surrounding your spinal cord & brain. You are so kind to care. Losing my dr has been almost as bad as learning i have this. Take fentanyl patch & morphine but the nerve weirdness is scary. What ,may i ask, is causing your pain?

     
    Old 10-08-2012, 10:29 PM   #4
    luck25
    Member
    (male)
     
    Join Date: Aug 2012
    Location: Utah
    Posts: 69
    luck25 HB Userluck25 HB User
    Re: i was so blessed but didnt know it

    I have 3 bulging discs in my lumbar. I am going for spinal fusion on wednesday. It's been a bear dealing with docs that don't really understand. But I went from 5-6 perc a day to now 1 a day. And now I feel in control, but I can't do much. The pain etc. It sounds like your prognosis is Grimm considering it can't be fixed. Did I read it right? So u will need someone who will understand your issue. It's awesome your family is thr to help. Where would we be? It's good to talk w someone. Thanks.

    Last edited by luck25; 10-08-2012 at 10:51 PM.

     
    Old 10-08-2012, 10:43 PM   #5
    gmak
    Senior Veteran
    (female)
     
    Join Date: Oct 2012
    Location: USA
    Posts: 2,648
    gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
    Re: i was so blessed but didnt know it

    Quote:
    Originally Posted by luck25 View Post
    I have 3 bulging discs in my lumbar. I am going for spinal fusion on wednesday. It's been a bear dealing with docs that don't really understand. But I went from 5-6 perc a day to now 1 a day. And now I feel in control, but I can't do much. The pain etc. It sounds like your prognosis is Grimm considering it can't be fixed. Did I read it right? So u will need someone who will understand. It's awesome your family is thr to help. Where would we be?
    Right! Wouldnt want to be without family,but they have seen me suffer so long and its hard to accept that nothing can be done. I cant believe you took time to answer me when your surgery is Wed!! I wish you good luck and will pray, too. Dont worry, just get better. I had 4 back surgeries and they werent like # 9 or 10 pain. So, let us know as soon as you are able how it went. Take pain meds before it can get bad, dont overdo too fast and use the nurse call button as much as possible! Like a hotel room service! Lol

    Last edited by gmak; 10-08-2012 at 10:48 PM. Reason: misspelling

     
    The Following User Says Thank You to gmak For This Useful Post:
    luck25 (10-09-2012)
    Old 10-09-2012, 08:12 PM   #6
    teteri66
    Senior Veteran
    (female)
     
    Join Date: Nov 2010
    Location: USA
    Posts: 9,167
    teteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB Userteteri66 HB User
    Re: i was so blessed but didnt know it

    Look up Dr. Charles Burton in St. Paul, Minnesota. Are you familiar with the "Burton Report?" It has wonderful information on AA and lots of photos from surgical procedures showing what it looks like. Several years ago when I thought I might have AA, I emailed him. I thought I was emailing his medical office...it was a Sunday and I hoped to get a reply within a couple days. I heard back from him a couple hours later!! I was shocked. We proceeded to exchange a number of emails....

    I'm not sure how old he is, but he has to be a senior citizen from my calculations...but he still saw patients as of a couple years ago. I wasn't thinking you would go see him, but I would suggest you email him and ask him who in the Houston area might be able to help you....

    If you haven't read the Burton Report, find it online and go to the search page and type in arachnoiditis...and you will find pages of very informative information.

     
    Old 10-11-2012, 12:55 PM   #7
    gmak
    Senior Veteran
    (female)
     
    Join Date: Oct 2012
    Location: USA
    Posts: 2,648
    gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
    Re: i was so blessed but didnt know it

    A dr falci @ craig univ in colorado does do tethered cord surgery to help aa patients. But, all ive seen or read & been told is exactly what you said too risky. Doesnt it make you wonder why drs are recommending stimulators? This is full blown enter your dura back surgery! I appreciate your time so much. I certainly dont know anyone with aa personally and your caring means so much! I would like to know how you are doing as well. Maybe we could keep in touch and if there is ANYTHING i could ever do for you ii would be my privilege.

     
    Old 10-19-2012, 12:12 PM   #8
    Moldova
    Senior Veteran
    (female)
     
    Moldova's Avatar
     
    Join Date: Dec 2006
    Location: NYC
    Posts: 3,716
    Moldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB User
    Re: i was so blessed but didnt know it

    Hi all!
    I am sorry to hear about all your health issues and your pain. I wish I could help each of you, but unfortunately wish to get help myself.

    After my car accident I had 2 spinal fusions: 2006, 2007 multilevel lumbar area. And another surgery to remove BGS 11 month later. Never recovered; from fit, very active woman with demanding job I end up a permanent disabled, cane/walker/wheel chaired woman who lives under PM care and pain medication. After first surgery I ended up with drop foot, bowel and bladder dysfunction due to nerve damages, 30 minutes after my second surgery I developed heart failure and pneumonia which took me 3 month to get rid of.
    I had many serious surgeries in my life , but nothing like spinal surgery. The pain, complications, limitations, poor life quality is just couple things I can name to describe my life now.
    Arachnodities (AARC) is not curable or treatable condition, I was diagnosed with it 2 years after last surgery. This was a shock, nobody wants to hear that your health issues can't be helped and will bring you down to a wheel chair pretty soon.
    During all this time, like it wasn't enough, I was diagnosed first with MS and than with Lupus and RA. My RA is very advanced with "RA Lung and RA heart", every joint is damaged, cartridge, multiple muscle tears, torn tendons and ruptured ligaments. I had one surgery after another to "fix" all these damages and nobody even raise a question: what is going on? Maybe all these damages is due to some health issue? Nope, they continue operating and I continue having hope...
    3 month ago I had a CT scan (can't have MRI due to pacemaker) and discovered that I need another lumbar surgery and also 2 C-level surgeries. My RA Dr doesn't agree with me going for more surgery stating that due to advance RA and Lupus I may not heal and have more complications.

    I have epidurals here and there, knowing it will either not help or help for a short time. Now we are talking about SCS, but so far other health issues prevent me from implanting it.

    Years of seeing many doctors taught me something: I have to be my own Dr and have to stand up for myself when needed. I finally was able to get a great team of doctors who really care and work with each other to help me. Cardio, PM, Spinal ortho, Neurologist, GP although some of them in a different state (NYC), they all communicate to get information from each other and decide what to do. I trust them 100% and this is a part of my well being. I like the fact that no matter what this is, they involve me in their decision making. They ask me how do I feel about treatments they have in mind. They dont feel intimidated by my research and questions I have for them when I have an app.

    Life goes on, still happy to get up in the morning to see the sun or rain...
    To enjoy my family and friends. Still have my saying: "Could be worse".
    Still no complains or Why Me? stuff.

    Hugs to all of you
    Best wishes, Moldova

     
    Old 10-19-2012, 07:23 PM   #9
    gmak
    Senior Veteran
    (female)
     
    Join Date: Oct 2012
    Location: USA
    Posts: 2,648
    gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
    Re: i was so blessed but didnt know it

    You are an inspiration to mez, you took your precious time for me and believe me i dont take lightly. Thank you. I can say one thing i have never been depressed. But i just was thrown for a loop when i found out that i had aa & then what it is, then the drs i counted on . .gone!

    Thank God for you and teteri & many others. You are a survivor and i could ask you a million questions right now, but i may need to ask one someday. Would that be okay? Thanks for taking time for me, gmak

    Last edited by moderator2; 10-19-2012 at 07:47 PM.

     
    Old 10-22-2012, 10:23 AM   #10
    Moldova
    Senior Veteran
    (female)
     
    Moldova's Avatar
     
    Join Date: Dec 2006
    Location: NYC
    Posts: 3,716
    Moldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB UserMoldova HB User
    Re: i was so blessed but didnt know it

    Dearest Gmak,
    Don't you ever hesitate to ask as many questions as you wish. After all, we all here not only to share our own experiences, but also to help others, to let people know what we know and learned. Please, do at any time you wish. Often, I can't get here as fast as I wish, when I am really bad, I don't leave my bed, but I check my messages later and will always answer all your questions as soon as I can.

    Thank you for your kind words. You are very strong person too, many of us don't even know how strong we are and how well we handle unpleasant surprises life gives us.

    I always use my say during the day, especially when I am bad: "Could be worse", even when I feel it can't get any worse, I still say this to myself.
    And I know this is the truth. Due to ordeal with my son, we had to go every 6 month to Sloan for CT scans. What I saw there, can destroy every mother's heart. Nothing in this world can be worse than to see pale, lifeless kids, teens hooked to chemo therapy IV... 8 month old baby holding milk bottle in one hand and his other arm hooked to IV. I was sick for month after seeing all this. Each time we would leave, I felt so blessed despite all our problems.
    So remembering this, I can't cry over my own issues. I am thankful for every day I got, for every minute of laughter... This is why I don't complain much and just live my life in a moment. Like everyone else I was making plans and worrying what happens 10 years from now. Not anymore. To short, to pressures. Right?

    All the best to all!
    Moldova

     
    The Following User Says Thank You to Moldova For This Useful Post:
    gmak (10-27-2012)
    Old 10-22-2012, 03:04 PM   #11
    gmak
    Senior Veteran
    (female)
     
    Join Date: Oct 2012
    Location: USA
    Posts: 2,648
    gmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB Usergmak HB User
    Unhappy Re: i was so blessed but didnt know it

    [QUOTE=Moldova;5076625]Dearest Gmak,
    Don't you ever hesitate to ask as many questions as you wish. After all, we all here not only to share our own experiences, but also to help others, to let people know what we know and learned. Please, do at any time you wish. Often, I can't get here as fast as I wish, when I am really bad, I don't leave my bed, but I check my messages later and will always answer all your questions as soon as I can.

    Thank you for your kind words. You are very strong person too, many of us don't even know how strong we are and how well we handle unpleasant surprises life gives us.

    I always use my say during the day, especially when I am bad: "Could be worse", even when I feel it can't get any worse, I still say this to myself.
    And I know this is the truth. Due to ordeal with my son, we had to go every 6 month to Sloan for CT scans. What I saw there, can destroy every mother's heart. Nothing in this world can be worse than to see pale, lifeless kids, teens hooked to chemo therapy IV... 8 month old baby holding milk bottle in one hand and his other arm hooked to IV. I was sick for month after seeing all this. Each time we would leave, I felt so blessed despite all our problems.
    So remembering this, I can't cry over my own issues. I am thankful for every day I got, for every minute of laughter... This is why I don't complain much and just live my life in a moment. Like everyone else I was making plans and worrying what happens 10 years from now. Not anymore. To short, to pressures. Right?
    YES! Life is too short, but it seems long when pain sooo bad all day &cant even sleep @ night. But, i know what you mean about the kids! I am very familiar with the med center in houstoni.e. the underground tunnel, which hospitals have best food etc. Everytime i cut thru childrens hospital i see what you were talking about,many, many times over 18 yrs for me & when i took my kids there. Oh, the poor babies & their parents! There is no pain worse than something being wrong with your child! I thank God everyday for my loved ones well being! I think they wish that we were better,too. So, when we have happy times as a family & i can be there it is great! Question: Is there a group of people thst have an aa group? Or a pain group? Or back problem group? Like when i read rules it talked about groups & how you could find them,but i cant figure it out. Also, i'm so grateful to talk to some else that likes to see flowers,humming birds, butterflies& a new day! Grace, that's what i call it. When i feel ok enough to get dressed & fix supper, a small miracle to me. But, many just dont even see. Glad to know you,, i think you are beautiful person. Thank you for your support, i know you struggle so much. I pray for you.Thanks you, :gmak

    Last edited by gmak; 10-22-2012 at 03:11 PM. Reason: unable to edit

     
    Old 02-09-2013, 08:30 PM   #12
    shahila
    Senior Member
    (female)
     
    Join Date: Dec 2012
    Posts: 227
    shahila HB Usershahila HB Usershahila HB Usershahila HB Usershahila HB User
    Re: i was so blessed but didnt know it

    Quote:
    Originally Posted by gmak View Post
    At age 26 my back was injured when a patient fell on me resulting in 4 lumbar lams with [email protected] L4-S1 & dural grafting. That neurosurgeon treated me for 17 years until he retired. Then i saw a PM/ anes. Many,many epi steroid injs later & such arrogance that left me with partially treated severe chronic pain, my gastro admitted me to hosp & 6 drs did work up & decided to send me to a PM&R dr that i saw for 12 yrs. He was caring & treated me @ 1 office. He put me on fentanyl patch, avinza, msir for breakthru. He established me @ the highest level of functioning that could be with my problems & i never had to feel drugged. 2 time- released meds was perfect for relieving the pain. He left & this began the downward spiral i am currently on. I saw a neurosurgeon, had MRI& he told me that i had adhesive arachnoiditis & nothing could be done. Seek pain mgmt. Saw 2 microinvasive neurosurgeons @ baylor & response:seek pain mgmt. But, they gave me no names! So, go back to gastro & he makes appt for me as personal friend. This guy(PM/anes) calls me a drug addict, tells me i am on my way ti the morgue, in the tunnel of death 6 times in 15 mins. He doesnt want to read MRI report or hear about my pain or 30 yr history! Horrible. Said he would wean me off fentanyl by end of 2012. Asked what about the pain? Answer " live with it" This is not possible as the pain is incompatible with being alive! Next day saw PM&R dr who agreed to treat me. But, only 1 long acting & 1 short acting opioid. This place requires urine drug screen everytime, every month. Due to AA i have trouble getting urine started so i had to self cath! Horrible. The drs travel around, want to do procedures(dangerous with AA)& if you need anything you have to be seen. Which means cram catheter. I dont feel cared for, & the neuropathic pain is now here with electric shocks down both legs, feet numb but have pain, and my back is vibrating or buzzing so hard that my teeth shake. Not one dr i had prior to my pm& r LEAVING Ever told me i had arachnoiditis! It has been on my records since 1988! MRI shows severe AA & a grossly patulous sac& tethered cord! My family wants me to see an expert on AA. Does anyone know a dr that can do surgery on tethered cord or that can help me? Anything you know about this or a dr, please let me know! I am floundering. And would be so thankful & appreciative of any response! P.s. i will never write this much ever again
    dear gmak, i read your story and i didn't know that you have been through all of this .. i am speechless ..

    I don't know what to say .. i am not knowledgeable about medical things,, but I think about you. You are going through so much, yet i see from your comments that you are very positive. :x:x

     
    Closed Thread




    Thread Tools Search this Thread
    Search this Thread:

    Advanced Search

    Posting Rules
    You may not post new threads
    You may not post replies
    You may not post attachments
    You may not edit your posts

    BB code is On
    Smilies are On
    [IMG] code is Off
    HTML code is Off
    Trackbacks are Off
    Pingbacks are Off
    Refbacks are Off




    Sign Up Today!

    Ask our community of thousands of members your health questions, and learn from others experiences. Join the conversation!

    I want my free account

    All times are GMT -7. The time now is 05:08 AM.





    2019 MH Sub I, LLC dba Internet Brands. All rights reserved.
    Do not copy or redistribute in any form!