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Arachnoiditis with nerve root clumping

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Unread 02-08-2013, 12:36 PM   #1
Jacjie Stone
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Angry Arachnoiditis with nerve root clumping

I've had five surgeries on my back - one cervical fusion with success but four on lumbar spine w/many injections, procedures, emg's, mri's, ct scan, myelogram, fusion, revision. After much research I learn that this condition which is hideous with pain has no cure, no surgery, pretty much "man made" from too many invasive procedures. I've lost my federal government job, have to move to a less expensive city, go on welfare, etc. all because of the pain and not being able to go to work. Can't find adequate pain management as in this D.C. area they're all paranoid about their precious licenses, drug seekers and disregarding true pain patients with backup tests and reports, films, etc. The doctors crippled me and now they don't want to provide pain relief and have destroyed my life. Caution: doctor's will tell you side effects of various procedures, shots, surgery, mri, myelogram, etc like bleeding and infection and NEVER mention the worst side effect of Arachnoiditis; several individuals I know of have committed suicide due to the pain. British websites are very comprehensive and tell of the "dirty little secret" in this country as they get MUCH more money from these many various procedures and reluctant to provide oral meds when nothing else works. It's important to become educated as very few people are aware of this condition.
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Unread 02-08-2013, 02:03 PM   #2
baldeagle9
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My heart goes out to you, and I can relate to some of your frustrations. I too am limited by my insurance, and went from a career to being at the mercy of government assistance. I have experienced severe nerve pain from what is suspected to be Trigeminal Neuralgia, but nothing on the scale you have endured. I never heard of the condition you face, but I hope and pray breakthroughs in research and treatment prevail soon. Keep on trying to find help for your condition and pain--I hope that help comes your way soon.
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Unread 02-08-2013, 10:51 PM   #3
snowlily
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Quote:
Originally Posted by Jacjie Stone View Post
I've had five surgeries on my back - one cervical fusion with success but four on lumbar spine w/many injections, procedures, emg's, mri's, ct scan, myelogram, fusion, revision. After much research I learn that this condition which is hideous with pain has no cure, no surgery, pretty much "man made" from too many invasive procedures. I've lost my federal government job, have to move to a less expensive city, go on welfare, etc. all because of the pain and not being able to go to work. Can't find adequate pain management as in this D.C. area they're all paranoid about their precious licenses, drug seekers and disregarding true pain patients with backup tests and reports, films, etc. The doctors crippled me and now they don't want to provide pain relief and have destroyed my life. Caution: doctor's will tell you side effects of various procedures, shots, surgery, mri, myelogram, etc like bleeding and infection and NEVER mention the worst side effect of Arachnoiditis; several individuals I know of have committed suicide due to the pain. British websites are very comprehensive and tell of the "dirty little secret" in this country as they get MUCH more money from these many various procedures and reluctant to provide oral meds when nothing else works. It's important to become educated as very few people are aware of this condition.

Dear jaki, I have adhesive arachnoiditis. I had four lumbar surgeries, csf leaks with grafts, epidural inj's too numerous to count & a myelogram with pantopaque. So, its impossible to know which or what or all of these things caused it. Luckily, i dont have to be under the coersive tactics of pain mgmt/anes anymore that hold your medicine hostage until costly procedures agreed to that make arach worse because i see a PM&R dr & have for 12 years. I was told i had arach in 2012 & it was on all my MRI's since 1988! I completely understand your pain, frustration & confusion when we cant even find a dr who knows what arachnoiditis is. Ive researched alot & am glad to find you.
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Unread 02-09-2013, 07:18 AM   #4
Leesa
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What you say is true. NO doctors inform their patients of the possibility of arachnoiditis -- at least none that I'm aware of. I've had 3 surgeries, and had every single thing a pain clinic can do, DONE - plus I've been thru 3 pain clinics so obviously I've had all these things done several times and not ONCE did any doctor mention arachnoiditis to me.

I'm sure there are thousands of people "out there" who have it, who are not being treated properly and who are in agony just like you. It's UNACCEPTABLE. If these drug addicts can get drugs, then legitimate pain patients ought to be able to get medication LEGALLY and in the PROPER DOSAGE too!! This just makes me so darn mad! I'm tired of doctors around here anyway, saying they're afraid of the DEA so they won't prescribe pain medications. WHAT? What happened to the idea of treating the patient and "first do no harm?" By NOT giving pain patients medications, they ARE harming the patient!

I could go on and on about this -- but I won't. We all feel the same way.

I'm so sorry you're having to suffer this terrible disease. My heart goes out to you -- I hope and pray you find someone who has compassion and a HEART who will treat you the way you deserve to be treated! God bless you and please keep us posted, will you? We DO care! Hugs, Lee
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recovering alcoholic, sober since 7-29-93;severe depression; 2 open spinal surgeries; severe sciatica since 1986; epidurals; trigger points; myelograms; Rhizotomy; Racz procedure; spinal cord stimulator implant (and later removal); morphine pump trial (didn't work);now inoperable; lumpectomy; radiation; breast cancer survivor; heart attack; fibromyalgia; on disability.



Often the test of courage is not to die, but to live..
.................................................. ...............Orestes
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Unread 02-09-2013, 02:17 PM   #5
snowlily
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Dear jacjie, In regards to what you were saying about arachnoiditis being unknown i dif a little experimrnt at a party. My niece, a nurse anesthetist, her boyfriend, an anesthesiologist & her boss a pm/anes dr were asked by me "Is there any terminology , disease, syndrome etc that you have never heard of & if so you could easily find out through med books, journals etc right? They all said yes, i said arachnoiditis & none had heard of it & grabbed their phones to look it up. They were amazed that they had never been taught about it or even heard of it. So i suggested that they ask their collegues the same question. Results were not one knew without lookihg it up. Thought that you might want to know this. Even a pain mgmt/anes didnt know. How much have you read about arach & how can you just live with no pain medicine? Inhumane. Bless you & have you tried a physiatrist or PM&R dr?
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Unread 02-10-2013, 09:34 AM   #6
thinkitdoit7
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Default Arachnoiditis

What I find interesting is that my PM doctor continues to prescribe injections, yearly myelograms etc in the areas where I have arachnoiditis and when I ask the doctor if these invasive procedures could aggravate the arachnoiditis I get blank looks and they say no.

My medical records read arachnoiditis from 1994 until about 2008. At some point my medical records were changed to " nerve clumping seen at......and the statement - "probable arachnoiditis".

I know you can't go from arachnoiditis to - well maybe it is, maybe it isn't. From what I have read arachnoiditis does not get better. I could be wrong though????

I strongly believe the doctors that perform the myelograms and the injections etc see this issue - arachnoiditis - and they know it could have been from something they did - so instead of saying - you have arachnoidits....they weenie out and dodge the bullet in fear of a lawsuit.

It seems like this one hospital in particular will not make a definitive arachnoiditis diagnosis when it was definite for so many years. And it appears to have gotten worse over the years based on the number of levels involved.

Why don't doctors want to discuss arachnoiditis with the patient? And why do they treat it like it is nothing?

Years ago I was in a different state and they took arachnoiditis seriously - I was treated like I had a good reason to be in pain because of arachnoiditis (keep in mind this is my perception of the situation of course).

Jacjie Stone - do whatever you have to do to get some relief.

I don't recommend illicit drugs, heck I have never gone that route but I can tell you I think about it everyday. And I know that when I get even a little relief from pain meds - my entire mental state changes back to hope. So I would say do whatever you need to do - take care of yourself.

However, suicide is never the way to go - never.

We all get it - how incredibly difficult life is with irretractable, severe pain on a daily basis that does not get better. We believe you and all of us would do whatever we could to make your day better if we could - because we all know how a little relief goes a long way.

I can say this from experience. I know what is it like to be in that kind of pain for many many years - I have been in the state of mind where I didn't think I could live one more day in this kind of pain with no pain relief - yet this day I would make it through, then the next.

When I stopped thinking "I can't do this any longer" and started to live each moment, one at a time, not expecting so much from myself, forgetting what was behind me and not measuring my life based on everyone else's life - I was able to move forward.

I still live each day like that.....I know what it is like to reach the 10 out of 10 on the pain scale each day and not have relief. For me it involves uncontrolled screaming at any movement and even breathing causes that much pain, I vomit, I rock back and forth and in this 10 state of pain I cannot even cry. This is a daily occurence for me. Prayer and meditation are my lifelines.

After years of living like this - I know that my pain does not cause death - and I continue to learn new lessons each day in coping, compassion, love and kindness due to intense suffering.

Please take a step back and take control of your pain - do not let it take over your life. I know everyone here on this forum can help you to make it through. You are an incredible gift to all of us....thank you for bringing these issues to light.

Leesa - I would appreciate your take on arachnoiditis and doctor's reluctance to print out a definitive diagnosis.

Kelli
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Unread 02-10-2013, 11:13 AM   #7
snowlily
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Quote:
Originally Posted by thinkitdoit7 View Post
What I find interesting is that my PM doctor continues to prescribe injections, yearly myelograms etc in the areas where I have arachnoiditis and when I ask the doctor if these invasive procedures could aggravate the arachnoiditis I get blank looks and they say no.
My medical records read arachnoiditis from 1994 until about 2008. At some point my medical records were changed to " nerve clumping seen at......and the statement - "probable arachnoiditis".
I know you can't go from arachnoiditis to - well maybe it is, maybe it isn't. From what I have read arachnoiditis does not get better. I could be wrong though????
I strongly believe the doctors that perform the myelograms and the injections etc see this issue - arachnoiditis - and they know it could have been from something they did - so instead of saying - you have arachnoidits....they weenie out and dodge the bullet in fear of a lawsuit.
It seems like this one hospital in particular will not make a definitive arachnoiditis diagnosis when it was definite for so many years. And it appears to have gotten worse over the years based on the number of levels involved.
Why don't doctors want to discuss arachnoiditis with the patient? And why do they treat it like it is nothing?
Years ago I was in a different state and they took arachnoiditis seriously - I was treated like I had a good reason to be in pain because of arachnoiditis (keep in mind this is my perception of the situation of course).
Jacjie Stone - do whatever you have to do to get some relief.
I don't recommend illicit drugs, heck I have never gone that route but I can tell you I think about it everyday. And I know that when I get even a little relief from pain meds - my entire mental state changes back to hope. So I would sy do whatever you need to do - take care of yourself.
However, suicide is never the way to go - never.
We all get it - how incredibly difficult life is with irretractable, severe pain on a daily basis that does not get better. We believe you and all of us would do whatever we could to make your day better if we could - because we all know how a little relief goes a long way.
I can say this from experience. I know what is it like to be in that kind of pain for many many years - I have been in the state of mind where I didn't think I could live one more day in this kind of pain with no pain relief - yet this day I would make it through, then the next.
When I stopped thinking "I can't do this any longer" and started to live each moment, one at a time, not expecting so much from myself, forgetting what was behind me and not measuring my life based on everyone else's life - I was able to move forward.
I still live each day like that.....I know what it is like to reach the 10 out of 10 on the pain scale each day and not have relief. For me it involves uncontrolled screaming at any movement and even breathing causes that much pain, I vomit, I rock back and forth and in this 10 state of pain I cannot even cry. This is a daily occurence for me. Prayer and meditation are my lifelines.
After years of living like this - I know that my pain does not cause death - and I continue to learn new lessons each day in coping, compassion, love and kindness due to intense suffering.
Please take a step back and take control of your pain - do not let it take over your life. I know everyone here on this forum can help you to make it through. You are an incredible gift to all of us....thank you for bringing these issues to light.
Leesa - I would appreciate your take on arachnoiditis and doctor's reluctance to print out a definitive diagnosis.
Kelli
My dr that ive seen for 12 years doesnt write arach as my diagnosis, never mentioned it to me but my familt wanted me to see a neuro surgeon again in case they could do some surgery, i did, had MRI & he told me i had adhesive arachnoiditis. The day i brought MRI disc & report to my dr he said omce that day only that he didnt tell me because of insurance coverage & he didnt want me to know how bleak my future would be & he has never acknowledged it again. However, when i saw a pm when my dr had a family emergency for 2 months this pm/anes acted like he knew what arach was but proceeded monthly to push epidural steroids & threatened to hold pain meds unless i agreed, i ran back to my dr & he saw me right away b/c those interventions can make us so much worse. Havent you noticed that you are worse? Over time it has happened anyway & perhaps that is what you notice just like me. Pain like you describe can cause strokes, heart attacks have you read The Intractable Pain Handbook by Dr Forest Tennant?.
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Unread 02-10-2013, 11:23 AM   #8
snowlily
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Sorry i forgot to ask,, leesa i saw that the pain pump failed with you. Would you mind telling me about it? Thanks!
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Unread 02-10-2013, 03:53 PM   #9
Leesa
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Hi Snowlily ~

Well,, it didn't really "fail me". What happened is I had the SCS, and because I was too small for it, it tried to work itself out of me! So they had to remove the whole thing, leads and all. But then the idiots had me try the pump (which is BIGGER than the SCS!!! The pump took away ALL my pain, and I was delighted, but they didn't tell me until after the trial that it was TOO BIG for me. So I couldn't have it. I was so disappointed!!!

So folks -- you have to be a LITTLE meaty for both the SCS and the pain pump. I didn't have enough 'fat content' (which is what they said) and that's why the SCS worked it's way out. (ugh)

Hugs, Lee
__________________
recovering alcoholic, sober since 7-29-93;severe depression; 2 open spinal surgeries; severe sciatica since 1986; epidurals; trigger points; myelograms; Rhizotomy; Racz procedure; spinal cord stimulator implant (and later removal); morphine pump trial (didn't work);now inoperable; lumpectomy; radiation; breast cancer survivor; heart attack; fibromyalgia; on disability.



Often the test of courage is not to die, but to live..
.................................................. ...............Orestes
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Unread 02-10-2013, 06:15 PM   #10
ginnie
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I am so sorry you have such pain. I think if I were that bad, I would troop right to the hospital and tell them to lock me up until I got some help. This isn't fair to you. Doctors are afraid of their licences. It is happening all over this country, and overseas. I weaned off morphine, and have to admit, it isn't a joyride with what pain I still have. However when I was taking it, it did work. I wish I had some words to help you. I do have empathy for those of us in critical pain. Don't give up, search for the help. Maybe even post where you are located, and some of our members may know a good pain specialist. Also there is a doctor called a physiatrist. They specialize in pain, and also treat at a cellular level. You will be in my prayers. ginnie
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