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Arachnoiditis: Looking to talk with others
I just got diagnosed with arachnoiditis. The radiologist found it on my MRI. I have had 7 steroid injections and I fear that they have caused this chronic situation. My back is worse than it ever was.
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I tried finding that on the Mayo website and couldn't get anything. They questioned my spelling. I did see that Cleveland Clinic treats it.
You are only 31? DAMN!! Help will come; just please don't give up. I mentioned that the Cleveland Clinic might be helpful. I got that info online.
In my case it was the Mayo that gave this disease when a herniated disc repair went bad as then punctured the arachnoid membrain and cause a major spine leak. I had a bulge the size of a grapefruit at the base of from the leak and took three operations to fix. Now I have Arachnoiditis which they saying I need a stimulator only because I asked for a MRI of my lumbar area with contrast to discover this terrible incurable disease. No help from any doctors there and all they said it won't nessesary get worst. I wrong they are will my increase in pain the rest my life. If gets where I am bed ridden I got my pills ready for good by sleep.
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1 Reaction@donfeld
Are you saying you have some pills in reserve for taking your life? Sorry if I am misunderstanding, just want to clarify.
Donald, do you have adequate care? Do you have someone who helps you and acts as your caregiver? Just trying to get a handle on your current situation. It's obvious you have a condition that does not allow you to do everything for yourself, correct? Are you at home or are you in a nursing home, just wondering, if you don't mind talking about it. Thanks, Hank
What is that notice and site with all those medications listed on it here for?! 😳 Personally and professionally, I would NEVER trust such a site.
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1 Reaction@wisco50 If you mean the one from this morning with all the blue pills, we deleted the posts. They were from a spammer.
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4 ReactionsI didn’t notice a color, just a very long list of names. Two different identical posts. Spam makes sense, thx!
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2 ReactionsIt seems to me that the effectiveness of a pain pump is very complex...from the medicines used to the dosing and for what reason for the pain. My husband had one implanted there at Mayo for cancer pain, but it was a complete failure. Even the procedure to put it in left him in poor condition. It is a decision that I regret terribly. That said, some folks swear by them. I am not sure why our experience was so poor. The Mayo pain clinic is pretty awesome, but for my husband's needs, they were not able to help.
@donfeld You are looking to connect with members that are treating arachnoiditis with a pain pump. I added your question to the Brain & Nervous System group, along with the Chronic Pain group. I did this so you could connect with members in both groups like @leigho55 @feckert52 @jelizabeth @wisco50 @rsj @wsh66 that have previously discussed this topic.
Below I have also linked two previous discussions that may be of interest to you. I encourage you to scroll through the posts.
- Pain pump, I have one, how about one for you? ://connect.mayoclinic.org/discussion/pain-pump-i-have-one-how-about-one-for-you/
- arachnoiditis https://connect.mayoclinic.org/discussion/arachnoiditis-2/
May I ask how long you have been diagnosed with arachnoiditis?
<p>Has anyone been treating Arachnoiditis with a pain pump?<br />Also, comments needed for how helpful is pain pumps?</p>