It's time to ask for some support!

General
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My back pain has progressed to the point of being intolerable. Like a house is sitting on my low back and my bones are ready to explode. There has been unbelievable hip pain that goes with this, and my ability to walk, stand, sit, lay is rapidly declining. The nerve pain has become so prominent just recently I feel like I'm on fire! These can cause incontinence and UTIs, remember I was taken off Enbrel for recurrent UTIs!

Upon taking another look at my MRI reports from a year and a half ago see perineural and tarlov spinal cysts mentioned, one is even considered large. So I start to research to find our just what they are. Both are really tarlov cysts from my understanding.

These are actually formed at the spinal nerve root, filled with spinal fluid that has leaked out through 3 layers of sheath which encompasses the spinal cord. They are so rare most med schools barely mention them, most neurosurgeons know enough to run at the mention of them.

There seem to be 7 maybe 8 neurosurgeons who either do one of two procedures, operate or aspirate and glue. NOw the thing is, even if the they suck out the spinal fluid, these cysts always come back, usually not in the same place, but it all starts over again. There is also one in Milan, Paris and somewhere in Brazil. Keep in mind I can barely ride 10 minutes to my GP!

The neuropurgeon who operates, has a practice in TX, KS and the Isle of Cyprus, he claims to removed the cysts and be able to repair the spinal cord tears, but my husband and I figure if he is one of 3 in the world who do this, the co-pay alone would be at a cost beyond all of our worldly assets!

Lucky for me, two who aspirate and glue are at Hopkins and St Lukes, and I'm about 70 miles west of both.

So as Doc is writing up the order for a new MRI, I say but the rest of my spine is not that bad, right? And here is when he gets very quiet and even nicer than usual, and says yes Susan, it is that bad, I worry about the place where your spine has 'disconnected'. This is the clicking sound you tell me about, this ALONE can be causing all of this severe pain and loss of function, the spinal stenosis throughout the cervical and lumbar spine continue to worsen, but these spinal root cysts are not helping!

Yes, I know there is always hope, but I just feel so totally screwed right now! This man has been my Dr for decades, and I know him, he reminded me that he called me with these results a year and a half ago at 9:30 at night and told me I needed to get to a neurosurgeon! He prescribed me a different kind of morphine, even stronger and told me to tell my husband to take it down right away!

http://www.tarlovcystfoundation.org/tarlov_cyst_information0.aspx

BTW, you will note that the causes are thought to be severe trauma, difficult pregnancies, epidurals and SJOGREN"S SYNDROME! Yes, it mentions connective tissue diseases, but I could not believe it was listed by name! Of course every single one applies to me, but before you freak out, realize these spinal nerve root cysts are incredibly rare!

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Surrounding you and your family with love and prayers for strength and healing.

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You poor thing. I am praying you can endure this and get some relief. Please keep us updated on your progress.

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Oh my gosh. If this were me I would be feeling much like you.
I am so sorry that you are in so much pain. The decision you have to make is obviously in favor of surgery but how do you choose where and how do you find funding? What a dilemma!
Does your state have a catastrophic medical fund? They sometimes have this for kids but maybe adults. Are there are grants that you can apply for? Perhaps through some foundation that funds research for what you have? Or how about go Fund Me where perfect strangers help people in need.
It is shocking to learn that Sjogren’s is listed as a cause. You have my support and prayers. Wish there was more that I could do.

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I printed off everything I could find on the net on this, handed it to my Doctor, he looked through it the entire time I was there, especially the Doctors, and that was a very short list, believe me, and he likes Dr Sudhir at John Hopikins who does the aspiration and glue. I honestly don't think I could even make the trip to TX!

Next step is the MRI, get measured sizes on these monsters! One is actually on my mid back, one on the lower back and one on the Sacrum. I think that is the one causing me to really suffer, but if I do one, I want them ALL done!

Now the pharmacy won't fill the pain meds, say they will lose over $200.00 to fill it. How does that happen when we are to pay 25% of the cost, now this script will have to be hand carried back to the Dr and a new one carried back to the pharmacy and the pharmacist says I will have to do this monthly now because of the laws changing! Why is EVERYTHING so difficult for the ill and ailing?

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Oh my Lord, SK. As if you aren't dealing with enough with the illness, you have to deal with the pharmacy circus. I will send you some big healing prayers. I hope you can get that MRI done soon so they know exactly what is going on so, hopefully, they can have a plan for getting rid of them.

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Thanks everyone for such kindness. We all fall apart sometimes, it's my turn, I guess.

My body has actually been producing tears, quite a few the last couple of weeks, especially after the Dr appt, I had a good break down in the car. Time to just get it out so I can pick myself back up, tough up and get through whatever is needed!

I found out how wonderful my Pharmacist is today, she was very helpful as far as what to replace this med with. It is just as well this happens as the prescribed med was a time release type and I cannot tolerate the excellerant they use, so it happened for the best, she gave me recommendations for something better, I hope!

Time to get out of this chair, and try to find a comfortable way to lay on the couch and veg out!

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I’m sorry Susan. Anything that can go wrong is going wrong, it seems. Can someone exorcise Murphy from Susan’s house please? Huge gentle hugs and positive hugs for you and hubby.

Yes, the laws are changing. It is making it near impossible for the sick and hurting to get pain meds. All the new laws go into effect in October. Now simple meds like Vicodin and Norco will now need a triplicate prescription. Which just blows me away. Even Tramadol now needs a triplicate. My PCP stopped giving out any triplicates, so I have to get them at my pain doc, and he is a bear to get pain meds from.

The War On Drugs has yet again hurt the legitimate person. But, these newest laws are here they say, because there are too many overdoses. I personally think it is just another way to limit us.

I pray that you find relief.

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Poor thing. So much pain and then not being able to get the drugs you need. These new regulations from our "socialized medical plans" are not fair to the suffering. But that is another story.

Perhaps with enough pain meds you will be able to bear the MRI and then go for a consultation in Texas. If you or a friend has a large SUV you could lie down for the trip.

Sending you warm thoughts ...You sound so very brave!

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Susan,

Have you heard of Nucynta? It's a non-addictive narcotic which may be more effective than Morphene.

Sending you prayers and lots of Angels!

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I am so sorry to hear about this and I am sending hugs and my prayers, to live with that sort of pain must seem all consuming, I can"t even imagine

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OH sweet Susan,

I 'm so sorry. I know some of what you are going through. When my first rheumy saw my spinal MRI's about 7 years ago, she started to cry. And that was seven long years ago....things have not gotten better since then. I'm not trying to
"one over you" ---just saying that I know what insufferable pain is like. ONe thing that has helped me...with the "burning acid" pain is 4 mg of Medrol (a steroid)...I was prescribed it for a flare of my PsA/RA and to my joy the first night I took it, the intolerable pain that I'd been struggling with for weeks, went away!!! I can only assume it was the steroids. Something to consider trying...maybe it will help you enough to get the 70 mile trip under your belt. I am praying for you. It's 3:30 AM ....maybe God woke me up because you need prayer. I will pray for you now.....God bless you and give you strength.....and reduce your pain.

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Yes, I know Fascina, and here is what I think about that. These pain management Doctors, at least the 5 I've been to, put the high pressure sales team to work on you for their procedures, as these 'pay the bills' better than writing the prescription.

Now you know that I am all for the good Doctors, I believe we are lost without good Doctors and research teams. I believe that we all need to find pain relief where we can, but the further I stay from invasive procedures, the better I am.

That said, I realize I am going to have to take action with these cysts, one way or the other, but I have reached the point that the less they touch me, the better I am!

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So sorry you are going through all of this. We always seem to say "hang in there"..............but that isn't always enough. You are fortunate to be near Hopkins, if you decide to pursue this option.

Wish you the very best. I pray for all my SS buddies every night. Will say an extra prayer for you.

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No, I have not tried Nucynta, Maureen, but I have heard good things about it from my friends on the Fibro site.

Is this primarily for nerve pain, or will it also help with bone pain, as bone pain is certainly the worst for me!

BTW, just wanted to add that even though the AMA does not consider that narcotics, and perhaps not even Nucynta will help Fibromyalgia, what I know from the years I spent there as a moderator is that the Fibro group has members with RA, OA, PsA, and every other type of autoimmune like EDS, Lupus, Myositis, and there are also catastrophic injuries there, failed back syndrome... Plus if fibro is a stress response, it is more than likely that something else caused it and most likely that is what this class of drugs is used to treat.

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I agree. I have a bunch of areas that need medical attention....but there has to come a time when you draw the line and say "no more"....The last time I went in to see my GP he told me, "Cynthia, go home and rest...and try to avoid more doctors, There is really not much more anyone can do for you except take your money." And I thought about that. Where DO you draw the line? how much pain is acceptable? And ultimately, when something is potentially life threatening ---do you treat it? " I know that may anger some people ...it may not be in line with some of your philosophies....I think definitely the topic needs to be bathed in prayer to gain as much wisdom as possible I've encountered a number of issues that in the past months when I would have said, they need a doctor's attention. But then I thought, "Do they really?" And I didn't make an appointment. And so far, I'm still here.

I do go to the eye doctor. I have glaucoma and really want to maintain my sight for as long as possible. and I go to my rheumy and pain doc....(pulmonology/GP; eye doc and pain doc) I see each of them every three or four months. In the past I had one or two docs A WEEK. And I finally said NO MORE....I cover my basic needs and leave it at that.. But I have begun to put Dr D's theory to test.

But there do come times when we cannot bear the pain....and then we have to make some hard decisions .>>I'm praying for you Susan --that you would encounter the right doctors with the right answers and have the funds and the strength to take care of your needs.

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My dear friend, I am hoping for a speedy and positive resolution to these health troubles, which you have tried to overcome for so long. You do so much for others -- I hope your doctors realize what a very special person they are treating.

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Hi Susan, my heart goes out to you. Stay strong. You're in my thoughts and prayers go out to you and your family...

Maria

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Susan,

There's not much that I can add to what all others have said, but to echo that you are in my thoughts and prayers. You are always the first one to support others on this site and you deserve all the support and help you can get in return.

Keep us posted.

Liz

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SK,

I'm so sorry to hear about your back and nerve pain and the cysts! There's just so many things that can happen with this illness.

I saw a Dr. about a lump on my lower back about 10 yrs ago. He told me it was a fatty tumor (I think I have at least 2 now). I have some back pain there. I think it's causing at least some of my pain, though my rumy doesn't think so. My pain isn't even on the same planet as yours. But your situation makes me wonder if it isn't a cyst. I haven't had any MRI's of that area. He just felt it.

I wish I knew a way to help you. I'm sending you positive energy for guidance and healing!

Josh