Susan, I am so sorry to hear all of this. I am sending gentle hugs and praying for relief and strength for you.
Josh, according to what I have read, and what my GP says, they are seldom acknowledged by anyone other than a neuorsurgeon, and even then, it is such a highly specialized field that even they may choose to dismiss them, meaning tarlov cysts, they are also called perineural cysts, but are the same thing, perhaps just further up the spine, as I understand it.
The unique thing about the tarlovs, is they are composed of spinal fluid leaking from a tear in the spinal sheath, that contains the spinal fluid. The pain and pressure can be felt throughout the body, even in places that may seem to have no connection.
I always contributed these occasional skull cracking headaches to seasonal allergies, but perhaps not!
Hope you can get some solid answers, much depends on the radiologist reading your MRIs! There is where the correct info begins!
I wish you well, my friend,
SK
Thank you all for your kindness and good wishes, it means a great deal to me. I go for 2 MRIs this Monday. They recommended I take pain killers so that I can lay flat for 2 series of MRIs, so my husband is driving me!
I can hardly wait! That said this will certainly be the easiest part of this, so I'd better not start complaining yet! ha!
Sending you prayers and Angels to get through these tests!
Good luck with your tests and hang in there. Take care.
Maria
Good luck with the mri. Would definately recommend extra pain relief on the day and for a few days afterwards. Also ask for help to return to sitting position and take it Very slowly! Lesson learnt after having an mri last month and being a bit too brave about sitting up afterwards.
I am so sorry about your pain and the suffering and hopeless feeling it brings. I will be praying that you will find help dealing with this. Take care!
prayers prayers and more prayers coming your way. I love how these drs all think we can just drop whatever it is our live has us doing and run off to have a procedure. I guess if money wasn't a problem maybe we could, but most of us with these disorders/diseases aren't lucky enough to have a endless suppy of cash to do some of the things they want us too. god bless, were here to listen, anytime
I haven't been on here very much recently and missed this.
I'm so very sorry Susan. At least Hopkins and St. Lukes are relatively close and your doctor gives you pain medication....prayers that you can get whatever you need and pronto!
Have you told the doctor about the filing problems? Maybe he can prescribe something else.
What a scary situation. Prayers and good thoughts for your strength, wisdom , perseverance and that you find the right medical professionals to help you through this very difficult time....leading to a joyful, positive outcome.
Hi SK
Just wanted to send u strength and courage and lots of hugs and support ! I wish i could help with your terrible pain… I feel for u but i hope they figure something else for you to get some kind of relief xoxo
Niki
Thanks everyone, MRIs complete, I know that will be the easiest part of it. So now I wait for the results to be sent to my GP, so I can get a copy to take to my Rheum on the 9th, and wait for an appt to one of the Neurosurgeons!
Every step forward is a good step. I hope everything moves swiftly forward. Just having you here is a positive. :)
Thanks dancermom, you bet! I'd love nothing better than to something more dynamic like go roller skating, white water rafting, or even do an extended shop til you literally drop the next time you make it back to MD! I'd like nothing better than to defy age, illness, and gravity! I'm ready, sister! I'm so much more fun well!
Sounds like a plan. :)
We are all so much more fun when we feel good. We have to remember that and cherish the times we are really who we want to be. Wish I could give you a hug. Take care and keep us informed. You are cared about for sure.
The latest...
I went to the Rheumatologist, with MRI reports in hand, past and present, along with the film, only to find out that even though I have tarlov cysts, which are a result of injury and/or illness, there is no nerve impingement yet. All of the pain and pressure is caused by the SI (sacroiliac joints). The pain in the middle lower back is referred pain from the SI joints, even though there is spinal stenosis, scoliosis, and DDD.
Having the results of the last 2 MRIs in hand allowed him to see the progression of the joint damage from the Psoriatic Arthritis, which is not only from being predisposed to autoimmune, but from having been rear ended in car accidents with my feet on break and clutch.
He told me not to take the Plaquinil, gave me samples of Otzela to take for 2 months, if this is not helpful then I'm on to Humira.
I am revisiting Lidoderm patches on my back, to allow me to lay down to sleep. The Sjogren's is on the back burner to the PsA.
Got the flu shot the following day, got the flu the next day!
GP agreed with Rheum.
Keep your fingers crossed!
Sounds like he might be able to help. Do you feel some relief? Why did he tell you to stop Plaquenil? How does that affect your spinal pain? Going to have to look up Otzelo.
Btw lidoderm patches help me when the pain gets to be too much.
I hope you have pain relief soon.
By the time the Plaquinil was back in stock at my mail in pharmacy, it was in the mail at the time of my appt. he told me not to start it. He felt the arthritis had progressed too much, and it needed a stronger med.
I threw up pain Meds in the parking lot until there was nothing Left in me,right before I saw him! Just getting to the point where I can eat again, still working on being able to lie down to sleep!
It’s been one thing after the other! I know we all go through these times, not just me. It helps to talk about it.
I had been on Enbrel for 2 years, it really did help the pain. Nothing ever gets rid of it though. The ‘pressure’ is by far the worst of the pain.
Those SI joints have a lot to answer for. I hope the Otzela does you some good, and if not that, the Humira. I wish every day that you wake up to a pain-free day, SK!