Hi and welcome to the Spinal Cord C/D forum.
I did reply to this same post in the Chiari Malformation forum...please see my reply there....I do indicate since u have a syrinx (known as Syringomyelia) that could be part of ur issues and further testing will help determine how to move forward with treatment once u have a clear idea what else is going on.
Hearing only part of your story is heartbreaking. Anyone who has undergone multiple abdominal surgeries will have pain symptoms for a long time, and can possibly develop a chronic pain syndrome. Symptomatic treatment of pain is important, which a good pain doctor will recognize.
No one can diagnose your condition here. While an MRI might provide clues to a diagnostician, it does not express anyone's complete 360-degree clinical picture. Proper medical diagnosis of any new condition requires more information than you can supply here, including an in-depth history and physical examination based on your complaints. Even then, diagnosis may be difficult.
I know you have vaild questions, but they should be asked of your caregivers. Please write down all your questions, no matter how simple they may seem to you, and bring your list to your appointments. Always bring pen and paper -- people who have specific knowledge of their illness and treatments improve their chance of successful outcomes.
And you are the expert on your condition. Your doctor(s) need to know what you know, especially when you present with a "difficult case."
I wish you the very best medicine has to offer in your painful and intimidating journey, along with the comfort of community here in this forum.
Sorry I haven't been back on for a bit.. pain bad and been really frustrated trying to jump thru all of the correct hoops. Playing waiting games w insurance company to get an abdominal mri and a lumbar mri showing all spinal content. It's been over a week and talked to insurance and they said another 48 hours! So I'm just barely existing! Told nurse today if mri doesn't go thru n if they can't keep me even 20% more comfortable then I'm close to just tellin doc to admit me and then we can do whatever needs to be done quickly cuz these games and the hoops you have to jump thru to get anywhere is a joke!
But in my down time I did come across an old ray report that I was never told about! Shows scoliosis n some other stuff. Ill update more w that tomorrow.. but it just throws another iron in the fire as to what exactly is doing what or is it all causing the other to become worse.. this isn't life.. it's barely an existence right now.. and that's no fair to my babies!! Less than a week now until my consult w pain management doc.. read up on him as much as possible. Is there a place on here that u can ask about docs? Thanks for taking time for me...
Thank you for taking the time to respond. Sorry it's been a bad few.. just now back on here. Found out some more scary things too on old ray report.. so we are probably going to be dealing with a complicated case.. good times right.. Ill be back on tomorrow and explain what I found. Any insite would be helpful.
I really don't have any caregivers on my case yet. Started being run by my observations doc cuz she's one that did the surgeries...see pain mgmt Monday the 12th. And I'm sure after looking at the big picture he will want me to see spine specialists and Neuro. I see why I started just dealing w back on my own and pushing thru it for several years..had my babies..but youngest is two and still just now getting back looked at again...partly cuz I don't jump thru hoops well if I'm not getting results. All its been so far is a nightmare!
My new pm doc is gonna hate me when he's sees me and my folder with different tests and results..and notebook with questions..how I'm feeling.. etc! Hope he is patient and not all accusatory like one that saw me to rule out shingles...lol..I know shingles right.. but that PA was not too cool.. oh well..
When I was going to Drs and they wanted to see old MRI's I found that there were some DX's I was never told about as well....funny how they decide what is significant and what is not.....sigh....
Good luck....hope u have answers soon
What I meant by caregivers are the doctors who are treating you.
Good luck Monday -- I hope you discover a new pain doc who is skilled, experienced, and has empathy for the pain you are experiencing.
Almost every symptom told by patients on this forum. More I read, more I see no Dr. has been as thorough, looking at all they should in order to possibly help before I am completely confined to bed, which I pretty much am now. Pain is too severe. When trying to walk, my legs do go out from under me. I've hit my head, broken arm, had other things happen trying to protect myself. Do u know of a doctor in the field, in Oregon where I live, who could help me and be more thorough than any doctors I've seen. I say Or., because my insurance ( medicare & Medicaid) from being on disability for so long, and no other insurance. Please help if u can. Linda
Hi Linda, I do not know of a Dr in ur area....and the only one I know of that knows about Syringomyelia is in the WA area....u may want to contact a Dr that is out of area that will consult with ur Drs there so u can get treated by the Drs there or appeal to go out of state to find a Dr able to help...
the website NIH.gov has free pamphlets on syringomyelia. I have found bringing these to doctors appointments really helps the doctor understand whats going on. Its much easier than trying to explain the problem over and over to new doctors. And no one ever understand.
There are Drs that know Syringomyelia well and they tend to be Chiari specialists...if you need help in locating one let me know.
Chiari and Syringomyelia go hand in hand as far as conditions go.....along with a couple of others...so, the Drs for Chiari are well informed.