Thoughts

[cathy5841]

Hi. this past week I have started to have horrible pain in my left leg. It starts just behind my knee and spreads up and down. It is dibilatating at times. I will scream when it hits like that. There is always some pain in  the leg since this started. The muscle its self I think is sore from the pain. It is a burning pain but it also feels like it is cramping up with muscle spasms.   I have had back n neck problems for years. I had neck surgery 5 years ago and fixed 4 levels. After that surgery the surgeon said even though you need it we can not but anymore screws into your bones, the bones are too weak to hold them. The screws in the neck have backed out but so far nothing has been done because it's not causing major problems yet.  Lower back surgery 2 years ago was done and shattered disc fragments laying on nerves were removed. now the pain in my leg has started and I cant bear it. I have an appt with my PM on Tuesday and I'm trying to hold on til then.

The following is the results of my MRI: The interpretation reads: moderate to severe left para central disc protrusion co facts the left ventral surface of the cord, but there is CSF space dorsal to the cord with spinal stenosis. Neural for amen patent. Moderate facet aryhropathy. There is disc desiccation and narrowing t6-7, T7-8, T8-9, and T9-10noted.
Suspect 5cm long syringohydromyelia. There is quite a bit of motion artifact on this study and a dedicated contrast study of the thoracic cord is recommended for further evaluation.  
Cannot exclude 1mm syringohydromyelia over a 5cm defame t behind T7 to T 9. Diffuse scattered anterolateral osteophytes. Diffuse anterolateral osteophytes. Schmori node invades the inferior T8 end plate.  

Just wondering if anyone had any ideas.  I am I. PM and even with the meds I am on the pain will take my breath away.  Thanks

[philnoir]

Good luck -- I hope it works well for you.

[cathy5841]

Saw the surgeon today, and I am happy  to report Surgery is scheduled June 11th.   That was the earliest  opening!  It will be done with laser and a small incision!!   I can't wait.

[Tuckamore]

I'm so so sorry for your unrelenting pain. I do get it!

I'm hopeful the surgeon will have good options for you and that all will be a success! I assume your insurance finally approved the surgical consult. Yay!

Wishing you the best,
~Tuck

[cathy5841]

I have an appt with the surgeon on June 1st. I really can't wait. I have been n pain for years but, this pain has just about done me in. Nothing helps escape it, even for a little while. And I use a 75mg fent patch with oxycodone for b/t pain.  This surgery really can't happen fast enough for me.  

[Tuckamore]

Hi Cathy,

I am tardy to this thread  but I've been reading it with great interest .... until I read your last post. Now I'm reading it with great anger!!

I am so very sorry for your extreme pain. You sound miserable. My heart goes out to you.

You are fortunate to have a kind, competent PMP. You aren't so fortunate to have an insurance that is pure business, out to make money regardless of the effect on their patients. Oh don't get me started!! Insurances are a business. Business can't remain in business unless they make money. Their goal is to save every dollar they can. Sadly that's a fact and that's reality. You have every right to be furious. It makes me angry enough to spit tacks. Can you tell?

Okay, I got that out of my system.... for awhile. Sorry!!

I am hopeful that your medical provider will be able to talk some sense into your insurance representative. I admit that some can be rational and do "get it." There are "buzz words" that you medical provider can use with the insurance company if she's skilled and use to dealing with reluctant to pay companies. If she gets no where you most certainly have the right to call them also. "Insurance Commission" is a word they don't like to here. There are others, if you need them please let me know..

I wish you the very best and will watch for your updates. Best of luck my dear.

Take Care,
~Tuck

[cathy5841]

Had my MRI last week and Dr called the next day to say the very last disc was ruptured now and a portion of it was laying on a nerve causing the pain. She said you need surgery to remove the bone fragment but insurance requires us to do steroid injections first.  Had my first one the next day which was Thursday of last week and I had no relief by Tuesday so she is trying to convince the insurance company to let me have surgery. Really???   I pay over $1000 (yes not a typo one thousand) a month for insurance and I have to beg to use it and hurt like heck while they decide.  I am just blown away that my Dr wants to send me to the surgeon I have used for other surgeries and this company can say no.  I am furious!

[remar]

I'm so glad to hear you have good pain Dr. It's getting harder and harder to get in to pain management so if you can do that on top of having a really good pain Dr then you're very lucky.
Chronic pain is awful. Most of us here deal with it every single day so we can relate to what you're going through.
I really hope you can get the MRI soon. I also hope you check out the forum Philnoir sent you. He is very knowledgeable about pain and pain treatments. He has not only helped countless people on this forum but he's always been there to help me too and for that, I am so grateful.
Do keep us up to date on how you're doing. Please know that we're always here for you.  

[philnoir]

I'm very happy to hear that your pain doctor is well trained and competent.

Pain management is an advanced practice of anesthesiology.

Board certified pain docs from the best pain management programs in medical schools are part of the school of anesthesiology. In general, their certification is from the American Board of Pain Management and they carry the credentials DABPM after their MD.

Still, treatment of syringomyelia may require surgery, depending on the extent and location of the fluid sac, and neurosurgery is beyond best pain doctors training.

Conservative treatment is control of pain, which I'm sure your pain doctor understands. If I were you, I'd avoid surgery for as long as possible -- hopefully, a lifetime.

There's another forum here on medhelp where you can read posts from others with syringomyelia/syrinx issues, run by a knowledgeable woman named Selma. That forum is:

http://www.medhelp.org/forums/Spinal-Cord-Conditions-Disorders/show/1227

Of course, you are always welcome here for support and whatever advice we can offer.

Best wishes

[cathy5841]

Thanks for both of your inputs. My PM Dr is great. She know I don't sell re abuse my meds so she's always willing to Treat the pain with the necessary meds. She's also 5 times board certified in the area of management. She is also an antitheiologists.  She's been my PM for 9 years.  
Remar I am waiting for the MRI place to get insurance approval.  I'll let you know when I get some news.

[philnoir]

I'm glad to see that you're getting some help, Cathy.

The knee pain symptom and your report of it spreading "up and down" hints at sciatic, which is a pain syndrome associated with lumbar spine disease (although not necessarily.)

The thoracic findings in the MRI report are confounding, meaning they may not be contributing to your knee pain, but are still significant, and probably causing a degree of central pain that can exacerbate any peripheral pain, for instance tha pain in the leg, without being uniquely identified as a cause.

Most physicians have little training in syringomelia/chiari formations, so please consult with a neurology specialist (not a neurosurgeon).

Your prognosis depends on both the size and location of these fluid sacs in the cord and can interfere with the down-regulation of pain, making your experience of pain even worse. But, they can also be asymptomatic.

My advice -- don't fret. Wait for the lumbar MRI results, ask questions of your doctor, including those regarding a neurology consult.

Also, be adamant about getting adequate pain relief. Pain can and does change the nervous system so that pain becomes the norm. Don't let that happen.

Best wishes.

[remar]

Thank goodness you're getting some answers. That's great news. I'm sorry to hear you may have another herniated disc but if you do, then you will be dealing with a Dr you really like. Let's hope you get that appointment very soon. When will you be getting the MRI?

[cathy5841]

Hi remark and thanks for checking on me. I did go to the PM today and she did a test, can't think of the name but also order an MRI with contrast. She said from the looks of things I have another herniated disc and a piece of that bone is laying on a nerve and punching it down. She's getting an appt with the surgeon that did my last surgery.  I am super glad, I really liked him. Was not crazy about the one that did my first surgery. I will keep you posted as these apptments progress.

[remar]

Today is your appointment, right? I really hope your PM Dr can do something to help with your pain. Will you get back to us when you get a chance to let us know how everything went?

[cathy5841]

Thanks for getting back to me.  Remar, even being completely still the episode can start. Once it starts nothing I do lessens it. It's liking lighting vibe tating through me leg!  I am truly exhausted from the pain.  At times once it starts it will at times take my breath away.
Fntn, thanks for your input. It did help to know this new issues is not in my head. As I do feel like with this pain I am loosing my mind. :(.  Hopefully philnoir, will weigh in with an opinion so ill at least have something to go on.
I can honestly say I can not wait to see the dr on Tirsday!

[fntn]

You're dealing with quite a bit for just one person. Not sure if your aware of it but the syringohydromyelia is very uncommon and can cause you a great deal of pain and trouble. Whether or not it's this, or your previous issues/fixes, that is the source of your current pain needs to be resolved with your doctor's insight. I hope you have a good one, they're not easy to find and you need a really good one.

And it seems one of your schmorl nodes has degraded very deeply into a vertebrae body. Schmorl's nodes are common not when they start causing inflammation deep within the vertebrae, this can cause alot of pain (but not numbness, etc).

Hopefully Philnior can comment. I am not as knowledgable in this area yet. My spine is a mess and I'm learning but your dealing with quite alot of complex issues.

[remar]

I'm so sorry you're going through this kind of pain. It very well could be your back causing the pain. I wish I could tell you what your results mean but I'm not sure.
Does the pain come when you stand, sit, move different ways? Does laying down or sitting help at all?
I really wish I could be of more help. We have very knowledgeable and caring members here who will hopefully read your post and tell you about your results.
I'm here to listen and support you. I'm glad you have an appointment with your pain Dr Tuesday. You may want to call tomorrow morning to be put on the cancellation list. If someone cancels tomorrow you might be able to get in a day sooner.