New Member - a lil more info - Dr. Wise please

[NCLizD]

My neuro has thrown his hands up ... will be going to Johns Hopkins in May and am going to pain management now. Dealing with syringomyelia, TM, tested positive for MS (o-bands) not dx with. In short form here are results from last mri's:
Cervical: mild degenerative character observed at C5-6 greater than C6-7, including mild non lateralizing posterior disk bulges and concurrent annular tears. Only C6-7 disk bulge may have minimally progressed.
Brain: Normal study. to note a stable single punctate hyperintensity in right subcortical white matter in fromtal lobe near the anterior portion of the external capsule. non specific and does not suggest demyelinating disease.
Thoracic spine: posterior disk bulding at C5-6 ( disgenerative ), no cord distortion or change from prior study. long linear spindle-shaped CSF canal and/or syrinx which extends from upper T3 down to T12. Maximum width of syrinx is 3 mm and appears at the upper T5 vertebral body level. The syrinx signal appears slightly discontinuous at T6 and then resumes at T8 with a thin continuation caudally as described above. Slight anterior spondylotic bulges at T7-8, 8-9, 9-10.

My neuro throws his hands up at me, refers me to Johns Hopkins and pain management but here I sit until May with legs that feel like cement slabs, same with feet...pain in arms/elbows/hands. Even when standing up after sitting for a few minutes, it is excruciating! and of course, back pain. Am on 15 mg. slow release morphine (2 in the a.m.), 1 after lunch, 1 at night...hydrocodone for breakthrough, nortriptyline to sleep. What the heck is wrong with me? why am I in so much pain and what is keeping them from an MS dx...not that I want one. The pain gets worse and worse each day and even sitting is becoming painful and then I don't want to get up because my feet feel asleep on top of the pain. I just feel like I'm carrying the weight of the world on me along with numbness/tingling. Please give your opinion..It would mean the world to me .... thank you!

[Wise Young]

My neuro has thrown his hands up ... will be going to Johns Hopkins in May and am going to pain management now. Dealing with syringomyelia, TM, tested positive for MS (o-bands) not dx with. In short form here are results from last mri's:
Cervical: mild degenerative character observed at C5-6 greater than C6-7, including mild non lateralizing posterior disk bulges and concurrent annular tears. Only C6-7 disk bulge may have minimally progressed.
Brain: Normal study. to note a stable single punctate hyperintensity in right subcortical white matter in fromtal lobe near the anterior portion of the external capsule. non specific and does not suggest demyelinating disease.
Thoracic spine: posterior disk bulding at C5-6 ( disgenerative ), no cord distortion or change from prior study. long linear spindle-shaped CSF canal and/or syrinx which extends from upper T3 down to T12. Maximum width of syrinx is 3 mm and appears at the upper T5 vertebral body level. The syrinx signal appears slightly discontinuous at T6 and then resumes at T8 with a thin continuation caudally as described above. Slight anterior spondylotic bulges at T7-8, 8-9, 9-10.

My neuro throws his hands up at me, refers me to Johns Hopkins and pain management but here I sit until May with legs that feel like cement slabs, same with feet...pain in arms/elbows/hands. Even when standing up after sitting for a few minutes, it is excruciating! and of course, back pain. Am on 15 mg. slow release morphine (2 in the a.m.), 1 after lunch, 1 at night...hydrocodone for breakthrough, nortriptyline to sleep. What the heck is wrong with me? why am I in so much pain and what is keeping them from an MS dx...not that I want one. The pain gets worse and worse each day and even sitting is becoming painful and then I don't want to get up because my feet feel asleep on top of the pain. I just feel like I'm carrying the weight of the world on me along with numbness/tingling. Please give your opinion..It would mean the world to me .... thank you!

Liz,

Let me enumerate your symptoms.

1. Standing is excruciating
2. Legs like cement slabs.
3. Arm/elbow/hand pain
4. Sitting is becoming painful
5. Feet feel asleep, numbness/tingling

Signs

1. C5/6 disk protruding
2. C6/7 mild degeneration
3. Small syrinx T3-T12, 3-mm width at T5
4. O-bands (CSF)
5. Slight spondylosis T8/9/10.

Negative

1. No plaques
2. No cord compression by disc
3. No tethering
4. No spinal stenosis
5. No enhanced signal

Some of the negatives are assumed because I imagine that they would be mentioned if there were present. None of the signs explain the symptoms. The absence of plaques and other signs strongly argue against MS. O-bands are non-specific. You don't have serious osteoarthritis or spondylosis that would explain the symptoms.

I am wondering more about the possibility of diabetes or hormonal causes.

Wise.

[MSWIFE1]

Liz - my heart just aches for you. My husband has MS and I don't wish that on anyone but the whole not knowing has to be awful. I hope you find the answers. -- Lisa

[NCLizD]

Wise...you don't think that all these symptoms have anything to do with syringomyelia and transverse myelitis??? I thought that was what was causing all this....I'm just wondering if this pain ever ends or if this is something I'm stuck with forever. My pain management doctor says yes i will deal with this for life and there is nothing i can do to prevent the syrinx from growing or to help it stop...I have been tested for diabetes and do not have it. Please give me your best shot!

[NCLizD]

MS Wife...thanks so much for your reply. I have not been diagnosed with MS...just a remote possibility I suppose...but the other two disorders are absolutely horrid. Thanks for your concern and hope to hear from you again

[Laners]

NCLizD,
I was diagnosed with syringomyelia in July09. I know what you are feeling and I would bet it is related to your syrinx. Many doctors say "the syrinx is too small to expain your symptoms" The people I have spoken to on http://www.smawareness.ca/ and www.asap.org have heard it a thousand times. I am so sorry this is happening to you. BUt I feel and understand your pain. I have syrinx c5-t11. 3.8mm at its widest. I just started embeda 20mg for the pain with oxycodone for breakthrough pain. I am also on lyrica. i USED to be on amitriptyline but it caused hypertention for me so it was stopped. I also can not sit or stand more than 30-40 min without being in severe pain. I have a burning pain in my neck, back and aching shoulders, arms and legs. I also get numb arms and legs. senf me an email if you ever want to talk.

[Wise Young]

Wise...you don't think that all these symptoms have anything to do with syringomyelia and transverse myelitis??? I thought that was what was causing all this....I'm just wondering if this pain ever ends or if this is something I'm stuck with forever. My pain management doctor says yes i will deal with this for life and there is nothing i can do to prevent the syrinx from growing or to help it stop...I have been tested for diabetes and do not have it. Please give me your best shot!

NCLizD, I am so sorry that I have been travelling and did not see your reply until just now. I think that your syringomyelia is just a manifestation of something else that is cause it to happen. In my opinion, a syrinx is a manifestation of blocked cerebrospinal fluid movement, shunting it into the central canal and enlarging it. It might be from meningitis or other inflammatory conditions that caused adhesions between the meninges and your brain/spinal cord surface, restricting where cerebrospinal fluid can flow.

Cerebrospinal fluid is made by the choroid plexus in the fourth ventricle. About half of the cerebrospinal fluid flow upward to the brain where it is absorbed by the meninges, the filmy subdural vascular arachnoid membrane that cover the brain and spinal cord. The other half flows down the spinal cord, mostly in the subarachnoid space. Injury, inflammation, infection, and many other causes can lead to syringomyelic cysts.

I will keep thinking about this.

Wise.

[NCLizD]

thanks

thank you all for responding. I have now been put on 120 mg slow release morphine each day. I'm not liking this at all...but I have to admit, I feel a little relief. Thank you Doc for thinking about this...means so much!

[Coleen]

NCLizD, I know constant pain is terrible. I'm not sure if I've just gotten used to it because it's 'stabilized' or my threshold has gone up. I hope you can find a solution that gives you relief & allows you to remain productive. Good luck!

[Laners]

Dr. young,
I see a pain specialist for my syrinx to treat my pain. WOuld you advise me to see someone else to find out what is causing the syrinx or the blockage in CSF?
thanks

[NCLizD]

for wise young

Let me update you a little bit more...ankle was swollen again yesterday afternoon along with the calf a little bit. Today, pain is about a "9" with the bottom of my killing me. I also am experiencing stinging in my right hand which I have never before. Does this sound like a flare up of TM or syringomyelia to you? My blood sugars are fine as is my blood pressure. Each day is getting worse and my pain management is saying she's gone as far as she can with morphine (slow release) which I am taking 120 mg a day. Thoughts on this please...and thoughts on meds...I have an appointment with her on Wednesday the 7th. Thank you so much. It's so nice to have someone to chat with. I'm a little scared because each day seems worse. Happy Easter to you and yours!

[prpleharly08]

Hi Liz,


I don't have any answers for you - but I do understand how frustrating it can be to feel the way you do and Dr's not sure on what could be causing it.

I don't have a syringomyelia or TM but I did have issues with my c5/6 and c6/7 discs. I had servere spinal cord compression which neurosurgeon resolved with an acdf in June 09. However I still have pain, burning, tingling, numbness,in my lower legs and arms (elbows into hands). Yesterday both of my ankles and calves were also swollen and hurt like all h**l. surgeon sent me to neuro to check for MS But neuro said no evidence on mri's to suspect MS. So he believes my spinal cord is damaged from the compression. I'm now also in pain mangement because other Dr's are not sure what could be causing this. I will need to speak to him about legs now swelling and also a tight banding feeling in my lower right leg (it feels like there's a blood pressure cuff on the leg).

I'm just wondering if your pain could be from the c5/7 discs even tho' it only shows mild on the mri's.

Just wanted to let you know your not alone out there and hope you find some answers soon

Liz

Also have a disc herniated at t6/7.

[Wise Young]

Let me update you a little bit more...ankle was swollen again yesterday afternoon along with the calf a little bit. Today, pain is about a "9" with the bottom of my killing me. I also am experiencing stinging in my right hand which I have never before. Does this sound like a flare up of TM or syringomyelia to you? My blood sugars are fine as is my blood pressure. Each day is getting worse and my pain management is saying she's gone as far as she can with morphine (slow release) which I am taking 120 mg a day. Thoughts on this please...and thoughts on meds...I have an appointment with her on Wednesday the 7th. Thank you so much. It's so nice to have someone to chat with. I'm a little scared because each day seems worse. Happy Easter to you and yours!

If you are not already doing so, talk to your doctor about adding acetaminophen (Tylenol). It is synergistic with morphine. Be careful not to exceed 3000 mg per day because it is toxic to the liver.

Wise.

[NCLizD]

reply to prpleharly08 & Wise

Prpleharly08 - let me know how that discussion goes on your next visit and yes, I have thought about the disc problem I have since the last mri in 09 said it had minimally progressed since 08..that's going to be something discussed.

Wise...thank you so much for your continued attention. I will ask pain management about tylenol on wednesday of this week. This pain is honestly getting worse and worse and I really need to continue working full time. I do know, however, there may come a time I will have to quit...but not looking down...looking up!! always positive

[NCLizD]

update

pain has moved into shoulders and in between shoulder blades...arms propped up...feet propped up and neck on heating pad. Missed work again today. Pain management on wednesday...what in the world is going on? I hurt so bad! Any medicine opinions??