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Regular Member

Date Joined Jul 2009
Total Posts : 278
   Posted 7/23/2009 12:24 PM (GMT -6)   
Hi Everyone,

I am new here and let me tell you a little of my story first...

I was born with a leg & foot deformity. As I started growing I developed scolosis. I have always had sever migraines and sever back & leg pain as well. Thru my younger years, I went to all sorts of specialists to figure out "whats wrong". Everyone just idea.

In 2005, I had my first MRI...
I was diagnosed with Tethered Spinal Cord Syndrome. This is apparently what caused the deformity in the womb to begin with.
I have been seeing my reg. Dr regarding the migraines & pain and he refered me to a Neuro.
The Neuro & my reg Dr dismissed the TSC and started me on specific migrain meds. (none of which work)

In April, I got such bad siatica pain that I couldnt move for 3 days. I went back to the Dr and he told me that I have to give it time and anti-inflamitories. (dont work) But I was getting 7 percocet a month so I had to use those instead.

It has now been 3 months & that specific pain is still there. I have gone to see a spine specialist and had another MRI. (I get the results today)

I guess my question is....I have been on SO many meds for ALL of my pain, I have found that only the percocet actually helps. I dont want to sound like a druggie to the Dr, so how do I approach this? There are good days & bad, but mostly bad, and I hate being in pain all the time.

Any advice? :icon_confused: <!--graemlin:confused-->

Veteran Member

Date Joined Nov 2008
Total Posts : 1037
   Posted 7/23/2009 2:14 PM (GMT -6)   
Welcome to the family... I want to make sure that I read this correctly...did u say that u were given 7 percocet a month?  That seems like you are being very "Undermedicated"  to say the least.  I think it might be time to start looking for a Pain Management Dr. in your area.  I know that pain dictates how we live our lives and you would have a better life if you got this pain under control...

 I hate Boats!!!!
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/15 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   


Regular Member

Date Joined Jul 2009
Total Posts : 278
   Posted 7/24/2009 7:57 AM (GMT -6)   
  I agree that I am under medicated.
Well, I went to get my MRI results.......not good.
I have a very, very LARGE "mass" in my spine that is pressing on the spinal cord at L5. This is what has been causing all the siatica like pain. My Spine Specialist has stated he is very concerned and this is way beyond him and the neurosurgen in my area. They have refered me to a neuro surgen in Seattle. He stated that I have to watch out for muscle weakness and blatter & bowel incontence, if that happens to go to the ER immediatly.
  I am very much worried, espically he dosent know exactly what it is......
  Any one else have something like this??
PS: He has now started me on Gabapentin
    (to try to block nerve pain)

Veteran Member

Date Joined Nov 2007
Total Posts : 6795
   Posted 7/24/2009 12:51 PM (GMT -6)   
Hi, Donna,
Welcome to the chronic pain forum. I'm so sorry for all you're dealing with but at least it seems you have an answer to what is causing the pain. Now it's getting the right doctor to fix it. I think it's good that your doctors were at least willing to admit it was over their head. There are people here who live in the Seattle area (I think) and maybe they know the resources, but a major teaching hospital might be a good place.

I didn't have a mass, just a mess of a spine, so I had a double fusion that didn't work. But the neurosurgeons at major hospitals can often do a lot of tricky procedures. I wonder, too, has anyone thought of the possibility of shrinking the mass with medications - even by injection? When you see the surgeon, I would go armed with a lot of questions and make sure you get them, answered as much as possible. Maybe take a family member or friend with you so there are two sets of ears. And you can always get a second opinion, but again you'd want it from a surgeon who deals with these types of things.

Do watch out for the things your doctors suggested. Hopefully, the mass won't press against any of the motor nerves or the nerves affecting your bladder and intestines. Do go to the ER if that happens.

I take gabapentin and I had to start slowly to build up, and now take 400mg, 4X/day. It definitely helps with the nerve symptoms in my feet, as if I'm late on a dose I sure know it. But at first I had some early side effects, most of which went away. Kind of makes you a little tired, and I had a little blurred vision but that didn't last. I think it does make me a little foggy, but every medication has its side effects.

There's a newer medication called lyrica which can be tried if the gabapentin doesn't help. It's supposed to have fewer side effects, but everyone is different with mediations and that's very important to remember. And lyrica is more expensive so some insurances don't cover it.

Welcome to the forum. Hope this helps a bit!


Regular Member

Date Joined Aug 2008
Total Posts : 326
   Posted 7/26/2009 12:11 AM (GMT -6)   

You mentioned being referred to a specialist in Seattle....are you close to the Seattle area? Or which major city? I'm down in Portland and have a couple of suggestions if you were down closer this way. If you would like any further information, just email me with the subject line of Healingwell so that I will recognize it's someone from here.

Hoping the best for you....
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