Before the IV I was back up to 2 to 3 Oxycodone a day. I was also not able to walk anymore at all. The afternoon after the first treatment spasticity in my legs was extreme. I couldn’t hold or pick myself up. After that night , I was able to stand and walk a little bit.
Now after my treatments are finished on Thursday, I have had no more oxycodone since the first day. Periphery pain is merely an annoyance, and that is with all the edema caused by steroid also. I have much better motor control trunk control everything. I start IVIG on Monday. But I’m wondering if we need to find out what is being pinched where it’s being pinched and want to get it fixed.
I also have stopped having spasims in the legs all together.
Saturday rolled around and I feel worse than ever. Especially the Dizzy feeling. The last few days have been great and then all the sudden it’s going downhill really fast. I’m hoping the IVIG does some more good days, but if this is the case we need to get in there and figure out what is really getting pinched up and fix it.
Sunday, horrible again. I hope I have the AG does some more help for the time being , but we need to get in there and fix it. The dizziness is overwhelming as well as the electric shock feeling. Also back on Oxy.
Well, let’s see…
Right hand comes and goes ALOT. One morning I can feel it fine, it’s just a bit tingly. Later that evening, my thumb especially is 100% numb and I’ve lost some control of it. Index finger also somewhat. Sometimes whole hand. Sometimes ulnar nerve only… The fact that it comes and goes so easily and so often is a clue I think.
I can feel this all around my face also now. Face, forehead, cheeks, etc. all feel ‘off’. I love Dana, my Physical Therapist. But my Occupational Therapists have gone unheard of for over a week now. I don’t know if they refuse to leave a message on the answering service cause MOST of the time, I’m not around to answer the phones, on a call for work, or in a meeting. And if it’s Sunday, I don’t answer the phone accept for family or people I recognize. Frustration beyond measure.
As for walking, can’t anymore. Lost the legs entirely now. Leaning against something, SOMETIMES, barely but…that’s it.
Surgery gave me strength in my hand back,
However, since then I now have lack of control in the hand. Hands, legs, etc. It seems, the Neurologist said, that my brain doesn’t know where my hands are for example and it is over-correcting. So going nose to finger for example, I go back and forth a ton instead of in a strait line.
And it’s getting worse. I wounder how long until I’m in a Stephen Hawking-like state…
I’ve stopped taking Ampyra temporarily to see if that has any affect.
I got home yesterday from surgery. Some parts of me are better, some parts seem somewhat worse. Pain in my feet was so much worse, now isn’t so bad actually, but weekness in my right leg comes and goes a ton. This morning can’t move it. Yesterday picked it up alone, no hands.
Right hand is a lot stronger but tingly pain remains, though seems somewhat diminished.
Neck still hurts a little bit.
Well, the ‘surgery’ is over and now I’m in hospital rehab. They are trying to see if I can get stronger I think.
I am quite a bit stronger in the hands then before the surgery, but the legs still suck. I do not think they will improve but…
Tomorrow is the 5th day after surgery. Surgical swelling should have maxed out within 3-5 days so if it is some swelling affecting me, it would be going down at this point. I have 7 days in here so, I’m going to miss the kid’s 3rd birthdays. Not happy about that. I miss my boys.
Well, I ended up doing the fusion.
I remember getting here around 09:15 Friday morning, I remember getting ready, setup to go and being taken to the operating room #1 in the North Austin Medical Center. I remember three big guys transfering me to the operating table and then NOTHING, instantly. I woke up around 22:00 Friday night, very out of it. But I was also awake most of last night.
Lots of pain, catheters in and out and in and out. This afternoon I stopped taking pain meds Norco and Dilaudid at 10:00. By choice. Staied off till 21:00 when I finally got a true pee! WEE!!
They think I’ll be here for a few days for rehab. I could leave as early as tomorrow (unlikely), monday (possibly) or even Tuesday or later (more possibly).
But right now I’m drugged up and going to sleep so, night!
Well, the time has come. I’m getting cut on Friday. We were going to do a Laminectomy but it has been changed to a Fusion. Wee…
In this case though, I agree. I did a new MRI Monday and it was significantly worse then the one from this summer. Going downhill so fast, and recent neck pain, the front attack was coming one way or the other. I just wish cervical disk replacements were more of an option.
Finally, they are at least going to TRY to fix something…
So, to summarize, over the last year I’ve gone downhill like a locomotive off a cliff. Nearly vegetative. New MRIs show nothing with MS. But they do show more extreme pressures on the spine.Which leaves me with two options.
1) Spinal Fusion
I can do the traditional course of getting my spine fused together over 3 vertebra. This would be removing the two worst disks and fusing the spine together.
- Faster recovery.
- One night or even outpatient surgery.
- Tiny hole in the front of the neck for the operation
- This will encure problems in the long run of affecting the disks to either side of the fusion. 5-10 years down the road, more fusion.
- At least for the initial, no movement change left or right, just up and down ~ 10% loss.
This means exactly what it seems… Remove the Lamina. These are the bony protrusions on the back of the spinal chord. They protect the spine from the rear, etc.
- There should be no ‘domino’ effect with the near vertebra.
- Retain full motion of the neck
- If it was out of pocket, this is a lot cheaper…
- Much longer recovery. They have to cut through and move muscle to get to the spine and it takes a long time for that to repair/recover.
- More pain due to the above
- Much more obvious and larger scar on the back of the neck.
- If there was pain at the joint (not so much for me) this wouldn’t fix it.
- 3-5 days in the hospital plus 3-6 month recovery and physical therapy.
The hope is that I get this surgery, one or the other, and it releases pressure on my spine and I can move again, perhaps even walk. But we know it will have SOME effect.
I use a neck device that inflates to raise my head up. I sleep with it. Sometimes I wake up and I can feel my hands fine and move, etc. for a few minutes…
And both neurologists and neurosurgeons said that MS and compression on the spine severely magnify each other. So while the compression might not be extreme, nor the MS, one can make the other seem so.
The surgeon had my idea though, let’s just fix one thing and see where it goes. Worst case, I have pain from surgery and nothing is any better for it. Best case, I’m able to run and play again.
Which surgery do you think I’m in favor of in this case?
My right hand has been steadily getting worse. I’ve started to dip into what is left over of my Oxycodone pills. I might have to start all of that up again. Going to be hard to do though when I can’t get out to the doctors.
Ampyra may or may not be helping. Last time I stopped it I couldn’t move at all. But being on it I can barely move at all. The fact that I sit all day doesn’t help I’m sure.
I got a new wheelchair. Same one actually just size tweaked. It’s an inch thinner seat and 4″ thinner overall. It’s also an inch taller which now I regret cause I have a taller seat pad also so I have to get a thinner seat pad.
I also got the smart drive power wheel assist module. Mixed on it. It vibrates a bit and the outdoor mode keeps getting me hurt. Needs another way to stop other then the button and/or an easier to hit button. I slam down on it and it doesn’t register. It has ‘wrecked’ me a few times already including one header off a high curb which really hurt.
I think, at least for people like me, a better button might be a stick. Push it in any direction for a button ‘hit’ so all I have to do is slap the stick. And it would only have to be say 1/2″ or 1″ tall, nothing huge. But something I can feel.