Dr Alberto Martinez-Arizala, Miami Project

[Princess "Leia"]

I have an appointment today at The Miami Project to Cure Paralysis, to see Dr. Alberto-Arizala, a pain-management specialist in SCI"s. Tethering of the cord and scaring has made life very complicated for me (to say the least). The pain and weakness is increasing and try as I may it seems to be taking over my life. Often, I do not recognize who I am because of it!

We will discuss all the options avaible to me. I am hoping there is something new I have not tried.

Will keep you posted.

Leia

[Princess "Leia"]

Ok, It is official, I am a walking quad and have never been told this before. Gosh, I hate labels. They bring with them all sorts of preconceived notions so I will ignore it because it won't change anything! Denial, maybe, coping mechanisim ok, I buy that. Hey, "What ever gets ya through the night, it's all right, it's all right."

I am now on Topamax in place of Neurontin, gradually starting and increasing the dosage. Neurontin side effects for myself were weight gain with each increased dosage and I was only up to 900 mg a day. At that rate I shudder to think of what the future was. It had taken me quite sometime to wean myself off of it, however, it did work on pain, tinglng and numbness.

Doctor M increased the dosage of Ultram. Me like a idiot was only taking one 50 mg pill a day and was totally miserable. He questioned this and said I could take up to four a day. I have always been concerned about the amount of meds I take but guess I have to accept this part of my life or feel like garbage. Still I will use with caution.

Am also back on Elavil at night but only 10 mg. On 25 mg, I discovered in the morning, I had problems focusing my eyes and I was told it is a side-effect. Elavil does work on my pain though and also seems to put me in a true state of REM (Shiny Happy People) sleep. I have discovered when I do not get a proper nights sleep I really feel rotten and the pain is all the worse the next day.

Surgery for my tethered cord, which is tethered from c2-c6 is not an option. I knew this anyway because it only sets you up for the same proecess all over, doesn't it?

By the way, I was at the University of Miami Spine Clinic, not the Miami Project. Sorry for any confusion. Dr Martinez is associated with both and was very patient, informative and also very kind as well. It was appreciated.

Hope this helps in some way,

Leia

[metronycguy]

ditto the 10 to 20 mg mg of elavil and the 4 x a day of ultram, for such a low dose of elavil the pain result is pretty amazing, especially in conjunction with a anti seizure.

[Princess "Leia"]

Well, after a week of 25 mgs of Topamax and waking up with fuzzing eyes, not much releif with symtoms but wanting to wait it out, I increased the dosage per the Docs orders to 50 MGS at night. Next two morning my eyes were about to pop out of my head...twitching and zinging. What a feeling! In addition the extra dosage increased the pain, numbness and tingling. Amazing what medication can do to you. No more for me.....

So it's Elival at night now and the Ultram in the day. No to going back on Neurontin because of weight gain. Oh yea, I noticed a decreased appetite while on Topamax......

Leia

[-Andrea-]

Careful w/the Ultram. I thought it was a miracle drug for many years, then realized it can cause severe stomach problems. And, my doctors are also based out of UM's Spine Clinic and UM/Jackson's Dept. of Anaesthesiology.

[Princess "Leia"]

Thanks so much for the warning Andrea. I have always been concerned about long term side effects of the medications I take, but was not aware of stomach problems from Ultram. Even after the Drs opinion of taking up to 4 pills a day I still try hard for one and when things get bad I will reach for a second dose. If I have very, bad day I may go for a third. It is sort of weird to plan a day in those terms but thats the way it goes. I also have discovered the pain is so much worse when the meds wear off, especially in the past when I was taking a variety of medication. This is another reason I have limited myself.

Leia

[-Andrea-]

Yes, your situation sounds familiar. I took 2 50mg Ultram for ~3 years (more or less) then, I began taking Vicodins in the AM. Over the holidays (-/+ 6 months) I began taking Percocet. I'm very scared about this because of the addictive nature and long-term side-effects. The DRs at Jackson tried to offer a Baclofen pump to me and said pain medication could be delivered thru this as well. Have you ever thought of that? For me, it was no good, but everything is different for everyone. Feel free to e-mail me if you have questions.
Best wishes ... it's awful, sometimes.

[alan]

Biggest problem with Percocet is the acetaminophen (tylenol) in it.

Alan

"Was it over when the Germans bombed Pearl Harbor?"

[Princess "Leia"]

Andrea,

We never discussed a pump. Perhaps at a later date this will be the next step. Pain medications eventually loose their effectiveness too. This will be a problem down the line.

Percocet and Vicoden are strong meds. Do they make you feel light headed?

Leia

[-Andrea-]

@ the pump: I had a trial shot of Baclofen administered straight into my spinal cord to see if I would be a cadidate for the Baclofen pump (at that time, I was having a hip contracture - now it's being controlled by oral medications) The medicine worked...too well. I was as limp as a noodle and the idea of having a hockey-puck sized apparatus under my ribcage was not appealing. Both because I am small-framed and since they would have put a pediatric puck in, it would be required for a refill every 3 weeks. No thanks.
It was another DR who suggested the pump to be used for administration of pain-relieving medication. I lead an active life and don't wish to see any Dr every 3 weeks!
I do worry a lot about the percocet and its effect on my liver. I also worry about potential LT effects it may have on my stomach. No, luckily, it does not make me light-headed or sleepy BUT - I am careful to follow what is ordered and while I'm on this, I do NOT touch alcohol. None. For the most part, it works well. I don't like the idea of pumping all the medicines into my blood, but I guess the alternative would be much worse.