Dystonia Diary

This is what it's like to have cervical dystonia - the good, the bad, and the ugly. Actually, there's nothing good about it.

Wednesday, August 23, 2006

More Botox

Got more Botox Tuesday (8/22). The shots didn't hurt quite as much as before, which is good because I had 15 shots. I wasn't as sore as last time, either. Just the usual neck and shoulder pain. Now I just wait to see how well it'll work, and if I'll have any problems with dry-mouth and swallowing. Hopefully these shots will last at least 4 months like the last ones.

Monday, August 21, 2006

Info from my other blog from 2005

Continued from my previous post...

More Workers Comp Leave, and still waiting for approval for a neurological second opinion and more physical therapy. I'm still in so much pain I can hardly stand it.

Finally got approval for neuro 2nd opinion, and maybe more physical therapy in Spring!

Been having "tingly feet", so I called Dr to report it. Nothing can be done since it's not related to my Torticollis, but I though the neuro may want to know.
The Tennessee branch of ins co will talk to me, while the local branch won't. And more Workers Comp leave.

Feb 05
Neuro appointment. A waste of time.

Neuro test appointment. Another waste of time.

Confirmed appointment with Pain Management specialist Dr, who knows how to treat dystonia! Workers Comp leave continues.

Saw above Dr.

First Botox shots

More phys therapy.

More Botox.

More Botox.

Last phys therapy. Didn't help much.

More Botox.

Finally back to work!

Last Botox shots. 35 total.

My condition was declared "permanent and stationary" by Ortho Dr, and I was released to Pain Manacement Dr for further treatment. He also gave me a "permanent restriction - no cashiering". If I operate a cash register, the repetitive motion involved in looking at the register, then the merchandise, then the bagging area, all makes my dystonia worse. It also prevents me from getting a good paying job in retail. Oh well.

Info from my other blog from 2004

I'm thinking of deleting my original blog since I rarely post to it anymore. Since I have some info there that I don't want to lose, I'm transfering some info from there to here.

Sometime in Feb. 2004, I started the process for additional treatment through Workers Comp. The whole time, my neck pain, stiffness, and spasms are getting worse.

Change in managers. The one who was there when I developed dystonia is gone (the assistant mgr at that time is still there), and a "returning" manager is back ("K").

Temporary ass't mgr today.

Asked "K" to demote me to cashier sometime between this post date and the next post date.

New mgr ("V"). Same ass't mgr. Still waiting for Workers Comp med evaluation. Regular ass't mgr came back sometime before this.

Got med evaluation app't set up fo 1 1/2 months from this date.

Problems between a former co-worker and 2 current is causing me major stress! It's not helping my neck.

Shorter work week!

A 3-day workweek.

I'm officially a part-timer.

Got my med evaluation. I'm entitled to an MRI and further treatment.

Applied for citizenship with Nova Roma 6/7/04. Accepted by Gens Martiana 6/8/04. Citizenship app accepted 6/11/04.

Medical report for work is ready (after persuing case for 5 months). Should have it by the end of the week. Just need to call the insurance company to set things up.

Got med report in mail. Have to wait for the State and the insurance company to get their copies.

I think this is about when we got another new manager ("P").

Called insurance co, left message asking why I haven't heard from them yet. Told them I hoped I wouldn't need a lawyer.

Spoke to someone at insurance co. Asked about paperwork and why my calls weren't returned. Paperwork was sent to "the next stage" in the process, and they'd "look into" why my calls weren't returned. Yeah.

Considering suing after emailing law office. At insurance co, no one answers phone, no way to leave message.

Finally seeing Dr, and he knew what I had - Spasmodic Torticollis - O_o - but treatment was outside his specialty. I picked "Orthopedic Surgeon" earlier from the insurance company short list of specialties, not knowing what I had.
Went home and Googled it, and wasn't pleased with the prognosis, but at least I finally knew what it was. And I'm in so much pain I can hardly stand it.

Got note from Dr for 1 week off to see if it helps. Using vacation pay.

Week off from work.

Back to work, and I feel a lot worse. I can't work anymore. The pain is excruciating. The meds I got earlier aren't helping.

Got appointment for MRI and physical therapy.

Got note from Dr. Workers Comp Leave starts today.

Insurance co gets disability payments for me. Shock!

Went for MRI. They said they'd do it even though I have surgical staples from appendectomy in '83. After I got ready for it, they said they wouldn't do it because of the surgical staples. @SSholes!

Filed complaint against "MRI company" for refusing to do MRI after telling me they would, and for lying to my Dr and the ins co about what happened there.

Dr appointment cancelled until I can get MRI - somewhere.

10/29 04
Finally had MRI at an "alternate facility" since the main facility's machine was broken. They said their alternate facility would do an open MRI. When I got there they said they had no open MRI equipment. Their report said "the deviation to the left was congenital". @$$holes! The deviation is to the RIGHT, and it's NOT congenital. Filed another complaint.

Physical therapy finally scheduled.

First of 14 phys therapy treatments starts. OUCH!

Dr wants to get 2nd opinion from a neurologist.

Phys therapy over. A waste of time, I feel worse. Ins co disputing my benefits and won't return my phonecalls. I threaten legal action. Store's Human Resources won't return calls either.

More Botox tomorrow!

I'm both dreading and looking forward to my Dr appointment for more Botox tomorrow. Although the neck pain has gotten worse, I still have more control over the spasms than I normally would at this time. I'm looking forward to the shots because of the pain, spasm, and muscle contraction relief. I'm dreading it because of how painful the shots are. I had 16 last time, and I hope I won't need as many this time.

How painful are they? Try pinching your neck with your fingernails - hard - for about 5 seconds, about a dozen times, and you'll have an idea what it's like. Not fun, but very effective for 3 - 4 months. Then it's back to the Dr office for more! Maybe I'll get lucky and they'll last for 4 months again.