Med vs. non meds vs. surgery

[Mom2boys]

What medications are you taking for ACM? Are you taking Rx to treat symptom by symptom?

Does your pain come and go? meaning some days are far better than others and when you do have pain it lasts for hours vs quick stabbing jolts?

How many of you have chosen to have surgery? If you have are you happy with results?

Are any of you choosing to see a Pain Dr.?

I just had my CFS MRI done on Tuesday and see Dr Ellenbogen on the 30th. I have mixed feelings if he tells me my pain in the neck, face, top of head, arm and blurred vision is not due to the Chiari I will disapointed in once again not having a clear Dx but on the other hand Im nervous that he will say it is contributing to the symptoms I describe.


I just have to remember I do not really care about the Dx as much as I care about controlling my pain better.

Many Thanks,
L.

[Jess]

I have hydrocephalus in addition to chiari, so that complicates my situation a bit. To answer some of your questions, I am taking medications for pain. Before surgery, I was taking nortriptylin at night to help with nerve pain and sleep. Post-op, I am still taking the nortriptylin, but have added ibuprofen and soma for inflammation. The medications have helped me because before, I was in so much pain I was struggling to even get a decent night sleep.

Initially my pain did come and go and was worse some days as compared to others. As time progressed, the pain was 24/7, but was made worse by doing things like exercising, straining, coughing, sneezing. The pain lasted pretty much all the time, but when I did strain or cough or something I would get stabbing jolts of pain too.

I did finally have surgery March 30, and it has been a remarkable difference. I have had many surgeries because of hydro, but the Chiari surgery was pretty painful. I do not regret having it at all though because it has improved my life so much from where it was just four months ago.

I never got to a pain doctor before my surgery, but I may end up going to help with some of the residual pain that is left now.

I hope that answers some of your questions. I totally understand the emotional rollarcoaster that this puts you through, but have faith that the right thing will happen. Good luck.

[Mayzoo]

My sweetie (5yrs old) has been on Topamax for 7 months for neuropathic pain, and Baclofen for spasticity. My sweetie is very expressively delayed--she speaks at about a 18-24 mo old level, but has normal receptive language (understands at her age.) Pre-medication days included about twice a week days of 8 hours of horrible pain where she beat her head on the floor and screamed until she passed out from exhaustion. Now, she has rare short bouts of moderate pain, some days where she is just not herself.....but most days she is my giggle bunny :) :D .

We are waiting on surgery until she we feel she is closer to experiencing irreversible nerve damage (but not experiencing it yet!!). Her doc is Doc Frim in Chicago, and he also recommends waiting on surgery for her right now. She also has a syrinx, some autistic traits, and an arachnoid cyst--but I think the bulk of her symptoms (above the waist) are from the ACM, and she has a little bladder trouble from the syrinx.

Mayzoo