As many of you know we deal with doctors who really have no idea what we are going through. I'm 2 years post opt. and only a few months after began having my headaches, neck & shoulder pain along with visual disturbances and many of the other symptoms from before.
I was under the understanding after seeing the neurologist before the surgery that I would not have additional symptoms. However I have noticed ringing in my ears, numbness in my leg, additional visual disturbances among other symptoms. Now with the amount of problems I had before I have thought maybe because I lived with this for a lengthy time that I never noticed these other problems.
So here is where I'm at, I take 1 Effexor in the morning with 2 gabapentin, 1 oxy and 1 baclofen. In the afternoon it's 2 gabapentin & 1 oxy. The evening I take 3 gabapentin 1 oxy and 1 baclofen. I also take Tylenol if I can't shake the headache.
I have allowed this to be the norm for me for a few months now. However I'm concerned with the risks of taking this much medication. I'm glad I have good days, and I forget not to over due on those days. Which in turn causes fatigue along with the pain not being controlled. I also have the delusion that I'm not really sick and again I over due thinking I'm not really sick so I go work in the yard, clean house along with taking care of my 5 kids needs.
I have also noticed that along with my cycle the symptoms will increase and pain is not controlled as well, or at all. Does any of you women experience this?
I have a tens unit, I have had injections, along with physical therapy. Nerve blocks are now being pushed on me by my pain specialist.
Does anyone else take narcotics? Sometimes I feel very helpless and other times I understand what I have and can cope. I read everyone's stories and feel normal at least that the norm is the experiences we all seem to share. Navigating this is very difficult when you don't have a professional in the physician community that tries to educate themselves with this disease.
Sorry I just realized there may not be enough information. My herniation was at 22mm with little to no CSF flow. I was diagnosed at end of Oct 2011 and had decompression surgery in December of 2011. I was walking off to the left with almost every text book symptom with some not listed. I was diagnosed with Chiari 1, with 3 bulges that are apparently normal and aren't anything to worry about.
Hi Abby, thanks for responding. I have read the information on Dysautonomia a few months back. I had an appointment to talk to my doctor but I ended up with such a horrible headache in her office we never got around to it. Like I said above I have just been taking the 13 pills a day so I can get through them with my kiddos being so busy. Things have calmed down and I'm feeling like I need to figure out what is going on instead of just covering up the symptoms with drugs. A lot of times I just feel alone and it weighs heavily on me. I use to be a vibrant athletic on the go person and now I struggle to get through the day.
Have you had a post-op MRI to make sure that your surgery was a success? I would request one to make certain that CSF is flowing well and you aren't having issues with scar tissue or instability. Everyone has a different experience but I would think it's not optimal to need so much medication after surgery and your doctors should want to get to the root of the issue. Good luck and keep us posted!
My daughter had decompression done last year and all of her symptoms returned after 5 glorious, happy, pain free months. I am sorry to hear this happened to you as well. Such a hard place to be.
Anglyn I had 3 post op MRI's, the surgeon said everything was good restored CSF flow ect... I then had MRI's & X-rays of the thoracic/lumbar because there had been radiating pain coming from my tailbone. The pain now only comes when I'm on my cycle.
Gma7938 sorry to hear about your daughter. I have been misdiagnosed for sometime and when there was finally a true diagnosis I was so peaceful about the surgery. I did end up staying longer than anticipated and after a week ended back in ER with blood clots in my lungs. However after another weeks stay I went home and began healing. Just like your daughter a few months of believing I could resume where I left off 15 years ago did not happen and the pain came back with new symptoms.
I know I'm not alone and all of you really understand I guess I just needed to say it and actually be told I wasn't. My family doesn't understand, I have lost friends, I can't manage simple tasks sometimes. Thanks for the encouragement and replies.
I have for the past 6 years been just about pain free. I use no pain pills. I do have days where I do not feel on top of the world, where I feel a bit numb etc, but none of the pain you all talk about. My life has a good quality. I work as a teacher in art 3 days a week. The load and pressure of lack of rest was too much with a 5 day week.
The reason for not needing pain pills is that I have a Radio Frequency Rhizotomy done every two years or so, depending on when is wears off. They insert a thin probe into the nerve in the neck relaying pain messages to the brain then stun it using radio frequency. It takes about 20 minutes in theater. You go home when you are awake and no longer groggy. Next day you can carry on with your work, school etc. However, you feel like a brand new person. None of the terrible pain, no pain pills, look better as well. Please ask your NS to do this for your daughter and give her a chance.
It reduces the amount of pills you swallow and therefore help you look after your kidneys as well.
If your doctor wants to talk to my NS let me know so I can post you his number.