I was diagnosed with Atypical Trigeminal Neuralgia on my left side about 6 years ago. Mine like many people started in my jaw and teeth. I went through horrible pain for years before they finally figured out what it was. Spent a fortune on dental work only to end up pulling the teeth trying to be rid of the pain. I know I'm not alone in this. What started out as Atypical TN on just my left side has now spread to my right side too so I have Bilateral Atypical TN. I got a double whammy of it now. I have the burning, feeling like my face onfire, shocking, etc. So I was desperate like many of you .
I tried the Gamma Knife with no success and after pure desperation I resorted to the MVD. Waste of time, pain and money for me. Did nothing at all, sadly I fell into that percentage of people it didnt help. After that failed I immediately found a pain management doctor, I was on 100 mcg fentanyl pain patches for about 6 months which helped the pain. I was also taking Oxycodone for breakthrough pain. It was better than constantly taking pain pills but I slept practically 24 hours a day. Unfortunately with this horrific disease there is only one option for many: Pain Management.
Now onto the pain pump. I personally hate pain meds obviously not for the pain relief but the way they make me feel: the grogginess, inability to drive, brain fuzz. etc. My pain doctor and I discussed the pain pump and it sounded like the answer for me. The pain pump is permanently installed (mine is in my left back hip buttocks area) you dont see it. They run a catheter from the pump into the appropriate spinal space where the selected pain medication will be released. I am using Fentanyl as it works for me. Morphine did nothing.we discovered that during the pump trial.
What is a pump trial you ask? This is done through your pain doctor before you get to actual install of the pain pump. you want to make sure it will help you before you take such a major step. During the pump trial your pain doctor will temporarily insert a catheter into the spinal cord and you will be given a fanny pack that is attached. This fanny pack has your pain meds in it. He told me to leave, go shopping do whatever for a couple hours and lets see if it helps. The morphine for me didnt. During the trial they can adjust the dosage, attempt different medications etc to see if it will work for you. Once we knew it was gonna help me I had the surgery.
My pain doctor referred me to a neurosurgeon that installed the pain pump. WORD OF ADVICE!! MAKE SURE THE SURGEON GLUES AND STITCHES IN THE CATHETER!!! sorry dont mean to yell but I ripped my first cather out very easily and had to redo surgery. just trying to save you the trouble, pain and money. Once its installed it is just a matter of time to get the pain medication levels adjusted to a level that you are out of pain. It has been a miracle for me. I went from unimaginable pain to tolerable pain. I went from not able to drive because of the pain meds to driving miss daisy. I went from hardly able to complete a sentence while speaking to better cognitive skills. granted i still have some issue but I am sooooooooo much better.
A big benefit of the pain pump is that the medications are going through your spine and not your stomach, you dont have to worry about getting an ulcer from constant pain meds. You don't get the stoned feeling like with pills as bad. Not to be gross but you dont get the constant constipation either. Granted I still sleep alot because my medication has to be strong. I am not completely out of pain. I can't get to that point if I did I would Sleep 24/7. But the pain is sooo much less than before. The tears are gone and the complete hopelessness that came along with it. Depending on your dosage you will go into your pain doctors office for refills every few months, mine is just over a month. it is simply done by injecting a needle into the pump to drain out the old meds and adding the new pain medication. They can also mix medications. I also have a muscle relaxer in my pain pump to help with my back so kill 2 birds with one stone.
Another advantage of the pain pump is the PTM (personal therapy manager). It is a like a remote unit that you either place on the outside of your unit or there is a chord attached to it. This allows you to give yourself a bolus (dose) of extra pain medication as needed. The doctor sets up how often and how much will be given each time. I started every 4 hours but now I am on 3 because of my pain level. Again since not going through stomach like normal pain pills for breakthrough pain dont get all those side affects.
The only negatives I can think of the battery has to be replaced in the unit, so you will have to have the surgery about every 5 to 7 years to replace it, they just replace everything at that time. Another negative is if you are a scuba diver. you can only go to 30 feet due to the pressure on the unit. of course because of the catheter you have to be careful if you overstretch during some crazy vigorous activity which heck in so much pain who is any way.
Hope this helps give you all another idea and option in your battle. I have included links to the pain pump I have and the PTM so you can see first hand what I am talking about. Take care and God bless each of you. Hugs
