Last week I met with 3 neurosurgeons, all of them wanting to do MVD but none of them had openings until mid to late September. We made an appt. with one of them for MVD on Oct. 2nd. Which is good...but, my pain is becoming unbearable.
I can't go to school, I sit under my duvet all day because there are no triggers that can "get me" under there. I can't eat or drink and it hurts so much. I don't know what to do..I'm just really at a loss. My Dr. spoke of putting in a NG tube so at least I'd be receiving nutrition, but now he's basically backing out of that, and I still can't ******* eat. I'm just feeling really, really lost. I'm basically begging my parents to take me to the hospital, I can't even take my pain meds.
There has to be a way around this..., but no one's offering anything. I don't know what to do.
Oh, Maddie .... I'm so sorry! It's so frustrating that there don't seem to be any easy answers with TN. Have your doctors ever tried an IV of Solumedrol? It always seems to calm the pain down for me. It's not something I'd want very often because the side effects aren't too fun, but it really does relieve the pain for me.
If you start losing too much weight or getting malnourished, then it's your doctor's job to take care of you. He'll have to make sure you're getting some type of nourishment.
I wish I had more advice or suggestions. I feel for you, Maddie, and hope you find some answers soon. Don't lose hope. We are here for you and there are better days ahead.
Call somebody and get some topical relief ASAP - for inside mouth pain - numbing lidocaine mouthwash --- for face lidocaine patches or cream -- should help you to be able to eat / drink some nutrition and get thru the day better.
Somebody responsive should be able to call theese RX in for you!
Sometimes ER narcotic drip will help for a few hours.....
If you are even unable to drink, there is no reason not to get to the ER or even urgent care for IV fluids and rehydration, some TN meds can be given IV also. While, in general narcotics don't help TN pain, in high doses they can put you to sleep and break that pain cycle, so as you awaken you are able to take your meds. Placement of a nasogastric tube during a huge pain period would not be fun. Continue to ask for what you need! If nothing else your Dr. could order Dilaudid or another strong pain killer by mouth.Just a few doses to take a break from the pain. Dilaudid is small, you can even crush it. This isn't going to help thru Sept., but would only be a temporary measure. You've got to find a way to get your TN meds down, and at a dose that relieves your pain.
For me, mornings were my least painful time of day, I woke with pain, but it sure wasn't as bad as would get as the day progressed. If this is your time of day too, have juice, milk, whatever and your meds brought to your bedside, don't even get out of bed until you get it down, use a straw if it helps, though it may not.. I found once I started moving the pain kicked in. Get what you need! hugs
What have they recommended for the pain while you wait for the surgery? My surgeon told me that if my surgery was too far off and the pain was too bad that he would do a glycerol rhizotomy to hold me off until my MVD when that time came. I am under control with meds so far.
Good and bad news ay. If you weaken yourself with no nutrition thats not good. Not being able to take your meds is not great either. Maybe you should have Mom call doctor let him know whats going on and have them push you up. September and October is quite aways off to not be eating or trying to get some relief with meds. Thats what I would do. If thats not going to work for you get another surgeon. I realize you saw three but a referral to another or check in your area for other surgeons that do MVD. Do not need to suffer this way especially with your physical health being compromised. Call you GP, then surgeons!
Good Luck sweetie keep us posted , hang in there best you can
My doctors dont want to give me painkillers, so I'm gonna get Botox again to help me survive until I can get MVD surgery. If done properly, botox is HIGHLY effective. Please read my post for more information:
Have they discussed a tube directly into the stomach. Not NG but surgically implanted in the stomach. I wouldnt think NG tube would be very good idea due to possible stimulating one of the facial nerves. I'm ss you are in this much pain and am praying for you. Lynn
Aw Maddie, I’m sorry to hear about your increasing pain.
What are your parents thoughts? I can’t imagine they wouldn’t take you to the ER, especially if you’re not getting any nutrition or fluids.
I’m glad you are scheduled for mvd, did they mention a cancellation list at all? Or offer to get you in sooner?
My initial wait was 8 months but when my pain increased and became unbearable they bumped me up after I contacted them. I only waited 4 months.
I hope you can get help ASAP.
Ask your mom to come read the forum or seek advice / info, maybe that would help?
Thinking of you… (( hugs )) Mimi
I was under a similar situation a few years back. If this continues you will have to be admitted for nourishment/hydration plain and simple. I was. And also once for pain management prior to a MVD. I told them I was considering suicide simply because the pain was too great. I clearly stated I was not a suicidal person outside of TN but that the pain of TN was too great to bear and that while the surgery was scheduled I didn't think I would make it until that date. They admitted me and managed my pain with a morphine pump. (which as we know doesn't touch our pain but it did knock me out so that the pain didn't wake me up and I was able get some sleep. I hadn't slept more that 5 minutes at a time due to the electrocution dreams waking to burning pain for 2 months.) It can be risky but just letting you know what my experience was. All the best!!!!