Hi, my name is claire and I’ve joined because I want to help my mom.
My mom is 51 years of age, she had suffered from TN for around 5 years+ when a neurosurgeon offered to do MVD. Since the meds were no longer working and she was in constant pain she didn’t care about any of the risks. She told me if she couldn’t have the op she couldn’t live any longer. So it was decided, ahead she went with the op.
The op was deemed a success, TN pain had gone! Mom was told the usual about taking time for the swelling to go down/numbness to subside. She felt awful, we begged to see the neurosurgeon but was told he would only see her in 6 months. The appointment finally came and he just said she had to be patient, TN pain was gone so she was discharged. As far as he was concerned she was no longer his concern.
She remained on gabepentin for the constant burning In her face, her eye felt droopy, and there was some numbness. Meds continued their pattern of making her very unsteady on her feet, drowsy and she felt really down.
16 months since the op and nothing has changed. Any slight change in temperature causes her face to swell and burn, it is visible and she says it swells inside too and feels like cotton wool. She’s got chill blaines on her feet from not having any heating on all winter- her body froze but her face couldn’t take the pain of swelling. She constantly eats ice to try and reduce the swelling. She said she’s glad the op took away TN as it was worse than this, but she’s not really living life anymore, just existing.
I want my mom back, I don’t know what to do to help her, and nobody seems to know how to help I’ve scoured the internet and have found info on anesthesia dolorosa but nothing about swelling only burning?
I would love to hear any advice any of you have or suggestions on what to do. We are trying mirror therapy tonight in the hope it will help
I am so sorry your mom is going through this. She is very lucky to have you helping her through these rough times.
I dont have anything useful to say but I will try to get some clarification in case someone else might be able to know what is happening with your mom.
So the part where I am not clear is where did the new pain come from?
So the surgery fixed the TN pain, but it created a new pain where your mom’s face swells and burns?
Or was this pain there before the surgery and the surgery only addressed the shock type pains of TN? Any more information you provide will be helpful about the specific problem your mother is having.
I hope its not anesthesia dolorosa. Hopefully @Red1 can also look at this thread too.
Here is a recommendation that i always make and I am not really sure if it can help your mom. But I have TN2 and what always helps me is capsaicin cream. It is a cream made out of the chemical that gives pepper its spiciness and this cream can dampen the pain in TN for some people. You have to apply it frequently but you begin to notice some decrease in pain over a few days. Also it has no significant side effects.
I am so sorry for what you and your mom are going through.I just don’t understand how doctors can be so harsh after someone has gone through an operation like that.In Canada they want you to do mindful meditation.Maybe there is a group in your area that you could go to with your mom.
The mirror thing sounds great.I have tried it for me,but I just don’t seem to keep at things.I would love a daughter like you.
Please stay on the board.There are some great people ,with great ideas.maybe there is even someone who lives near you.
I think you can kind of get an idea where they live by clicking on their little emblem .Not the right word-the drugs have got me.
Hope things get better,soon
Hugs
Thank you both for your kind words.
Sorry, to clarify the pain she has now started straight after the MVD, it wasn’t there when she had TN but started after the op and the TN pain was gone. From what I’ve read I think it is anesthesia delorosa, although I haven’t found anyone with it who has said about the swelling…my search continues!
Looking for a mindfulness group is a great idea and I will look into that more this week.
The mirror therapy went well tonight, we are going to do it at least once a day together and I found people on the net who have done it on their own so she’s going to try it that way in the morning (we don’t live together). I’m praying with everything that I’ve got, that this helps
I’ve had a look at the capziam and in the uk it’s only available on prescription… does it heat up when you apply it? If so I think it would make the swelling worse but thank you for the suggestion xx
@Mommaslittlehelper
Yes ! capsaicin heats up ALOT in the beginning !! terrible suggestion, sorry!
There are a few people here with anesthesia dolorosa from the old posts that i have read. I hope they can come and read your post.
The swelling is really odd to me! I thought TN was a neurological problem but the swelling seems strange to me. Some people have spasms due to damaged nerves but I dont think I have read about anyone with sudden swelling as a symptoms. But of course I am no expert.
Hopefully some of the more knowledgeable members will read this.
I am so glad the mirror therapy went well.
I an thinking if you scroll through all the comments and ask people who have had issues after the MVD maybe you will get closer to finding what the problem might be.
I hate it that after we get a diagnosis no doctor wants to look at maybe some other stuff that is going on,too.
I wish your mom well and I hope she comes on line at some point.
Hello
I can relate. I am in the same boat. I have AD from the damage of two surgeries. At this point in my life I just try to manage my symptoms. There is little the Neuro surgeons can do for me. My advise is to accept and work on med management. It is very sad…
Hi, i am quite new to this all but when you wrote about swelling I had to write. The doctors haven’t totally diagnoised me yet but they are leaning towards midfacial segment pain so I don’t believe its the same as your mom BUT my face swells when an attack starts. I chalked it up to an allergic reaction which triggers the nerves in my face to react. Even after the swelling goes away my pain remains for weeks.
It is my cheekbone area that swells up, and becomes hot and my eyes get puffy, too.
I’ve scoured the internet and have found info on anesthesia dolorosa but nothing about swelling only burning?