Omg! Went to the surgeon today and am booked in for mvd! Need all the info I can get, tell me your stories people!
One part of your study, Aminda, might be the surgical treatments section of our Face Pain Info tab. If you have questions about the procedure itself or its statistical outcomes, feel free to ask in the interactive comment box at the foot of that page. Likewise, of course, many people here will have their own experiences to contribute. You can contact some of them who might not see this posted thread by running a search on "MVD" in the search box at the top right of this page. Follow up to posters whose comments seem particularly pertinent to your pain profile and health.
Hi,
I had MVD two weeks ago tomorrow. Woke up from surgery pain free and am very thankful. The one thing I have learned in this past two weeks from my experience and reading the experiences of others is that everyone's surgery and recovery will be different.
For me, I woke up extremely nauseous due to the anesthesia. Spent an hour or so in post-op before moving to ICU. No TN pain, but a major headache! Had neck stiffness and a really sore scalp from all of the probes and such. I spent the first day in ICU and those days were pretty much a blur of vital signs, morphine, and blood sugar testing (one of the medications I received during surgery elevated my blood sugar significantly). When I was finally moved to my (thankfully!) own room, I was in the hospital for an additional two days.
Recovery has been slower than I expected (but I went into surgery with a big dose of denial). Up until yesterday, I tired very easily. I still don't have much of an appetite. My major concerns are dealing with other post surgery issues, such as:
- My tongue feels like the taste buds have been burned off. I'm told that could be the result of the tube, but I'll be following up about this today.
- Also, the right side of my face--the surgical side--still has quite a few conflicting sensations such as ear ache, numbness, tingling, and sometimes a mild burning.
- My scalp is also still very sore. Sometimes it feels like my hair is too heavy for my head, causing me constant discomfort.
- The worse has been the headaches. I no longer have them during the day, but at night when I lay down. Sleeping and napping is very difficult as any pressure anywhere on my head causes a major headache and throbbing. Last night I took pain medication before going to bed, which helped me get to sleep without too much discomfort. However, I woke up in the middle of the night with an excrutiating headache and had to take more meds.
Every day does get a little better.
Good luck to you! Keep us posted on how you are doing.
Kiya
aminda,
My experience so far has been very good. I had my MVD one week ago and am doing great. I have taken a couple of short walks each day for the last couple of days,the feeling is returning from the slight facial numbness I had right after surgery and I have begun easing off the meds and, most importantly, no TN pain!
Obviously, we all have different experiences with TN and treatments including MVD. Personally, I wish had done it earlier and not had to deal with the pain or these meds that made me feel like an imbecile.
I wish peace for you,
craig
Hi, Aminda
Everyone is different, my MVD was on Aug. 30th of last year and it was one of the best division I have made in my life. I have been pain free since my surgery although i still remain on a very small amount of medication. I think kiya's experience was just about like mine was, only, I was in the hospital 2 1/2 days, then came home. The headaches for me were controlled with extra strength Tylenol after we found out the hydro condone was actually causing me to have them more. Just take it easy and you will do just fine. It is a surgery that take's time to heal but it is so worth it!!
Just keep a positive outlook and keep in mine how wonderful it will be to be pain free!!
Take Care and God Bless,
Linda
Thanks everyone for your help, I will be reaserching what I can, it seems the stories I have read have me wondering would I be worse off after the surgery. I understand that yes I could be pain free but I worry about the numbess and tingling, headaches or loss of hearing seem to be the majority of what people are saying they deal with post op. Atleast right now my meds are working (although I am away with the pixies), are there many people that dont choose to have the surgery in fear of side effects? I have 3 kids to look after and a partner that works away a lot I just need to manage the best I can and make the best decision for me.
One thing to keep in mind, Aminda: at a patient mutual support site, you're going to encounter a lot more people who need support, than may be the case in a general population. So there's a negative observer bias here.
For people with type I TN, success rates of many experienced surgical teams are above 90%, and persistence of effects is beyond 14 years for about 70% of all those operated upon. Hearing loss does happen, but it's rare. Also rare is loss of tearing reflex. Persistent facial numbness is more common, but many patients express the sentiment that it is an acceptable tradeoff against the pain itself. The toughest side effect of MVD can be Anesthesia Dolorousa -- and it is entirely in order to ask the neurosurgeon whom you consult, what proportion of their patients deal with that effect.
For further informatoin see our "Face Pain Info" tab, and go to the section on surgical treatments.
Regards and best,
R.A. "Red" Lawhern, Ph.D.
Resident Research Analyst, LwTN
I totally agree with Red!
For me right now, recovery is not the easiest thing I've ever done, but that's mostly due to my personality. I've never taken a leave of absence from work nor have I ever needed anyone to "help me". However, as far as the surgery for my TN is concerned? Best decision I ever made in my entire life.
For the last few months I had been living with constant pain. To wake up from surgery with no pain at all was well worth the risk and side effects for me.
Good luck to yo with your research and ultimately, your decision.
Best,
Kiya
Kiya,
I hope you are continuing to feel better each day. I am scheduling my MVD now, but have to get insurance to approve my surgeon. I did not talk much to the doctor about what how I might feel during recovery from surgery. Please keep blogging about your condition.
Don
kiya_b said:
Hi,
I had MVD two weeks ago tomorrow. Woke up from surgery pain free and am very thankful. The one thing I have learned in this past two weeks from my experience and reading the experiences of others is that everyone's surgery and recovery will be different.
For me, I woke up extremely nauseous due to the anesthesia. Spent an hour or so in post-op before moving to ICU. No TN pain, but a major headache! Had neck stiffness and a really sore scalp from all of the probes and such. I spent the first day in ICU and those days were pretty much a blur of vital signs, morphine, and blood sugar testing (one of the medications I received during surgery elevated my blood sugar significantly). When I was finally moved to my (thankfully!) own room, I was in the hospital for an additional two days.
Recovery has been slower than I expected (but I went into surgery with a big dose of denial). Up until yesterday, I tired very easily. I still don't have much of an appetite. My major concerns are dealing with other post surgery issues, such as:
- My tongue feels like the taste buds have been burned off. I'm told that could be the result of the tube, but I'll be following up about this today.
- Also, the right side of my face--the surgical side--still has quite a few conflicting sensations such as ear ache, numbness, tingling, and sometimes a mild burning.
- My scalp is also still very sore. Sometimes it feels like my hair is too heavy for my head, causing me constant discomfort.
- The worse has been the headaches. I no longer have them during the day, but at night when I lay down. Sleeping and napping is very difficult as any pressure anywhere on my head causes a major headache and throbbing. Last night I took pain medication before going to bed, which helped me get to sleep without too much discomfort. However, I woke up in the middle of the night with an excrutiating headache and had to take more meds.
Every day does get a little better.
Good luck to you! Keep us posted on how you are doing.
Kiya