Hi,
Well after my MRI/MVA the neurosurgeon came to the conclusion that I have "significant" compression and showed me the artery lying on the nerve. I wondered from those of you that have had surgery what to expect.
How long were you in ICU...days in hospital total....how did you feel when you first woke up. How soon will I be expected to get up?
I'm very nervous... I am blessed as I work in surgery so everyone in my 'room' are the best at what they do from the scrub tech to the anesthesiologist even so I'm nervous...
Any advice and answers to my questions would be appreciated. :)
Hi
I had MVD surgery in May 2009 that was successful. I was very nervous before surgery but felt after taking meds for eight years that I was finally doing something to get rid of the pain. That is what I kept telling myself to calm down. After surgery in ICU my head pain was terrible. They were able to give me enough pain meds that I could tolerate it. What surprises me the most was the pain in my neck. I was in ICU for one day. Then moved to a room which was much quieter. I had surgery on a Thursday and went home on Saturday. The first day was the worse with the pain. Then you gradually start to feel better. They had me up and walking on Friday. Head still hurt but much better. I haven’t had any TN pain since the surgery. Two artery compressions and one vein. This was the first surgery I had e er had. What surprised me the most after getting home was how weak I had become. After getting home was a lot of resting. After the first couple weeks each day I could tell was better than the one before. I went back to work at six weeks.
I am so glad that I had this surgery. My life is back to normal now. Good luck to you and I hope this is your answer to becoming pain free.
Connie
Hi Judi!!! Congrats on your upcoming surgery. I know how scary it is....I had my second MVD on April 19th. ICU stay is typically 24 hrs. The worst part for me upon waking was a ba head/neck ache....but not near as bad as the pain I was having prior to surgery. I really got to feeling better very quickly. Just listen to your body and take it easy. I had a complication and had to have subsequent surgery for a CSF leak. As I said....listen to your body....question EVERYTHING you don't feel comfortable/easy about. The fatigue is the worst part, once you "think" you should be back to normal. I've had other surgeries, but none made me as tired as this. Praying for smooth sailing for you and your medical team!!!
Hi Judy,
Good luck, I'm going in for my MVD on the 4th. I cannot wait to get relief!
There are a lot of great posts by members on what their experience was like, it seems to vary from person to person. My Dr said one night in intensive care, then one or two nights on regular unit the d/c. I'm sure it will be like any other surgery, the staff will want to get you up, eating and to the bathroom as soon as you can.
What I've gathered in reading is that a lot of people have said to keep ahead of the pain as their might be headaches, don't overdue it at home, lots and lots of rest.
I will send positive thoughts and prayer to you and your surgical team on Tuesday.
Keep us informed!
Mary
Hi Judy,
I hope if you are reading this you are well on your way to recovery after surgery. I will echo what others here have said about taking it easy during your recovery. My surgery was June 30th. I have been free of TN pain since I opened my eyes after surgery. I pray you have the same outcome. I had to take it easy for a few weeks after I got home. Your body will definitely tell you if you are doing too much. Rest, rest, rest! Don't over do it. This will lead to a much quicker recovery from surgery. I am now almost 2 months out and feeling great. The numbness I had after my surgery is getting much better each week. My skull is still tender, but I don't have headaches anymore. My hair is growing back where they shaved it. I have not regretted this surgery for one second. I am almost to the point that I don't think about TN everyday and worry that it will come back. That is a major accomplishment. I suffered with the pain for almost 4 years. It's sometimes hard to let myself believe that I am cured forever. But I pray that I am and am so thankful each day that I do not experience the excruciating shocking pain of TN. I am praying that you have the same result. There were two compressions found and fixed on my trigeminal nerve. I would have never found relief had I not had this surgery. Please let us know your result. Wishing you a speedy recovery and life free of pain!
I share your same concerns as I am scheduled for MVD Oct.18. Will I really have as much head pain as I read from several members? I believe there are no nerve endings in the brain, so that won't cause pain. So is the postop pain from the scalp and skull "assault"? Is it from the neuro "head rest" used for positioning my head? What position will I be in? I guess these are questions I can ask my surgeon's P.A. I drink so much caffeine lately, that I expect to have a caffeine withdrawal headache. I don't want to reduce my caffeine intake because I will want to sleep all day!
Dixie,
I did have caffiene withdrawal on the morning of surgery, then headache on the left side on my head. Nurse said it was because they worked on the right side of my brain. I was d/c today after having MVD on Tuesday! No TN pain since I woke up from surgery. The rest of the aches and pains are nothing compaired to TN pain! I am sooooo happy I had the surgery!
Mary
Dear Mary,
All I can say is, "Woweeee!". It is so good to read about a really positive experience. Will you remain on some meds. and then gradually get weaned off them? I forget, where did you have your surgery?
Thanks for taking the time during your recovery to answer me--I really appreciate it.
Keep up the great progress,
Dixie
mary said:
Dixie,I did have caffiene withdrawal on the morning of surgery, then headache on the left side on my head. Nurse said it was because they worked on the right side of my brain. I was d/c today after having MVD on Tuesday! No TN pain since I woke up from surgery. The rest of the aches and pains are nothing compaired to TN pain! I am sooooo happy I had the surgery!
Mary
Hi Dixie,
I was told my local neuro will handle the withdrawal of meds. This is going to be a very stern discussion with him as he has already mentioned that he keeps people on the meds one year after surgery! I told him we would be discussing this at my post op appointment. I see a need to wean off the meds it is not good to stop them cold turkey. These meds had not worked for me, it was the fourth trial of meds for me. I was having 20-30 zaps a day on these meds. I have had none since Tuesday when I woke up.
I had four little small incisions around my head, they monitor your hearing in Boston by placing he 4 electrodes in your head during surgery. No halo used. I don't really know how they tied me in. Neck will be 'sore' and the PA told me to expect spasms in the neck area 3-4 days post. Hardest part was trying to move/get up from a laying down position, that put a lot of pressure on my neck/head area. Slept with four pillows last night. I kept ahead of the pain in the hospital always asking for it at 4-5 hour increments. Second night I slept a lot better and went about 8 hours and had to play catch up the next morning for the pain. But its not TN pain, its soo different.
A bit of numbness comes along with the surgery. I have it on the tip of my nose down the front and a pit on the palette underneath in my mouth. You don't even know its there and again, its not pain, just there. It will start to go gradually go away. A good friend I met on this site, RickRI also had the same surgery, Dr and Hospital as I did. He had his TN surgery on July 17. He went back to work after his 3 week post op! I'm going to take a bit longer to wean into work! He has numbness on his upper & lower lip area on the right side. This is common as they are playing with a nerve in your head, and I guess the numbness shows up differently on people.
Know there is a light at the end of the tunnell! :)
Mary
Great information and thank you. I am going to ask the P.A. how I will be postitioned for the procedure. What meds are you on?
mary said:
Hi Dixie,
I was told my local neuro will handle the withdrawal of meds. This is going to be a very stern discussion with him as he has already mentioned that he keeps people on the meds one year after surgery! I told him we would be discussing this at my post op appointment. I see a need to wean off the meds it is not good to stop them cold turkey. These meds had not worked for me, it was the fourth trial of meds for me. I was having 20-30 zaps a day on these meds. I have had none since Tuesday when I woke up.
I had four little small incisions around my head, they monitor your hearing in Boston by placing he 4 electrodes in your head during surgery. No halo used. I don't really know how they tied me in. Neck will be 'sore' and the PA told me to expect spasms in the neck area 3-4 days post. Hardest part was trying to move/get up from a laying down position, that put a lot of pressure on my neck/head area. Slept with four pillows last night. I kept ahead of the pain in the hospital always asking for it at 4-5 hour increments. Second night I slept a lot better and went about 8 hours and had to play catch up the next morning for the pain. But its not TN pain, its soo different.
A bit of numbness comes along with the surgery. I have it on the tip of my nose down the front and a pit on the palette underneath in my mouth. You don't even know its there and again, its not pain, just there. It will start to go gradually go away. A good friend I met on this site, RickRI also had the same surgery, Dr and Hospital as I did. He had his TN surgery on July 17. He went back to work after his 3 week post op! I'm going to take a bit longer to wean into work! He has numbness on his upper & lower lip area on the right side. This is common as they are playing with a nerve in your head, and I guess the numbness shows up differently on people.
Know there is a light at the end of the tunnell! :)
Mary
Trixie,
I am on lamictal 100mg BID and he introduced baclofen a few months back, 20mg p/night. Was on trileptal & Neurontin at first, both worked well but I had side effects with my blood sodium and liver enzymes. Nothing has worked since those two which made me a candidate for MVD in the insurance companies & neurosurgeon point of view. I know that if the meds work it is a good thing, but I read somewhere that the chances of MVD working after 7 years of your diagnosis decreases. I knew my future would be more and more increases of medication that would just make me more and more groggy. Like RickRI, if there is a cure for this, why not get it! Getting off our meds and living your life the way you did before TN.
I've even tempted my my trigger points like spicy food, talking, smiling and standing in front of a fan! The pain is gone! :) Woohoo!
Mary
WOOHOO, is right--I want my life back!!!
mary said:
Trixie,
I am on lamictal 100mg BID and he introduced baclofen a few months back, 20mg p/night. Was on trileptal & Neurontin at first, both worked well but I had side effects with my blood sodium and liver enzymes. Nothing has worked since those two which made me a candidate for MVD in the insurance companies & neurosurgeon point of view. I know that if the meds work it is a good thing, but I read somewhere that the chances of MVD working after 7 years of your diagnosis decreases. I knew my future would be more and more increases of medication that would just make me more and more groggy. Like RickRI, if there is a cure for this, why not get it! Getting off our meds and living your life the way you did before TN.
I've even tempted my my trigger points like spicy food, talking, smiling and standing in front of a fan! The pain is gone! :) Woohoo!
Mary
Hi, I’m having my mvd at Toronto western hospital, Toronto, Ontario, Canada, dr. Tmyianski, October 16th…woo hoo!!! Nervous…as I do not have a lot of pain right now…just medication overload…zoned out and tired…looking forward to finding me again…not so into the headaches…but I know in my heart…this is the right decision for me…everything I have read is get the mvd as soon as possible before the nerve is terribly damaged. I know medication fails eventually…and when considering the surgery all aspects of my life were in consideration…not just the disorder…
I wish you a safe a speedy recovery…I look at it like having a baby…you know what you have to go through is not fun…but the result…amazing!!!
Keep in touch Lisa
Good luck on your surgery!!! 
Hi Judi, I also was very nervous. I think it differs depending on how you actually recover. But I was in ICU for two nights. Then moved to the ward, but had a few complications. Therfor had a longer stay in hospital. But I think the normal stay is about 6 or 7 days. Good luck. I will be thinking of you. Hugs Sally
I understand all you have said, Lisa. I am scheduled for a MVD on Oct 16, also, at Johns Hopkins in Baltimore. I am so excited about getting it done and getting my life back.
I wish you the best,
Dixie
Hi Dixie, well October 16th is our day my friend…say goodbye to the electric friend and hello you! Where is your pain located? Mine is forehead to nose…so v1 and partial v2 compression of the nerve. My pre op went very well today! Do you by chance know how long the effects of tegretol effects you for even after you are taken off meds?
Hi, Lisa--I don't know how long the tegretol stays in your system but maybe the pharmacist could tell you. I have been on Lyrica, 300mgs., since July and I have been pain free only since upping the dose. I have had a few "whispers", as I call them. I thought my pain was only V2, but after the consultation and my description, V1, V2, and V3 are affected. V1 was determined to be involved because sometimes touching the corner of my eye was a trigger. V3 was also determined to be involved since sometimes touching the corner of my mouth (lips) was a trigger.
I go to Miami on Oct.8 to see my internist/cardiologist for routine tests, EKG, etc. for medical/surgical clearance for the MVD.
I wish I could see a skull or a brain so I can better understand just where the foramen ovale is and where the nerve is located. I would love to see an actual MVD and see exactly where and how the trigeminal nerve is accessed & how it is cushioned--I would love to see the entire procedure!
I am going to request that absorbable sutures are used on the skin closing. I don't want to have to find someone (doctor) and have to drive to Miami to have that done. ($$$$$)
Call me if you want--305 393 3047
Dixie
Dixie,
Go to www.youtube.com and search microvascular decompression surgery. There are several surgeries that I watched before my MVD. It helped knowing what they were going to do to me!
Mary
Dixie said:
Hi, Lisa--I don't know how long the tegretol stays in your system but maybe the pharmacist could tell you. I have been on Lyrica, 300mgs., since July and I have been pain free only since upping the dose. I have had a few "whispers", as I call them. I thought my pain was only V2, but after the consultation and my description, V1, V2, and V3 are affected. V1 was determined to be involved because sometimes touching the corner of my eye was a trigger. V3 was also determined to be involved since sometimes touching the corner of my mouth (lips) was a trigger.
I go to Miami on Oct.8 to see my internist/cardiologist for routine tests, EKG, etc. for medical/surgical clearance for the MVD.
I wish I could see a skull or a brain so I can better understand just where the foramen ovale is and where the nerve is located. I would love to see an actual MVD and see exactly where and how the trigeminal nerve is accessed & how it is cushioned--I would love to see the entire procedure!
I am going to request that absorbable sutures are used on the skin closing. I don't want to have to find someone (doctor) and have to drive to Miami to have that done. ($$$$$)
Call me if you want--305 393 3047
Dixie
Thanks, I'll do that this afternoon. I had not thought about that.
Dixie