Tuesday, October 6, 2009

MVD Surgery Completed

So on Sept 17th I had a surgery called Microvascular Decompression (MVD). It was to relieve pressure on a nerve on my face that has been causing me extreme pain on and off for over a year.
Doctor Carlson, amazing surgeon, found a large vein wrapped around my trigeminal nerve. Usually they are able to cauterize veins but not this one. This one was so tightly wrapped it was touching the nerve in several places. If he cauterized there would have been too much blood loss and risk of stroke. Instead, he placed teflon padding between the nerve and the vein.
I spent 2 days in the ICU. I had the surgery on Thursday about noon and it took me until about Friday at 11pm to pull out of the anesthesia completely. Saturday they moved me up to the neuro floor and I stayed until Wednesday morning.
The side effects of the surgery have been headaches, nausea, vomiting, and fatigue. I spent the first 2 days vomiting. Thank god I don't really remember it all. Whew. I did have super migraines for about a week. Now, about three weeks post surgery, the headaches are mild and here and there. I am pulling out of it. I am overdoing it a bit though. I forget that the neck muscle still needs to heal. Two days ago I felt like cleaning, and as I was sweeping my kitchen, I pinched a nerve in my neck. The next morning it was even worse. Today, though, it's been better. Still sore but better. I am just anxious to get back into the swing of things, I guess.
At my check up appointment last Friday, Dr Carlson told me I need to take things slowly and not rush my recovery. He explained it could take up to three months for me to feel "normal" again. However, our key focus is the trigeminal nerve pain. I have not had any pain! I DO have some mild burning pain still, but it is tolerable (a 2 on a scale of 10) and treatable with Neurontin - and it's only here and there. I am only concerned with the debilitating sharp stabbing ice pick pains I had almost every day for months. I have not had them since the surgery. I am so happy that when I think about being pain free, I cry. It's that freeing. I feel like I am getting my life back. Maybe that's why I am so anxious to get back to "normal" (Don't rush recovery!). Now my doctors have me stepping down my meds (Neurontin, Tegretol, and Topamax) so I can eventually quit taking them.
Thank you to everyone who has given support to our family during these times. We are so thankful. Truly thankful.
Here are 2 pics of my wound, 3 weeks post op (healing!)

17 comments:

Anonymous said...

Please continue to post about your recovery after surgery. I just discovered your blog and I think you did an excellent job of documenting the whole process...diagnosis thru surgery. I also had MVD in July and have not had any of "the monster" pain since...but am experiencing oddities as I regain balance and nerves go back to normal in my head. Definitely not as easy of a process as I had read about but well worth it!! Thank you for writing about it!

Anonymous said...

My daughter had MVD and partial nerve section December 2008 and is still experiencing problems.. Not only numbness but feeling of swelling in the mouth which is affecting her speech.. Depression, headaches etc.. We can't seem to get any answers from anyone including the consultant..She has been for several other tests but nothing obvious shows up... I am at the end of my tether and would appreciate some feed back

Anonymous said...

I had MVD surgery on 11/30/09. I am still having slight headaches and have a lot of numbing on that side of my face. All in all, it was a huge success. There was one blood vessel embedded into the nerve, so my doc told me "its like when you move a piece of furniture, and there, the rug underneath needs time to go back to normal". The slow recovery thing what I'm trying to remember. Slow but steady and pain free. So glad to hear you are too.

Anonymous said...

Donna. So glad things went well and you are better than ever. We prayed for you!
Steve and Janet Ray

Anonymous said...

My mother just had MVD two months ago. She says the pain isn't as horrible as before the surgery. But she is still experiencing uncomfortable pain and numbness and depression. Somedays she wishes she wasn't alive. Is this normal, should she still be having these sympotoms? Any words of advice as what we can do?

Misty said...

From what I've learned, MVD doesn't always cure the pain. I am still having pain and am back on the medication. My pain isn't as great as before and the medication is helping the bouts of pain I still experience. About every 3 months I get pain so intolerable, the only way to get rid of it is a visit to the ER for IV pain meds.

Unfortunately, it is normal to still have TN pain after a surgery. Sometimes the pain is cured right away, sometimes it takes several months, sometimes it's just reduced. I suggest talking with her neurologist regarding her pain. There are more approaches. She may return to medication or her doctor might offer other forms of surgery such as gamma knife. Being 27, I chose to "save" those other surgeries for the future when medication is no longer working again. There are only so many times you can have those surgeries and the more you have, the less of a success rate. Please email me at misobrien at yahoo dot com if you have any more questions.

Melodye said...

I just found your blog. I had MVD on the 15th of March. My recovery has been up and down. I just think I didn't know what to expect ~~ the TN pain IS gone, but I have pain in my neck, head and jaw... I thank you because you have sort of confirmed that it is okay for me not to feel 100%!!

Melodye
http://www.melodyejoy.wordpress.com/

Anonymous said...

my father who is 82 had MVD about two weeks ago. His pain is gone, but he is experiencing extreme fatigue and extreme confusion. Still waiting for some test results, but cat scan shows that the surgical site appears fine and there's not fluid causing these symptoms. It could be that he is older that it is taking longer to get back to normal, but his confusion and short term memory loss are concerning. Anybody have this as their experience?

Heather said...

I had MVD surgery on 11/15/10. That was 12 weeks ago, tomorrow. I have had NO TN pain since the surgery. I have only in the past 4 or 5 weeks started to regain my short-term memory, and I have a CSF leak preventing a lot of my "normal" activites. However, it's only been a short time, and with a 2-yr-old son and husband that travels, I'm afraid I haven't been as "restful" as I probably should have. When talking with my dad who is a 4-year stroke survivor, we have many of the same issues regarding balance, vertego, quick-tiring, etc. I'm 34 (for one more week) and only started with TN on Palm Sunday weekend last year. I've been completely off all drugs for 5 weeks, today. Since stopping everything, my memory has come back more quickly. I'm really ready for the vertego and back of head pain and discomfort to stop so I can get a full night's rest. (sleep is difficult for an already insomniac!) However I had the best care at Vanderbilt University Medical Center, and would reccmmend their neurosurgery clinic to anyone! I once heard that FULL recovery can take up to 6 months.

I wish everyone the best!

Melodye said...

I posted a a month post-surgery and reported that my pain was gone. Unfortunately it is back. What I am finding, however, is that I CAN mostly control it with my pain meds. However, the sharp, stabbing pain is disconcerting and discouraging. I am almost afraid to go to see my neurosurgeon... :-( I need to make an appointment.

Melodye
http://www.melodyejoy.wordpress.com

mary Lou said...

I had MVD surgery about 6 weeks ago. It didn't work at first. The pain is just now calming down. Has anyone experienced an itchy scalp? It's driving me crazy? I had my surgery in Pittsberg. Im still numb in parts of my face. I'm just giving it time and praying that it works.

Anonymous said...

I have just been diagnosed with TN but have dealt with the excruciating pain for about a year now. Nothing has worked with the pain. I have tried every medicine available and the pain is horrible. Neurologist is now suggesting surgery. It all sounds so scary. But can you tell me how you are doing now? Do you think it was successful? At this point I am desperate. I am 35 with 3 kids and they need me. I can't be bedridden my whole life! Anyways, anything you can tell me would be if great comfort.

Thank you,
Nicole

lorie gunter said...

12/16/12 I have been diagnosed with TN for about6 months, but suffered with it for yeas the worst the past year. I am scheduled to see a neurosurgeon next month. It can not come fast enough!! The meds keep me like a zombie and do not hold me on pain relief. I will try to keep everyone updated as I go. please update if you have had mvd. Thanks and God bless

Anonymous said...

June 2007 I had MVD surgery which was not at all like I had been described. 4 months later I had a "re-do". What I mean is, the surgery had to be done again. After the original surgery, I had a a new set of problems in additon to TN (ie. balance/gait disturbancesm,loss of hearing, right-side facial paralysis, problems with vision, speech, swallowing, vibration, etc.) In additon, the right side of face less than attractive due to paralysis, swelling, disfigurement. After 1st surgery, I called surgeon's office over & over again with concerns (fears). Each time I was told things would improve in time. At first they said 6 weeks, then 2 months, then a few months, 6 months, give it a year, can take 2 years. Eventually I realized they don't really know. Finally, they had me come back to see them & at that time a 2nd surgery (re-do) was deemed necessary. The 2nd surgery wasn't quite as difficult (no ICU & xtra days in hospital) & there was some improvement,, however, I still have many problems along with TN I had before MVD. The biggest problem is the surgeries were 6 years ago. I still hope to get better, to be somewhat normal but I have no idea what to expect (if anything). I have accepted how I look, I just don't look in the mirror but problems with balance, gait, speech,along with 24/7 TN pain & pain at incisional site, scalp pain, jaw & neck pain,etc has taken it's toll on me. The worse thing, though, is I cannot sing & play piano like I did before surgery. 'Quality of life' ... I have none...Help?

Anonymous said...

On April 17, 2013, I had my MVD surgery. Was in ICU for 3 days and recovery room for 2 days. Came home and on April 30th my nose started running so I went to the ER and was sent home. I was told that it was a cold to see my primary care physician. On May 3rd I saw my doctor and was told to go to the hospital...it was spinal fluid, not a head cold. Was in surgery the next day! Put in ICU for 6 days and recovery for 2 days. Then, off to rehab for a month. I am home now and regreting having the surgery. I have been suffering from dizziness, head pressure, blurred vision, total deafness in right ear, deafness in left ear, unbalanced with verdigo, numbness in face and mouth - tongue and teeth. Visited an ENT specialist today and was told to see my neurologist. Who I had seen before and was told to give it time and to take an antidepressant. Well, it has been over 4 months now and my quality of life is...ZERO. I obviously can't drive any more or even walk any where. So, exercise has been out of the question. I am miserable and looking for answers. If you have had any of these symptoms, post op, please let me know.

raja said...

Hi,

My father had MVD surgery on jan 17th 2014 and he did not have any pain up to march end but after 2 and half months, He is getting the pain again in. I dont know why it is coming again. Can anyone tell me what is the permanent solution for MVD?.............

Misty OBrien said...

Raja - From what I have learned there is no definitive cure for Trigeminal Neuralgia and the treatment options are not guaranteed. Two months after my MVD surgery I relapsed into pain. Prior to the MVD I was in pain every single day. When I relapsed, I had an attack that lasted 3 days to a week. I finally broke down and went to the hospital for IV Dilaudid, just to try and get relief. It didn't take away the pain but it sure made it so I didn't care about it. I increased my gabapentin for awhile and as the months and years passed the attacks increased for awhile but then peaked and slowly decreased. It has been over four years since my surgery and my attacks are infrequent. Most of the time it's only some minor burning pain and once in a blue moon (usually during an illness or high periods of stress) I get the ice pick type pains but overall I am in a good place. I don't even take my gabapentin regularly anymore. I hope your father get can some peace. He needs to see his neurologist as each case is unique. Take care!