We are patients living with Trigeminal Neuralgia, here for your support.

16 yr old daughter still having severe pain at incision site 6 weeks after MVD surgery

My daughter had MVD surgery 6 weeks ago, but she is still having terrible pain around her incision site. We made a trip back to the neurosurgeon a couple weeks ago and he said everything was fine and that she is just taking a while to heal. They cut her Hydrocodone from 10/500 down to 5/325 and the lower dosage isn't helping her at all. PLEASE NOTE*** I understand the risks of dependency. I closely monitor her dosage and she does NOT abuse her medication. In fact, she's sick of taking pills, period! But what am I supposed to do when she's in severe pain??? Why should she have to suffer just because she's a slow healer??? She is still in an enormous amount of pain and it is all stemming from the incision area. The incision itself is healing beautifully, but the pain won't let up. I am trying to get her back on the Hydrocodone 10/500 pills because I can't stand seeing her suffer. She and I have both been up the entire night because her pain has made it impossible to sleep. I eventually told her to double up on the 5/325 pills and she FINALLY fell asleep after 2 hours. Does anyone have any idea about what could be going on? Why is she still in so much pain 6 weeks after the surgery??? The TN pain is gone, thank God, but now we are dealing with another type of pain. Does it ever end????

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Replies to This Discussion

Permalink Reply by Jackie on February 2, 2012 at 7:01am

I have asked Red our site Analysist to take a look at this, sorry to read about the difficult time for you both, Jackie

Permalink Reply by Mommthekid on February 2, 2012 at 7:20am

Thank you, Jackie. Sorry for all the multiple posts. I'm learning my way around and am not sure how things work. Anyhow, I am calling my daughter's neurologist this morning when they open. I am praying he'll increase her Lortab dosage back up....at least it was helping with the pain. It doesn't take it completely away, but it does make it manageable.

Permalink Reply by Richard A. "Red" Lawhern on February 2, 2012 at 8:26am

Hi, Mom. Jackie tipped me that your daughter is having a rough time. If you are in the US, you'll find that many hospitals prominently post notices to patients that they have a RIGHT to adequate pain treatment -- and your daughter isn't getting that. One precaution, however: she may need to be seen again by your neurologist or the surgeon, to evaluate whether her pain is a consequence of a slow-healing incision, or might instead be an outgrowth of damage to the occipital nerve during the surgery itself. One way to test this latter possibility would be to put her on a short course of an anti-convulsive drug like Tegretol or Trileptal. If she responds positively within 48 hours to one of these meds, then most neurologists would believe that some form of lingering nerve damage in the occipital region is likely involved.

Regards and best,

R.A. "Red" Lawhern, Ph.D.

Resident Research Analyst, LwTN

Permalink Reply by Mommthekid on February 2, 2012 at 8:40am

Hi there. We are in Florida, so yes, we are in the US. I am waiting for a callback from my daughter's neurosurgeon to see what he recommends. I'm just trying to figure out if it's possible that she is a slow healer as her neurosurgeon suggested during our last visit with him. I have read a ton of stories all over the net about MVD recovery and I haven't seen much about long-lasting severe pain at the incision site. My daughter said it's not the actual incision itself, it's whatever is going on underneath the incision. I know the surgeon didn't use a metal plate to cover the hole that was made in her skull. He said muscle would grow to cover it. I'm wondering if that has something to do with it? Maybe the muscle is taking awhile to grow and protect her skull? I am just throwing possibilities out there. I really don't know what to think. All I know is that the kid is in pain and I can't just sit here and watch her suffer.

Permalink Reply by Richard A. "Red" Lawhern on February 2, 2012 at 8:48am

Your daughter has an uncovered OPENING through the skull bone???? That sounds more than a little odd to me. Please discuss this matter with her neurologist in depth, and seek his/her opinion. Regards, Red

Permalink Reply by Mommthekid on February 2, 2012 at 8:55am

That's what I was told. I asked if they were planning to use a metal plate on the hole in the skull or what they use to cover it and they said muscle would grow and close the hole up. Would you say it is typical for most neurosurgeons to attach a metal plate before closing the incision and stitching it up?

Permalink Reply by Richard A. "Red" Lawhern on February 2, 2012 at 9:10am

I'm not sure what is "typical" in current practice. I do know that when MVD was first popularized in the 1980s, some surgeons used a metal plate and others reinserted the plug of bone removed when the incision was first made. I have asked a neurosurgeon acquaintance for his opinion on this thread, and will let you know whatever I hear back.

Regards, Red

Permalink Reply by Mommthekid on February 2, 2012 at 9:12am

Ok, great! Thank you very much for all your help. It is greatly appreciated. :)

Permalink Reply by Andy Anthony on February 3, 2012 at 12:13am

Hello,

I am glad to hear that the TN is gone, that is really the most awesome part as you look forward past this other pain.

I am no where near having any knowledge about medical stuff (disclaimer) However, having the pain in that specific area after so long is unacceptable (IMO). There is absolutely no harm in getting a second opinion by going to another Neurosurgeon. I would in a heartbeat. WHY? Because MVD is essentially brain surgery and when you mess with your brain and the invasive entry to the brain, you can NOT risk there being something that may cause further injury because it is left alone for so long (despite the healing process) your current doctor states. At minimum I would ask your current doctor or 2nd one to do an MRI or similar to take a look at the inside part of that incision. For the record, I have also had the MVD performed many many years ago for my TN. The pain from the surgery as a whole was gone withing 4-5 days, with only mild headaches for another week. I pray you will find relief soon for your daughter. God Bless you both,

Sincerely,

Permalink Reply by Linda Kindle on February 13, 2012 at 10:07am

Hi, I just read your post, and I had an MVD done and I do not think pain in the incision area to this point would be normal. I had some pain, that was controlled mostly by hydrocodine and mostly by extra strength Tylenol, but, if it is that severe there could be something else going on. One girl on another support site had a similar problem following surgery and about a month later they found she had a CSF leak, in which, I am not positive, but, I think they did a spinal tap on her. I would definitely be concerned if my surgeon treated it in this manner. Three months following my surgery I awoke with pain in the area and was told to go to the emergency room for a cat scan and then my neurologist was on the phone telling them what to do. Mine wasn't anything serious, sometimes he said while the bone is healing (and my surgeon used the bone and a plastic like shield which was screwed on) it could do this, and I had been sleeping for several hours on that side. But, I would ask to have a cat scan done and an MRI and be careful going to other surgeons first, just be demanding for tests and answers from your Dr. first.

Good Luck to you and your daugher,

Linda

Permalink Reply by Ree on February 15, 2012 at 12:41am

Hi.

Im from Australia and i know even in different states her Nuros have their own ideas and plans on the best way to do the MVD surgery. i had my MVD at the age of 34 in 2007. i have had massive complications after my surgery due to infections. my surgon put the bone plug back into my skull hole.

Firstly i developed a golf ball size of fluid and the bottom of my incission sight about 1 week after, which a nurse at emergency pushed on and it disappeared never to be seen again, 1 week later i then developed Bellspalsy (paralaise to the face sorry spelling not good today). It lasted for about 2 weeks to the day and then i started to lose a fluid out of my scare, which showed infection. i was put into hospital for a week on high levels of antibotics, it seemed to calm down, 2 weeks later i then started to have like a clear yellow jelly come out of the top of my scare. I was again raced to hospital where they then took me back to surgery and removed the skull plug and cleaned my wound because the skull plug had died. my health finally inproved but fatigue was a massive factor, the antibotics really stripped my body.

20 months later i then got massive headaches. so i had to have another MRI done and they discovered my dura and muscles had attached themselves to each other, so off to surgery again to put in a plate to separate them both. After the surgery they advised me that they also used bone cerment to cover the holes in the guaze like titanium plate. my fatigue today is still up and down because the infection they say lives in the bones cerment. I havent gone back into sergury to have a different plate in it yet but its not ruled our in the future.

I then changed my Nuro and got a second opinion who has helped with the infection being identifed before i needed more surgery

So my advise to you is get a second opinion, or your daughter could end up by being very sick young lady that could have been fixed much much earlier. Have your daughter have blood tests done cause her white blood cells will but massivly high and if they are then have further tests done

i wish you all the best and you are in the right place to get support through this tough journey

Permalink Reply by cargra on February 15, 2012 at 8:18am

Hi,

I had my MVD last June. It was followed by complications and leaking CSF...I finally had a surgical repair done the end of July. I have very similar complaints now as does your daughter. It feels like it just hasn't healed correctly. I get sharp pains sometimes that feels like someone is sticking a very large needle into that area. The incision also looks good but the bone around that area sometimes feels tender to touch - sometimes the pain feels "cold." The whole area is extremely stiff - and it is so strange to have pain and numbness all at the same time. This pain is pretty much constant.

I also have no plate covering the hole in the skull - originally I did but they needed to remove it with the 2nd surgery - the muscle is supposed to provide protection.

Unfortunately I still have the TN pain so not only am I still on all the meds I was pre-op, now I have had to increase them. I saw a new neurologist recently to manage the meds and he thinks I now have occipital neuralgia from damage to the nerve during one of the surgeries and that this is what is causing all the symptoms at the back of my head. It sounds to me like that may be what is possibly going on with your daughter too and I feel so terrible for her!

I have decided that I need another opinion on this whole thing so have an appointment the end of the month with another neurosurgeon....I wish her all the best!!!!!!!