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????

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

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.

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

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.

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

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?

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

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

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,

Me

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

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

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!!!!!!!

Yes, it is brain surgery and it hurts. I had to trade off on pain meds and ice packs at the incision site to keep the pain manageble. 3 1/2 months out I got a site infection flare up that finally revealed so leftover crap at the incion site. Once removed it starte to heal properly, but it still is itchy and sometime (usually) annoying, I have been off the opiates for a few months, but I stayed on them until I was ready to get off. I don't think they really prepare you for the post surgery pain. My Dr. was like " Oh sure,2 weeks and you should be back to work". Uh, no. Try 6 weeks and I still have bad days. Talk to your Dr. about switching meds. I had to switch to Topamax to deal with the headaches I got post surgery. But for me it has stopped the crazy headaches I got post surgery.

BTW, I have the "brain plate" feeling on my MVD side too. I did not get the bone plug replaced. I had a mesh covering with a synthetic resin to cover the hole. Because I use safety glasses, head sets, and headlights at work it feels like it has set into an uneven lump behind my ear and wearing glasses etc can still cause some discomfort. Hope your daughter is finding some relief.

I wanted to stop by and check in. I know I haven't been here for quite a long time, but I am feeling like there's no hope at all for my daughter and I hate to come here and bring everyone else down. Her incision pain eased up for about a month, but it started back up full force again. The pain in her ear has gotten worse, and she's still having all the burning, stabbing digging, etc on the right side of her face, teeth, nose, lip and gums. She is now 17 and we have found a neurologist nearby who has agreed to see her, but it's been the same old song and dance. He put her back on Tegretol 3 weeks ago, and once again, it has turned her into a zombie and is doing nothing for the pain. I don't know why these doctors insist on re-trying meds that have failed in the past. She went in for an MRI yesterday and we have an appt. with the neurologist this afternoon to get the results and discuss more medication options. He told us the last time we were there that injections of some sort *might* help her, but he doesn't do the injections and doesn't know of anyone who'll do them until she's 18! What the hell are we supposed to do now? Spend yet another year watching our daughter live with unbearable daily pain? The doctor gave her a script for Lortab 7.5/500. These help a little if she takes 2 at a time, but the doctor will not give her a higher dosage, so now we are running out of pills, can't even get the ER to give her IV pain meds when the pain is excruciating and pain management clinics won't see her until she's 18. BTW, I should mention that she has Atypical TN, so I am assuming that is why the MVD surgery failed and she is not responding to Tegretol. Topamax has helped with headaches she gets on the right side of her head, but there seems to be no relief in sight for all of the other pain. I hate the thought of her taking pain pills, but what else is there? What's left for her??? We have tried acupuncture, holistic medicine and vitamin therapy all to no avail. She has NO life, sits up most nights in pain, sleeps when she can during the day because she's just so physically and emotionally drained that she can't stay awake. Then when she is awake, she has pill hangovers from the damn Tegretol, so there we go again with the not having a life thing. She can't go to school, can't work, and has no social life. How much more of this can a teenager take??? It has now come to the point where my husband and I have had serious talks about leaving FL and moving to a state where medicinal marijuana can be legally prescribed for chronic pain conditions. This is NOT what I want for my child, but we are beyond desperate. Oh, and I am self-employed, so our insurance is $800/month for her with a $5k annual deductible, so all of these doctor visits, MRIs, prescriptions, etc. is coming out of my pocket....and my pockets aren't exactly deep, so that just adds to the frustration.

Does anyone out there have any suggestions for this family?? Please help if you can. All the best with what has become a nightmare situation.

BTW I have a good friend who does have medical marijuana legally, she says it only takes the edge off for her so I would think hard before moving if it will only make a minute difference. maybe look up the recent discussion here for it as many replied.

Mommie, talk with a neurologist about trying your daughter on a course of tricyclic antidepressant drugs (TCAs) like Amitriptyline or Nortriptyline. This group of meds has a better record against ATN pain, due to a cross action between the anti-depressant effect and an analgesic effect. Doses are generally started at lower levels than normally used against depression itself. Plan B will likely be a booster med along with a somewhat reduced dose of Tegretol. The boosters include Baclofen, Flexeril (muscle relaxant), Valium (mild tranquilizer). Lyrica is also sometimes helpful against ATN.

As far as I know, marijuana doesn't help the kind of chronic high-intensity pain your daughter is experiencing. She may have to be carefully tapered up on a narcotic medication or patch (e.g. Butrans or Vicodin).

Go in Peace and Power

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

Resident Research Analyst

Note: I am not a licensed physician. Your daughter needs the help of someone who is, and who is trained deeply in neurology and pain management. Age 18 is NOT a legal requirement or criterion for this type of help in any US State that I know of. Talk with a lawyer if you need advice on such criteria.

Hello everyone. Wanted to give an update about the visit to the neurologist and what the MRI showed. My daughter has 3 very inflamed, fluid-filled, infected sinus cavities on the right side. One is above her eyebrow, one is under her eye and the other one is behind her ear near the surgical incision site. This may be the cause of the ear pain and the mysterious recurring incision pain. She is on a 10 day course of antibiotics and allergy meds and we are scheduled to go back to the neurologist in a month. He did take her off Tegretol since it isn't working and we are going to try Neurontin AGAIN. *sighs*

I need to bring up the fact that my daughter has suffered from panic disorder from the time she was around 6 years old, so she is already on Zoloft, Klonopin and Xanax as needed. This is another reason why we are limited on some of the anti-depressants she can try for the ATN. We took her off of all that stuff last summer when we were experimenting around with other various medication combos and she became extremely depressed, anxious and agoraphobic. I'd never seen her that bad off and I had to watch her like a hawk. I honestly thought I was going to have to find a psychiatric hospital and have her admitted. We got her back on her meds for panic disorder ASAP and many of those symptoms improved a great deal. She said she refuses to ever go off of those particular meds again. (I can't say that I blame her!) That was a very scary time for all of us!

As far as pain meds and injections, please read up on the recently revised FL laws. As of January of this year, they have made it unbelievably difficult to get pain meds. You have to be at least 18 before a pain management clinic will see you. I don't think that is a law, but these places clearly don't want the added liability of treating a minor. I have called a ton of pain management clinics, explained our situation, and they still will not accept her as a patient. When you ask doctors for pain pills, they all treat you like you're an addict or a drug dealer. I'm so sick of it!

I know several folks who live in states where medical marijuana has been legalized and it has helped my friends with a whole host of ailments including depression, anxiety, fibromyalgia, migraines and other chronic pain conditions. This would be a very last resort for us to move to a state where it has been legalized for medicinal use, but if we can't get the help we need down here in FL, what would we have to lose by relocating to a state with more liberal laws? My husband and I are both self-employed, so we can work from anywhere in the US. I realize relocating to another state is costly and time consuming, but so is constantly going to doctors who refuse to provide you with proper treatment.

In Gainsville there is a Hospital / large center for TN and much experience there !!!!