I had MVD for TN about 11 months ago. The surgery was a success in that I immediately did not get the electric shock after surgery. However, it left me with complete numbness in the right side of my face. It took a very long time for the numbness to go away, particularly in the mouth, lips and teeth area. About 4 weeks after MVD I noticed movements in my forehead, then it went to my cheek. All this was good because I felt my nerves were walking up. The movements didn't hurt. To make a long story short I probably gain all my feelings back after 8 months, except for lips and teeth area. However, after 4 months the movements went out of control. It kept spinning, twisting and pulling. It hurts so bad that I had to go to the ER one night. Again, my neurosurgeon said that's normal and give it time...nerves are waking up.
This 24/7 constant painful movement never stop. I am now diagnosed with hemificial spasm because you can actually see my mouth and lips move on it's own. I still feel these nerve fibers or facial muscles continuously running around my face and mouth. I've been on Tegretol, Flexiril, Baclofen, and Clonazepam and nothing takes the pain away. I feel like a zombie on all these meds. I read that the TN nerve is the 5th nerve and our facial muscle is controlled by the 7th nerve. Most likely an artery is trapped or wrapped around the 7th nerve??? Does this mean I need to have another MVD surgery for this? I'm really scared. Has any one had this happened to them? Has anyone had two MVD within the same year? Who is right? My neurosurgeon who says this is normal and that nerves are waking up? Or my neurologist who says I have hemifacial spasm? The movements now travel from my mouth and lips to my temple and to my eye then back around in a loop again...this is all day every day. I'm so frustrated and scared. HELP!!!!
Also, if any of you is from Houston, Texas, who should I go to for this condition?
Hi! I just read your post and I was curious so I looked up what you have and it said botox injections can really help- here is what I found-- -Botulinum toxin is highly effective in the treatment of hemifacial spasm. It has a success rate equal to that of surgery, but repeated injections may be required every 3 to 6 months. The injections are administered as an outpatient or office procedure. Whilst side effects occur, these are never permanent. Repeated injections over the years remain highly effective. Whilst the toxin is expensive, the cost of even prolonged courses of injections compares favourably with the cost of surgery.[
hope this helps!!! ;-)
Red Lawhern, help please?
While I respect your surgeon's desire to reassure you, I think he may have misspoken, however unintentionally. Complete facial numbness is a fairly common side effect from MVD (like maybe a quarter of all those in whom the operation is initially successful). While it wears off over a period of months in some patients, it seems to be permanent in others. It's not always clear what distinguishes patients in these two groups. But it seems plausible that longer lasting numbness may be related to more severe damage to the myelin layer of the Trigeminal nerve from the compression, or from "excessive" manipulatoin of the nerve during surgery. A lot of neurosurgeons consciously try to avoid pulling at the nerve during MVD, lifting it only enough to detect and then correct the vascular compressions which have affected it.
Hemifacial spasm is fairly common in TN patients, and appears to result from the same mechanism of action: arteries or veins compressing the 7th cranial nerve rather than the 5th. While Botox does help some patients with HFS, and is worth trying, it doesn't help others. I candidly doubt the statistics quoted. For type I TN, about 90% of MVD procedures are initially successful, and I've never seen numbers on Botox that approach anywhere near that level even for pain relief over three or four months. I'll investigate the link you provided, Tacocat.
Although MVD isn't a trivial operation, I've talked with maybe two or three hundred patients during the past 20 years who have had more than one MVD and been greatly helped by the second or subsequent procedures. I think the "track record" on numbers of MVDs is four, if I'm recalling correctly. And yes, some of these patients had two MVDs in a year -- in most cases to complete the decompression after a teflon pad slipped out of place, or to look for additional compressions not detected in the first procedure.
I hope this is constructive, Nina. Remember please that while I'm very experienced in the support of chronic facial pain patients, and moderately well read in medical literature, my technical training is in engineering and information mining, not medicine. I'm reporting to you what I've read and what other patients have told me. Feel free to print out and take this posting with you for detailed discussion with your neurosurgical team. They are your first and more authoritative resource.
Go in Peace and Power,
Red Lawhern, Ph.D.
Moderator and Resident Research Analyst, LWTN
Thank you Red and tacocat for replying. I've read that a person should not have Botox around the mouth/lips area for hemifacial spasm and that's where my main movements are. The movements can be slow at times with pulling and twisting sensation and travel to my cheek, temple and ear areas. When the movement is slow it doesn't hurt, but annoying, but sometime for whatever reason the movements start twirling faster and faster to the point that my mouth and lips are on fire. I don't have the spasm of blink of the eye or twitching of the mouth. If you look closely you can tell my lips are moving but not the constant twitching like you see on youtube. I'm not sure if it will develop to that in the future. I surely hope not.
Do you know if hemifacial spasm hurt? I'm just frustrated because I didn't have this problem prior to MVD for TN. My neurosurgeon kept on putting me off saying this is normal and give it up to one and a half year. That's a long time to be in pain when no meds can control the pain. I actually have to take narcotic drug, Clonazopam, to get 5 or 6 hours of sleep then I wake up because of the movement and pain in my mouth/lip. Why does it move 24/7 non stop?
There is no single pattern of pain shared among all hemi-facial spasm patients, Nina. In some people, movement seems constant, and in others there are intense periods with quiet in between. Many do experience pain during spasms, but not all. And when pain occurs, it can have different character in different people. As for meds: if you haven't been tried on Amitriptyline or Nortriptyline, they might be worth investigating. Either alone, or in combination with Baclofen or Flexeril.
I signed on for help for an issue I have but saw your post and thought I would drop a note. I am 8 months out and had similar issues. Working with an Oral Maxilfacial Surgeon and he prescribed 8 mg of Cyproheptadine at bedtime and Lamictal 100 mg 2 times daily. So much better. Twitching is minimal and mostly when overtired or stressed. The running wormy feeling is rare and I feel better. Hang in there. Hope this little bit helps.
You and I corresponded before when this movement just came about. I often think of you and hope your situation is better. Did your facial movements move constantly like non stop? That's how mine is. It never stops and the muscle tense up quite a bit which leaves me with pain. I have to knock myself out with drugs or I can't sleep. What did your Oral Maxilfacial Surgeon diagnose you with? My neurosurgeon seems to blow me off and kept on saying that this is normal. I just had another MRI and the result is normal so no one knows what it is. I have done a couple of acupunctures and he said he has never seen nor heard of movements in the lips/mouth going 24/7 either. None of the meds I take can stop the movements.
Nina, I initially had a Gamma Knife. When I finally had the MVD the surgeon found a large blood vessel had dropped below the nerve and looped up on top of the nerve itself. Unfortunately, the radiation caused the blood vessel to stick to the nerve. Removing it took 51/2 hours. I was left with a bad case of Trigeminal Neurapathy. It’s difficult to treat and heal. I don’t get electric shocks any more, but I’m numb. I had terrible issues with burning gums. The new meds help. I like my new doctor. He’s very hopeful. I also have a nasty case of right side Rosacea. Perhaps too much radiation. You think? With this disease you put one baby to bed and two more wake up. Best wishes.
I was completely numb, but now I got 90% back. The only place still somewhat numb are mainly my lips and partial teeth. I just get crazy movements around this areas that are painful. I actually can feel the nerve fibers and muscle contraction movement all around my lips, mouth and sometime it travels to my cheek, temple and inner ear. It's very distracting.
I hope you will recover with your situation. I am currently taken six weeks leave of absence hoping the nerves will calm down and I try not to get too stress out. So far, it's not working.
Stay in touch and let me know how you do.
Hmm this is a thorny problem. I would see if you have options then look at perhaps a different Neuro surgeon to get their take on it …some docs like to just go in to poke around . Remember docs get paid either way regardless if you are healed or not
I did a lot of research and I don't think I have hemifacial spasm as my neurologist had diagnosed. I think I have Dystonia (involuntary movement, muscle spasm in my mouth). It is so frustrating to see all these specialists and no one knows what's wrong with me. I am scheduled for Botox injection today, but am very nervous because I don't want to look lopsided. I heard Botox shouldn't be injected near the mouth area, but I'm going to take that chance to see if the movement/spasm will stop.
I would never guess having MVD to solve my TN issue will lead to this Dystonia problem. Very disappointing because there's no cure for Dystonia.
I have had Anesthesia Dolorasa since a radio frequency rhisotomy done is late December. I have complete facial numbness on the left side and although the procedure took care of the TN shocks that had left me unable to each or talk the AD has resulted in a whole new set of issues.
I have tried reverse mirror therapy and other alternatives but I think I have finally come to something that takes my pain in most instances from a constant 8+ to a 3-6 range. And to me that is a miracle!!
I am on 400 mg of gabapentin 4 times a day and baclofen 10 mg per day but I felt the pain had changed from spasms to constant muscle full tightening which was causing me to aspirate at times when I slept, constantly drinking through a straw and only eating soft food or things cut into small pieces was my only way to eat. So this is was has worked for me-I changed to 2mg of diazepam 4times day and cut the Baclofen back to 10 2x, 5 2xs and then use the following LED wand on my face in the four most painful areas for 5 minutes each, twice a day.
I wear the goggles that do not let light penetrate them to make sure I am not negatively affecting my eye that I have no feeling in. What I think the trick is is that the diazepam and LED light allow the muscles to relax and release the lactic acid that has built up from the muscle tightening. When I'm done my face is still numb and tight in some areas but I swear a TRUE miracle!!
Hamboy -- please read and heed our mission and rules statement. Your posting is clearly SPAM on behalf of a specific company. Likewise, there is little or no evidence in medical literature that increased blood circulation in the face has any lasting effect on TN. If this type of posting is repeated, you will be suspended.
Thanks for the reply. I have looked into the LED Pain Reliever and very tempted to buy one although the cost is $130 USD. How long did it take before you notice the LED brush to work?
I had BOTOX injections 2 weeks ago and that didn't seem to work at all; although, the doctor did mentioned he only gave me half of what I really needed since it was my first time (70 units of botox). I have a follow up appointment with him on July 22 to inject more if needed, but I'm really afraid. I can tell my smile is a little crooked at this 70 units. I can't imagine how crooked it will be with the full dosage.
I can feel my facial muscle near my mouth moving and contracting 24/7. My lips are moving on its own which can be embarrassing. Please let me know how soon the LED brush works for you. I think I will go ahead and order it.
I responded to Hamboy before reading your reply. I am so desperate to find pain relief that I went ahead and ordered that LED Pain Relief Brush. Well, I hope it will work for me.
Nina, I do not believe that surgery for muscle activity generated by the 7th cranial nerve would be like the decompression surgeries generally performed for TN. I just read over the guidelines for this site, and they say not to give medical advice. I have no idea what medical advice for hemifacial spasm would sound like, so I think I'm safe, here. What I would suggest is getting a consult with your neurologist to find out who in your area might be able to tackle a blood vessel problem around the 7th cranial nerve. The other thing I could offer is a whole lot of prayer that you find an answer to your suffering. I'm sorry that you underwent the risk of brain surgery just to emerge with yet another neurological malady.
Janet (a/k/a Emily's Mom)
Janet. I suggest you search on the combination "microvascular decompression" and "hemifacial spasm" at pubmed. Use of MVD in this disorder seems relatively common.
Red-I an sorry if my post was outside of the published guidelines, but like other chronic and acute suffers alternative treatments allow a sufferer to "own" their journey and trying to describe the device was difficult so I just cut and pasted the information-which I now understand was wrong.
The use of a small, 2mg, dose of diazepam and hand held ultraviolet light treatments twice a day has taken my life from a situation where I could not open my mouth more than a few inches and being in constant spasm pain that had turned my face into what felt like painful stone to almost feeling normal again.
This change in treatment has taken my pain level from a constant 8-10 24/7 to a manageable 3-5 for over a week now. I know that is not a long time to most, but to a chronic sufferer it is a real miracle. I will not include any information about specific devices but will try to let other sufferers know of possible alternatives that may make a difference for them as well.
I have had a MVD and unfortunately had the shocks come back just 3 weeks after the surgery and then suffered a cerebral spinal fluid leak at the wound site three weeks later that took over a month to get under control. My radio frequency rhisotomy was done in December after I had been hospitalized for over a week over Christmas while they tried to stop the constant shocks that were restricting my ability to eat and talk and the effects on my heart were becoming a concern as well. The RFR was successful in ending the TN shocks but left me with AD. I continue to follow my regime of 400 mg of gabapentin and 10 mg of Baclofen 4 times a day but that did not stop the constant pain. My doctors at Rush have been superb and I have worked closely with them through these issues.
I recognize that each person's issues are unique and different treatments have different successes. Statistics don't matter when you are the one in pain-If it works that is wonderful. If it doesn't, you have to look for another treatment.
Again I apologize for adding the commercial info I did but it was a rookie error with only the intention of getting information that has worked for me-a long term sufferer out to others looking for relief.
Here's to hoping all of us find a way to handle what God had given us so we can help others. Prayers and blessings
The pain from TN alone is enough to stop the production of dopamine, a key neurotransmitter. The pain will change your mood and alter how well you can focus. Anyone who slips up while under the influence of TN has an automatic pass in my book. You are all wonderful in the support you provide to one another.