Why do you think mvd fail????
Honestly my neurosurgeon flat out stated that the majority fail because they were done by surgeons who dont specialize in them or were done on someone who shouldnt have had it in the first place.
On a personal note, I had one in October, I am 99% pain free, but have an underlying disorder that is causing it to come back, I am waiting for treatment to be approved for it. I think some people have underlying issues that prohibit them from getting relief or the surgery working. I was told that once I have treatment the pain I am having will go away.
The key for surgery is to go to someone who has done 100's of the surgeries , that way you are getting someone who knows what to look for in each case...I went to one of the top surgeons in the country for this and it was worth it
Wendy
I have put a great deal of thought into my failed mvd., I can say that I had one of the best neurologists. Dr. Casey, who is also co. author of the book "Striking Back "I knew I was in good hands. At that time he was working out of Detroit receiving hospital.My sister, Tammy took me the morning of surgery. I was so happy to have her with me.She is only 18 months younger then myself. It was one thing I did not want to do on my own. Dr. Casey had talked to me about everything.He had said he was pretty sure he could get the pain in my face and the back of my head. He wasn't real sure about my eye. I was game for anything to be better.He had to remove not one but 2 peices of bone he found one vessel behind the other so he padded both.I had no complications. I did not have to be in the ICU at all and was able to even go home the next day.As soon as all the pain medication wore off my pain was still there,actually somethings were even worse.Where the vice grip pain was in the back of my, that was still there.I also now have bone pain on top of it.Since 2006, was when I had my mvd the pain in the back of my head has been almost constant. I was wanting to know if it was possible the padding had moved? I am sure by looking back at my journals I did not take it as easy as I should have.That would be my best guess as to why my mvd failed. Wishing the best day possible, Dawny (that's what my friends and all the kids call me) (HUGS)
I also had Dr Casey i am 3 weeks post mvd so far so good what do u mean not taking it easy ? I often wonder if i am doing too much but i feel fine i am not doing anything crazy but u am back to doin my everyday things
So u think the padding slipped
maybe they can do another MRI? When i came out of surgery my pain was worse, and I had been throwing up for 18 hrs after surgery (allergic to anesthesia) so they checked my MRI to see if I had dislodged the padding, I hadnt and it took about 2 months and my pain is mostly gone except when this auto-immune disorder flares up, but its 10% if what it was before. I would talk to the surgeons office and see what they say
Wendy/crashgirl
Dawn Monarch said:
I have put a great deal of thought into my failed mvd., I can say that I had one of the best neurologists. Dr. Casey, who is also co. author of the book "Striking Back "I knew I was in good hands. At that time he was working out of Detroit receiving hospital.My sister, Tammy took me the morning of surgery. I was so happy to have her with me.She is only 18 months younger then myself. It was one thing I did not want to do on my own. Dr. Casey had talked to me about everything.He had said he was pretty sure he could get the pain in my face and the back of my head. He wasn't real sure about my eye. I was game for anything to be better.He had to remove not one but 2 peices of bone he found one vessel behind the other so he padded both.I had no complications. I did not have to be in the ICU at all and was able to even go home the next day.As soon as all the pain medication wore off my pain was still there,actually somethings were even worse.Where the vice grip pain was in the back of my, that was still there.I also now have bone pain on top of it.Since 2006, was when I had my mvd the pain in the back of my head has been almost constant. I was wanting to know if it was possible the padding had moved? I am sure by looking back at my journals I did not take it as easy as I should have.That would be my best guess as to why my mvd failed. Wishing the best day possible, Dawny (that's what my friends and all the kids call me) (HUGS)
What causes the pads to move? Can too much activity to soon do it?
I dont think so, from what I was told, my throwing up was so close together and so long it was possible, but Dr. Brown said he really didnt think even that could do it, and when I had the MRI, it hadnt moved.
I was told that it can move over time because of nerve growth or movement of the brain, which is why sometimes after years they need to be redone, or a car accident with extreme jarring could move the pads, but its rare
ayre said:
What causes the pads to move? Can too much activity to soon do it?
I think because type I has an artery as the cause. They see it. They treat it with a pad. The procedure works. When they can't see clear artery involvement ,they don't know what to treat. It also seems that type II may be caused by something that is unknown. They may treat the artery compression but that may not be the cause.
Beano,
There are only “suspected” causes for TN1& 2 …
Compression is a suspected cause for BOTH not just TN1…
The procedure doesn’t always work, that’s why it’s considered only a “suspected” cause.
I have bilateral TN.
TN1 on my right and TN2 on my left…
The very same thing caused each of my different form of TN, in my opinion…just waiting on researchers to figure out what that was…
My MVD for Type 2 TN was partially successful in that prior to surgery my pain was progressive and med resistant, horrid non stop pain 24/7 for 7 months. Now, I get hours without pain!
Below is a list of known and suspected causes:
A blood vessel presses against the root of the trigeminal nerve.
Multiple sclerosis - due to demyelinization of the nerve. Trigeminal neuralgia typically appears in the advanced stages of multiple sclerosis.
A tumor presses against the trigeminal nerve. This is a rare cause.
Physical damage to the nerve - this may be the result of injury, a dental or surgical procedure, or infection.
Family history (genes, inherited) - 4.1% of patients with unilateral trigeminal neuralgia (affects just one side of the face) and 17% of those with bilateral trigeminal neuralgia (affects both sides of the face) have close relatives with the disorder. Compared to a 1 in 15,000 risk in the general population, 4.1% and 17% indicate that inheritance is probably a factor.
POSTHERPETIC NEURALGIA
When chickenpox is contracted during childhood, the virus that causes it, herpes zoster, can remain dormant for decades in the nerve bundles near the spine. The virus will sometimes reactivate, causing the condition known as postherpetic neuralgia, or more commonly, shingles.
In cases of postherpetic neuralgia, the reactivated virus travels around the affected nerve, causing pain. The herpes virus can affect the trigeminal nerve, resulting in postherpetic neuralgia, or pain, in the facial areas supplied by the trigeminal nerve.
Beano B. said:
I think because type I has an artery as the cause. They see it. They treat it with a pad. The procedure works. When they can't see clear artery involvement ,they don't know what to treat. It also seems that type II may be caused by something that is unknown. They may treat the artery compression but that may not be the cause.
I had my MVD 18 months ago. I dont know if I can say my MVD was a failure. The sharp jabbing pain of TN on the right side is gone.
But, after my surgery I woke up with head pain and pressure on the right side. I have this sharp pain on the right side behind my eye , loss of hearing, loss of sensation on right side of my face. There is an indentation, sort of carved out where I had the surgery. the base of my head is so sensitive and tender I can't touch the area.
I was seen by the NS three months after the surgery and he referred me to Head Clinic. I was diagnosed with Migran and put on anti-inflammatory and was said I should be patient with healing process.
A month ago I went to two Neurologist and they insist the surgery was a success and this pain is my head and its just a chronic pain that I should be able to manage with pain killers.
The main question is if the pain is so debilitating then how come I am able to go to work?
Is there anyone with similar situation that has to work? how do you manage this pain and how long you have had this pain?
Thanks so much
I had my first MVD 8 years ago totally pain free for 7years. The pain came back last year first as a 24/7 pain in my face from check to jaw bone with break through pain. Had the 2MVD Dr. was going to replace the padding thinking maybe that is what was causing the steady pain(didn't have it the first time) but the padding and nerve had grown together so he just compressed the nerve with a heated tool. This time it only worked for 2 months.
Yes, I work full time and am so close to just giving up on many days. I work and go to bed. The sun and heat bother me also now and I did a lot of rescue for animal now I've even rehomed some of my animals.
Also, no meds have worked for me or I'm allergic to them.
sara said:
I had my MVD 18 months ago. I dont know if I can say my MVD was a failure. The sharp jabbing pain of TN on the right side is gone.
But, after my surgery I woke up with head pain and pressure on the right side. I have this sharp pain on the right side behind my eye , loss of hearing, loss of sensation on right side of my face. There is an indentation, sort of carved out where I had the surgery. the base of my head is so sensitive and tender I can't touch the area.
I was seen by the NS three months after the surgery and he referred me to Head Clinic. I was diagnosed with Migran and put on anti-inflammatory and was said I should be patient with healing process.
A month ago I went to two Neurologist and they insist the surgery was a success and this pain is my head and its just a chronic pain that I should be able to manage with pain killers.
The main question is if the pain is so debilitating then how come I am able to go to work?
Is there anyone with similar situation that has to work? how do you manage this pain and how long you have had this pain?
Thanks so much