Hi! I had my MVD on July 9. My neurosurgeon did not find any decompression, so he just massaged the nerves and stapled me back up. Here's the question I really want an answer to- does the fact that there was no compression perhaps mean I do not have Geniculate Neuralgia? As I understand it, this is one of the defining characteristics of TN or GN. Does this mean I in fact have something else? Any insight would be greatly appreciated!
I had severe TN syptoms on my right side and my MVD surgery and MRI showed very little compression. The MRI shows a very large compression on my left side but I have no symptoms on that side. I still have pain after my MVD surgery which was 4 weeks ago but there are many improvements as well. I suspect I did not answer your ? But that is the best answer I can give.
Here’s the thing RueAnn, in my opinion…
No compression does NOT mean NO TN
Compression does NOT mean TN.
Decompression (MVD) on someone with TN does NOT mean CURED.
Decompression ( MVD) on someone with TN means CURED.
NONE of it makes any sense…does it?
Below is a list of “known” and “suspected” causes…
Compression is ONLY a suspected cause…if it was a known cause it would cure everyone with TN whose nerve was compressed.
Until they find a cause for those of us with TN who do not have a tumour , MS, AVM or physical damage from injury, dental surgical or infection…there will be no cure.
There are many people walking around with compressed cranial nerves in their head and they have NO TN.
We need more awareness and funding to find that cure, I believe it will happen in our lifetime.
Huge (( hugs )), Mimi
*************
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.
Mimi, you are such a wealth of information. I know I can count on you to provide solid insight. It seems that TN is quite a confusing condition.
Amen to that Mimi. There is so much misconception out there with people AND with doctors. Ive had people ask me why im not cured since i had MVD. My neurosurgeon did say basically the same thing as you about nothing meaning nothing concretely. Every person is different. every sit is different . every TN is different. What I think they should be telling people is that the rest of their life will be spent managing their situation and pain. Not in a negative way, because some of the procedures do work or help for a period, but in a realistic way so people know what to expect so they dont have these false perceptions. its really hard physically and emotional on the body to have such black and white thinking. ill be fixed, not fixed, cured or not cured. so now not only do we have the pain to deal with , we have the rollercoaster of shock and disbelief, happiness, depression etc....we still will have these emotions, but being prepared with the knowledge of the possibilities will make it so much easier to accept them when they happen. Acceptance is one of the hardest thing to overcome with any chronic illness, so you might as well prepare them from the start. Wow! I certainly didnt mean to get into all of that.Lol. I guess i had something to say that was trapped in there. Hahah! Sorry Mimi. i guess i should have put it as a reply to RueAnn's message. anyway, i hope you are doing well. I dont get on here much, the computer screen causes me pain. When are we going to take that trip to Hawaii?
Mimi said:
Here's the thing RueAnn, in my opinion....
No compression does NOT mean NO TN
Compression does NOT mean TN.
Decompression (MVD) on someone with TN does NOT mean CURED.
Decompression ( MVD) on someone with TN means CURED.
NONE of it makes any sense...does it?
Below is a list of "known" and "suspected" causes....
Compression is ONLY a suspected cause...if it was a known cause it would cure everyone with TN whose nerve was compressed.
Until they find a cause for those of us with TN who do not have a tumour , MS, AVM or physical damage from injury, dental surgical or infection.....there will be no cure.
There are many people walking around with compressed cranial nerves in their head and they have NO TN.
We need more awareness and funding to find that cure, I believe it will happen in our lifetime.
Huge (( hugs )), Mimi
*************
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.
Thanks Patty, as a moderator I’ve been trying to copy/paste things to use here as I research…it is super confusing! I get so frustrated many a time, lol. Hope you are well!!? xox
Jacqueline!! I miss you!! So nice to see your post! Hawaii sounds great anytime!!! Talk soon, I’ll email you! Xx
RueAnn, how are you feeling? (( hugs))
Mimi xx
Patty,
You did not answer my question, but truly there is no answer and what you said does help. Thank you very much!
Rue
Patty said:
I had severe TN syptoms on my right side and my MVD surgery and MRI showed very little compression. The MRI shows a very large compression on my left side but I have no symptoms on that side. I still have pain after my MVD surgery which was 4 weeks ago but there are many improvements as well. I suspect I did not answer your ? But that is the best answer I can give.
Hi Mimi!
I am actually worse. I couldn't believe my GN pain could get worse, but this week has been terrible. What upsets me the most is despite all my calls to my neurosurgeon's office they have returned none of my calls to explain if this is normal, unexpected, needs attention, etc. Previous to this I really liked my neurosurgeon and his staff. Now I feel confused and upset that I have not received an answer to my calls. I've considered going to the emergency room, but it's a logistical nightmare with my family. I am getting a referral for a second opinion. The pain is incredibly awful. Turning to essential oils, anything I can think of that may help a bit. Thanks for writing, and for all of the helpful information. I wish there were options, even if there were not answers. I suspect my GN is related to a tooth extraction gone wrong, since that's when this pain started, but knowing the source doesn't help solve the problem. I do know I will never get another tooth extracted there again though!
Thanks again Mimi!
Hugs,
Rue
Mimi said:
Here's the thing RueAnn, in my opinion....
No compression does NOT mean NO TN
Compression does NOT mean TN.
Decompression (MVD) on someone with TN does NOT mean CURED.
Decompression ( MVD) on someone with TN means CURED.
NONE of it makes any sense...does it?
Below is a list of "known" and "suspected" causes....
Compression is ONLY a suspected cause...if it was a known cause it would cure everyone with TN whose nerve was compressed.
Until they find a cause for those of us with TN who do not have a tumour , MS, AVM or physical damage from injury, dental surgical or infection.....there will be no cure.
There are many people walking around with compressed cranial nerves in their head and they have NO TN.
We need more awareness and funding to find that cure, I believe it will happen in our lifetime.
Huge (( hugs )), Mimi
*************
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.
Aw RueAnn, I’m so sorry to hear this…are you off all meds? Can you get in to see your neurologist?
I have heard of others who’s pain worsened and then gradually subsided…I hope that this happens for you, most NS will say it can take a full year to heal and things can change!
Most important right now is getting your pain under control.
Since my MVD I went from 3 meds to 1… But I’ve had to increase my Tegretol back up …I’m at 1400mg ( pre MVD was at 1600mg) the last 2 months my pain has been changing and increasing…so today I just started adding the Baclofen again…( neuro gave me the prescription in September in case this happened , but I’ve been trying not to add it…feels like steps backwards…sigh)
But it is what it is…
(( hugs )) Mimi