FAILED PROCEDURES

Comment

Comment by Seow W on February 13, 2012 at 4:51am

Lori, buccal nerve block is an injection administered at the gum in your mouth. It helps to relieve the intense pain related to talking or touching your lips. The lower part of your mouth will be numb for about 2 hours. It is particular helpful if one pain triggers another pain and you are in great distress.

Comment by Lori (Lefty) on February 12, 2012 at 10:52pm

Seow Chin Wong - what is a buccal nerve block?  Sorry, I still have so much to learn about these different treatments!  Thanks!

Comment by Seow W on February 12, 2012 at 1:14am

When I had nerve block with steroid injection into an area close to my right ear, the pain went away only for 2 weeks. Then it came back in vengeance to the lower part of my lip. I would not want any of it except buccal nerve block.

Comment by Lori (Lefty) on January 27, 2012 at 11:55am

After my neurologist referred me to a pain management specialist last Friday, (and then the neurologist DROPPED ME as a patient saying he didn't have any solutions to offer me) yesterday I had a nerve block w/steriods injected into the side of my face by the pain man. Dr. - he said it would only be temporary but wanted to help me even for a little while with this horrific pain!  AND he promised to work with me to find something to get the pain to an acceptable level.  The injection gave me some relief in the cheek area (constant pain for me) & the lower lip area.  The pain above me eye came back in the night like a hurricane & I called the Dr. this AM & we are going to start Lyrica to see if it will help some.  The most important thing this compassionate Dr. did was give me HOPE which we all need who suffer from either Atypical (which we believe mine has developed into after my failed MVD in Sept. 2011) or Type I Classic TN.

 

 

 

Comment by Bronwyn on January 21, 2012 at 11:51am

I've been reading through the posts in this group,  and my heart goes out to each of you who are struggling with pain.  I am a fellow sufferer with you.  I had ATN in the early 1970's.  There were no MRIs then, and no compression showed up on the x-rays.  The neurosurgeon felt sure that I did have one and suggested surgery.  He found a vein growing through the trigeminal nerve and a bundle of blood vessels pressing on the nerve. He removed the vein and put shredded teflon between the bundle and the nerve.  He said he was able to make me about 80% better.  It was even better than that, and my pain was so slight that I didn't really notice it. Most of the time I was pain- free. It came back in 2005, and I had gamma knife surgery in 2006.  Since then I have had constant pain in my face and scalp.  I do not have AD.

I consulted a well- known neurosurgeon after the gamma knife, and he said he does not like gamma knife for TN.  He says if it does work, it will not be permanent.  He told me that if I did have another MVD, it would make my pain worse.

 I have tried so many meds for pain, but the only one that has really helped me is Lyrica.  Unless the barametric pressure drops, I can cope well.  Some days I do have to lie down. I really miss  my old life, but I try t make the most of every day with God's help.

Comment by Pat on January 21, 2012 at 8:58am

Lefty, I'm so sorry you're in this place.  I had an MVD that failed and left me with anesthesia dolorosa.  Donna's counsel to find another neurosurgeon is wise.  Before I did anything else, I'd want a diagnosis as to my current state.  If you now have a form of neuropathic pain, such as deafferentation or anesthesia dolorosa as a result of nerve damage incurred during the surgery, then another surgery may not be the answer.  For sure I'd avoid gamma knife and any ablative procedures intended to damage the already sensitive nerve.  If your eye pain is in the form of a ram's head type of pain involving the back of your skull up to your eye, then your occipital nerve is involved, as in occipital neuralgia.  That could be helped with an occipital neurostimulator.  So without a diagnosis proceeding with another procedure doesn't make sense until the mechanism of your pain is better established.  When in doubt, take your time and get more information.  My best,

Pat

Comment by DonnaTn15 on January 21, 2012 at 7:26am

Lefty, I had 2 mvds, and was told that you shouldn't have a second for at least a year. I would suggest to you that you find another neurosurgeon and get another opinion. Find someone who has done alot of these procedures.  Sounds like something went awry here.   I have been thinking about having a third one done, but haven't made up my mind yet.  The less this nerve is touched the better.  I know its only a matter of time before the meds don't work or so we are told.  But when one medicine stops working theres always another one to try or a combination.  If I knew a third one would work for me I would have been there yesterday.  We don't know.  I was pain free for almost 5 yrs with my second one.  I was told by that fact I would have about a 50/50 chance of a successful 3rd try.  The first neurosurgeon I went to wasn't as experienced as he had let on and I should have went with my gut feeling on that first consult, so maybe you need to do a bit of researching on neursurgeons before you decide,  I would be very cautious before jumping into a second one so soon.  Its still very tender back there.  Its been apx 5 yrs since my last and my skin is still very thin around that area.   I wish you the best. 

Comment by Lori (Lefty) on January 20, 2012 at 11:17pm

I had a failed MVD on 9/13/11 & during my 5 days in ICU (high fever, constant vomiting, double vision & dizzyness) I was so sick I wanted to die...after 4 mos. the double vision is gone but I now have constant stabbing pain around & behind the right eye which is the side my TN is in.  My pain came back within 3 wks of my MVD even worse that before...I've tried different antiseizure meds with no relief.  Yesterday I want back to my Neurosurgeon & he said I only have 2 options - Gamma knife (he doesn't recommend) or a SECOND MVD which he highly recommends...I'm so depressed I don't know what to do!  My family (& I) have talked it over & wonder why he would want to do the surgery a 2nd time when I had so many complications & no relief with the 1st MVD!  I've been considering at least trying steriod injections by my pain management specialist - has anyone had any success with these type of injections?  And what do you all think about having a 2nd MVD just5 mos. after the 1st failed MVD?  I appreciate any helpful comments or suggestions!   We are all just really afraid of going through another MVD...

Comment by TommyR on December 16, 2011 at 3:41pm

Radio Frequency Ablation

I am considering this procedure on my right TN3 and TN2. I am most interested in the TN3. My bi-lateral occipital rhizotomies have helped with the TN2 bi-lateral. I am beginning to feel an increase in pain as the molecules in both TN2 and the ON reconnect. I will be having another Rhizotomy within the next two months. It would be great if this procedure works, as well as, the ON rhizotomy. I understand if the procedure works, I may have a large drop in pain from the TN3 for nine to eighteen months.

After having TN and ON pain for a decade, I learned one of the best things I can do is to manage my expectations. To manage your expectations you need to know all possible outcomes. I am interested in any comments, bad or good, experience or knowledge. Thanks, Tommy R

Comment by Richard A. "Red" Lawhern on December 12, 2011 at 8:35am

Donna,

I've talked with a few patients over the past 15 years who have had three MVDs.  But the numbers aren't high enough to establish any reliable percentage statistics.  Anesthesia Dolorosa is certainly nothing to risk casually.  It seems to occur after about 2-4% of first-time MVD operations, depending on who you talk to. 

I admit to reservations about the idea that any surgeon has "perfected" MVD.  From talking with surgeons, I believe that the chances of early pain recurrence after the procedure may possibly be related to the amount and extent of manipulation and handling of the nerve during exploration.  Thus I would suggest that before you make your decision , ask the surgeon for his success statistics for at least the last five years.  What percentage of his patients are pain free at one month, one year, and three years after he has operated? 

Likewise, be aware that a lot of surgeons now discourage the use of the "destructive" procedures (RF, Baloon, and Glycerol Rhizotomy, Gamma Knife, Cyber Knife) after an MVD has failed.  If you can find an acceptable medication alternative, that might be the first direction to check out.

Regards and best,

Red

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