FAILED PROCEDURES

Comment

Moderator Comment by Richard A. "Red" Lawhern on April 16, 2013 at 2:43pm

Linda,

Balloon Rhizotomy is a peripheral procedure, done with a Canula through your cheek, threaded up into one of the skull cavities through which the Trigeminal nerve passes.  Success rates and persistence of pain relief for Type I TN are somewhat less consistent than with Radio Frequency Rhizotomy, which heats a spot on the nerve by application of a heated needle, rather than crushing a larger spot with the balloon.  I don't recall seeing statistics for balloon rhizotomy for periods over three years. Doesn't mean they haven't been published -- must that I haven't seen them.

Regards, Red

Comment by Linda on April 16, 2013 at 1:22pm

As anyone else had the balloon proceedure done? What can I expect??

Take care of you,

Linda

Comment by Linda on April 8, 2013 at 8:06pm

This is going to sound strange but I am more comfortable laying on the side of the MVD. The pressure feels good

Take care of you, Linda

Comment by Jeanette on January 28, 2013 at 11:02pm

I am ATN and as my neurosurgeon refers to me as not being a typical case. He calls my TN intractable meaning it doesnt respond to meds, procedures and now it looks like surgery. I had a MVD in 10/2010 was pain free abour 6months. My dr put me back on meds and I toughed it out for about a year. Then in 10/23/2012 I had a crainotomy with an open partial rhizotomy. my neurosurgeon and i decided to cut a large portion of my sensory nerve so that the left side of my face would be permantly numb in hopes the pain would cease. Not the case 3months later and Im in more pain than Ive ever been. Facial pain, aching, throbbing burning and shocks I also have cluster headaches.

Moderator Comment by Richard A. "Red" Lawhern on December 1, 2012 at 3:30pm

Christine,

From your description, I would say that the Cyber Knife procedure may have introduced scars or adhesions along the trigeminal nerve -- which it is supposed to do, but the outcomes of which are not always fully predictable. The GK procedure added to those lesions.   For now (and I emphasize this "for now") I think you may best regard the numbness as long-term -- probably months to a year or two.  With either kind of stereotactic radiosurgery, patients may observe a return of feeling over time -- and unfortunately, there can be pain recurrence as well.  

In the standards of the International Radio Surgery Association, statistics are offered which indicate pain recurs for about 50% of all GK patients within three years.  I haven't seen statistics beyond 3 years. But all other forms of surgery tend to stabalize out at about 5-7 years with additional pain recurrence in about 2% per year of additional recurrences after that. I encourage you to validate these figures against the experience of the surgeon(s) who did your two procedures.   Likewise be advised, that two uses of radiosurgery against TN are generally regarded as a lifetgime limit, to avoid damaging surrounding brain stem or cranial structures.

If you want to read the IRSA standard, send me email at lawhern@hotmail.com.  It's copyrighted so I can't post it publicly on the Net.

Go in Peace and Power

Red

Moderator Comment by Richard A. "Red" Lawhern on December 1, 2012 at 3:19pm

Christine P posted a message to all members of the failed procedures group.  The following repeats that posting, so that we may retain an integrated record of responses...

Good afternoon, all.

I have posted before, but am re-posting in this group, as think it more specifically addresses my concerns. I would so appreciate your feedback, suggestions, and/or help regarding my current situation.

I had Gamma Knife in October of last year, Cyberknife in April of this year, and most recently an SPG Block.
After the Cyberknife I had a host of symptoms that were very unpleasant; burning in mouth/face, sores that appeared in and around my mouth, thrush, etc. My neurologist suggested that an SPG block would be helpful with the neuropathic pain (non-electrical shock type), which I elected, as my shocking pain is virtually gone.

While I had numbness and burning before the SPG, it was limited to my mouth. My eye has felt weird ever since the Cyberknife procedure, though it is not dry; just feels like someone's finger is in there. Now, my numbness consumes the entire left side of my face; including my jaw, throat, tongue, lips, nose, eye, cheek, eyebrow, and forehead - even continuing up into my scalp.

While this is better than the pain (I suppose), it is very uncomfortable. It is affecting my speech, can not feel my mouth (eating/drinking is a challenge), and things are often in my eye, as there is no feeling there, either.

Has anyone had these symptoms post-Cyberknife/SPG? Can I expect the numbness to dissipate and eventually go away? I have heard that nerve damage in your brain is very different than nerve damage elsewhere in the body.

I can not imagine having the symptoms I have now for the rest of my days :-/ Obviously, my relationships are affected and my mood is quite erratic.

Thank you for reading and for any help you can offer.

Christine

Comment by Sally on September 29, 2012 at 3:17pm

Hello, I have now joined the group

Comment by Notafraid on September 10, 2012 at 12:00pm

Though my doctor correctly diagnosed TN shortly after I became afflicted, my nerologist misunderstood my pain symptoms. The MVD procedure wasn't a total failure, because now my pain is controlled both by medications and plenty of rest along with a controlled, mellow lifestyle. I beleive that if we can do one thong as a group of fellow TN sufferers, it is to fight to get our condition very definitely acknowledged as a disability, listed along with all the other conditions covered by disability insurance. I live in America and have social security disability coverage. At least I don't have to work. Working would bring on my symptoms as well as cause greater injury to the TN nerve, bringing on unbearable pain, so I have a very relaxed lifestyle that at times makes me feel crazy with boredom, pity, and of course, depression. At least I have enough money to live alright, but even that is because I am married to a really great man who has positive income. My paltry disability isn't enough to live on or to support a family. I feel really bad for folks who have to work. Sorry for this quite negative perspective, but one more thing. I think our problem is definitely right up there with veterans of war. Battling TN is frontline war, often with little or no relief and relaxation. My heart goes out to you all who are in pain. When you lose hope, seek out the encouragement of a fellow TN sufferer who can get you through it, and if you have faith in God, develop trust and focus on deeply breathing in and out grace and love for yourself in your time of need. I know it is so very hard, so terrible, but even if we don't know you personally, all of us fellow sufferers love you and care about you.

Comment by danielleq on August 1, 2012 at 8:31am

Hello, new to this group; just wanted to say I had MVD surgery in October of 2010, which failed to help. I have not been seeing a neurologist for awhile, as I am pregnant. After the baby, and after I'm done feeding, I plan to find a doctor who has a strong history in working with both TN patients as well as MS patients, as my neurosurgeon said that MS might be in my future... Also, for michelle, I was told that pain will continue after the surgery for awhile due to your brain healing itself. Swelling happens as the nerve and arteries try to repair themselves, which causes the friction against the nerve, which in turn causes the pain. You should still be on meds at this point until that pain goes away, if it does, which I hope so for you!

Comment by michelle on July 5, 2012 at 9:37pm

doona, who was your surgeon?

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