Surgery results

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SURGERY RESULTS

After learning that my province in Canada (Socialized medicine) won't even approve MVDs because of the high failure rate, I am just curious enough to go through every profile, see who has had surgery, and whose has been successful and whose has been a failure. I have read of about 40 surgeries here so far, and only ONE is pain free, but that's because it has been less than a year. Most others say that shortly after surgery, and certainly after 1-2 years, the pain returns, worse than before because the scar tissue seems to conduct the shocks with more power. I see SO many people planning on having surgery, SURE that this will be their cure, yet the doctors don't tell them the many permanent side -effects that can come after surgery. Constant leaking spinal fluid from your nose, inflammation, infection, damaged nerves, chances of no improvement, possibility of dealing with both the TN and the surgery problems, and many more that I have read on various people's profiles. Hoping I can create an objective poll and report that people who are planning on surgery can look at and make a more informed decision.

If anyone has any ideas of how to do this survey in a methodical way or easier way, I'm open to suggestions.

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Maybe your Dr. knows that the pain comes back worse after and that there can be other painful side effects from it, so most are not pain free. Check out the group "MVD", and I can tell you names of people who had bad reactions and no relief. Its a big gamble and the odds are against instant pain relief.

There are many combinations of treatments to try to help control this. I think I'll try iltrasound made for pain relief. There's a home bersion, is less than $100 and has a 60 day money back guarantee. www.ezultrasound.com . Also, does NS insurance cover it? People in Alberta have to pay for it themselves, if they can find a Dr. willing to do it. There are laser treatments that help more often. (Not gamma knife, but heat laser.) So research and try everything possible. Acupuncture is often helpful.

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Hmmm Shelley I wonder if you will even get notified of my reply.

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That’s really frustrating that they will only pay $300 for certaiin specialists. Alberta stopped covering chiropractic 2 years ago. They won’t cover massage or acupuncture at all. Interesting how each province is so different. Ours tells us all surgerues are covered, but when I asked my doc about MVD, he said Alberta doesn’t cover that. Mom and my sister bought Saskatchewan insurance. It looks like anyone in Canada can get it. They cover meds 100%, and glasses, teeth, and it’s less than $40 a month. You miht want to check it out. http://www.gms.ca/ They even pay for a second opinion from the world’s best doctors, you send them your records and this company pays them for the consultations, and if you have to travel for medical care, they pay you $2000 to do that. There are all different levels of this insurance so you choose which level you want. When I looked up my age and the price for the best level, it was about $42 a month.

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Sheila,

You will find a larger percentage of patients who have had failed or less than successful treatments for TN. I really believe those who are doing well are going about their daily lives and not seeking help/answers. I was one of those people for over 3 years. I didn’t look for answers until I suddenly got worse. So thinking positively, the patients who are having success with medications and/or with surgeries and other treatments haven’t found us because they are well and not looking. I believe the success rate is higher than using statistics obtained from this website. A survey of all of us will not give you accurate data. You may be one of the patients who has a success story. If you look at the statistics on various websites, the success rate for MVDs is quite high.



Liz

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Wow Liz,

That is a great point!! I guess the best info I could get is to include members of this website who opened an account here before their successful surgery, who mention they were going to have a surgery, then they didn't say much afterward, and didn't delete their account here.

Thanks for the insight!

Sheila

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(Laughs)

I suppose I am an anomaly! I am successfully managed now, and I stuck around LwTN!

You guys are great and I still want to learn more.

I want to get the word and work out about about Atypical TN. There is a lack of research going on. It's critical!

The decision to have surgery, Sheila, is a personal one. I could have pursued MVD, or another procedure. Many doctors will agree that it is a "last resort" when medications don't work. But, many have been successfully medicinally managed. That's another thing you may not hear a lot of on here. There may be a large portion of people who are successfully "medicinally managed" who don't weigh in on the site anymore, because they have gone on with things.

Liz is correct that "success stories" often leave LwTN, but surgery has good success rate for Type I and a low success rate for Type II. This is well documented. I have a study sent by Tracy C from BC, actually, that I am going to send to you when I have time. I just think you would be interested.

You deserve some relief. I hope you hit on what works soon!!

((hugs))

Stef

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Thanks for sticking with us Stef, although you know I would hunt you down if you didn't. Being atypical and already having twenty titanium plates in my head I don't really think any surgery would be an option for me. I appear to also be cross wired and wouldn't take a chance of making things worse, I couldn't remain the same person and stay positive it I had another ounce of stress to take on. I'm glad you are intersted in learning more because then you can do most of the leg work and keep me informed. I'm managing "with help" and always interested. :) big hug

Thanks,

Tracy

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I’m glad you stuck around too Stef! You are an anomaly. Most people who are well controlled want nothing that reminds them of the time they were in pain.

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SURGERY RESULTS: Rodney Dangerfield had nothing on me, though I have received respect from respected institutions.

I have to get silly, I seem to remember in one of the Star Trek movies, Dr. McCoy calling 20th/21st century medicine "barbaric". Imagine what he’d say about brain surgery, he was stuck helpless, after Captain Kirk’s diagnosis of renal failure?

Perhaps, in my case, TN1 is part of the natural aging process, an inherited genetic disorder. When I said to my Neurologist, "This isn't funny anymore", his abstract was that in the waiting room, to my left was someone with MS, to my right was some with MD.

After all the failed procedures, I am a "SUCCESS STORY", as MEMBER #8 out of 1,143 - and counting, sticking around, looking for answers, sharing stories, STAYING POSITIVE and GRATEFUL! The original medication failure, the 7-pad MVD, (2) SRS', and, as I am not a candidate for any further surgical intervention, including deep brain simulators (DBS)...I am also tired of ZombieVille, and my many adverse reactions to Big Pharma's answers, that don't work.

A big circle? My Vitamin D and Leucovorin levels stay low due to a genetic predisposition, resulting in acute inflammatory demyelinating polyneuropathy of the trigeminal nerve?


I've posted this here, and on many Neuro talk-type sites, got a hug at Daily Strength! Whether plasmapheresis helps me, or "shoulda, coulda, woulda, is moot. I'm excited there may be a hope to help others in the future, as this is one of those neonatal tests that could connect the dots in neurologic disorders.

"Survey Says"...not enough research, or funding. I still have a "toothache", but it's okay here, bob

PS: Add Tags: "results, objective, methodical, f Like"

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Bob I am SO glad you said something here, because after looking at your profile, you are one that I was thinking had multiple surgeries and had not gotten relief from them! My condition is similar to yours, genetic, demyelinating neuropathy due to lack of vitamin D and lupus. Also causing MS symptoms but I'm on my own with that in this town, it appears. Mom and grandmother had TN and I don't know how many more before them. All they had was B12 injections, heating pads, aspirin.

Thanks again Bob, I am so glad to know that your pain is bearable, and that you still hang around the rest of us and support us.

Best, Sheila

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I has MVD in 2007 and it didn’t work. I don’t know where they got the 90% success rate because I meet more and more people with ailed ones.

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I suggest they will have to be absolutely certain that there is a blood vessel around your trigeminal nerve. In my case they guessed. and I ended up with a surgery that failed and I had to pay. Fortunately it did not affect other areas, as i hear many people have hearing loss or tinnitus after the surgery.

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Carolina who told you there was a 90% success rate? My province would say it's more like a 90% failure rate, which is why they won't even offer the surgery or pay for it with our socialized medicine system.

Also from what I've studied, the Type 1 has an entrapped nerve within a hole in the bone. Atyical type 2 has a blood vessel that is enlarged and beating against the trigeminal nerve and causing irritation on the nerve. The MVD is supposed to help the first kind, but not the second kind. There is a new surgery for those with the blood vessel problem, they put a silicone disk between the vein and the nerve so they can't touch each other. Another problem that some atypical patients have is that the myelin protection on the nerve has been destroyed, so there is no surgery for that, but they are coming up with remedies to help replace the myelin, so there could be an answer for those people soon. Some have a combination of many causes. Some have had the nerve damaged by dental work or accidents or surgeries. There are supplements that help regenerate nerves that could help those people.

Hope you have a nice Easter!

Sheila

Sheila

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http://www.trigeminalneuralgiainfo.com/microvascular-decompression-trigeminal-neuralgia.html

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Wow Carolina, this article says opposite things that I have read for 15 years. When a person gets an MRI to see if the nerve is compressed, they check to see if the hole in the cranium and the joint is compressing it. Many are told there is no such compression. I was one of them. Then not long ago, this new concept of the artery irritating the nerve was d iscovered. I'd like to hear from all that had this surgery, if they were told that they had something placed between the artery and nerve, or if the Dr. tried to get the nerve un-entrapped.

The surgery that is mentioned in that link is relatively new, and I have not even been able to f ind a Dr. who performs this putting a sponge or silicone disk between the vein and nerve. If this has become the new standard, then it might be much nore effective than the previous type of MVD surgery, so that might account for the higher success rate quoted there. Thanks f or showing us this pafe and that whole site, Carolina!

Best wishes, Sheila

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I have issues with the 95% success rate they quoted in the link. My neurosurgeon refuses to do MVD on Atypical patients because according to him (following his patients after surgery) the success rate is very low and can actually make the pain worse, in addition to not relieving the pain. They don't address the different types of TN.

Who actually wrote and sponsored this article??? I wonder if someone involved in MVD surgical equipment manufacturers is responsible? I would need to see case histories and hear about long-term results.

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I have had the best neurosurgeons, including the one who removed my skullbase tumor when nobody else could tell me that I am inoperable and that having anytype of surgery would make things worse for me and increase my pain. Being a special case because I believe my TN is from my Tumor but they don't all agree . . . pain on the left, tumor was on the right. I think the high sucess rate is because they are turning so many away and only doing surgery on mostly TN1 patients unless the TN2 diagnosis showes the artery or vein compression in an MRI. Mine does not but their was so much distruction in my head, who knows what came first the chick or the egg.

If you are considering this type of treatment I would make darn sure their is a clinical finding as if the nerve sheathing has worn away, this cannot just be "replaced" at least not yet that I am aware of by surgery alone. It would be great if they could remove the nerves, dip then in teflon or nice fleece wrapping and then shove them back in. I would be first in line for that one.

Happy Easter,

Tracy

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Hi Sheila, I thought to give you a short history of my experience of MVD which was performed earlier on in 1994.

I was diagnosed at an early age in the late 80s, I was housebound/bedridden on 2200mg Tegretol & still having agonising pain (of course you need to bear in mind that I had no google/support group back then, and my knowledge base was a trip to the city library).

I agreed to the surgery even if only on an 'experimental' basis to see if my neurosurgeon could find anything. He exposed the nerve up to the root entry zone (REZ) there was also clear evidence of an arterial loop lying on the surface which went between the fibres of left fifth nerve at 1.5mm from the REZ. The two were separated at the REZ, the nerve wrapped with a strip of teflon to keep the vessel away from the nerve but the part of the artery perforating the nerve was left alone.

None of this was picked up via scans so for me, at that point, at least I got a diagnosis even if it was a rare form of a rare condition.

Having said that, my recovery was no walk in the park. The excruciating TN pains did deteriorate after approx 6 months, I could decrease my meds, and I have had some remission periods. Off and on. My hearing never returned. I have tinnutis ever since. Personally I 'blow hot and cold' regarding if it was worthwhile.

On the one hand I have my explanation for the pain although I still have it. On hindsight would I do it again - probably. And I say that as I know that there are great surgeons out there who have found similar since and treat it there and then - http://www.ncbi.nlm.nih.gov/pubmed/19306645

I'm still on meds, I still have surgeries when offered (my latest 2 were cryosurgery). And I enjoy life as much as I can when I can :-)

Not sure if this is a help!

Lyn

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here is another article, this shows a 70% success rate. http://www.nejm.org/doi/full/10.1056/NEJM199604253341701

I an so disappointed with this it seems that the results are a lot different than the ones reported.