Anyone Had Any Success With a Nerve Block?

This was recommended along with an MRI of the area. Both sound really expensive and I haven't heard of much success. At this point in my life I want to survive as cheaply and efficiently as possible.

No one has been comfortable prescribing some of the medications I know to be effective so far and would prefer I retry medications known to be less effective based on them not being on DEA controlled substance lists.

If anyone here has had any success with nerve blocks, let me know, as it sounds suspiciously like an expensive way to chase my tail. Some of the literature I've read, even said 'sometimes the first few don't work, so keep trying!' That's definitely how people sell snake oil.

Hi kuchak!

I personally think this's a good idea to try the nerve block. I would go for it. But unfortunately I can't find anyone who would perform it on me.

No, it's not "a snake oil" or any other chimeric remedies. I know what you mean.

Basically, they inject a corticosteroid that is a powerful anti inflammatory agent, in purpose to reduce the inflammation of the nerve and of it's surrounding area; and a local anaesthetic, in purpose to calm our nerves down and to "recharge them".

It should work for Idiopathic Neuralgia, when no compression found. Which is probably your case. And mine too.

Please read through the links

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3064862/

http://en.wikipedia.org/wiki/Methylprednisolone

http://www.nhs.uk/Medicine-Guides/Pages/MedicineOverview.aspx?condition=Local%20anaesthesia&medicine=Levobupivacaine%20hydrochloride&preparation=Levobupivacaine%2025mg/10ml%20solution%20for%20injection%20ampoules

The best of luck!

Ann xx

Also please read jessica's post on the GP nerve block

http://www.livingwithgpn.org/forum/topics/update-on-outcome-of-glos...

Ann xx

I had a GPN block done at the Cleveland Clinic by Nagy Mekhail, MD. It did not help me. I am not sure if they actually hit the nerve. From what I know, there are basically two types 1) an intraoral approach, where they block the nerve by injection by going into the mouth through the back of the throat 2) an extraoral approach, a needle is inserted on the side of your neck and they target the GPN.

I had the extraoral approach done at the Cleveland Clinic. Since I had the extraoral approach, I’m familiar with the complications that can arise using this technique. When they stick the needle in your neck they have to avoid the internal jugular vein and carotid artery. So complications can arise to both of these blood vessels if they inadvertently hit them. The doctor has to be very experienced to do this type of block. Nerve blocks can be used for diagnostic purposes and also to relieve pain from the nerve for periods of time. The risk of any type of nerve block is that the nerve is damaged by the needle in some way and it actually aggravates the pain.

Most anesthesiologist’s are not experienced and talented enough to perform this block. If you want to get this block, I would advise you find a doctor very experienced with GPN blocks. This more than likely means going to a major medical center.

Best of luck,

Gipp

Thank you both very much for the information.

Annable, it sounds promising enough to pursue if there have been cases of success. I’m sorry you haven’t found anyone willing to consider this yet. The agonizing situation of having to gain the medical community’s approval of pain they can’t measure for me is second only to he pain itself. I wish everyone with severe pain in their tongue could have the same options to find effective solutions.

I do expect most likely an MRI won’t find the offending nerve, but it is probably worth it just in case. They want the information to work with regardless. Once it’s done it could be over and I could move on either way.

Gipp, the nerve block would be done by a colleague of the person I met at a pretty high profile medical center. The doctor I consulted with admitted he’d done it one time in his youth, but was no longer trained or qualified. He seemed to be an honest person working within the framework of the current medical system, and even said a lot of times nerve blocks don’t work, but the option was still on the table.

It is nice to meet honest, well intentioned people. Doctors have to work within a framework where their options are limited due to having to justify their actions to their superiors and various regulatory agencies. I’ve found if I ask the nicer doctors, most will admit that limitations in effective treatment options are often more of a social problem. they have to justify to others what they are prescribing, for who and why. If the person they are prescribing for isn’t socially approved, or the reason can be questioned, it puts them in the line of fire.

I think if there was no one pulling their strings, a lot of these people would help us more and everyone with tongue pain would have access to nerve blocks and the same medications. As is, I suppose I should try the nerve block one time, but I definitely won’t keep trying it if it doesn’t work.

Kuchak, I get nerve blocks six monthly for a spinal condition. Worth bearing in mind the result can vary considerably from each block. My first one was fantastic - was in no pain and felt terrific, the second one exacerbated the pain for a good month before settling down. As I mentioned - spinal condition but worth thinking about, if the first isn't successful. All the best.

Smiley:)

@kuchak

I hear what you are saying about the stigma and I totally agree. One of the issues that was hardest for me to deal with was I had no “proof” that I had severe chronic pain. Therefore family, friends, and even doctors would not respond in a manner you would think appropriate for this horrible condition. Even some psychologists and psychiatrists would sometimes not take me seriously. I had one psychologists at a top ten medical institution tell me since I had multiple MRIs that showed no abnormalities and a large number of tests with no indication of problems that she thought my pain was psychosomatic and pulled out a text book and showed me a section that talked about people who complain about pain when there is no real pain source. Those types of events make me real angry and I know other people with our condition or people with chronic pain in general have to deal with confrontations like this just to get treatment. Even today, I get more attention if I cut myself and you see blood than I do for my chronic neuropathic pain.

Gipp

Hello kuchak

Nerve blocks are not like selling snake oil.

For sure you have been at the dentist once in your lifetime and received a Lidocaine injection to take away the pain while the dentist is drilling and doing his thing.

Right?

Well.... that`s a nerve block.

It is done like a million times every day and they do help as long as:

  • Your doctor uses an effective local anesthetic (Lidocaine works great)
  • Your doctor manages to successfully infiltrate the nerve or nerve ganglion in question
  • Your pain is real and not psychosomatic

I recently had nerve blocks on my forehead and temple. Lidocaine was the anesthetic of choice and I was pain free in that area for about an hour or so.

I also had 6 “GLOA treatments” of my left “Superior cervical ganglion” and all 6 blocks/injections worked fine. I was pain free for about 20 hours each time. All pain in my throat, ear, face and occipital area disappeared 100%.

Next week we start a series of infiltrations of the “Stellate ganglion”.

Both nerve ganglions are infiltrated with a strong opiate.

Basically nerve blocks do work, if done correctly and if your pain is “real”.

In general nerve blocks are a diagnostic tool but might also lead to a “long term” pain relief. Sometimes blocking a nerve or nerve ganglion is like resetting your computer and leads to a permanent pain relief.

One big problem is that a lot of doctors only block single nerves instead of also considering nerve ganglions (junction points of nerves). Most nerves are interconnected on several spots and just blocking a single nerve might not do the trick.

Get well

Michael

Mike, is a "junction point" located in the temple area?

Thank you!

Ann xx

Hello Ann



I am not too familiar with the location and function of all these nerve ganglions (junction points).

It is all very new, because my previous doctors where only treating individual nerves.



Since I don’t understand the big picture I don’t want to speculate on this.



all the best



Michael

Mike does that mean the pain is coming from the cervical spine? If the goal blocks the superior cervical ganglion that sounds like the pain generator is in your neck?

Hello

Interesting ... I just researched your thesis a little more. The first website visited (link below), lists symptoms, that match some (most) of my problems, even the "provocative area" shown on one of the illustrations ... hmmmm????

But I already had physiotherapy and all these treatments, resulting in ZERO change or pain relief.

Honestly I don`t know what to believe in anymore :-(

http://www.spinalstenosisanddisc.com/articles/14-neck-pain-headache-nausea-blocked-ears-sensitivity-to-light.html

I also have the area on my neck and it got that way right after a car accident. This info is from a chiropractor that does research. I suspect there is a specific type of therapy done to address this. Unfortunately I am a cross the country from this place and it looks like it would involve months of treatments. To bad I am not dealing w scoliosis there is a big chiropractor office near me that is very successful treAting that it's a specialty office. But anyway it seems that if the gola block helped could implicate the spine has ur doc made any comment as to what it means that the goal helped? Did u have blood vessels on ur nerves? Sorry for all the questions. My case seems to b much like yours.

Yes I do have blood vessels on my nerves and now the teflon sponge creates even more pressure. Allsurgeries I had before were performed by other doctors not the one that is treating me since jan. 2015.

He mentioned that the gloa tesponse was important for hin to narrow down the area from where my pain comes from, but he did not speciffically talk about the "superior cervical ganglion syndrome"

I could immagine that you have these problems from a car accident, but I never had anything like a car accident.

Hi - I think a nerve block is only a short term measure that may interrupt pain signals initially but the medium long term and underlying issue wont be addressed. I am a trained assistant Anesthesiologist and am surprised a Nerve Block is being suggested for GPN. If it is being done diagnostically (to confirm the Glossopharyngeal Nerve is hyper-activating) thats something else. I had that myself, and proved that the nerve in question was in fact the source of the pain.

Seek a second or third opinion and dont stop asking questions!

Hope this helps

Michael

Mike I had a C9 block done at the Cleveland Clinic Nagy Mekhail, MD. He's world renowned. However, I don't think he actually hit the nerve. It's a very difficult block and even the best anesthesiologists are going to miss sometimes. Also there are only a handful of anesthesiologists that have enough experience to do the block. If you talk to home town anesthesiologist they are likely to tell you its crazy. But if you can't find a solution and you are in enough pain you will let them do it so you can diagnose what nerve is causing the problem. So I kind agree with KiwiSurvivor that if they do hit the nerve and you get pain relief it will be likely short term relief. You have to view it as more of a diagnostic tool than a way to relieve the pain. If the nerve is being pinched by blood vessels then the block would only have a short term effect. Nerve blocks don't unpinch nerves. Also there are two ways to do the block. The either push the needle through your neck to reach the nerve. That is the block I had. Or the go through the mouth and push the needle through your throat.

I would recommend you find a neurosurgeon that has done the most microvascular decompression surgeries (MVDs). The doctor who did my MVD is Amin Kassam, MD, now at the Aurora Healthcare in Milwaukee. He was at the University of Pittsburgh Medical Center (UPMC) when I had my MVD. He is also world renowned and I believe he has the most experience in the world concerning GPN. He basically told me there are no medications that will solve the problem. If you have GPN, he probably will recommend an MVD. There is a time clock to worry about as well The longer you have the condition, the greater the chance you suffer permanent nerve damage. If you have the MVD early enough, the greater the chances you will have almost a complete recovery. This also depends on how badly the nerve is compressed. Do not wait!!! Dr. Kassam will also ask you questions that other less experienced doctors will not that are not in the academic literature or text books. There are small things he will ask to diagnose the the situation. Like have you lost your taste for coffee? For some reason, he has found people with GPN lose their taste for coffee. The GPN is so small that even if it is blocked it will not likely show up on an MRI. But they will have you get an MRI to look at the blood vessels that are visible and to see if a tumor is impacting the glossopharyngeal nerve. So its a good idea to have the MRI. Make sure it's a 3T MRI. That shows the greatest clarity. The doctor asking for the MRI must write "3T" on the script. If they don't write that on the script you may get an MRI that has less clarity. I believe for insurance purposes it costs the same.

Here is info about Dr. Kassam:

http://www.aurorahealthcare.org/find-a-doctor/dr-amin-baradi-kassam-md

Hope this helps,

Gipp

Hey Gipp

When doing nerve blocks the goal is not to hit the nerve (which would hurt) but to place the anesthetic around it, or around the Ganglion (Nerve Bundle) thereby affecting the nerve function. A Block may also be another term of reference for severance or removal of part of the nerve. So we need to know what is actually been referred to here.

Michael