Nerve Block for Tinnitus Relief

Yesterday a pain specialist performed a nerve block on one of the nerves in my neck. He gave me a folder about the procedure, which named the ganglion cervicale superius but all day ive been thinking that almost certainly wasnt that nerve It's just that that's the procedure he probably normally does all day so he gave me that folder to understand what'll happen.

It also wasnt the auditory nerve, as there was no mention of losing hearing. This block was temporary to test if this procedure has any merit, only lasted 4 hours, and was supposed to cause increase blood flow to the ear. I see him again on monday, so i'll ask what specific nerve was targeted. I'll add 2 pictures I took from his screen

The result did seem to be a significant decrease in tinnitus volume, although that day was already a low day. I'll discuss a followup procedure on monday, which supposedly lasts upto 2 years.

Anyone know this procedure?

 

All the best..

 

How is your T now? Do you think it has benefited? Where did you hear about this and what made you try it for T?

 

Cor... Just brief here, but figured you may be interested.

I posted this below way back in history = the July 18 - Retigabine main thread, Page 5.

Back to Retigabine/Potiga.....I had a 'dynamic' appointment with my doc (yeah same as above...excellent...really) yesterday as mentioned here. I'm not going to report on that all as this is the wrong thread. But he checked Potiga out and is totally willing to prescribe it and we can see what a few weeks to a month of it does.
However...there are now about three things ahead of that on our agreed list:
1. Neural Therapy (shooting Prociane near the sympathetic nerves at C6 and C7 ganglia in neck, with hopes of cooling down CNS and H in particular).
2. Ketamine...targeting H more than T.
3. Chinese Skullcap & Senega Root for H and to try and get me to sleep! My sleep is a disaster.

Yeah, #1 looks familiar huh?! The reason I did not do this was due to sudden onset of dental trauma (my one root canal molar suddenly went "bad" and had to get pulled...Then Potiga/Trobalt try-out jumped the queue. However, this may still be in the running later as not sure on the Retig for me.

I would be very interested to know what your doc injected. Do you know? if not can you find out? Also if your doc is using the "German manual" on this? (My doc said he wanted to do his homework first to see just where to inject...c/o the 'German bible' on this method).

Best, Zimichael

 

Ping @Mr. Cartman

 

@bedouin How i came about trying this procedure is a long story. When I first got T, i sank into a deep psychological hole, like many of us. I was given Parexotine, which backfired and gave me suicidal thoughts (went away the moment I stopped). Because of this, i ended up at a psychiatrist, who was great, and also has T.

He recognised himself in me some way, in that i was going thought paths he tried as well. I dont like just accepting 'live with it'. He recommended me this pain specialist, so thats how I got to be there.

The procedure I had was a trial injection. Just a test to see if blocking the nerve would help, before doing the actual procedure. It did seem to help, but I may do another trial. The actual procedure involves severing the nerve. The nerve goes from the bottom of the neck to the ear, and supposedly regulates blood flow around the ear.

Im seeing him on monday. I'll ask what nerve this is. He didnt inject anything, it was heated. He is trying to get a paper published on this procedure, but he is being pushed back by, you guess it, our great friends the ENTs.

Someone explain me. Why is tinnitus in the domain of the ENT? It is a brain disease. It should be with the neurologist.

 

Thanks Cor. It all sounds good except for the part about severing the nerve from the bottom of the neck to the ear. I am sure you would not want to deregulate the blood flow to the ear to the point of it being starved of oxygen. That could cause more problems like your ear dropping off! However, I am sure the pain specialist knows what he is doing. Is it the same pain specialist that did the trial injection that is doing the severing of the nerve? I'm a bit confused when you say "He didn't inject anything, it was heated." Is that referring to a trial for the nerve severing where he heated something?

What I think should be happening is the ENT's need to get on board with the neurologists and figure it out. Typical ENT's blocking progress. The "learn to live with it" must become a swear word in the future.

I'll watch the thread so I can see your updates. All the best for tomorrow.

 

Cor... What you are describing sounds quite a bit different to what my doc was proposing with a Lidocaine/Procaine "block/bathing" of neural ganglia in that same region of neck/spine. Sort of similar for sure, but...???

I will keep an eye out for your progress and maybe inform my doc of this procedure to see if it is something he knows about.

Best of luck, Zimichael

 

@bedouin It's the other way around. Severing it supposedly makes it maximum flow. The nerve constricts the blood flow. Im not a neurologist, im just saying what ive been told

So, a needle goes in, but the needle doesnt contain any fluid. It's a heating tip. The tip heats the nerve, and heating it makes it stop working temporary. Heating it even longer, eventually severs it, but it does heal again within 2 years.

It's the same guy that does it, exact same procedure, only difference is the length of the heating.

I think they use the exact same procedure to help people with back pain and other permanent pain to block the pain.

 

So it is actually the ganglion cervicale superius. They dont sever the nerve, they heat it so the outer sheat comes off. This supposedly causes maximum blood flow to the ear area. I did the actual procedure today, but it'll be a while until any results, if any, would show.

 

@Cor you are very brave.. hope this procedure helps.. if it did many will follow..

 

Thank you so much for sharing this information! I will follow your progress closely!

 

Well, so far im not sure what it's doing. The evening and day after this procedure my T went through the roof. But I was extremely tense and nervous about this procedure, and i was flying to the US the next day with even more anxiety about flying. (and thats besides the normal flying stress most airlines and airports put you through). Stress and tension brings out my T like nothing else.

Now, few days later, my t seems to have lost its tonal aspect, and is just noise. But it's probably way too early to tell.

 

How are you doing now?

 

I think in general a little better, but im not seeing any huge changes. The doc said it could take up to 6 weeks.

 

Cor... Please keep us posted on this in due course. The close relationship to what my doc wanted to do with "procaine ganglia bathing" is something of note and he is interested to know what happens to you..."Guinea pigs" are always interesting!

best, Zimichael

 

The first 2 weeks or so it seemed to help significantly. My clear tone disappeared and I had a pretty low noise left that I didnt mind as much. But in the last week or so the clear tone returned intermittently, so it could have been coincidence.

My T is extremely variable, from very low to very high, seemingly without any cause I can pinpoint. Im leaning towards it didnt helping much for me. But the doctor believes that for some tinnitus patients it does work.

 

Thanks Cor.

Mmmmmmmmmmm, yet again what I call "variable T"... I'm leaning towards this being a somewhat different version of T from pure tonal, incessant, never varying, T.

Are you going back for more of this treatment given you have had time to evaluate???...If so, do you mind asking your pain specialist their opinion of doing almost exactly the same thing but using procaine instead?

Thanks for response, and all the best. Zimichael

 

I cant really do more treatments. This is a one time deal. The nerve is now no longer functioning, until it heals. Supposedly thats within 2 years. This nerve restricts bloodflow to the area around the ear, so at this point I basically have permanent full flow to my right ear.

I see him again in 4 weeks or so, to evaluate. I'll see what he says about procaine.

 

@Cor and others,

I have found a recent paper on this. See attachment.

 

Interesting article. It seems positive but I wish there was more detail like what induced his tinnitus and whether it was tonal or pulsitile.

 

@Cor,
Have read the posts above with great interest - I think you are extremely brave to try this out with the nerve.
Hope you are doing ok. As it has been about a week since you last posted, I was wondering how you are getting along and whether the procedure ahd reduced your T yet.
I think that everyone would be really interested to know how things progress.
If it worked for you then I would be willing to have this procedure done too - although I think that I would have to come to Holland as here in France it is very slow at coming forward...
please let us know how you are (and yes please say what type of T you had/have, and what you think caused it), Thanks ever so much for doing this experiment not only for yourself but for all of us who watch and wait for possible cures or aides with this....

 

yes, please keep us informed, and very brave indeed to have this done!!

 

So far it hasnt decreased my t much, but it did change a bit. Ive lost more of the tonal aspect of it, and it's more noise now. Spikes also seem to not last as long. The doc says it does help with some t patients in various degrees. Even though the procedure looks terrifying, it's really quite common in pain management. This doc does like a dozen a day. Using it for T experiments is relatively new.

I stopped using alprazolam a few days after the procedure, and havent felt the need to start it again. That could have some effect as well.

 

hey! I just checked that paper. My doc is the second one there, Henk Koning.

 

There is criticism on the ultrasound therapies and Henk Koning's treatments from the ENT side.
Article in Dutch (http://www.kwakzalverij.nl/1595/Oorsuis_therapie_van_DC_Klinieken_deugt_niet)

At least their website shows good info on the possible causes of T. In Dutch (http://www.minderoorsuizen.nl/)

@Cor Did you have any pain because you went to a pain clinic?

 

Well, their first paragraph already contains one major problem. In my opinion (dutch) ENTs have very little knowledge about tinnitus, and even less drive to help patients with it. It is no secret that many dutch tinnitus patients go to Germany where the doctors seem to be at least up to date on this century I contribute my initial fall into darkness 100% to my ENT, who is not properly schooled to handle the psychological issues. In a sense, neurologists and especially pain specialists are much more prepared to deal with patients with longterm symptoms. Pain and tinnitus have a lot of overlap I think. Furthermore, the more we know about tinnitus, the more it seems to be a diseases of the brain, and less a disease of the ear.

Btw, the procedure explained there is not the one I did. But this doctor is looking at different therapies. The one he did with me is newer than the one explained there. He has taken a special interest in tinnitus, which I applaud. And he's not in it for the money, because his practice does very well just dealing with pain patients. The one I did focusses on increasing bloodflow. And there are basically no side effects. Similar to what betahistine does, only much better.

My primary doctor referred me to Henk Koning. This is a psychiatrist I went to after i had a bit of a bad time dealing with tinnitus. He also has tinnitus, and went to this same specialist. We all had interesting chats about the sad state of affairs with ENTs here, who seem to have no idea about research going on.

When I discussed things like potassium gateways, gaba, and existing drugs with my ENT, he basically glassed over and seemed to have absolutely no idea what I was saying. But the pain specialist (who also deals with people with migraines etc) knew most of it.

Im not saying any of his therapies have any merit. I dont know. But I was willing to try, instead of listening to my ENT and do nothing. He can also try other things, many of which are indeed explained on the website you mentioned. DC Klinieken is a very reputable clinic.

Honestly I think the potassium gateway drugs show the most promise right now.

 

@Cor. Thanks for the update. I admire your "just do it" attitude and has to be commended. Dealing with this t on a daily basis is no joke. Are you planning to try Retigabine?

 

@Cor,

It might be a brain problem, but aren't you forgetting about the somatic tinnitus people here?
TMJ / Neck / Facial pain. In that corner is where I am.

 

Ya know, I can sympathize with that because I think my tinnitus may have started with jaw clenching, but I also think the jaw clenching has stopped, and my tinnitus remains. Because of this I believe that even somatic tinnitus usually will need some sort of intervention after the trigger is resolved. Maybe not if it's a pinched nerve that is itself responsible for perpetuating the noise, but in most cases it seems like there is an initial trauma, and tinnitus is sort of an offshoot, so even if you repair the trauma, it doesn't clear up.

I'm in the potassium channel glee club partly because I think the drugs from that research angle can help those with tinnitus from almost any cause.