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Have you ever had an SPG block? (Read 5269 times)
zacsz
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Have you ever had an SPG block?
Apr 10th, 2012 at 6:43pm
 
That is, a Spenopalatine Ganglion Block.

I went to the Cleveland Clinic back in February and, not suprisingly, we came to the conclusion that medications were probably not for me or... at least not alone. Neither was O2. He went over the list I gave him and counted that I have been on almost one hundred different medications for my clusters between preventative and abortive in the past 3 years. I saw Doctor Stuart Tepper over there, who has had years of experience in headache treatment.

He gave me a few options... Depakote, which seemed counter intuitive to the "medication is probably not for you." I have never been on Depakote for clusters because for a long time, I was on a mood-stabilizer for BPD (discontinued in Dec. 2011) and I also need to lose some damn weight, so all of my doctors are concerned about its weight-gain profile. Occipital nerve stimulators, which also seemed like a not good choice given the fact that it only has about a 30% success rate and they can "travel" and get out of place, not to mention insurance usually doesn't cover it. Deep brain stimulation was behind door number 3, which could literally kill me. And then the SPG block, which literally seemed like the only palatable option. 

So I had the procedure on March 15th. It's similar to the occiptal block, albeit more involved. From googling it, it seems that different offices do it in different ways, but I basically received an injection of some local anesthetic and a steroid through my cheek and into the SPG.

It has definitely helped, no question. I was getting 4-5 headaches every day (chronic), and now I'm really only getting two or so and the max pain has generally decreased. It's still not where I want to be, but I'll take it for now. It's also said to help medications be more effective... which makes sense if it's decreasing the severity of one's condition. I don't know if that's why it is, but I'm assuming.

So, it may be something to ask your doctor about if nothing else is working... the SPG block is meant for people who have failed medication after medication and have found little to no relief for their clusters. In any event, that's my brief report. I'm feeling a little shitty now as it were so that's all I have for the time being, but I'd be happy to answer any questions.
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coach_bill
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Re: Have you ever had an SPG block?
Reply #1 - Apr 10th, 2012 at 9:55pm
 
Hello,

Im from cleveland and have yet to hear of this from any of my former docs. My question here is has it really worked? If your clusters are still happening, did it work? question #2 did you reaaly try everything b4 be willing to give that a try?

Please go to Multimedia File Viewing and Clickable Links are available for Registered Members only!!  You need to Login or Register and read. It may seem a bit.... Well just read it so you can at least say you looked at everything.

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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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zacsz
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Re: Have you ever had an SPG block?
Reply #2 - Apr 11th, 2012 at 3:30pm
 
In all honesty, I'm a little insulted you'd think after three years I've never looked at clusterbusters, especially given how often it's thrown around on here. I don't think psychedelics are an appropriate option for me for a number of reasons, though I'm keeping it in my back pocket.

^^ Those reasons are pretty simple; I have a psychiatric history first and foremost, and I have been stable for years. I don't want to trip anything off. The second is that I don't really respond well to triptans, which are related to psychedelics. The third is that I had no relief from methergine, which is more closely related to morning glory than triptans are to any of the psychedelics. The fourth is that I tried my fair share of things when I was younger and I've had terrible reactions to psychedelics, so I don't really know if I can handle them even to get rid of my clusters.

On the other hand, the block is supposed to make everything that much more effective, so maybe I'd have a better bet with them now... but the triptans still aren't working, and neither is O2.

Surely you think a 60% decrease is better than 0%, which is exactly what I was able to achieve before this?
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« Last Edit: Apr 11th, 2012 at 3:31pm by N/A »  
 
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ariel
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Re: Have you ever had an SPG block?
Reply #3 - Apr 11th, 2012 at 3:51pm
 
Can I ask you, was most of your pain located in your face & eye or did you have pain on the side of your head that it helped as well? I get my pain in my eye & temple & the bottom of my head where an occipital nerve block injection is normally given, but a big part of my pain is right on the side of my head, just above my ear & I'm interested in knowing how it relates to where your pain is and how it might be similar. Also, did they give you an idea of how long this may continue to give you some relief? Thank you for posting this.
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zacsz
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Re: Have you ever had an SPG block?
Reply #4 - Apr 11th, 2012 at 3:59pm
 
Ariel,

The bulk of my pain during an attack is located in my temple, down my face and jaw, in my eye... sounds like mostly the same as you, actually. I don't get pain down the back of my head, though, where the occipital block is given. My pain also doesn't really extend over my ear, it really kind of stops at my temple and travels down my face in front of my ear. I found little relief from Occipital Nerve Blocks I've received; they worked for about as long as the local anesthetic held out.

It's helped all of the pain in general; as stated in the first post the frequency and severity have both gone down. The headaches I'm getting can still be pretty nasty but it's definitely been a marked improvement.

The procedure is supposed to last for about 2-3 months, and takes about a week for the full results to become apparent.

Hope that helps, and feel free to ask anything else. I'll answer what I can.
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ariel
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Re: Have you ever had an SPG block?
Reply #5 - Apr 11th, 2012 at 4:11pm
 
Ah, thank you. The ONB never helped me either, in fact I'm pretty sure that it made things worse, maybe irritated the nerve & is preventing prednisone from working. I am due to see a doctor in the Cleveland Clinic soon as well & I hope they have a few ideas. I know that at this point, I would be happy to get my 4 or 5 HA's a day down to a more manageable 2 a day. At least I could afford the half a shot of imitrex each time at that level. I may have a question after I speak with them and they give me some options. Thanks for answering & I hope it continues to work out & maybe even gives you complete relief  Smiley
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coach_bill
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Re: Have you ever had an SPG block?
Reply #6 - Apr 11th, 2012 at 9:01pm
 
zac,

Didnt mean to insult. Maybe it was a lil smartalkie and for that i will admit my error. Best of luck in your treatment.

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boy i cant wait till it's my turn to give him a headache. paybacks a bitch
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Imitrex4Breakfast
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Re: Have you ever had an SPG block?
Reply #7 - Apr 11th, 2012 at 9:40pm
 
I had 2 out of the 3 recommended rounds of SPG blocks many years ago. It was done differently than you described. I had both nostrils filled with gel and then 'big Q-tip like sticks' shoved up my nostrils to place the gel on the base of the brain (from what I understand). I also understood it was a mixture of meds including steroids and 10% cocaine solution. It was barbaric and torturous, but the worst part is that it made my clusters WAY worse than they already were. I backed out screaming for help! (I'll guess and say that happened in 2003 or 2004)

BTW, Depakote only made my hair fall out some while I was on it. Did nothing for the attacks.

I4B

Good Luck & I'm glad it seems to be working for you. Maybe you would be a good candidate for a SPG stimulator ??

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zacsz
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Re: Have you ever had an SPG block?
Reply #8 - Apr 12th, 2012 at 12:18am
 
Coach, no problem. Water under the bridge, and thanks for the luck.

I4B, yes, I've read about those types of SPG Blocks, too, and all the horror stories! I'm no medical professional, but I think the term SPG Block for that type of thing is probably a misnomer. From what I understand after talking to the Dr. who performed the procedure, and what I understand after looking at some images, the SPG is located fairly deep in your head and can't just be reached through your nostril. Again, if I understand directly, it's located kind of directly behind the side of your nose or roughly there (one on either side of your face). I could be wrong, though.

Yes, I think the SPG stimulator is the ultimate goal here... but I'll have to wait for the clinical trials, I believe, since I don't think it's available in the US yet. Do you happen to know anything different? Obviously for someone with chronic clusters having to return to Cleveland for this procedure every 3 months or so is really not an ideal option but again, so far this is the only thing that has had the end result of ANY decrease in frequency or severity.

I know the pain anesthesiologist who performed the procedure (Michael Stanton-Hicks) had great difficulty with me even though Tepper told me he's second-to-none. Apparently, the SPG hangs over a cavity. Some people's cavity is nice and open. Mine is evidently so closed he almost couldn't fit the needle in to do the injection. I don't know if this will effect being able to ultimately get a stimulator in there or not, but I certainly hope it doesn't.

And yes, I really refuse to try Depakote for so many reasons. I know that's a bit close minded of me, but it's the only thing in the world I'd ever put my foot down about regarding treating my CHs. Granted, that probably means it's my miracle med, but I don't think so. I was on it for psychiatric reasons once and really didn't tolerate it well.... and even though that was many years ago, I'm not sure I'd tolerate it any better now.
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Imitrex4Breakfast
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Re: Have you ever had an SPG block?
Reply #9 - Apr 17th, 2012 at 12:01am
 
Before doing an actual SPG stim, I'd see if SPG blocks helped first. And yes, they're already doing SPG stims in the US (In Cleveland, Michigan (MHNI, ask for Dr. Saper or find out where Todd ROZEN is now), California, and most likely at the MAYO clinic in Ohio. (Dr. Black did one of the first DBS surgeries for clusters in the USA years ago, so I'd think they must be doing SPG stims too)

I4B
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zacsz
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Re: Have you ever had an SPG block?
Reply #10 - Apr 17th, 2012 at 3:01am
 
See... that's interesting, Dr. Stuart Tepper told me the stimulators were still awaiting clinical trial that was set to start around this summer. Even though we were definitely discussing the SPG stimulator and it sounds like basically the same thing, I wonder if the stimulator he was referring to is in some way different from whatever is already being done in the US? It could be anything, the size, the vibrations per second, the remote control system... anything that makes it arguably better. I believe this one is done by Autonomic Technologies.
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ariel
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Re: Have you ever had an SPG block?
Reply #11 - Apr 26th, 2012 at 12:50pm
 
I saw Dr. Hicks yesterday. I spent $1800.00 on round trip airfare, the doctor and hotel. He told me they are not yet doing the spg stimulators in the US. He doesn't know when the application for approval in the US will even happen, just that it has been submitted & they are waiting for approval. Could be a week, could be a year. He then told me to come back on May 10th for a flouro guided spg block, and I will know if I would be a candidate for the stim. When I asked how long I could expect pain relief for from the block, he said it could be a few days or a week. Basically, who knows? I can't even explain how devestated I am by all of this. The financial loss, the stress of travelling with HA's every few hours round the clock & coming home with no help in sight has just killed me. I was sitting in his office crying and he didn't even really seem to care. I don't understand why he told my neurologist to come & see him if they had no intention of doing the stimulator surgery now. The generic imitrex is taking forever to work & I have to use the full dose & every one of my HA's are a 9/10. I don't know how much longer I can take this. I even tried another massive dose of prednisone yesterday morning (from 10mg to 80mg), praying this time it would work, but its the 2nd day now so I guess it won't work. I would have seen an improvement by last night. I don't know what to do anymore. Spend another $1800.00 to travel to Cleveland again then however much they will charge for the procedure,  on a block that may only work for a few days? Or maybe not at all? I let them make the appt, but I really don't know what to do now. I actually can't even think straight anymore. I'm not getting any sleep. Its so much worse at night
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