Has anyone had an SPG Block prior to having the removal procedure? This is what they want to due with me since my consultation for removal of styloid is not scheduled until August 14th? What is is like? Was it helpful?
Forget it. Not even correct block for type. Another copay gone! This Dr has never done the correct block (long name) and was too nervous to try! Lol like I would let him! He is a prominent anesthesiologist at the pain clinic. Really so done!
I had to look it up. I can tell you that one doctor did put Xylocaine 2% in each nostril twice, but with an atomizer. It burned for hours and then he did get relief but only for a few hours. We also have lidocane at home but he won't use it because of the burning. Same issue...too much extra pain for minimal relief. Good luck and keep us informed. I would do anything for relief if you have to wait that long.
I just had the SPG nerve block done this past Fri. It was relatively easy, especially compared to head and facial pain. My docs now think that I'm suffering from a post-concussive disorder from years of competitive hockey. The block did help my pain in that (SPG) quadrant, but not in the other areas of my head, so this means that I may be a candidate for gammaknife surgery. I'll be thining of all of you guys!
Cameron
(Boulder, Co,.
cameron9 said:
I just had the SPG nerve block done this past Fri. It was relatively easy, especially compared to head and facial pain. My docs now think that I'm suffering from a post-concussive disorder from years of competitive hockey. The block did help my pain in that (SPG) quadrant, but not in the other areas of my head, so this means that I may be a candidate for gammaknife surgery. I'll be thining of all of you guys!
Cameron
(Boulder, Co,.
So Done said:
cameron9 said:I just had the SPG nerve block done this past Fri. It was relatively easy, especially compared to head and facial pain. My docs now think that I'm suffering from a post-concussive disorder from years of competitive hockey. The block did help my pain in that (SPG) quadrant, but not in the other areas of my head, so this means that I may be a candidate for gammaknife surgery. I'll be thining of all of you guys!
Cameron
(Boulder, Co,.
Dear Cameron9,
So you must not have as you said true Eagles symdrome but a post concussive disorder. Why did they think you had Eagles or Ernest Syndrom? DId you not have at three d sonogram or a panaramic x ray to confirm Eagles?
I hear that Gamma Knife is awesome. The Block they are recommending for Eagles is Styloidmadnibular ligament injection. This Head of Interventional Spine Associates has not done one. Waiting to Get Styloid consult then removal August 14th. Just cannot imagine driving in car 14 hrs round trip. that makes my head pain worse.
Thanks for thinking of us. Im glad that you have some relief. Bless You in your journey to heal.God is always good!
Ear Mom said:
I had to look it up. I can tell you that one doctor did put Xylocaine 2% in each nostril twice, but with an atomizer. It burned for hours and then he did get relief but only for a few hours. We also have lidocane at home but he won't use it because of the burning. Same issue...too much extra pain for minimal relief. Good luck and keep us informed. I would do anything for relief if you have to wait that long.
Dear Ear Mom,
I cannot imagine the pain you must feel for your child. I have four children of my own: 21 yrs down to 11 years old. If it was my child, my heart would break and be one searching like you are. You are the going to the ends of the earth kind of mom for your child I can tell. Bless you.
I am on Liddocaine HCL 4 percent nasal spray . once a day Or three times a day for only three days a week. I choose to take once a day at 4pm during that crazy time of day. It gives me relief for 1-1.5 hours. It has no , not at all sting. It is awesome. It was by prescription at a compounding pharmacy that took 24 hours to make and cost 45 dollars that I could try to get insurance to reimburse but doubtful. It helps when I know I need to be at church, cook or ride in the car ( car pumping is my worse trigger for pain).
I also take Lidocaine 2.5 percent and Prilocaine 2.5 percent cream. I wish I could bath in it. I put it on my face and jaw and neck at night to be able to lay down on my aching head. With a sleep aid I take, this is wonderful. I also heard through the grape vine it is great for cellulite. So when I am well and have some to waste I will try on those thighs of mine! lol
Did you have a panaramic x ray or three d sonogram to confirm this is really Eagles? WHere are you going to be able to go for Treatment? IF you have an appt date at one of the four places ( mine is August 14th with Dr Okeson in U od Kentucky), maybe if you had a date they would allow some sort of narcotic to help your child. I do not know how old. The thought is awful I know. But if this is Eagles. It is beyond painful. I have had four c sections and this pain is far more awful and constant.
I hope that God heals your son. I hope that you get good relief or treatment. Hope any of this helps.
The kind of nerve block injection is Styloidmandibular ligament injection. This is what I am trying to get in order not to take any other meds but the spay and cream until August 14th. So far no one has done one in the Charlotte area. Blessings, So Done
Thank you SoDone. I shared your post with my son and so he tried the nose spray last night. We have lidocaine 4% diluted 50% with saline to reduce burning. He did try it last night. I won't know if it worked until he wakes up (he is up later than me because of this condition). It helped him to know that someone else uses this spray and it helps you. He was scared to try it because the xylocaine caused extra pain and his tolerance is low given that he is a level 10 pain all day anyway.
To answer your question, we do have a CT that shows elongated (calcified) styloid processes on both sides. No one believes it is Eagles because he is too young, the length is 31mm on each side, which I have been told isn't long enough. Another person on this site found me a research paper on the lengths of styloid processes of children (average 10mm at age 11) so one doctor did agree to do the styloidectomy based on that even though he is still unsure. So, no one will confirm Eagles for us or GPN, but I do believe he has glossopharyngeal entrapment of the nerve from the elongation of the styloid process. We are impatiently waiting for a surgery date. Thanks for your post and for the extra information. I may also try to hunt down the creams.
So Done said:
Ear Mom said:I had to look it up. I can tell you that one doctor did put Xylocaine 2% in each nostril twice, but with an atomizer. It burned for hours and then he did get relief but only for a few hours. We also have lidocane at home but he won't use it because of the burning. Same issue...too much extra pain for minimal relief. Good luck and keep us informed. I would do anything for relief if you have to wait that long.
Dear Ear Mom,
I cannot imagine the pain you must feel for your child. I have four children of my own: 21 yrs down to 11 years old. If it was my child, my heart would break and be one searching like you are. You are the going to the ends of the earth kind of mom for your child I can tell. Bless you.
I am on Liddocaine HCL 4 percent nasal spray . once a day Or three times a day for only three days a week. I choose to take once a day at 4pm during that crazy time of day. It gives me relief for 1-1.5 hours. It has no , not at all sting. It is awesome. It was by prescription at a compounding pharmacy that took 24 hours to make and cost 45 dollars that I could try to get insurance to reimburse but doubtful. It helps when I know I need to be at church, cook or ride in the car ( car pumping is my worse trigger for pain).
I also take Lidocaine 2.5 percent and Prilocaine 2.5 percent cream. I wish I could bath in it. I put it on my face and jaw and neck at night to be able to lay down on my aching head. With a sleep aid I take, this is wonderful. I also heard through the grape vine it is great for cellulite. So when I am well and have some to waste I will try on those thighs of mine! lol
Did you have a panaramic x ray or three d sonogram to confirm this is really Eagles? WHere are you going to be able to go for Treatment? IF you have an appt date at one of the four places ( mine is August 14th with Dr Okeson in U od Kentucky), maybe if you had a date they would allow some sort of narcotic to help your child. I do not know how old. The thought is awful I know. But if this is Eagles. It is beyond painful. I have had four c sections and this pain is far more awful and constant.
I hope that God heals your son. I hope that you get good relief or treatment. Hope any of this helps.
The kind of nerve block injection is Styloidmandibular ligament injection. This is what I am trying to get in order not to take any other meds but the spay and cream until August 14th. So far no one has done one in the Charlotte area. Blessings, So Done
how stupid can doctors be to think a child's elongated styloid has to meet an adult standard before diagnosing it as Eagles. If the size of the head is smaller and the styloid is long, then what is the issue. I am glad you found a doctor who might be willing to help.
I agree with Emma! Only these very few places in country (4) know about Eagles Syndrome.
"
Update on these nerve blocks … Two drs recommended occipital nerve blocks nbc this “might be” two fold issue! I asked if it would help make me comfortable for my Eagles syndrome? No was the answer.
Neither Dr had done a styloidmandibular ligament block but one is willing to try it ., may let the one do it bc I’m in unreal pain.
Tuesday at 7 am. Right now I need pain relief till august 14th until my appt in u of k with dr okenson.
Eagles syndrome for for years undiagnosed stinks!
Your a great mom for helping your son and we all must be are own advocates!
Thank you so done & Emma. I have been debating if & how to share my last doctors apt. It did not go well but it was with one of the doctors listed on this site & he is supposed to be one of the specialist on eagles. So I have decided to share the facts & omit the harmful mean & ugly experience…I will write it here & then post a new discussion too so it doesn’t get buried.
The facts according to one of the specialists: the length of the styloid process does not matter. He has removed long ones where patients got no relief from their symptoms & he has removed short ones where the patient got full relief. He said that all eagles patients have atypical face pain ( which I do not agree with nor does my son fit in that category). He said there is no one test for eagles syndrome. He said the only way to see if it is truly eagles is to take out the styloid process & see what happens. He said that in some of his patients he has noticed that the base of the styloid process ( under the ear) is very close to the spine which he believes may be the problem. In my sons CT the base was not visible. He said that some people get relief, some get worse since they are moving nerves during the surgery and some have no change. He said the surgery is very painful & you should explore all other options first & have a backup plan if this doesn’t work. Those are the facts he shared. I am willing to speak to anyone who wants more detail. Please reach out privately via " friending" in this site & emailing through this site & I will be happy to discuss our experience over the phone.