I had 100 percent relief for several weeks but last few days the headaches and throat and neck pain have been flaring unfortunately. Tylenol and ice helping some. Not sure if Dr H will still want to do the jaw injection but I’m inclined to give it a try since surgery would likely be several months out.
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I’m sorry your symptoms are back, blossom. That’s discouraging but w/ ES somewhat inevitable until those nasty styloids are removed. I hope Dr. H is willing to do whatever he can to help you. He sounds like an amazing doctor & compassionate man so I expect he won’t leave you to suffer.
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Hope he does & it helps, sorry that things are flaring…sadly that does seem to be the way. Thinking of you & sending you a gentle hug…
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Darn blossom! Sorry it didn’t last but Dr H will guide you right. Hang in there, sending you every good!
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Sorry blossom.
All the injections I has seem to fade at about 8 weeks out after injections. I think the steroids is what helped me the most. The nerve blocks seemed to wear off within 4-6 hours. Im still not quite sure how much relief I get from the botox as far as relaxing the jaw, masseter and temples. TMJ guy says he can see visually I have had botox up there but I honestly dont feel much relief so Im not sure what all that is about. General protocol for the injections are on a quarterly basis.
I cant remember if you are on any nerve meds. At one point many years ago, I was given a drug called pamelor at a pain center. I think it falls in the anti-seizure category. Low dose of certain drugs can disrupt the pain path to the brain. In my case, it worked very well but had the side effect of weight gain. When my daughter tried it for chronic pain, it did nothing for her. There is alot of trial and error with meds and everyones body is different how they respond. A good pain doc might have some protocols to give you some relief.
Im looking at maybe buying a hand held infra-red type lazer light to use on my TMJ joint since I cant take NSAIDS. Ive been hearing this type of therapy is good for inflammation.
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@Snapple2020, please pass on information about the laser. I think that would be good for me as well. I have longstanding TMJ issues. Dr. Hepworth has be investigating the possibility of Trigeminal Neuralgia, but I still think the action is at my ligaments.
Lasertheraphy.pdf (555.3 KB)
I’m still scoping them out online for purchase and researching models/costs. Some chiropractors and PT offices have this but of course charge for it per visit or use. My chiropractor suggested the purchasing a hand held one. Sure beats going into an office 3x a week or more and pay a co-pay.
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Thanks Snapple & everyone for your kind words! I’m not on any nerve meds… just a muscle relaxer at night and plavix (blood thinner) in the morning. The injection Dr. H is wanting to do is kenalog, a steroid. My fiancé pointed out that even though the pain is back I seem to be getting relief from Tylenol and only needing one dosage per day, unlike before the blood thinner, when I was taking NSAIDs like candy and needing tramadol a lot of days too. I will take the relief I can get. Today and yesterday have been a bit better so it seems to come and go. I’m anxious for my next appt! Not until New Year’s Eve.
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blossom,
Symptoms coming & going are typical of ES. We’re not sure exactly why that happens but it can be a bit frustrating to feel great for a few days to a few weeks then suddenly feel awful again w/o anything in life really changing. I hope you continue to find good relief from Tylenol. New Year’s Eve will be here all too soon. As “different” as this year has been, it has still seemed to fly, by for me anyway!
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Well I was kind of discouraged by my last appt which was on New Year’s Eve. Dr H felt my muscles in my jaw and said that they seemed better. I reported that I felt mostly ok on the meds but had a few bad days. He then suggested I go off the muscle relaxer and the blood thinner hoping I am “cured” which doesn’t really make sense to me the more I think about it. At the appt I went along with it because I was feeling optimistic. The nurse also seemed totally out of the loop and suggested I go see Dr Kaminsky… when I already did see him??Since the appt my symptoms have been back intermittently. It just doesn’t make sense to me to quit the medications when they aren’t even helping 100 percent of the time, they are helping some of the time. I called and told them I do not plan to quit them because my symptoms are not improved even on the meds. I don’t go back until March and now I am pretty frustrated I did not advocate for myself more at the appt. in the notes I received after the visit Dr. H said if the symptoms return we could try something called “pressure gradient testing” with Dr Kaminsky. I have no clue what that this is other than pressure testing during the angiogram which I already had done? I am not doing yet another angiogram for some other test that they forgot or didn’t have the sense to do. If that is what they want done they should have done it the first time!
I’m just really frustrated. It feels like I am never making any progress.
Hi @blossom
I am sorry for your continued frustration, it is such a process. It may be that he wanted you to stop the medications to see how your body is responding at this point, sometimes that is the only way to really know as the medications can mask things.
“Pressure gradient testing” is the same thing you had before (not something they forget to do at the last angio). I did a repeat of the angiogram with PG measurements 4 months after my last styloidectomy to help try and isolate if what I was experiencing was still a vascular issue or not. Did Kaminsky take PG measurements of your jugular veins at the last angio, it would say in the report (you can have them email it to you if you didn’t get a copy) This may be what the nurse is referring to if the jugulars were not included in the last test.
It may be worth another call to his Hepworth’s office to clear up the confusion of the plan for another angio vs discussing moving forward with the styloidectomy? It is hard to always be your own advocate but it is the reality of things now.
Keep picking away at it, be the pleasant squeaky wheel!
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Thanks! No I don’t think he did pressure testing of the jugular, just in my head. Which at the time I did think, why the %#^* wouldn’t he have done that when that is where the compression supposedly is?
I am not doing another angiogram. That is an invasive procedure and is not without risks. Not to mention very costly $$$ and traumatic for me. Seems absolutely ridiculous that I would have a second one within 1 year when nothing has even changed?
Other things he listed in the notes if symptoms return were an MRI of my jaw and trying a steroid injection. Those things I would be willing to do.
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I just called and asked to be put on the wait list if a sooner appt comes up. My next appt is March 4 so it’s actually not too far off. I just am so hesitant to quit the meds when they seem to work. I really don’t want to risk a 24/7 headache, pain at a 9 or 10, taking prescription pain pills and constantly considering going to the ER.
That’s where I was before starting the blood thinner. :-/ I wish I had told the doctor this back at my last appt but I was feeling more hopeful than I am now. Blahhhhh
I’m going to wait til my next appt to explain all of this because calling them stresses me out and makes me feel dumb, hopefully I can get more clarity then.
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Understood! It is always better to have the conversation in person if you can, glad you called to try and get in earlier!
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So sorry that you’re feeling so frustrated; it’s really hard to think of things sometimes at the doctors, especially if they throw a curve ball like wanting to stop medication, or try a new test. Could you bring someone with you to your next appt, & maybe write down the points you want to discuss or clarify in case you get flummoxed & forget. I’d ask about the blood thinner & how long you can be on that maybe? It’s good that it’s helping but do you want to be on them long term?
Hope that March 4th comes round quickly for you, or that you get a cancellation!
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Hi Jules, I want to bring my fiancé but due to Covid he is not allowed. At the last appt I was expecting an injection in my jaw as I had called them and told them the muscle relaxer was working and they said that was the next step. Then the doctor comes in and says I’m cured and don’t need an injection and stop the medication in three weeks? It was a curve ball for sure. I don’t really want to be on the drugs long term but without any other treatment or even a diagnosis I don’t want to stop them either. And, the thought of doing another angiogram within three months of the first one makes me want to say %#** it all and I’ll just stay on the drugs and forget ever having any more progress. I feel like I am treading water going round and round in circles. I cannot believe the next suggestion was another angiogram… it just feels like what is this all even for? It’s not a scan you can pop in and out of, it was an entire day of hell for me and then days of recovery and a full week before I felt normal. It’s a no from me. The angiogram doesn’t even help the symptoms! It’s a diagnostic test! The first one took me like four months just to get the GD thing scheduled and then see hepworth for the follow up, and the conclusion was basically “ho hum we don’t know.” God I am just so angry and feel so hopeless. So many people on this site get treatment/diagnosis/SOMETHINg without even one angiogram let alone two! I feel like I am just being jerked around and treated like a test subject not a human. It’s been very expensive and time consuming just to get to this point…
This is so frustrating for sure! Sounds like they somehow got your plan mixed up and didn’t have the angio info at the time of your appt. One thought would be to ask about an US of your jugulars. That is much more affordable and not invasive at all. Definitely have a list of questions with you, let him see it. This will help keep things on tract as well.
I’m sorry for your turmoil, hang in there!
I’ve already had an ultrasound of my jugular which showed compression… that is the whole reason I thought I had the angiogram.
blossom,
I assume you’ve had a CT scan. If so, have you considered getting a second opinion from Dr. Samji, Dr. Cognetti, or Dr. Annino. Any of those doctors would need a copy of your scan & the radiology report. All three do video consults for a fee. It might get the ball rolling for you as far as having a definitive diagnosis. I don’t believe Dr. Samji requires any pressure testing in vascular cases so he might be a good place to start. I think he charges abt $500 for a consult but often medical insurance will pay a part or all of that cost.
You can also try posting your CT scan images here if you have any that are 3D & we can give our non-medical opinions.
I am sorry for the circles you’ve had to run. Hopefully the next steps will only be movement toward a solution.
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