Hi all,
I am back and forth about whether I want to have surgery or not. My doc wants to address the stylohyoid ligament protruding into my tonsillar fossa, but wants to put the elongated hyoid bone on the back burner. He also wants to keep me overnight after surgery. This is somewhat complicated for me because I have a baby that I’m still nursing. So, im at a point where I am thinking of putting surgery on hold. I’ve never been put on any medication to see if they would help take the edge off of the pain. Any recommendations to suggest to the doctor? Any help on this issue would be appreciated. Thanks.
Hi :)
When we talk about ES, everything depends on the amount of pain. If the styloid process really is bothering you so much, you'd better find some time in your life and schedule the withdrawal of it.I operated my two styloids in the same surgery and by externally. The recovery was not painful. I'm a man and I can use the beard to disguise the cuts. In your case, being a girl, I understand that the intraoral route is an alternative. Here in Brazil the women also prefer to make by externally. Surgeons can leave small cuts.
Do you have a long hyoid bone ? My surgeon also told me that I have big hyoid bone but couldn't say if it causes symptoms or not , what symptoms do you have ?
I don't know what sort of pain you have, but by researching myself things like glosso-pharangeal neuralgia, and trigemenial neuralgia (both have Ben's Friends sites for info), I realised a lot of my pain was along the path of these nerves, so I asked for pain relief used for these. I've been on amitryptiline for a month now and it's helped lots. There's other drugs for nerve pain which have worked for people, and some on this site have had injections directly into the area- look back over past discussions.
But presumably if you're still nursing your baby, then a lot of the drugs might well be a no-no too? There have been lots of discussions too about different sorts of massage; Ann has posted info on what has helped her.
Good luck!
I had intraoral syrgery. Much lesser pain. Life are better. But I still have some GN nervepain and occasional stabbing carotid pain. By chance I came across this Aloe Vera Gel that has been reducing my GN pain and in the carotid as well. Reducing it to a level from about 7-10 to about 1-3 on the VAS pain scale.
Thank you all for your responses. I really appreciate it. Yes, my hyoid bone is elongated. My doctor is being ultra conservative with surgery. He wants to go the intraoral route and just clip the styloid ligament for now. If I need further treatment then we will address the hyoid bone. My symptoms are pressure pain in my temple, jaw pain, sinus pressure,sometimes pain that radiates to my molar teeth, radiating pain into my neck and shoulder. All of these symptoms are mainly on my right side, even though I have bilateral involvement. Some days are better than others, but it’s basically there all the time. I will definitely look into the aloe Vera gel. Thank you for the suggestion and link.
TranquiliTea - I just want to put in a warning about just getting part of the styloid process taken out. It's much harder to get a doctor to do a revision surgery if you end up needing more taken out. And there is a problem with scar tissue developing too. The doctor may say he can go in and take more out if necessary, but if scar tissue has built up, the doctor may not be able to get it all out.
I'm saying this based on my own bad experience. It looks like I'm stuck in awful pain for life now because I didn't know enough about it and I had the first doctor take out just a little bit.
Since you're hesitating about surgery now anyway, can you use a couple months to find a doctor with more Eagles experience?
Thank you, heidemt. I really appreciate the heads up. I’m trying to figure it all out, and I am wondering if i need to get a second opinion. Thank you all for your input. I am being educated by everyone on this board. Much appreciated.
TranquiliTea: I am just in the search phase for a dr. to do surgery and will see one in January that at least will see me. I had a difficult experience with the first referral my local ENT made for me and at least found one in my state that will at least see me. I use Ibuprofen 600 mg every 6 hours and Tylenol 650 mg in between. What helps me the most are muscle relaxers, ie. Robaxin which was increased to 750 mg every 8 hours. I tried to get my dr. To put me on a nerve type medication such as neurontin but he did not want to do that. My ENT has injected steroids into the area twice which has made a big temporary improvement for me. I still hope to find someone that my insurance will ok to to do surgery that has experience in doing it, but the quest continues. I also use an aromatherapy oil mix called PastTense at night with a ice pack and a travel “u” pillow on my bad nights. I even use the travel pillow sometimes when I drive because that has been bothering me too. Good luck to you!
Jules, they put me on 10mg at night at one point, but it did nothing. I think the dose was too low. Can I ask if you take more than that?
Jules said:
I don't know what sort of pain you have, but by researching myself things like glosso-pharangeal neuralgia, and trigemenial neuralgia (both have Ben's Friends sites for info), I realised a lot of my pain was along the path of these nerves, so I asked for pain relief used for these. I've been on amitryptiline for a month now and it's helped lots. There's other drugs for nerve pain which have worked for people, and some on this site have had injections directly into the area- look back over past discussions.
But presumably if you're still nursing your baby, then a lot of the drugs might well be a no-no too? There have been lots of discussions too about different sorts of massage; Ann has posted info on what has helped her.
Good luck!
Christian,
I'm on nortriptyline, which is very similar I'm told and I'm on 150 mg a day. It helps some, but not enough. But my pain doctor said that's the highest dose.
Christian22 said:
Jules, they put me on 10mg at night at one point, but it did nothing. I think the dose was too low. Can I ask if you take more than that?
Jules said:I've been on amitryptiline for a month now and it's helped lots.
Christian,
I'm on 10mg amitriptyline, taking 2 tablets at the moment. I was on one to start with, which worked, but some pain has returned so I've upped in to 2. Still getting a bit of pain, but sooo much better than it was. It's good timing though, as I have an appt. with the consultant tomorrow, so if the tablets aren't going to work long-term, it makes me more sure about the op!
TranquilTea- the physio suggested I try a V shaped pillow- you might have one for feeding your baby?- and that instead of a normal pillow does seem to take a bit of the pressure off the sides of my neck, so has helped me sleep.
I have done it all. Pain meds including Elavil. That is used for nerve pain but if you do not resolve the problem it will grow. I spent so much money on docs, pillows, TMJ treatment ( tx) injections, Physical Therapy and pain clinics for years. I say go to an experienced doc that knows and has done ES surgery before. I had to sleep on my right and left side most the time to help with the pain. I kept thinking I was crazy and just tuffed it out only to find out that after 6 yrs I had a bone growing from my base of my skull to my Thyroid and attached with cartilage. I waited and misdiagnosed for so long it caused permanent damage. I even had cervical epidurals and scd for brain surgery which I declined. Dr. Damrose at Palo Alto at Stanford University hospital literally saved my life.
dnurs4u said: