Was your styloidectomy positive?

Hi everyone,

I have now seen an ENT and a specialized oral surgeon who both say that removing the styloids could really cause muscle issues, and issues with swallowing and even airway/breathing. I explained that reading here on this forum, I have not read that, and it sounds like others have had positive results, with less head pain, and other Eagles Symptoms have diminished.

Any input? Has your surgery been positive? Have you had additional issues with swallowing, airway/breathing or muscle issues post Styloidectomy?

I had my CT Angiogram, and it clearly shows jugular compression on both sides, yet the written report is worthless, says no eagles (Even though I was already diagnosed by a top neurosurgeon) and says everything looks fine. It says NOTHING about my arteries/veins/jugulars. But the scans clearly show compression.

My 3D CT scan also shows the elongated styloids. Feel like I am getting the brush off. (again)

I want to proceed and have at least one side removed to see if it helps with daily severe symptoms, but having a difficult time having Dr's agree, despite what the scans show. Anyone else?

Thank you for your input!

Eaglerosie (Sharon)

Also want to add that I saw Dr Congetti's name early on before I joined this group, and have looked into him, but others have recommeneded Dr Forrest in Ohio, who is closer for me in Chicagoland. Has anyone been able to send a CD to Dr Forrest? The trip would be big for me so I wonder if he would take a look first. Basically to know if he thinks surgery would help.

http://ent.osu.edu/directory/head-and-neck-surgery-physicians-faculty/l-arrick-forrest-md/

Eaglerosie,

My surgeries have helped a lot. My experience with doctors is that most of them don't know a lot about Eagles and they tell some patients things that are outright wrong.

I had intraoral surgery on my left side and he took the tip of the styloid off. It relieved a lot of my pain, but not all of it. I ended up having a revision surgery by Dr. Samji that seems to have cured that side completely.

I also had surgery on my right side where the doctor left some of the styloid in. That surgery completely cured the compression of the carotid artery and jugular vein and I felt fantastic afterwards in terms of the compression symptoms. It turns out now I'm still having some other pain issues, so I'm looking into Dr. Samji doing a revision surgery on that side as well.

As far as I know, surgery has helped just about everyone. Even the patients that still are having some issues say they are better off than before the surgery. Eagle's pain and suffering is horrible and surgery is the only thing that will cure it or help it.

So my suggestion to you is to go to someone experienced and if at all possible, have them do an external surgery where they remove the whole styloid. Good luck!

Heidiemt,

Did Dr. Samji remove the entire styloid to the base of the skull?

I had my right styloid removed last Friday by Dr. Forrest and here I am 8 days later…breathing better, sleeping better, feeling great! I would most definitely recommend him to anyone reading this!

Oh thank you so much JKL. I was just trying to contact others who had surgery. Please take over and answer the questions posed above if you can.

Eaglerosie...I don't know if he would look at the CD first, but my instinct is that he would. He did not discuss any of the post op issues you mentioned nor am I experiencing any of them. I drove from the Chicago area for a Friday surgery and was back home Saturday. I see you are in the Chicago area as well and am happy to talk to you more if you'd like. Just send me a friend request and we can exchange email addresses or phone numbers if you'd like a more detailed discussion! I had someone from Columbus help me through this and would love to pay that forward! It's a scary thing, but I'd recommend Dr. Forrest with no reservations at all.

Eaglerosie said:

Also want to add that I saw Dr Congetti's name early on before I joined this group, and have looked into him, but others have recommeneded Dr Forrest in Ohio, who is closer for me in Chicagoland. Has anyone been able to send a CD to Dr Forrest? The trip would be big for me so I wonder if he would take a look first. Basically to know if he thinks surgery would help.

http://ent.osu.edu/directory/head-and-neck-surgery-physicians-facul...

Thanks JKL, you are actually the person who confirmed Dr Forrest would be the closest Dr who truly "gets it" for me. Did YOU drive back the day after surgery? Thank you for continuing to help me!! I am so glad you have been able to receive results that have helped you!! Breathing better.. may I ask what your issues with this were prior? I am having some issues with a tight airway especially when lying down. Also did you have external surgery to remove the entire styloid? Thanks!

Thank you Heidemt as well! I am really going to press for more understanding as to why the ENT is not seeing reason to do this, and am hoping that the new scans will solidify the reasons it is needed. The symptoms are so clear with the exact symptoms listed for Eagles Syndrome and I have been having this issue for 4 years with NO resolution after traveling to 5 states! Granted, I do have other issues with my cervical spine, but this just seems like a no brainer.

I had not seen anyone talk about swallowing issues, or muscle issues on the forum, so to have two Dr's say this was a surprise to me, since my scans clearly show the issues. I am missing their reason for hesitation. The ENT I saw is a seasoned surgeon who has done them before, so I don't understand his thoughts.

Thank you everyone, these rare conditions are for the birds!! No pun intended! :)

Eagle Rosie


Emma, he took out all but 1 centimeter that he couldnt get due to scar tissue from my prior surgery.


emma said:

Heidiemt,

Did Dr. Samji remove the entire styloid to the base of the skull?

No, I sure didn't do the driving, I had a pretty bad sore throat/neck and there's no lifting or driving for about 2 weeks after surgery. The reason I chose Dr. Forrest was that he's affiliated with a voice and swallowing clinic...my two biggest issues. Like you, I had difficulty with my airway when lying down, and my voice has changed quite a bit over the last several years. My general doc had tried to find the source of my swallowing problems for years, but it was an xray by a new dentist I went to for my TMJ that finally found the issue. I feel very fortunate that he found it, and also extremely fortunate that my symptoms are not nearly as severe as some of the others I've read on this forum. I had my right styloid removed extraorally, and Dr. Forrest doesn't see a need to remove the left at this point. We'll just keep an eye on it and if it continues to grow then at some point it may have to come out.

I sure hope this helps, and I hope you get some relief. I sleep so much better now that I can breathe!!

Eaglerosie said:

Thanks JKL, you are actually the person who confirmed Dr Forrest would be the closest Dr who truly "gets it" for me. Did YOU drive back the day after surgery? Thank you for continuing to help me!! I am so glad you have been able to receive results that have helped you!! Breathing better.. may I ask what your issues with this were prior? I am having some issues with a tight airway especially when lying down. Also did you have external surgery to remove the entire styloid? Thanks!

Thank you Heidemt as well! I am really going to press for more understanding as to why the ENT is not seeing reason to do this, and am hoping that the new scans will solidify the reasons it is needed. The symptoms are so clear with the exact symptoms listed for Eagles Syndrome and I have been having this issue for 4 years with NO resolution after traveling to 5 states! Granted, I do have other issues with my cervical spine, but this just seems like a no brainer.

I had not seen anyone talk about swallowing issues, or muscle issues on the forum, so to have two Dr's say this was a surprise to me, since my scans clearly show the issues. I am missing their reason for hesitation. The ENT I saw is a seasoned surgeon who has done them before, so I don't understand his thoughts.

Thank you everyone, these rare conditions are for the birds!! No pun intended! :)

Eagle Rosie

Dear Eagle Rosie,

The more I read about Dr Forrest the more I feel confident about consulting him about doing my surgery. I’m still recovering from a Anterior Spinal Cervical fusion of C-3 through C-7. I had that done in June and will need to wait until next June at least before any further surgery. I found that it was important to stablilze my neck before dealing with the Eagle’s. My biggest symptoms are tension headaches 24/7 and muscle pain in back and shoulders that comes around the back of my head causing the tension. My face hurts! Especially my eye sockets, the worst are the the earaches! I have quite a bit of Myofacial pain. Swallowing doesn’t hurt but I must take small bites and chew everything well. I tend to have trouble with fluids. It goes down the wrong way quite a bit! The headaches & earaches are the worst! My head throbs especially when I bend down. My temples are very tender as far as I know my carotid’s are not being impinged upon. I’m dealing with Osteo Arthritis of the spine. I’m concerned that the Anterior approach of the surgery may have exacerbated the Eagle’s? Since surgery I’ve not been allowed to take Non-Steroidal Anti-Inflamatories like; Ibuprofen & Ketoralac. They inhibit my bones from growing into the new cadaver bones I now have! Our lives are very complicated and filled with pain and frustration at times. We must have patience and strength to overcome so much every day! Hang in there and we will do our best to give support. Take care.

Hi. My experience is that the majority of doctors have never heard of Eagles. I was lucky that in Montana, one ENT that I went to had seen the surgery done as a resident at John Hopkins Hospital. He said go to Stanford, I do not feel comfortable doing this operation. So I think doctors that unfamiliar with the surgery give out false information. I had a successful surgery with Dr Samji. No problems. Feel so much better. I will most likely have the other side out next year. You are on the right path. This is a rare condition and congratulations to you for seeking out the answers. Good luck

Thank you everyone,

Yes, the ENT Dr I am seeing is familiar, and has done them. I had emailed him about Eagles before I went to see him. He actually is in the same specialty as Dr Forrest, cancer, voice and swallow clinic. He is the head of the department. I am actually going to see the speech pathologist because I have cervical dystonia and now it is affecting the muscles in my throat/airway. Also I have a new appliance that I was fitted for this week, I was in Ohio when I posted this, for TMJ and a misalignment. So JKL we have several things in common.

Crystal, I understand. I have several cervical issues that so far have been deemed "inoperable" by many top neuros, but I do have one Dr (in Maryland) who had considered fusing me further. I am fused congenitally from birth in the neck which is the MAIN issue, but since that has not been something anyone has jumped to do (thankfully), I was given the path to look at the other issues that might help my pain and debilitating symptoms. Eagles being one of them. I have 5 rare conditions and its a real pain traveling all over for care. I am exhausted.

Thank you Polly for your input and relief!

JKL, did he tell you how much he removed? I am just curious. So glad you are seeing relief!!

Thank you!

EagleRosie, you are amazing! We all are! This ES is really awful! I’m so humbled to read all these posts & realize I’m not the only one suffering and trying to get on with living! I’m just existing at the moment! The pain is just getting the best of me! After being on Vicodin after surgery and having to wean myself off the codeine, it’s been tough! My only other options are Styloid Maxillary Injection Block with Marcaine & Cortisone. Relief is about 3 weeks but that’s pushing it!i also have not had one since my Neck Surgery. I thank you all for letting me post! It does seem to help me cope better & is greatly appreciated!

So funny you mentioned the breathing part. I mentioned it to my ENT and he told me I was crazy and it had nothing to do with my Eagle's. I told him that I felt like my airway was closing even after a little, but now I get it. Thank you, Thank you, Thank you for not making me feel crazy.

JKL said:

No, I sure didn't do the driving, I had a pretty bad sore throat/neck and there's no lifting or driving for about 2 weeks after surgery. The reason I chose Dr. Forrest was that he's affiliated with a voice and swallowing clinic...my two biggest issues. Like you, I had difficulty with my airway when lying down, and my voice has changed quite a bit over the last several years. My general doc had tried to find the source of my swallowing problems for years, but it was an xray by a new dentist I went to for my TMJ that finally found the issue. I feel very fortunate that he found it, and also extremely fortunate that my symptoms are not nearly as severe as some of the others I've read on this forum. I had my right styloid removed extraorally, and Dr. Forrest doesn't see a need to remove the left at this point. We'll just keep an eye on it and if it continues to grow then at some point it may have to come out.

I sure hope this helps, and I hope you get some relief. I sleep so much better now that I can breathe!!

Eaglerosie said:

Thanks JKL, you are actually the person who confirmed Dr Forrest would be the closest Dr who truly "gets it" for me. Did YOU drive back the day after surgery? Thank you for continuing to help me!! I am so glad you have been able to receive results that have helped you!! Breathing better.. may I ask what your issues with this were prior? I am having some issues with a tight airway especially when lying down. Also did you have external surgery to remove the entire styloid? Thanks!

Thank you Heidemt as well! I am really going to press for more understanding as to why the ENT is not seeing reason to do this, and am hoping that the new scans will solidify the reasons it is needed. The symptoms are so clear with the exact symptoms listed for Eagles Syndrome and I have been having this issue for 4 years with NO resolution after traveling to 5 states! Granted, I do have other issues with my cervical spine, but this just seems like a no brainer.

I had not seen anyone talk about swallowing issues, or muscle issues on the forum, so to have two Dr's say this was a surprise to me, since my scans clearly show the issues. I am missing their reason for hesitation. The ENT I saw is a seasoned surgeon who has done them before, so I don't understand his thoughts.

Thank you everyone, these rare conditions are for the birds!! No pun intended! :)

Eagle Rosie

Eaglerosie, I just wanted to answer something that you asked about here. I am a vascular/jugular compression case.

I just talked with my doc about the styloidectomy. He does not want to remove all the length. I asked why, and he said because the facial nerve IV is at the top end of it, and it's best not to mess with that and cause problems that weren't there in the first place.

I asked about swallowing issues. He said that there is a nerve that affects swallowing, and that this nerve is in the area where surgery is performed to remove the styloid. This swallowing related nerve is likely to be affected with swelling after a surgery. So you will probably swallow a little differently after the surgery, but only because of swelling.. After post surgery swelling is down, swallowing should be normal. Nothing mentioned about breathing issues and I forgot to ask.

I am too soon to say for sure ( surgery/ removal of left side 10/28/13) but what I have noticed.....

I am breathing better mostly on the left side. ( noticed this same day of surgery)

My shoulder on left side feels less tight and more relaxed. I asked Dr. Samji about if it was my imagination and he said no and that I had gotten some release.

As Tee mentioned above.........My swallowing was off before surgery. Left back portion of tongue was already numb. Still have swelling and he said it would be back after swelling goes down. (approx 6 weeks)

I hope that helps and you get some relief soon :)

Take care,

Sheila

hi, i am new to this site. I had a styloidectomy on my right side and I really wish I did not have the surgery. I am having muslce problems that radiate now to my shoulder. I would wait if I were you.

Josie, I am sorry to hear about this new issue. I have similar muscle issues, called Cervical Dystonia, so I can relate.

I did talk to Dr Forrest finally two weeks ago on the phone, since I am in Chicago, and I had sent my CD's to him in November.

I sent this to JKL but here is the update:

Hi,

He was very nice and helpful. He said that my styloids are long, but not as thick as some. I have other issues with my cervical spine, and I have cervical dystonia, which we talked about. He was very helpful to me in understanding how my anatomy is causing issues, besides the possible Eagles. He does botox as you know. I have had botox many times, but he really felt that doing it in a specific area in the sterno muscles might help me. Now it is trying to coordinate this with my neurologist here, that does my botox, to do it specifically as he is saying. He said he would talk with my neuro if he was open to it.

I have just had surgery in February to fuse another level of my neck. I thought in my last email I had mentioned this to Dr Forrest. He was asking me to do an exam on the phone, but my throat area is quite swollen, and I was nervous and forgot to say that I had just had this big surgery right at that area. SO, that was really dumb of me, because I really could not feel around and move things around at my adams apple at all. I may write him again when I am more healed, now that I know exam, I can do it when I am healed more.

It was a very constructive discussion. So for now, I heal more, and try to push for the botox in the front, and see!

Thank you JKL and everyone!!

Rosie

Hi. To me I don’t feel surgery did anything, actually I feel worse than before surgery. Before surgery I had the clicking on my throat, then I started it TMJ treatment and it went I way, now after surgery I have the clicking again, my ear hurts and before surgery didn’t hurt, I have more problems swallowing witch I only experience couple times before surgery.still have headaches, now if I use my right arm to much(surgery side) my neck starts hurting. I still have my left styloid but don’t know if I should go with the same doctor again :confused: