At 6 weeks I have noticed a slight improvement in symptoms. The left-sided tremor is still with me, although there has been gradual reduction. Tinnitus has also reduced a bit. Dr Hackman said he expected it to reduce over 2 months or so (he said there was a lot of inflammation)
. I am going to see a local atlas orthogonal chiropractor, as C-1 was also a co-conspirator in my IJV compression. The incisions feel tight, and I’m still completely numb under my chin, which feels weird. The incision next to my right ear seemed to open up and was weeping for a few days. I don’t know if you can see it in the photos, but I stopped putting any cream on it in hopes that it will heal up.
I wish I could get another CT to see what things look like now that the styloids are out, and get an idea of what to do next (besides patiently waiting). I would love to how much the IJV is still compressed. Dr. Hackman seemed confident that we were on the right track to resolve things, especially the tremor.
I’m going to try to upload my CT’s from November to see if anyone here would have any other insights. I’m grateful for the improvement I’ve already had, but I’d love to resolve things further!
Hi,
Glad to hear that you are continuing to improve from your surgery. I’m a couple of weeks behind you in the recovery process, so I know that there is a lot of swelling still in the area. It’s kind of strange because you think that since the structures that were causing the compression were removed that there should be a huge reduction in symptoms immediately, but that is obviously not the case in general as many have attested to on this forum. Hopefully, things will keep improving for you! You mentioned that you would like to get another CT to see what things look like. My surgeon has ordered a CT to check things scheduled for about 6 weeks after surgery. If Dr.Hackman doesn’t want to order one, you could just wait until he feels another would be necessary. You may also talk to your primary or a neurologist to see if they would order one. I had a fairly complicated surgery with styloidectomy and IJV decompression, so the surgeon wants to get another CT to make sure that the IJV is functioning properly. Your incisions look like they are healing up nicely! I saw an atlas-ortho chiro before my surgery as I was hoping to avoid surgery if possible. Where is your AO dr. located? I saw someone in FL, but would like to find someone closer if needed.
I’m glad that you have seen some improvements! It is still early days so hopefully you’ll see more improvements with time, there could still be some swelling, so maybe it might be worth leaving a CT for a bit longer, maybe the 2 months as Dr Hackman was expecting inflammation until then? The numbness will hopefully ease with time too, mine improved very gradually over months, I do still have a little bit around my jaw & ears.
I hope the incision heals completely too, definitely leave off massaging it for now, although that’s unfortunate if the incisions are feeling tight…
I know it’s hard to be patient, but it’s the best way with this surgery, that and focusing on the positives!
Your neck incisions look really good, @DeeCeeNorth! I do see the little oozy spots on your right ear incision & agree w/ @Jules. You can continue to work on the other incisions but that one looks to need a bit more time for healing. If you want to work on waking the nerves up in your face & chin, this can be done very passively by using a soft cloth & lightly passing it over the surface of the numb or sore areas. It doesn’t need to be a vigorous massage but just enough to allow contact between cloth & skin. That could also be done on the right ear incision as it will be light enough not to cause irritation. As healing progresses, you can become more “heavy-handed” (or fingered) when you massage those areas.
Six weeks is still pretty early in recovery. It truly took 6 months after surgery for me to be able to say most of my symptoms were gone. The healing you’ve already noted is a good sign of what’s still coming.
Thank you, @vap… hope things are improving for you as well! I’ve been to so many different docs to just figure out what was going on with my body (frustrating process), with so many of them saying it had nothing to do with my neck, until I saw Dr Hauser in Florida. He was the one who saw the styloids, ordered the CT’s, and diagnosed IIH and CCI (he also mentioned the C-1 involvement). It was such a relief. So I don’t really have a primary overseeing all of this (I’ve basically become that for myself, lol)… and I’ve always preferred naturopaths. I do have another follow-up with Dr. Hackman in August, so I’ll probably wait and see if he’ll order one (especially if things haven’t improved more).
I’m up in Wisconsin, and the AO chiro is not too far from me. I know he utilizes X-rays, but I don’t know if he’ll be into the details of a CT. Who did you see in Florida? I’ve seen videos and info about Dr Jeff Middleton… I like how knowledgeable and detailed he is, but that would be a fairly expensive visit for me!
Thank you, @Jules and @Isaiah_40_31… I really appreciate your words of encouragement! I have started massaging the neck incisions whenever I apply the creams, and now will gently massage the numb area under my chin. I realize that I was unrealistically hoping for more immediate relief, especially with the tremor, but I will continue to be patient… and focus on being grateful for the healing so far! It gets exhausting constantly monitoring my body, trying to decide if and how much it’s improving, lol. I am so looking forward to getting back into life! Patience!
You have done a great job being a self-advocate, @DeeCeeNorth and it’s good for you to be monitoring your recovery. I know it’s hard not to do that. I noticed w/ my recovery that certain symptoms kept my attention while others quietly disappeared. Over time even the ones that were pronounced snuck away, too. It was so gradual that in most cases I didn’t notice they were gone till I hadn’t noticed them for awhile.
Hi again,
I am glad that you were finally able to figure out what had been going on. I know that it took me a lot of doctor visits too before I knew for sure & that it is a relief to finally have a starting point for feeling better. I went and consulted with Dr. Hackman & he actually diagnosed me with Eagle syndrome on the left side based on my scans from a neurosurgeon in VA. Dr. Hackman was very nice and helpful. After talking with him, he said it would be worth a shot to see an AO doc to try to avoid surgery, I went to FL to see Dr. Middleton. He is very thorough and spent a good deal of time analyzing the scans he ordered. He also did an adjustment; however, he strongly suggested that I needed surgery on both styloids because of the IJV compression that he could see on the scan. That was the first I heard that I had bilateral styloid issues. Anyway, based on that & the IJV compression, I then consulted with Drs. Costantino & Tobias in NY. They both indicated that surgery was necessary, but they wanted to try to restore the blood flow by doing only one side. Now, we’re at the point of waiting to see if that plan has worked. I’ve traveled all up the east coast pretty much…my styloid vacations, ugh! Florida was an expensive one bc Dr. Middleton doesn’t participate in insurance for every part of his consultation & he is out of network for me for the part that does participate in insurance. So, between driving there, hotel room for 4 days, paying out of pocket, etc. that was costly. However, I do have to say that it helped define what was going on & helped me to know in which direction I needed to go. I thought about seeing Dr. Hauser & watched some of his videos, but once I saw Dr. Middleton, we were pretty sure that a surgical intervention was going to be needed. I also prefer naturopathic physicians, but it is kind of difficult to find them around here. I do have a nurse practitioner who serves as my primary & she does a lot with alternative/natural medicine so that is helpful. However, no one at her office had ever heard of Eagle syndrome. Also, just to let you know, I went by her office today for her to look at my incision. I am a month out of surgery & she said that it looks good; however, there is still a lot of inflammation in the neck area. I just want to encourage you that our bodies are healing, even though we think it should be happening more quickly. She recommended to keep massaging & to use Frankincense oil diluted with a carrier oil. Also, rubbing with castor oil is supposed to help inflammation & reduce scarring. The nurse also mentioned doing a castor oil pack with heat applied on the area. Sorry this is so long! I hope that you keep improving greatly!
Great post, @vap. Thank you for sharing more of your ES journey. Those sorts of details are very helpful for new members who may be frustrated by how long it’s taking & how much it has cost to get a diagnosis & ultimately find the right ES surgeon.
LOL… styloid vacations! I can relate! We tried to enjoy our visits to Florida and North Carolina, but, yes… would have been much more enjoyable without the styloid issues! I try not to think about the money spent, and focus on the experience, the people we’ve met, and the incredible knowledge I’ve gained (certainly didn’t need all that knowledge, lol!).
I’ve been alternating between a Frankincense and Myrrh balm that someone on the forum recommended, a colloidal silver cream, and a CDB cream. I’ll try castor oil, too. I appreciate the encouragement! Hope things keep improving for you as well!
I haven’t tried Myrrh yet. Is the balm one that you can buy or do you make it yourself? I totally understand about the knowledge gained through this process. I didn’t even know anything about the problems that the styloid process could cause before all of this. I actually didn’t even remember exactly where it was located. I do know now that my children now have a better understanding of head anatomy than I ever did…maybe it will come in handy for them if they ever go on a trivia game show…Hopefully, they won’t actually have do deal with getting a styloidectomy, but at least maybe they will be able to get diagnosed more quickly if they start having symptoms.
I purchased the balm online… it was recommended by Elena here in the forum:
And yes, lol… my kids also know way more than they ever thought they would about head and neck anatomy! I just wonder about all the people walking around with symptoms that have no idea that it could be directly related to ES. The first MD I saw screened me for Parkinsons and MS, ordered an MRI, and basically said there was really nothing she could do after prescribing a pharmaceutical. She was one of the first in a very long line of doctors and specialists I saw.
Hi!
Thanks for the link on the balm. I checked out the website & it looks like their products are good & have clean ingredients. Of course, I want to order lots of stuff, but you are right that they are a bit pricey. I guess that if they are better for you & last a while, then it would be worth the investment. I’m glad to know that the balm helped you some. i have been having jaw pain from under the chin up to the ear, so that balm might be something that could be beneficial…
Also, I was wondering if you have noticed an improvement of the IIH symptoms since your surgery? Are they planning to do anything to make sure that it has improved? My surgeon had me have a neuro-ophthalmological exam prior to surgery which showed that I did have very mild papilledema. The eye doc wanted to see me again after the surgery to see if it helped with that, so I will have that appt sometime coming up. Hope that you’re continuing to improve each day!
I can tell that the balm is going to last a long time. I have another follow-up with Dr. Hackman in August, but I still have symptoms (believed to be stemming from IIH as a result of IJV compression). They seem to be gradually improving (which is what he said he expects), but as I mentioned, I would love to get another CT to see if the IJV compression is still there from C-1. I have an appointment soon for AO, and will figure out where to go from there, if need be!
@DeeCeeNorth - I hope C1 is not continuing to cause trouble w/ your IJV. I’m glad you have a follow-up appt w/ Dr. Hackman coming up in Aug. & the AO appt. sooner. Hopefully the AO doc can provide some good insight regarding healing & remaining symptoms though w/ more time, I expect they will continue to decrease.
I have started massaging the neck incisions whenever I apply the creams, and now will gently massage the numb area under my chin. I realize that I was unrealistically hoping for more immediate relief, especially with the tremor, but I will continue to be patient… and focus on being grateful for the healing so far! It gets exhausting constantly monitoring my body, trying to decide if and how much it’s improving, lol. I am so looking forward to getting back into life! Patience!
We tried to enjoy our visits to Florida and North Carolina, but, yes… would have been much more enjoyable without the styloid issues! I try not to think about the money spent, and focus on the experience, the people we’ve met, and the incredible knowledge I’ve gained (certainly didn’t need all that knowledge, lol!).