I recently went to a well known Eagles doc. My styloids are not super long. He said my main problem is that my right IVJ is being compressed by a wide upper cervical vertebra, not sure which one. It seems there is not enough room in there between the vertebra and the styloid to accommodate the veins/nerves. He is not sure if removing the styloid would help or not but is willing to remove my styloid. He said the space there is so small that the styloid is probably compressing the nerves as it is right next to the vagus and gloosopharyngeal nerves.
On thinking about this I suspect the styloid would have to be removed about up to the base of the skull to keep it from compressing my IVJ and that is not the normal procedure that ENTs do as they typically can leave about 1 cm- but the problem is typically just the styloid with no blood vessel involvement. . Also it seems to get complete relief I need something done about that extra wide cervical vertebra. I think I probably need a neuro vascular surgeon at this point but I am having a hell of a time just getting into see anyone. I mean do they remove styloid processes?
With the vascular and cervical involvement I am a bit concerned about having anyone that does not have "vascular" in their title do this surgery. If anyone could help me I would be so grateful I live in MD and the closer the better. I have a child that has been seriously ill for 9 years and I am his only parent. Since I have added on the symptoms in the past year of glossopharyngeal and trigeminal neuralgia, my arm is constantly shaking and if I lift it too high I cant talk and feel I will pas out. The back of my tongue is numb
This speech and tongue stuff is because my nerve is tongue nerve is trapped and I think the rest is becasue my vagus nerve is also partly trapped in this small space. I am getting afraid I have to do something whether I can tolerate the pain/disability or not. I have to be around to take car of my son.but the decision of scary surgery or what will happen if I don't get help- yikes!
Can only offer you sympathy- sounds as if you're in a tough situation with having to look after your son too. I think that if you can find a surgeon then you need the surgery- this won't go away on it's own, and although the thought of surgery is very scary, I think that if you have vascular ES then then it's an even easier decision to make. Have you looked at the spreadsheet for surgeons? Can't help with that as I'm in UK.
I'm waiting for a CT scan with contrast myself, as what started with classic ES for me now seem to be progressing; I get pulsatile tinnitus, and a terrible feeling of pressure and then pounding in my head in certain positions. I get a pretty much constant awareness of the pulse in my neck- I can feel it beating there, just where I get a lot of pain. The pain and pressure in my ears has returned with a vengeance too, and the feeling of being off balance a lot. I think maybe the vagus nerve is being compressed too as I get more palpitations too, and some other weird feelings which I can't explain!The consultant I saw suspected raised intra-cranial pressure, but wasn't prepared to put it down to the styloid until he's seen the Ct scan. So I will wait, and try to not get too worried!
Hope that you can find a doctor to help you...God Bless.
Thank you for your kind and thoughtful response. I am very worried as I don't think my case is straight forward. From my reading I have found that the vagus and glossopharyngeal nerve run right by the styloid. I have all of the symptoms you have as well. Unfortunately I have just been adding more and more. My own CT scan did show elongated styloids but they are not too long. The MRI is what told the story on my problem and I was not really expecting it to be anything other than styloid involvement. I hope everything is straightforward for you! Warmest personal regards
I also had IJV compressed by my left styloid. The surgeon was a Skull Base ENT.. He removed all 4.5cm of the styloid all the way up to my skull base. The jugular vein did have good flow after he removed the styloid.
I live in MD too, & frankly I have been putting surgery off for years!! I finally feel like I'm getting closer to have this removed, but still haven't picked up the phone & made the call. I have been referred to Dr. Rodney Taylor @ University of Maryland. (Someone this site a year or 2 ago had this done by him & another doctor assisted. Maybe they could put a team together for you too). If you want my phone # to talk message me.
Kitty9309 Did you have your surgery done by Dr. Cognetti? I do remember when we chatted in the past. Did you ever go to University of MD & see Dr. Taylor? If you did what helped you chose one over the other? Just curious
Kitty9309 said:
I also had IJV compressed by my left styloid. The surgeon was a Skull Base ENT.. He removed all 4.5cm of the styloid all the way up to my skull base. The jugular vein did have good flow after he removed the styloid.
I actually saw Dr Guardiani first. She is the one that does the surgery with Dr. Taylor. I actually saw her first but it was the next eagles dr that showed me the jugular compression. Dr guardiani said my carotid was near my styloid but she did not know if that was an issue for me or not. That is actually what I am trying to decide now because of the jugular compression I am thinking it may be best to see a skull based surgeon as perhaps they would be able to take the styloid back further or shave some off the cervical vertebra that I believe someone here had done?
I was told my cervical vertebra was compressing the styloid but the styloid was close to it. I just printed a MEDLINE paper about IVJ compression and it looks like it is almost always due to either the styloid or the digastric muscle which is associated with it. I also have tongue issues and I read that that nerve runs at the base of the styloid. My styloids are not that long at 3.6 so nothing is clear cut in my case except I have a lot of symptoms. I would love to know the experience w Dr. Taylor.
Hey peaceful buttons I still have not picked up the phone yet to call Dr. Taylor's office. I will ask his experience when & if I ever get the nerve up to call. I was in a YOGA class in Columbia last week when this women over heard me talking to my friend about it all. She interrupted us & said you need to go see Dr. Taylor & couldn't say enough about him. She was a anesthesiologist @ Univ. of MD & use to work w/ him. She wrote down her name for me to talk to him about as well.
Who was the next Eagles Dr. you saw that showed you the jugular compression? And who is the next one your gonna consult w/ if you don't mind telling me? I know I have compression too. I actually had a MRI that showed a blocked jugular a few years ago. I was blown off by Dr's telling me it will unblock itself and still experience that same feeling, from time to time. I also get pressure behind my eye on that side & my eye twitches too. I experience a lot of dizziness as well. The inside my ear itches & pain off & on, plus I have tinnitus 24/7. I have had my tongue go numb on that same side a few years back when I had my back bottom tooth extracted on that side. My son, who was taking an anatomy class @ the time in college, was the one who helped me figure it all out, how the nerve to the tongue wraps around the styloid.
Hey! No- I did not go with Dr. Cognettti. He did not think my jugular would open up. I am very high risk intubation due to my extensive cervical fusions as well as unusual trachea anatomy. That is why I went with the Skull Base ENT.
My severe exertional/high pressure headaches are gone now! ;) (I also have a shunt for Intracranial Hypertension. Confusing picture, but I told my neurosurgeon that I am certain the styloid removal took away those headaches.)
I had Intracranial Pressure Monitoring a few months after styloidectomy and my brain pressure was perfect!
Are you near Columbia, MD???
tbone said:
Kitty9309 Did you have your surgery done by Dr. Cognetti? I do remember when we chatted in the past. Did you ever go to University of MD & see Dr. Taylor? If you did what helped you chose one over the other? Just curious
Kitty9309 said:
I also had IJV compressed by my left styloid. The surgeon was a Skull Base ENT.. He removed all 4.5cm of the styloid all the way up to my skull base. The jugular vein did have good flow after he removed the styloid.
I saw Dr Cognetti as well. He was very kind and knowledgeable and is willing to do the surgery just not sure that it is responsible for all my issues. I have suspected for a while that I may have iiih but my Neuro will not look into it as I do not have eye symptoms. Although I know not everyone has them. Anyway these last 25 years the drugs that help the most by far were diamox and topomax. I had always wondered why these were so effective especially diamox which is not a common migraine drug. But both these r used for iih I found recently. Then the Dr told me my ijv was compressed so I am thinking that fits with my iih theory and would explain my vertigo. I actually have all the signs of eagles syndrome too but stlyloids are not super long at 3.6 cm. Dr C thought it looked like my cervical vertebra was compressing the ivj but all those structures r so small and close together I know when they get in there it could b a bit different. I am hoping just taking the styloid would b enough but I have read this type compression of inv happens between C3 and the stylish. I am worried that the steroid will not b taken back far enough. Of course I did not get to talk to him about that as I read all this later. I also live in me and am really comfortable w this area although I will go where I need to. Did u have the styloid taken back to C3? I used to live in Columbia and worked in Rockville. I grew up in salisbury and moved back here 20 years ago mostly due to these health problems so I would have family to help me if my issues got worse and boy did they. Prior to getting the balance nerve killed I was like an invalid. Is ur doc in Columbia?I have so many peripheral nerve type stuff they look for me every now and then again. Where my tongue goes numb on one side and I slur speech from that and I have already gone deaf in one ear I am scared of more deficits. The new saw said it sounds as if I have nerve compression as well. I am really thinking I want to talk to a neurosurgeon or neuromuscular person. Do I need surgery by a Dr like that? Since u r so happy w r outcome and ur case sounds somewhat like . Mine I would love to know who ur doc was for surgery. U can pm m e if u want. Thanks so much for ur quick response btw
Hey peaceful buttons I still have not picked up the phone yet to call Dr. Taylor's office. I will ask his experience when & if I ever get the nerve up to call. I was in a YOGA class in Columbia last week when this women over heard me talking to my friend about it all. She interrupted us & said you need to go see Dr. Taylor & couldn't say enough about him. She was a anesthesiologist @ Univ. of MD & use to work w/ him. She wrote down her name for me to talk to him about as well.
Who was the next Eagles Dr. you saw that showed you the jugular compression? And who is the next one your gonna consult w/ if you don't mind telling me? I know I have compression too. I actually had a MRI that showed a blocked jugular a few years ago. I was blown off by Dr's telling me it will unblock itself and still experience that same feeling, from time to time. I also get pressure behind my eye on that side & my eye twitches too. I experience a lot of dizziness as well. The inside my ear itches & pain off & on, plus I have tinnitus 24/7. I have had my tongue go numb on that same side a few years back when I had my back bottom tooth extracted on that side. My son, who was taking an anatomy class @ the time in college, was the one who helped me figure it all out, how the nerve to the tongue wraps around the styloid.
So you are a Marylander also? It must be contagious.I saw Dr Guardiani a throst specialist. She and Dr. Talor do this surgery together. Dr. Taylor is a skull based surgeon. I did not see him. Sh eis wonderful. She was not sure either about my case.I thnk some fo the issue is I went to all of these people when I was heavily medicated with neurotin and topomax. I decided after I saw Cognetti to stopthe pain med to get at what my symptoms wer then. And of course all teh Eagles symtpms got worse and instead of being numb I was in pain. Did not even last the day. I kep telling everyone I was num but the topopmax seems to selectively make me num where the pain s. I am thinking to go see a doctor in Pittsburg that is a specialist in glossopharygeal neuralgia.I saw thewebsite and he states if about different things to look for with the glossophyngeal symptoms . It usually is due to an artery compressing something but I strongly suspect mine is stloid being too close to cervical vertebra fo mny more reasons than just my appoint with Dr Cognetti. II am sorry if this is sloppy the computer screen is hurting my eyes and I dont have my glases on! Why do you think you have vascualr compression? O I went deaf in my affect ear to so I am wondering why that would happen, Never seen anyone else on here have that
Yes, I live in the Linthicum/Ferndale area near the airport. It sounds like you got great results from your surgery. Who was the skull base ENT that did your surgery? Who is your neurologist you see now, are they in MD too? I have lived w/this for so long just out of fear to do surgery & leaving worst than I am now, I just deal w/ it, like it's my new normal. I don't think I remember what normal is suppose to feel like! I have been trying to wait til my boys finish college plus I'm a hairdresser w/o any sick pay. But these flare ups I get just make me want it out. It SO ENCOURAGING to hear how well your doing. Thanks so much for sharing!!
Kitty9309 said:
Hey! No- I did not go with Dr. Cognettti. He did not think my jugular would open up. I am very high risk intubation due to my extensive cervical fusions as well as unusual trachea anatomy. That is why I went with the Skull Base ENT.
My severe exertional/high pressure headaches are gone now! ;) (I also have a shunt for Intracranial Hypertension. Confusing picture, but I told my neurosurgeon that I am certain the styloid removal took away those headaches.)
I had Intracranial Pressure Monitoring a few months after styloidectomy and my brain pressure was perfect!
Are you near Columbia, MD???
tbone said:
Kitty9309 Did you have your surgery done by Dr. Cognetti? I do remember when we chatted in the past. Did you ever go to University of MD & see Dr. Taylor? If you did what helped you chose one over the other? Just curious
Kitty9309 said:
I also had IJV compressed by my left styloid. The surgeon was a Skull Base ENT.. He removed all 4.5cm of the styloid all the way up to my skull base. The jugular vein did have good flow after he removed the styloid.
I also took both Topamax and more recently- Diamox prior to my shunt placement and ultimately, styloid removal.
My jugular was compressed between C2 and the styloid. The surgeon removed the entire styloid up to the skull base. I posted pics here last year if you search my name. I had a 3D CT prior to my fusions and had a CTV which showed the jugular compression.
I will PM you. :)
peacefulbuttons said:
I saw Dr Cognetti as well. He was very kind and knowledgeable and is willing to do the surgery just not sure that it is responsible for all my issues. I have suspected for a while that I may have iiih but my Neuro will not look into it as I do not have eye symptoms. Although I know not everyone has them. Anyway these last 25 years the drugs that help the most by far were diamox and topomax. I had always wondered why these were so effective especially diamox which is not a common migraine drug. But both these r used for iih I found recently. Then the Dr told me my ijv was compressed so I am thinking that fits with my iih theory and would explain my vertigo. I actually have all the signs of eagles syndrome too but stlyloids are not super long at 3.6 cm. Dr C thought it looked like my cervical vertebra was compressing the ivj but all those structures r so small and close together I know when they get in there it could b a bit different. I am hoping just taking the styloid would b enough but I have read this type compression of inv happens between C3 and the stylish. I am worried that the steroid will not b taken back far enough. Of course I did not get to talk to him about that as I read all this later. I also live in me and am really comfortable w this area although I will go where I need to. Did u have the styloid taken back to C3? I used to live in Columbia and worked in Rockville. I grew up in salisbury and moved back here 20 years ago mostly due to these health problems so I would have family to help me if my issues got worse and boy did they. Prior to getting the balance nerve killed I was like an invalid. Is ur doc in Columbia?I have so many peripheral nerve type stuff they look for me every now and then again. Where my tongue goes numb on one side and I slur speech from that and I have already gone deaf in one ear I am scared of more deficits. The new saw said it sounds as if I have nerve compression as well. I am really thinking I want to talk to a neurosurgeon or neuromuscular person. Do I need surgery by a Dr like that? Since u r so happy w r outcome and ur case sounds somewhat like . Mine I would love to know who ur doc was for surgery. U can pm m e if u want. Thanks so much for ur quick response btw