UPDATE on me

I haven’t been on here in awhile so I thought I drop a update. My spinal tap for this Monday is cancelled because I have some kind of infection going on. Fever and lymph nodes are sooooo swollen and they put me antibiotics. I think it’s a blessing though because when I called to reschedule it I asked the nurse what the doctor put in for the reason for the spinal and she said headaches and to rule out MS. oh was I mad! He was only doing it to get ready to put a brain shunt in. He told me he was checking for Lymes disease other tic bourne illnesses, guillian barr syndrome, other proteins and antibodies and MS ect. I’m so very tired of all this. This coming up Thursday I see the Eagles specialist, I pray to God he can help me. I’m hoping with the angiogram results and my MRI’s and CT scans he can tell me if the intercrainial hypertension is being caused by the compression on my carotid and jugular viens. I know eagle’s surgery is major but my gut tells me just letting them put a shunt in my brain without knowing what’s causing the IH is not wise. My friend had one put in 10 months ago and it’s been nothing but infections and spinal tap after spinal tap with NO relief of any of her symptoms. Truth be told she should of been tested for MS now she has so permanent vision loss. Any how November 28th I see the MS SPECIALIST and am hoping he can give a diagnosis and advise me on whether I should have the spinal tap or not. Now the tremors have started on my right side, I don’t think thats from Eagle’s. Has anyone had improvement with IH after eagle’s surgery?

Good to hear from you, zebra3586! What a fiasco for you. I’m sorry for what you’ve been through & are still going through. I think you’re very wise to put off the brain shunt until it’s the only viable option for your situation.

I think most of the people who’ve posted on here w/ IH as a symptom got relief from it after their styloid(s) was/were removed. I know for sure Jules one of the moderators for this site had IH as an ES symptom. ES surgery helped reduce her symptoms a lot. I’m sure she’ll make a reply to your post.

Thanks isaiah! I’m just so tired of all this. I hope the ES specialist has enough info with my current imaging. I know it shows my jugulars being compressed but I don’t know if there’s any calcification of the ligaments, tendons or styliod muscles. Do you think he would have to do additional imaging to see all that?

I’m so sorry that you’re having to deal with all the extra stuff- it’s such a battle sometimes and I’m sure you probably haven’t got the energy for that… Yes, I have had much improved IH symptoms after surgery for ES- both jugulars were pretty compressed, but especially the left one. It’s made such a difference! I don’t think that the vessels have sprung back tp normal completely, but I do feel loads better. I never had any measurements of IH pressure, nor a spinal tap, the consultant was happy to go by symptoms and the scans. Kingdoz is going through something similar at the moment and has just had a spinal tap, and is hoping t have surgery- you could pm him.
I would’ve thought that the scan you’ve already had should show any other calcifications; sometimes radiographers add calcified ligamnets onto the length of the SP and measure the whole lot together, so that might have happened anyway… I hope that your appt goes well with the ES doctor, I’ll add my prayers in with yours!

I agree w/ Jules that you shouldn’t need additional imaging to present to an ES surgeon unless (s)he asks for a CT w/ contrast to see if &/or which vascular tissues are being compressed & could be causing the IH.

Please let us know the outcome of your appointment w/ the ES specialist you’re seeing on Thurs. DO NOT let this doctor be dismissive of your symptoms or intimidate you. There have been people on this forum who have gone to advertised ES “specialists” only to have their symptoms disregarded or blamed on something else & then offered drugs or PT as the solution for their pain. Surgery is truly the only cure.

If need be, take a stand for yourself & your symptoms. As has been said before, print off some of the applicable ES research articles in the NEWBIES section under the HOME tab above & take them with you to your appointment so you are “armed & dangerous” in case you need concrete evidence for your situation. If the ES specialist is willing to do surgery, make sure you understand the process i.e. will it be intraoral or external, partial or total removal of styloids/s-h ligaments, hospital stay vs. outpatient, etc.

Thanks isaiah I actually have it printed out just for that reason. I won’t let them do the internal one, not enough room to work in and risk of infection ect. I’m hoping he doesn’t give me any problems. I even printed out the peice on why brain shunting is not recomened.

Good work zebra3586!

Thanks hun. I’m still feeling like it’s going to be a battle. My cousins coming with me but I don’t know how much support she’ll be. She’s leaning towards the shunt or this doc in Chicago that drills this hole in the skull to release pressure. She doesn’t understand eagles. She keeps saying don’t you need your styloids and ligaments and tendons? What are they gonna anchor stuff to when they’re gone? I tried to look up those answers but couldn’t find anything on whether you need them or not and what stuff is attached to after things are removed. Maybe you know/ or could explain it to me?

I asked those questions before my first surgery & what I learned is that my surgeon both removes the styloids as close to the skull base as possible & the s-h ligaments which connect to the styloids & the hyoid bone. The s-h ligaments play a minor role in swallowing. The styloid processes are anchor points for those ligaments & perhaps some others (not sure about that - haven’t done the research…). These 2 “body parts” seem to play very minor roles in the big picture of our daily lives/activities. I know this is kind of a vague answer & maybe someone else on this forum has more info to offer.

Removal of both the styloids & ligaments truly has only brought health back for me. I occasionally find I have a small amount of difficulty swallowing things like water (i.e. it goes down the wrong way) but that is a small price to pay for the nearly complete relief I have from my ES symptoms. I did also end up w/ first bite syndrome which hasn’t fully resolved & is a common side effect of surgeries in the area of the neck used for styloid removal. Again, FBS is nothing compared to my ES symptoms & I can live with it. I had my surgeries in 2014 & 2015 & am almost 3 years out from my first surgery - long enough to know that my good results are enduring.

I hope this info is helpful!

Thanks hun it is helpful to talk to someone who’s been through it. We’ll see how it goes on Thursday.

Good luck with your appt.!
I didn’t get much of an answer about that when I asked either- all I can say is that I’ve noticed no difference with speaking, swallowing etc since having both styloids removed. Mine were taken back to the skull base so there’s definitely nothing left for anything to be attached to- not sure whether the ligaments were removed as well or not (they weren’t calcified), so maybe they’re still in, I don’t know. I guess I was more concerned with whether I’d have problems with nerve damage etc. so didn’t really ask too much about it.
Let us know how you get on!

Thanks jules I’ll let e everyone know who it goes tomorrow with the doctor. Did you end up with any nerve damage?

I have numbness, that’s all, around my ear. I was getting alot of numbness and tingling before the op one side anyway, and now that’s completely better 2 years post-op. The second side I had done over a tear ago and I have a little ear numbness still, but it’s gradually going. I’d take numbness over pain anyway! I did have reduced hearing one side post-op, very noticeable, but that went 2-3 weeks after the op. The most common nerve damage with surgery seems to be mouth droop, and then shoulder problems, but it’s been a handful of members on here, and usually improves with time.

Thanks Jules I’m with you I’ll take the numbness any day too. As for hearing my right ear has a loss anyway they expect I’ll be deaf some time down the road.

Sorry to learn about your hearing loss! I began having symptoms of Meniere’s Disease between my ES surgeries. It’s mostly under control for the moment & I’m hoping will be permanently. When it gets out of control I have to take Prednisone for a few days which I HATE!!!

Hi isaiah, my hearing loss is from chronic untreated ear infections. Then I developed a chloestreatoma and they had to completely reconstruct my ear canal and put in a titainium implant to replace one of my fine hearing bones that got eaten through I can’t take steroids until this eagles syndrome is handled and the IC hypertension is resolved the doctors said it will make the IC hypertension worse if they put on them. I’m in a catch 22 because if I for sure have Multiple sclerosis part of the treatment " is steroids" lol. Question: can eagles affect the superior vena cava? And how does it affect the vagus as far as symptoms, what would the symptoms be?

Well, utter waste of time. Just like you said claimed to treat eagles syndrome and told me that there’s doctor’s out there that don’t believe in it and he’s one of them. He said ES doesn’t affect the neck, jaw, cause dizzy spells or anything I printed out. He starts throwing out questions like if you have it why would one side be worse than the other they should be equally affected? So that’s your reason?!? I’m speechless! So of course he never got my images and I have to wait two weeks for him to get them and look them over with a radiologist. He told me all that matters is length. I couldn’t even respond I froze and just wanted to go home. I didn’t even ask about it causing intercrainial hypertension cause I just knew he’d say it doesn’t cause that. So basically I’m screwed.

I’m HORRIFIED!!! What is wrong w/ these doctors!?!? Even the “good” ones discount symptoms that are “outside the box” as being non-ES related. I can smuggly say that my “outside the box” symptoms all went away after I had surgery. I just learned to smile & nod as long as surgery was going to be done regardless.

Can you afford to travel out of state to see one of the doctors on the ES Doctors’ List? I’m so sorry for your frustrating appointment!

I’m not sure about the superior vena cava being affected. It’s arch is in the area of the collar bone so below the hyoid bone thus I would say if ES affects it, it’s via nerve impingement not by direct pressure on the vein as opposed to the carotid artery, jugular vein & vagus nerve which can be compressed by the styloids or calcified ligaments. Since some people have collar bone & shoulder pain as part of their ES symptoms, perhaps the cranial nerve that serves that area also affects the SVC? That’s a good question for someone more expert than I am!

Regarding the vagus nerve, symptoms can range from heart palpitations to stomach upset. I had crazy heart stuff going on which I attributed to a compressed or entangled vagus nerve, but in retrospect, my blood pressure would drop instead of increasing when I exercised hard & when I had my head in certain positions so perhaps the cause was jugular or carotid artery impingement. I never had a scan w/ contrast to check this out. My symptoms have stopped since I had surgery for the most part.

I’m hoping that something changes after he views my images. He said if there is calcification anywhere he’ll see it. The angiogram SHOWED compression in all the areas. If none of my symptoms are typically caused by eagles syndrome then what are the typical symptoms of eagle’s! He didn’t elaborate on that or anything. I just don’t know what to do anymore. I’m in a catch 22, if the MS doctor offically confirms that I have MS, I can’t even recieve treatment during a flare because part of that is steroids which they won’t give me because of the intercrainial hypertension. If it’s truly eagles causing the hypertension and he doesn’t remove them… and round and round we go. I DO NOT want brain shunts put in. I’m sorry I’m whining and venting I just don’t want deal with this anymore. The cognitive problems are so bad I can’t remember things from yesterday. The head rushes and numbness in the back and top of my head are driving me nuts! It scares me how frequently it’s become. I hate how they feel the heaches are back. Then it’s like ok what condition is causing what? Then he’s trying to school me on Ehlers-Danlos! Oh that only affects the joints! You idiot ! Ehlers-Danlos is a genetic defect in the collagen that makes up the whole body! That’s why I can pull the skin on the top of my hand up so high! I wanted to slap the mess out him! I may not be totally up to par on eagles, but I KNOW Ehlers-Danlos! Again sooooo sorry for the rant! I could go out of state Isaiah if it’s a near by one but I just want this over and done, it would have to be a last resort. Hes