I knew it!

So after a ton of tests my neurosurgeon is trying to discourage removing my styloids. He says it’s major surgery and might make things worse. Ok… your the one who said my styloids were compressing my jugulars, and caroid veins and if left in the would eventually cause them to dissect my veins. He said the ENT is concerned about me having Ehlers-Danlos and healing after the surgery. He’s more concerned with the intercrainial hypertension, and wants to do a spinal tap (he suspect’s MS because of the brain lesions so I get that part) and feels removing spinal fluid will have with the hypertension. He also talking about a brain shunt if the hypertension in my brain continues. Ok guys, help me out here, from what I’m finding in research removing the styloids stops the compression and usually then the intercrainial hypertension resolves? I know he’s not a special in Eagle’s Syndrome, so is it his inexperience or am I missing something? There are some specialists in Eagle’s Syndrome that I will be seeing for a second opinion, but I’m just wondering I’m I not understanding something? Please any comments or advice?

How was your intracranial hypertension diagnosed? What are your symptoms?

So frustrating! All I can say is that I has symptoms of Intracranial Hypertension (for Magen, that was lightheadedness/ dizziness, pressure in my head and ears, pulsing in my head and neck, hearing my heartbeat whooshing in my ears, fuzzy thinking…), and that was recognised by the doctor I saw. Initially he suggested getting a lumbar puncture done to see the pressure levels, but as soon as he saw the CT contrast pics, he showed me the compression, and said that he would operate. And after the first side was removed, the majority of the IH symptoms went, unless I did much exercise or got very hot. So getting them removed cured me! The only thing I would say is that maybe the veins might not spring back having been compressed for a while (I don’t think mine have completely), so it may be that you would need to have a stent put in as well to keep them open. I don’t know much about EDS, but doesn’t it affect the connective tissues, so perhaps that could be more of an issue for you?
Yes, having some of the spinal fluid will help temporarily, but it’s not curing the problem! And wouldn’t having a brain shunt put in be as risky an op as removing the styloids? Putting a shunt in would obviously help with the symptoms, but not actually cure the problem! It sounds like maybe he’s just taking the option he knows more about?
I would definitely try to see someone experienced in ES, and ask questions about how your EDS would affect the healing and if it would affect the veins springing back.
I was just thinking today that we’d not seen you on here recently, and was going to message you to see how things are going! I hope that any more appts with different doctors go better!

Jules I love you! You! Everything you said is what I was thinking dead on! Monday I’m making an appt with my primary doctor getting a referal to an eagle’s specialist and hopefully an Multiple sclerosis specialist. And hopefully the Eagles specialist will know what he’s doing.

Hi Jules,
Got my MRI results back today, it’s Multiple sclerosis. Just what I needed!

Oh no, on top of everything else… Hope that the MS specialist can offer you some help too… :two_hearts:

I’m hoping too lol

I would discourage you from having any unnecessary surgeries if you have MS. I work in PT and over the years I have seen several MS pts that have exacerbations after surgery (for unrelated things, shoulders etc) Keep your stress level as low as possible. Also there is a new drug on the market for MS that is supposed to be very promising OCREVUS. Check with your neurologist if it is right for your type of MS. Good luck to you!

Thank you vanwolf. I’m trying to weigh my options. It’s either surgery for the Eagle’s thats compressing both my jugulars and carotid vein or brain surgery for a shunt. Jules is right the shunt will not fix the problem and then I run the risk of infections throughout my life, I know to many people with them and they have so many problems. I will take your advice and proceed very carefully, but I have to have a consult with a specialist that knows eagle’s not an ENT and neurosurgeon that have never treated it and know little about it. The neurosurgeon only had one patient with it, and he’s dead because he did not take my neurosurgeons advice and have the surgery. I will proceed carefully though as I said, thank you for your input! Every little bit helps!

Check out elanaspantry.com. She has MS & has very good success in helping control her disease w/ diet. She may be taking medications as well. Not sure about that.

Thanks isaiah will do!

Hi magen7984,
I was having vision issues and pressure and pain in my eyes and went in for a second opinion on a brain tumor ( a menigioma). I was getting really bad head rushes is the best I can explain it rushes noises and dizzy spells and headaches that wouldn’t let up. They did s cerebral angiogram and that was how I was officially diagnosed with the intercrainial hypertension, and hypertension in my entire veinous system.