Has anyone here ever heard of this type of cyst. I also have an arachnoid cyst in brain, last MRI they discovered the thornwaldt cyst. From what I have found they are rare, but I am wondering if anyone has had any experiece with it. I have massive headaches and dizzness, now I wonder if it's the arachnoid cyst or combination of both.
Just found out a few weeks ago that I have this. It is pretty rare. I been handling massive heaches known as occupital headaches that come from the cranial nerve.
dizzyness as well. Feel free to email me. Notice you had posted last year. Guessing that they have remove this cyst by now. Like to know how did go.
Hey, it's nice to know you're not alone. No actually they haven't done anything with mine. I had more pressing issues; I'm 40 and had open heart surgery in Jan of this year. So I'm still dealing with they cysts in my head and also trouble with the surgery. What are the doctors telling you about yours. I never followed up with a specialist, I'm actually waiting for my disability. Hope you are doing o.k. feel free to email anytime also.
I HAVE THORNWALDT CYST AND SUSPECT INFECTION. HAD WEIRD INFECTED SALIVA GLANDS AND COMPLICATION WITH HOSHIMOTOES THYROIDITIS WHEN PARATHYROID SWELLED. NOTHING DONE WITH THIS. SEEMS EVERYONE IS STUMPED.
I too have just found out I have a Thornwaldt cyst. I was curious about you because I too have Hashimotos thyroiditis! Both diseases appear to be quite uncommon.
Please let me know your treatment. I go to see a neurologist this next Tues. I also have 2 herniated discs in my neck. All of this is causing major headaches, neck pain, dizziness, and my right ear is plugged all the time. If I turn my head to the left, my ear will briefly open up. Miserable, I swear.
I have an 8yr old son who keeps sinus infections and is on a host of allergy meds/shots. Last year no hints of a cyst. Friday new CT shows he has one too! Facing tonsil,adenoids and cyst removal. My 15 yr old has an arachoid cyst, found it at age 9.
yes, I too have a tornwalt cyst maybe two im not real sure, thought though it was like a retention cyst. i also have a traumatic brain injury and, my new neurologist suspects like multiple concussion.. i started seeing her because umm i am having severe dizziness and well possible my sezuires are coming back and my vission is getting worse
I also have a thornwaldt cyst as well as hashimotos thyroiditis with nodules. I am in so much pain with chronic sinus infections, ear pain, really bad breath .....all the symptoms. I just found out and will be seeing a Dr this week.
What do they do for this cyst because I think it is the cause of my ear and sinus problems.
Hi There I had a tornwaldt cyst and had it removed years ago. They had to cut the upper part of my mouth open and laser back to almost the back of my spine. It sounds hard but it was actually a simple operation and recovered in about 2 weeks:) So don't be scared just make sure you have a good ent that is familiar with this type of cyst. My first surgery didn't go well they missed 75 percent of the cyst the surgery the second time was great I have been free of this nusciance for over 20 years:)
My problem is slightly differnt. I have a very strong drain like smell from my nose and on reserching about what could be causing this, i came across this tornwaldt cyst. I would like to have a specialist who knows about it so i can have a scan.
I had adenoidectomy as a small child. Then in my teen age, I used to have terrible migraines, dizziness, lividness, and fainting that were for a long time attributed to being that age and trying to skip school. Finally, after 5-6 years, an ORL and team of other MDs took me seriously, and 2 MRIs later the Thornwald cysts, or abscesses rather in my case, were found (barely). I had surgery in 1997, where they "marsupializated" the abscesses; eventually, at a post-op checkup, the ORL pulled them (or at least some of them) out.
For a while now I've had post-nasal drip, and for the past few months daily migraines (with the whole sensitivity to light/noise and nausea thing) and dizziness, so I wonder if it's the same thing again.
I just found that I had a Thornwaldt cyst ,about 8 weeks ago . I just had it removed yesterday . I decided if it din't belong there then I did not want it . I have lots of medical problems and this was an easy fix . They went in through my nose . I have a slight sore throat , but that is it . Good bye and good riddings to this nasty little cyst .
How did the doctor diagnose the Thornwald cyst? Was there any drainage into your throat before the diagnosis? My doctor thinks I might have a Thornwald cyst and wants to remove it. All he did was use an endoscope to see it. I'm thinking about a second opinion.
I too have a Tornwaldt cyst. I was having problems with dizziness on & off and low grade fevers which they found no cause. Several months later I got what I thought was a sinus infection and sore throat. Two weeks later I had pus discharge from my throat. The ENT found the cyst with the endoscope. I sought a second opinion. It only needs to be removed if it gets infected again. I am going to see the ENT Thursday because it looks like it's infected again. I still need a good doctor in the Chicago IL area or at one of the best hospitals (johns hopkins or mayo clinic). I have multiple health issues (clot in vein in brain and hole in heart) that make surgery high risk. The doctors don't seem too concerned because I am only 39. But I want someone who is as concerned as I am.
My 2 year old son had an mri for seziues and while it ca back fine, he has 2 1mm cyst, likely representing incindental tornwaldts cyst. Does any one here have more than one? We have an appt with hisent in the am but I wish there was more info on the web!
Just found out bout thornwald cysts on mri report, have had thyroidectomy from hoshimoto thyroid disease, plus neck injury.... neuro consult for spinal surgery Oct. 1st.... looking for info on this I get earinfection constantly and ringing in my ears constantly, plus all the fun of spinal stenosis... so any info would be great ... ty
just found out from an MRI that I have I have a Tornwaldt cyst too. I also have Hashimoto's thyroiditis.
Interesting - maybe people with autoimmune conditions are
just more susceptible to getting these cysts...
found out few months ago i had thornwald cyst after mri scan for ringing in my ear they told me it was harmless and no further treatment needed but still having ringing in ear and constant sore heads after reading this page will be going back to see doctor
I just had to remove my tornwaldt cyst that was the size of a quarter. It was just discovered on mri cervical test and the ENT stays that I was born with this and that is y im having ear pressure and fluid in middle ear, because fluid gets trapped in tube- from swelling an in return i had severe headaches, pain behind ear,and sore throat. i recommend zrytec-d for sinus until cyst is removed. simple surgery, please dont wait if u have one...many complications can occur if cyst is left there...seizures, dizziness, reoccurring infections of ear an throart...also get lots of crushed ice to numb throart post-surgery and be sure to ask abt draining ears or needing tubes in ear before surgery. I also had previously tonsils and adenoid removal...thats all connected where will infection go now if i get a sinus infection?
I have Thornwald cysts reported on an MRI after a car accident. NO doc has ever discussed them with me (i.e. if they are cause of headaches and dizziness, if they can be removed, etc.). This was four years ago. I was just last fall (no insurance, car accident, sporadic treatment, now have narrowing in cervical spine) been diagnosed with post-concussive syndrome and just went to see a neurologist for numbness and she saw my mri from 4 years ago, said "oh yeah, those cysts could be from too many ear infections as a child (and i was dizzy a lot as a child and teenager), but didn''t say anything else about them. What should i ask my real doc when she comes back from maternity leave? Are these safe to be removed if you have a head injury and neck injuries? or are they just "benign? I have no health insurance.
Hi, I too have a Thornwaldt's cyst. It was found in 1969 and surgery was performed then. I've been to several Neurologists/Surgeons etc. since then, but no one seems to know much about Thornwaldt's or its symptoms.
Do any of you have difficulty breathing? Any help appreciated.