Here we go again

[Snoopy]

Well its been a while since I posted so the story so far is :-
diagnosed with labrinthitis by GP
Then rediagnosed with AC after seeing a ENT
Rediagnosed with a Arachnoid cyst after MRI scan
Second MRI ordered to get a clearer and more defined picture as something did not seem right ?
Now it appears I do indeed have a cyst on my brain but not an Arachnoid cyst but a Intracranial Neurenteric Cyst, which is extremely rare and only 80 written cases.

So I still have the symptoms of vertigo/walking on sponge feeling, tinnitus, hearing loss. And I am currently waiting to see a Neuro Surgeon, my ENT stated because they are so rare it usually can take a while to get the right diagnoses as they rarely come across them. I will no longer see my ENT surgeon as he said it is out of his area and I needed to go to a bigger hospital with more experience in rare brain cysts.
Sorry to come and lay it at your door (so to speak) but with my symptoms being very similar to an AN sufferer I kind of feel at home here. As yet I know nothing about Neurenteric Cysts as there is very little about them on the net, technical stuff I can find but no sufferers of them intercranially, I have found 1 other person who had one on their spine which is where they usually grow and apparently they are very rare too although 2 out of 3 Neurenteric Cysts are found on spines so trust me to grow one on my brain. Thanks for reading guys and if you have any knowledge on this subject feel free to reply  

[CHD63]

Hi Snoopy .....

Bummer to be so unique!    I have heard of cystic acoustic neuromas, but never a neurenteric cyst.  I sincerely hope and pray you can find excellent physicians who are familiar with those 80 cases ..... even if it means traveling out of England for treatment.  Keep searching and looking.

A thought comes to mind ..... House Ear Clinic in Los Angeles sees many, many unusual cases.  If I were you, I would contact them and possibly send your MRI and most recent audiogram to them for a free consultation ..... just for a second/third opinion, if nothing else.  See:  http://www.houseearclinic.com/consultation/acousticneuroma   I know yours is considered a cyst, but they might still do the free consultation.  The only thing you would be out is the cost of sending your MRI and audiogram.

Thoughts and prayers.

Clarice

[Snoopy]

Thankyou very much for your reply, hopefully I will get some answers when I see the neuro guy. I asked my ENT if they were dangerous and would it grow bigger and he said he did not know. All I got from him was take it easy and any signs of menigitis I was to go straight to my doctor, mmm take it easy thats easy for him to say

[Jim Scott]

Hi ~

From what I found, an Intracranial Neurenteric Cyst is exceedingly rare but benign.  As you learned, they are also commonly misdiagnosed.  The medical literature indicated that patients who had the cysts surgically removed (usually employing the Retrosigmoid Approach) generally do very well, post-op.    I see a lot of similarities to an acoustic neuroma so please don't apologize for posting here, Snoopy. 

Jim

[Snoopy]

Thanks Jim, done quite a bit of resarch myself too and its not all bad news. It appears most are operated on, however the few I found on my research (17 only) were much much bigger than mine. So I am hoping because mine is tiny compared to the ones I found (mine is around the size and shape of a baked bean) they will decide mine can stay where it is for a long time, fingers crossed it does not grow or cause more problems.
I have also found that although the headaches are still coming I am controlling them with just 2 paracetamols when they arrive, and the balance issues do seem to be getting better. The tinnitus is still here 24/7 and makes new and strange crackling sounds along with the whistling, but I can live with that.
Thanks for letting me stay, I feel with something like this you need to be able to vent sometimes to people who get what your going through.

[nftwoed]

Hello;

   Re; Radiation suggestion from any Dr, I would never as cysts can increase rapidly and exponentially in size!! They are a surgical item mainly, but there are some radiation providers who would try hoping the nearby hospital is ready to place a ventricular shunt to avoid hydrocephalous, um, "stat".

[Snoopy]

Radiation ?

[nftwoed]

Hi;   Some radiation providers would attempt to treat the cyst with radiation.