Does anyone have any information or website links for people that have a Rathke Cleft Cyst of the Pituitary Gland symtoms after the surgery my daughter 20 yrs old now had 3 surgeries all within 1 yrs from April 2010 to March 2011 and is still having problems with really bad headaches and blindness mainly in her left eye sometimes in the right(visual field test showed something but it was not confirmed by the test so eye dr said it was normal because tes did not confirm it) as well the cyst was laying on the left eye socket nerve she had all the highest risk side affect after the 1st 2 surgeries that but the time she had the 3rd surgery they put her right into ICU to recover there she was on a C-Pap to help her breath but only for a few hrs, she has low thyroid low cortisol adrenal insufficiency and had peripheral vision loss but that came back after the 1st surgery and I have been fight to get her SSD/SSI way before any of this even started back in April/May 08 as she also has a severe learning disability and ADD and she has soical anxity any help greatly appreciate
I also had a Rathke's. It was removed about 7 years ago. I've done a fair amount of reading and been involved in forums such as this one since my diagnosis. A few "theories" that I've developed specific to Rathke's are:
1. Rathke's are a birth defect, we are born with them some people are never affected while others can have major problems
2. They tend to form right between the two sides of the pituitary gland...so those of us with the problematic Rathke's tend to have more involvement of the posterior part of the gland...aka hypothalamus. This can make it more challenging to get the hormones normalized. But not impossible!
3. Because they are a birth defect, many of us also have developmental issues with our skull. For example my skull base is thinner in spots, and missing a few parts. Maybe your daughter has this issue too?
4. It seems like the Rathke's patients that have problemmatic cysts do suffer from more severe head pain
Because of how I am made, i have had ongoing issues with CSF leaks and head pain. This *****. I am also working with a very good neuroendo and fertility endo to maximize my lost pituitary function which has helped me a LOT! but it takes time and patience.
I am also in pain management for the head pain.This helps too.
I rec that your daughter get some counseling. While some days suck, I say that I have learned how to enjoy life again, to the best of my ability.
I am on SSDI and rec that you get a lawyer to help with this. SSDI requires doctors on your side who will go on record to say that you are not able to work, and why. Mine was justified because of the head pain that I have. I feel best when lying flat. Kinda makes it hard to work if you are in bed 20 hours a day..Altho meds help some, they do not take a way my small csf leak and the low pressure headaches that I have as a result.
I've had two leak repairs and am leaking again. They cannot find the current leak, but have comfirmed that my pressure is low.
But because of the deformed and missing parts of my skull i've been told that it will probably be an ongoing issue regardless of whether I have a another surgery again or not. A shunt "could" help with the pressure but I am not willing to go through another surgery to end up leaking yet again and/or have to deal with shunt malfunctions.unless things get a lot worse. This is my choice not my doctors!
So..I don't want you to think that your daughter has a hopeless situation as her things could be very different from mine. But I did want you to at least know that some folks with Rathke's can have a harder time than others.
thank you so much I will check them out rumpled her social anxiety started when she was a really little kids I was outside the Social Security Office a woman was coming outside she was screaming and yelling my youngest daughter (the one with all these health issues) was walking behind me when all of a sudden this woman grabbed her and held her for a few minutes grabbed her baby doll and threw it then let my daughter go apparently she had attacked the guard inside the SS office because they were stopping her money I'm guess so that's when it all started I did try to press charges but was told the woman did no harm to my child answer to ur question no she has not been tested u talk about replacements if u mean does she take medicine she does meds for the low thyroid and low cortisol no meds for the ADD as her brother was on them and got Tourettes from them and no her ENDO is just a children's ENDO since this all started when she was about 17 yrs old thanks again for ur link/s
WOW horselip u really go into details like I try to I'm so glad that u replied I'm learning a lot just by reading what u wrote I do not know if her Rathke was what u say problematic what is this plz explain if u can I don't know anything about her skull but I am learning a lot just from ur post alone what is this CSF leak that you talk of? My daughter Larissa just started seeing a Neuro-Opthalmologist for the blindness not the headaches like I thought this Neuro-Opthalmologist is sending her to get a CAROTID ultrasound diagnosis Amaurosis Fugax though I haven't googled that diagnosis yet I thought we were being sent to this doctor to find out as to why she gets the headaches and the blindness yet he told me that he's just gonna figure out about the blindness and that she need to go see a Neurologist for the headaches thought I don't this seeing a Neurologist will be of muchg help. I'm just so tired of this back and forth thing just want to find someone that know what the heck is going on with her and stop tryin to send us to different doctors no she's not in any counseling she was as a young girl for the death of her fatherbut none since then very long ago, and we do have a lawyer now we hired one right after we meet with the judge and she was denied about 2 yrs ago and our new appeals meeting with the judge is in March now after waiting over a yr for this new filing case, the judge that denied her due to the fact that she graduated high school though she only graduated on a 5/6 grade reading level and an 8 grade math level and I only let her graduate because I felt that since she had started middle school and high school she had only gone up 1 to 11/2 levels in reading and 2 levels in math I felt like they weren't really helping her to learn so why keep her in there if it's really not doing anything She has such trouble trying to get to sleep at nite that is another problem she has I really appreciate everything that you wrote and am going to look into a bunch of things...I hope u feel better and that they can fix ur leak the correct way where it won't leak anymore
It sounds like with your daughters situation the cyst grew so that it was close to the optic nerve/s and maybe the carotid arteries. That can be really serious. The blindness could have come from the Rathkes and/or surgery due to the optic nerve being damaged. I'm sorry that this happened.
By symptomatic I just mean that it caused "symptoms". Many Rathkes people newer even know they have one because it never causes problems.
My skull issues were found by my ENT from scans done while they were looking for the source of my on and off CSF leaks.
It sounds like you have been down a long road with more to come.
It is good that the docs are looking for the source of the headaches as this might help her to get better treatment for the pain.
My leaks seem to be unique to me.Your daughters issue sound different in many ways.
You said that she is on hydrocortisone. That can keep you awake at night if you take it too late in the day. How much does she take and at what times?
With my daughter's 1st surgery all they did was drain the cyst the 2nd surgery they were trying to remove the whole cyst but had trouble because of the location so with the 3rd surgery the ENT dr's had another doctor in their office that was studying and going thru more different types of issues so he was the one to do the 3rd surgery with the Neurosurgeon's assisants where he said they made a big enough area thru the cyst ( squared it off) so that it shouldn't grow back and so far it hasn't where as with the 1st and 2nd surgeries one being that they only drained it but came back and the 2nd as where they were trying to remove the whole thing but couldn't Larissa is on hydrocortisone10 mg 2 times a day and levothyroxine 75mcg 1 time a day it's very hard for her to remember to take her medicine and I always try to remind her but sometimes she just takes it all at one time which is usually all at nite when she comes up to bed No she is not at a pituitary center I've ever even heard of this untill now reading these posts after the MRI was taken and this was found she was referred to a Neurosurgeon and since she was still a child we went to a children's doctors at a children's hospital so her Neurosurgeon her Endo and ENT are all at this one hospital St Christopher's hospital for children here in Philadelphia she sees an eye doctor though I now know he's not anything other than an eye dr and now she just started seeing this Neuro-Opthalmologist and I will have to take her back to a Neurologist This Neuro-Opthalmologist isn't going to be helping out with her bad headaches he's just looking as to why she has this blindness at times he said the Neurologist should be handling about her headaches I still need to find and make an appt for that doctor just wanted to get this CAROTID ultrasound done 1st
What I was asking you is What is CSF leak? Where is it leaking from?
I get those 7 day a week 4 time a day medication things from the drug store - they are around $7 for one (I have built up to have several!) and put my medications in there. That way I set out my meds and I know what I have taken when and while I don't take it like the sections may say (it does not work for hormones!) at least I have everything put out and it makes it so much easier to manage and take. It does not cover the patches and shots but perhaps a white board or magnet board with something to move or note would help compliance. For many years I wore a watch that had many alarms until I finally got a habit. It just is not easy at first so you have to find tools to help.
I would guess the carotid ultrasound is to find out if there is any impact on the carotid by the cyst. If you look at some anatomy, the carotids and the optic nerves are all close by there by the pituitary - hence when a tumor/cyst gets larger it can impact a lot of stuff up there.
Our spinal cords and brain are wrapped by a covering called the dura which is kind of like a balloon that holds in the fluid.The dura is supported by the skull in the parts around the brain, ears, skull base etc. inside of this is the CSF fluid. The CSF protects the brain and spinal cord and we have a system in place where it is supposed to stay at a certain pressure.
When ever there is a hole in the dura, CSF can leak out. It can be very small like a pin hole. I had a leak after my first pituitary surgery in 2006. It was in the dura/skull bone that the surgeon went through to remove my cyst.
I've had many many work ups and had two surgeries already to fix the leaks. One thing that they do is a spinal tap to test your CSF pressure. if it is low than they suspect a leak. After that they try to find it. Right now they can't find it. One big symptom of a csf leak is called a low pressure headache. One of it's trademark things is that the headache often improves or goes away when you lie down.
very inresting I just talked to her lawyer today for our 1st Pre Meeting Call before her appt with the Social Security Appeals Judge and when I told him what the Neuro-Opthamologist put as the diagnosis for the CAROTID Ultrasound (Amaurosis Fugax) he googled it and found it very interesting. I am going to google it once off this forum I keep her medicine up stairs in my bedroomsince she sleeps in my room that way I can remind her if she forgets but thank you for letting me know about the daily medicine container
wow very interesting I'm learning so much just by reading all replies back and checking out the links that rumple sent on here...I now understand what u are talking about with the CSF leak thank u very much for explaining it to me I'm tried to learn everything I can
I need help! I'm 24. A CNA/MA/Phlebotomist tech. 3 Years ago they thought I had a prolactinoma on my pituitary gland (bc I was lactating) but they couldn't see anything on my gland via MRA. I was put on medication and it went away. But over the last few years I haven't been able to think. I used to be So smart but now I feel stupid and dizzy almost 24/7. I just had imaging done that showed a possible Rathke Cleft Cyst. It's a macroademona with hemorrhaging in it. I'm on disability and no surgeon will take it out. I have an apt at stanford on tues but I want to be prepared. I've been in hell waiting for my life to start and Just found this site. Do my symptoms sound familiar? Everything started to change for me when I hit puberty.
Have you taken the medication the whole time? Or did u stop when 'it went away"? maybe it never left?
Was the medication called Bromocriptine, Dostinex or Cabergoline? If so it was probably because you had elevated prolactin levels. That hormone, when off, can cause loss of menstrual cycle, psychiatric stuff and a whole lot more. And then the meds can have side effects too.
Rathke's Cleft csysts don't secrete homones. But they can cause your pituitary hormones to go low, low, low, if the happen to press on the special spots. And then that makes you feel, just great, NOT!
You said that no surgeon would operate on it, is that because they don't take Medicaid?
UCSF is very good and not far from Stanford. Neither did my surgery though, that was done in Sacramento. (I've been to both and have some opinions about them).
Has anyone eles had this same problem (Rathke cleft Cyst of the Pituitary Gland) as my daughter she has been going thru Blind spells where she loses vision in mostly her left eye, only for a few seconds to maybe a few mins and sometimes it's in both eyes she did have peripheral vision loss but that came back after the 1st surgery but her Neurologist said she still has nerve damage behind the left eye socket nerve the cyst was layin on the left eye socket nerve and has severe headaches all the time her surgeries were back from 2010 to 2011 and they had finally found her disabled after fight for over 5 yrs
Neurologists typically cannot and do not treat pituitary disorders. You need to find a pituitary center and a neuro-endo and a competent pituitary center. If you don't have a good experienced surgeon, the surgeon can do more damage than good. There can also be a need for some radiation if there is residual tissue that is causing issues.
Has your daughter seen a neuro-optho?
Do you get copies of all the tests, scans and tests?
yes my daughter does go to a Neuro-Optho who's supposeably a good one but I'm not sure of that all he has done was have her have a Ultrasound of her carotid artery and told her to take a baby asprin every day she had all children's doctors there she had Endo doc, Neurosurgeon, ENT Doc,but now that she turned 21 they all said they are finished with her and she needs to follow up/find all new adult doctors I'm gonna take her to my Endo doc I just found a ENT who she'll see starting next month all I have to do now is find a Neurosurgeon which I'm having problems finding one in my neighborhood but I will look into what ur said(Pituitary Center and I'll find out if my Endo id a Neuro-Endo or if one of the doc's in his office is one of them) in fact the Neuro-Optho was the one who wanted her to see the Neurologist about the severe headaches but I thought that was the main reason as to why we were going to him in the 1st place cause of the Blind spells an the severe headaches but once we started to see him he said he was just for the blind spells The Neurologist just sent her to a sleep center to see why she has so much trouble falling asleep and to see if she has sleep apnea which I also have we just spent the nite there last nite
yea well the neuro-optho had her get it done I didn't think anything of it thought maybe he would be able to find why she's having the blind spells I still have to see if any of the doctor's in my Endo's office r neuro-endo's yet and then will find a Neurosurgeon Adult one no she was sent to see the Neurologist for the severe headaches and yes OMG sleep is such a problem for her falling asleep I just started giving her a over the counter sleep aid to help her fall asleep now if I dont give it to her then she's up all nite long
Most neuro-endos are at university hospitals or larger centers. If you *ask* and endo, they will always say that they treat pituitary, but in reality, they cannot. Some regular endos are more skilled and interested, but I have even tried the magazine *top docs* and been told I was ok, when I was clearly not. So please try to find a pituitary center, or call NIH in Maryland. There are links in the health pages below to sites that can give you doctor lists. Even though, however, not every doctor is good. It still pays to get copies, read and know enough to judge if you are getting competent treatment or not.
I also has severe sleep issues. I had Cushing's disease FYI.
see that's the problem right now I don't want to have to drive into center city where all the major hospitals are because I don't travel into town I can't stand the busy crowed street so I'm kinda looking for these drs in my own area where we llive so that it would be much closer to our house I to am disabled and also makes it much harder for me OMG what is Cushing's disease?
I would get help. I think it is very helpful to have a *good* person with you at appointments - someone who is supportive and knows you are sick (rather than someone who is working against you, like many family members or friends who think you just need to say, exercise, diet or whatever).
I am also disabled. Cushing's disease is the type of pituitary tumor where the tumor secretes too much cortisol. It tends to make you heavier, and have weird symptoms that can vary from easily breaking bones to sky high cholesterol that won't budge with meds, or acne that will not no way go away and can cause a lot of issues from minor to major.
The hard thing with local is that you most likely will not get competent treatment - so you have to weigh competency vs asking for help. I did a lot (a LOT) of local attempts and finally just went to LA.
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