Advice needed, just found tumor in brain.

[Potsie1990]

Hi All,

Please excuse my typing.. I’m trying to type with one hand and I’m also using speak to text on my phone.

i have been diagnosed with Pots/dysautonomia back in April 2018 by an ER day physician and later a cardiologist after being sick the whole year prior.

My initial sickness started (or got severe enough to do something) when i collapsed one day in November 2017 (week of thanksgiving) and couldn’t walk for two weeks. At that moment, my pots and dysautonomia  kicked in and my heart rate doubled any time I changed positions. I could still barley walk without nearly passing out every time. I had extreme muscle weakness. Couldn’t even feed myself and walk to the bathroom on my own.

Long story short, after seeing many doctors and having them all tell me it’s heartburn, im a hypochondriac, it’s all anxiety and in my head, and that I’m gonna give myself cancer because I’m convincing myself I have something when I don’t, when I found my thyroid was off on my lab tests, I took it upon myself to find a specialist who could tell me more and maybe help me.

i just went to the first endocrinologist my insurance would let me see. 

He tested me for many things... thyroid panel, cushings, and prolactin. He also ordered an MRI because I told him I was diagnosed with an enlarged pituitary when I was 17. I am not confident that that was even an accurate diagnosis based off the positions and hospital that I went to at the time. It was not Exactly the best hospital

So this is December 2017, and he ordered a pituitary panel. Just Cortisol, prolactin and thyroid. All came back High. He then ordered the dexamethasone suppression test and and MRI.

my cortisol lowered, (but not properly as we know now) and he misread/misinterpreted the results and told me I was completely fine, nothing to worry about.

the same visit we went over the mri results. He said he that it was clear and that it looks like my sickness is not coming from that so I left thinking thank god it’s not a tumor! 

Fast forward to the last few months. My weakness got worse. I’m using a cane, I’m now using a walker. I have a hard time breathing, I have a caregiver that comes to my home 2x a week to help me with daily chores and take me to my dr appt. I just applied for the handicap placard. Things are not getting better, but worse

Fast forward to what’s going on in the past month or two... and I called 50 internal med docs in my area, and I found 1 that was experienced with dysautonomia. He is literally like a Dr house. He deals with all the rare syndromes and ailments.

he reviews my case and definitely agrees I have dysautonomia, and says we need to figure out why. He ran a new extensive blood panel for literally everything under the sun and voila, cortisol ( among many other things ) comes back high again. He refers me to this supposed amazing endocrinologist that has a longggg waiting list just to be seen as a new patient but we submit my case as urgent and I was accepted! I called on Thursday afternoon and She saw me literally that following Monday.

i brought all my paperwork, and she reviewed everything. I told her that the previous endocrinologist reviewed my results and said that I was completely fine so I’m not exactly sure what she can do for me...especially considering there’s really nothing to be done as I was told. She said the birth control can make the cortisol high so it could just be that. But, she goes through my last dexamethasone suppression test and realizes I did not suppress properly. She thought it could’ve just been a mistake from the lab and that I’ll just redo it with the lab that she recommends and will just go from there. 

Another week goes by my weakness is progressing even  more but I go and I complete all my blood work, my urine collection, and my saliva test. With the healthcare system that I’m using, they give you the results on your patient portal. So I was able to see all my results instantly. Everything came back elevated. My cortisol, my AC TH,  prolactin, testosterone, thyroid. The day after I got my test results I collapsed again and could not walk. I called her office and tears asking her to go over the results with me and tell me what this means and what I can do because I’m suffering so bad and I need an answer. She then proceeds to tell me that after I Left my previous appointment with her she just went through and looked at my old MRI that the previous doctor ordered. The official lab report says that they discovered a 1.4 cm tumor on the anterior portion of my pituitary also growing into my hypothalamus and in another section of my brain. So that means the previous doctor either never even read my results, Misread my results, or gotten my results mixed up with another patient‘s. So basically I have been suffering since December with something that could’ve been removed but instead was just neglected. I now have to have surgery to remove it but unfortunately they haven’t been able to identify what type of tumor it is. It is not a classic pituitary adenoma. It is not a prolactinoma nor is it classical Cushing’s disease. They think that this is another type of tumor that happens to be growing and just putting pressure on that portion of my glands and brain. I still don’t know at this time whether it is benign or cancerous. 

I happened to see a vascular neurologist a week ago, and she was a little confused as to why I have so much muscle weakness. I discussed with her our new findings from the MRI today and we are both kind of Under the impression that it could just be underlying dysautonomia combined with hormonal excess being released from my pituitary gland as a result from pressure from the tumor. Does anybody here have anything similar? She told me that the only solution really would be to undergo surgery to remove the tumor and hopefully that would relieve what is aggravating my dysautonomia. 

If anyone has any advice on what I can do. Or how I should proceed or what I should ask for I would be eternally grateful. It has been the longest year of my life. I am 27 years old I was active before I got sick.

In regards to the Cushing’s that I do have according to my lab test, I will say that I do have some of the symptoms. Although I did not gain an excessive amount of weight I did gain about 5 pounds. I will say that I probably would have gained more had it not been so difficult  For me to eat. I am nauseous I have a hard time swallowing, and I also have bouts of gastroparesis. Over the summer a year ago I did gain a huge amount of weight in my face. Like there is a night and day difference between my face a year ago and my face now. So besides my face changing and my muscle weakness and my physical elements I really did not have very many Cushing’s type symptoms. I also told my doc a long time ago I suspected I had hyperadrenergic pots because I have shaking and weakness episodes andadrenaline surges.

Do you guys have any recommendations on what I can do for the muscle weakness? Both the specialists are telling me there’s really not much they can do until the tumor is surgically removed and they figure out what kind it is and what it’s doing to my body. The other day I was in tears because I couldn’t even left a water bottle. I couldn’t even move. And it’s unfortunate but I can’t go to the emergency room because I’m just gonna end up staying there for eight hours without having anything productive being done. The doctors won’t be able to help me because I’m a complex case and they will just refer me back to my specialists.

 

Thank you. Sorry for the typos and bad grammar. It took me literally all day to write this LOL

 

[StayAtHomeMom]

I want to start with I am so sorry about your body malfunctioning (at least that is what it sounds like to me). It sounds like you have finally found some amazing doctors and we all know how hard that can be. 

I think the doctors are being cautious. You have a lot of overlapping symptoms between everything you have or could have and without removing some problems you will never get it straight as far as what is causing what symptoms. My boss has the same issues. He has multiple things wrong that could cause a single symptom so they don't know what is causing that specific symptom. 

Have you been tested for the epstein-barr virus? My nephew's mom had that and caused unbelievable muscle weakness. It was kind of impressive that she couldn't even lift a smartphone. 

It sounds like you need reassurances. Do you have any family? Or a close friend? Someone that can help hold your hand through this scary time in your life?

I hope you get some relief soon. Stay strong. And it will get better. The doctors are finding abnormal things so I am sure they will get to the bottom of it. Remember doctors are only human and can make mistakes. 

[Potsie1990]

18 hours ago, StayAtHomeMom said:

I want to start with I am so sorry about your body malfunctioning (at least that is what it sounds like to me). It sounds like you have finally found some amazing doctors and we all know how hard that can be. 

I think the doctors are being cautious. You have a lot of overlapping symptoms between everything you have or could have and without removing some problems you will never get it straight as far as what is causing what symptoms. My boss has the same issues. He has multiple things wrong that could cause a single symptom so they don't know what is causing that specific symptom. 

Have you been tested for the epstein-barr virus? My nephew's mom had that and caused unbelievable muscle weakness. It was kind of impressive that she couldn't even lift a smartphone. 

It sounds like you need reassurances. Do you have any family? Or a close friend? Someone that can help hold your hand through this scary time in your life?

I hope you get some relief soon. Stay strong. And it will get better. The doctors are finding abnormal things so I am sure they will get to the bottom of it. Remember doctors are only human and can make mistakes. 

Hi there,

 

thanks so much for the reply. Yes, I am in need of reassurances. I have been trying to process this past year and you know what? It’s a great feeling to finally feel validated in knowing something is actually wrong and it’s not something I made up. But... it’s not nearly what I expected. The term brain surgery is a lot for anyone to take in and the unknown is scary. I’m praying that it’s benign and that it’s just the end of it. 

Yes, and I have extremely high antibodies to the EBV and all of the Coxsackie Tests. Idk what that could mean but it’s there. 

I think the hardest part is I’ve lost so much trust in the doctors. I mean, to get the dysautonomia diagnoses was a process in itself. But adding this too and the fact that so many mistakes have been made during the process is so frustrating and isolating.  

 

And my caregiver that I have is so nice and sweet to me and my mom is flying in. I do have a husband, but he has insomnia and depression so unfortunately everything about my situation causes him to shut down. He tries, but you know. He also works and things so I try not to involve him unless it’s necessary. 

My other family is completely out of touch. They didn’t believe me when I had the dysautonomia, so I’m not even going to waste my breath about this. I told a few friends and actually my new neighbor who just moved in next door was so sweet and offered help and prayers. I have a few people. I’m trying to let people be there for me in the way I usually am for them. 

Thanks so much. 

[GasconAlex]

It is scary when you need brain surgery. I remember the surgeon coming to find me in after a surgery and saying sorry didn't go as planned and now you need a craniotomy. It took a long time to sink in. But it isn't all that bad, and if the tumor is causing your other problems perhaps once you have recovered from the op life will become lots better. Although with brain problems placement is often a key factor the fact that the tumor is relatively small is good news, as is the fact that this wasn't pulled out and highlighted on the MRI. On my CT scan (which I read before going to the specialist) it was pulled out in bold at the top of the report, along with comforting stuff like needs immediate MRI to investigate full soft tissue involvement and other stuff which made it impossible to miss even on a cursory examination. The specialist (who was not expecting this) looked at the report and swore quite colourfully when he read it.

Don't worry too much about the bloods as with a tumor there this can screw up lots of stuff, your doctor will tell you if there is something to worry about. If you do need a craniotomy you will need help for weeks afterwards, and need to plan to have some sort of support in place afterwards. There are some good sites on what to expect after brain surgery I liked this one , it has lots of comments from other people who have been through it too.

You will get over this, and although there have been delays and difficulties to get this far it becomes easier once you have a diagnosis - the doctors do loads better when they know what they are trying to do, rather than trying to guess what is causing weird symptoms. 

Good luck, being young and active gives you a good start in beating this.

[Pistol]

@Potsie1990 - I agree with what others have said. I totally understand your mistrust of doctors - you have every right to feel that way. I have it too. Too many docs mess up when it comes to anything POTS related due to them not understanding the symptoms and condition. -- The good news - it sounds to me that many of your unbearable symptoms could subside after the tumor is removed. It makes total sense to me that the tumor might just press on your brain causing these symptoms, as your one doc suggested. So - that means after the surgery you have a whole new and improved life to look forward to! --- Of course you are afraid and scared and confused. You were just told you need brainsurgery! That is very scary. However - there is also a good side to it: I have never heard of a bad neurosurgeon. In order to be able to do that kind of surgery they all have to be very well trained. Do you have major hospitals in your area? You can read up the credentials of neuro-surgeons and pick one you feel comfortable with, or you can just go with whoever gets recommended by the referring doc. -- I agree with what others said: you need a good support system, someone to lean on and definitely a lot of help after surgery. Do you have a spouse/friend/family member that you can take with you to appointments and who will be there for you during and after surgery? --- Please don't get despaired - this could be a very good thing in the end. You could be a lot better afterwards! I wkeep you in my prayers and keep us posted!! Best of luck to you!!!

[Clb75]

I remember a few months ago another member on here posted about having a pituitary tumor. You could try using the search feature on this site to find the post, maybe there is something there that would be helpful information. Hang in there!

[yogini]

I assume that this tumor is benign and not malignant/cancerous?  If so it seems like it could be a very helpful discovery.  I would frankly assume that most of your symptoms are related to the tumor and would be alleviated.   I think in this group we wouldn't have a lot of experience with pituitary tumors, but you might want to try googling around for info and to see if there is another online support group.  It makes me very sad and angry that so many doctors dismissed you and missed the tumor!

[GasconAlex]

Just seen the bit about muscle weakness. If it is neurological the only help is to talk to physios or occupational therapists who can come up with gadgets, helps and work arounds. Hopefully the loss is temporary, or failing that is not true muscle weakness but a control problem. If it is control (like after a stroke) you can relearn a lot of movement, it takes time (lots) and a good physio - try and find a neuro physio if you can. Some muscle weakness you just have to live with, you can try your hardest and the muscle doesn't move or just twitches feebly, for those you need a work around if at all possible.

You are likely to need either rehab or long term physio, try and look into your options now (including I guess costs and insurance) so you have the benefit now and it can kick in as soon as possible afterwards. You might well feel disconnected, muddle headed, confused and disoriented straight afterwards. Having several plans in place will help.

Whatever else you do don't try and strain the muscles to try and do what they used to do, as infuriating as it is overstretching causes further damage. Recovery takes time.

[Potsie1990]

11 hours ago, GasconAlex said:

It is scary when you need brain surgery. I remember the surgeon coming to find me in after a surgery and saying sorry didn't go as planned and now you need a craniotomy. It took a long time to sink in. But it isn't all that bad, and if the tumor is causing your other problems perhaps once you have recovered from the op life will become lots better. Although with brain problems placement is often a key factor the fact that the tumor is relatively small is good news, as is the fact that this wasn't pulled out and highlighted on the MRI. On my CT scan (which I read before going to the specialist) it was pulled out in bold at the top of the report, along with comforting stuff like needs immediate MRI to investigate full soft tissue involvement and other stuff which made it impossible to miss even on a cursory examination. The specialist (who was not expecting this) looked at the report and swore quite colourfully when he read it.

Don't worry too much about the bloods as with a tumor there this can screw up lots of stuff, your doctor will tell you if there is something to worry about. If you do need a craniotomy you will need help for weeks afterwards, and need to plan to have some sort of support in place afterwards. There are some good sites on what to expect after brain surgery I liked this one , it has lots of comments from other people who have been through it too.

You will get over this, and although there have been delays and difficulties to get this far it becomes easier once you have a diagnosis - the doctors do loads better when they know what they are trying to do, rather than trying to guess what is causing weird symptoms. 

Good luck, being young and active gives you a good start in beating this.

Thank you for your reply. I agree, I do think that now since we have a target, it’s easier to come up with a plan. And I do think that doctors do work better when they know for sure what needs to be done. 

I’m so sorry you went through multiple surgeries yourself. I hope you are in the clear now and on the road to health, if you aren’t there already! 

I will definitely check out the website you gave me. Thank you 

[Potsie1990]

7 hours ago, Clb75 said:

I remember a few months ago another member on here posted about having a pituitary tumor. You could try using the search feature on this site to find the post, maybe there is something there that would be helpful information. Hang in there!

Thank you, I’ll check for it now. 

[Potsie1990]

5 hours ago, yogini said:

I assume that this tumor is benign and not malignant/cancerous?  If so it seems like it could be a very helpful discovery.  I would frankly assume that most of your symptoms are related to the tumor and would be alleviated.   I think in this group we wouldn't have a lot of experience with pituitary tumors, but you might want to try googling around for info and to see if there is another online support group.  It makes me very sad and angry that so many doctors dismissed you and missed the tumor!

Well, we won’t know for sure until after it’s removed and tested. It’s not a true pituary tumor growing from the gland itself, and more than likely another type of tumor that is growing into a few things in that region so as of now they are unable to truly identify it. But, hopefully it’s benign so I can be done with this after surgery. 

And yes, I am angry and sad too. They all watched me severely deteriorate and told me there was nothing wrong for an entire year. I was almost happy when they found something in a strange way.  But things like this happen I guess. Nothing I can do about it now but get through this next phase and stay positive. 

But I will say that if I learned anything in this process, it’s that if you truly believe something is wrong you must be persistent. No one, and i mean no one will advocate for your health like yourself. 

[Potsie1990]

4 hours ago, GasconAlex said:

Just seen the bit about muscle weakness. If it is neurological the only help is to talk to physios or occupational therapists who can come up with gadgets, helps and work arounds. Hopefully the loss is temporary, or failing that is not true muscle weakness but a control problem. If it is control (like after a stroke) you can relearn a lot of movement, it takes time (lots) and a good physio - try and find a neuro physio if you can. Some muscle weakness you just have to live with, you can try your hardest and the muscle doesn't move or just twitches feebly, for those you need a work around if at all possible.

You are likely to need either rehab or long term physio, try and look into your options now (including I guess costs and insurance) so you have the benefit now and it can kick in as soon as possible afterwards. You might well feel disconnected, muddle headed, confused and disoriented straight afterwards. Having several plans in place will help.

Whatever else you do don't try and strain the muscles to try and do what they used to do, as infuriating as it is overstretching causes further damage. Recovery takes time.

Thank you for your advice. I think that my body might be reacting to the extremely high levels of hormones in my body just being constantly emitted. Cortisol is a stress hormone so I think if you combine that with an already moderate level of dysautonomia I think it’s a recipe for disaster. I’m praying that once they get all of this under control everything will ease up. I might have to relearn a few things and build my muscles back up but I’m determined regardless of the origin. At this point, I’m going to do anything and everything to get my body back to where it used to be. I’ll talk to my doctor about your recommendations and see if that’s something I should start now. Thanks for that, I really appreciate it 

[yogini]

42 minutes ago, Potsie1990 said:

Well, we won’t know for sure until after it’s removed and tested. It’s not a true pituary tumor growing from the gland itself, and more than likely another type of tumor that is growing into a few things in that region so as of now they are unable to truly identify it. But, hopefully it’s benign so I can be done with this after surgery. 

And yes, I am angry and sad too. They all watched me severely deteriorate and told me there was nothing wrong for an entire year. I was almost happy when they found something in a strange way.  But things like this happen I guess. Nothing I can do about it now but get through this next phase and stay positive. 

But I will say that if I learned anything in this process, it’s that if you truly believe something is wrong you must be persistent. No one, and i mean no one will advocate for your health like yourself. 

It is so true - you have to be your own advocate with any rare illness.  I had to read all about medications and guide my doctors even with just POTS.  Hope your surgery goes well and you feel better soon!

[Tenacity]

What do you mean when you say thyroid is high? Do you mean the thyroid hormones, T3 and T4, or do you mean TSH?

[Potsie1990]

On 8/18/2018 at 5:37 PM, Tenacity said:

What do you mean when you say thyroid is high? Do you mean the thyroid hormones, T3 and T4, or do you mean TSH?

Hi sorry for the late reply, my Tsh and t3 were elevated which meant I’m hypothryroid but I started treatment for it a few months ago so now it’s in normal range.

 

good news is that the doctor said once the tumor is removed, my suddenly severe pots should be relieved and maybe go back to it’s mild form. Fingers crossed.