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seizures getting worse pituitary tumor comming back?
i had my 22mm pit tumor removed may -06. i was told my tumor was totaly removed and if it grew back i would be to old to worry or care about it. i have read where alot of patients tumors has grew back within a few years. i am worried because im having alot of problems . i have grand-mal seizures and they have gotten worse within the last 3mnts. i have had a seizure every month for the past 3 monts. my hubby has noticed they have changed and gotten alot worse. i dont have time to act when i get my warning and i cant breath during them and turn blue. my hubby says they are more stronger and very scary now. i wake up from them an i am so sick i feel as if im dieing and my bloodpressure drops very low and my potassium is low. my other problem is im extremily moody/ quick to anger. my hair is dry and breaking and skin is dry and i stay cold. i have a blurry white spot in my eye. i go for my yearly mri next month. im a little worried and confused to why my seizures have gotten worse and uncontrolled. my pit labs are all low normal . thanks for all your help.
Hey - don't feel bad! Besides, anyone can respond, not just me! And the forum is here for people to ask questions.
Did you get a copy of the pathology from the last surgery - if not, get it. That should give you information on what the last lesion was - since it was large, they should have had plenty of material to deal with and had a good conclusion. Sometimes they are tiny and it all gets sucked up in the ick and hardly anything makes it to pathology, so people don't know what kind of tumor they have.
Craniopharygiomas are large - and yeah, can be slow - but have you looked up recurrence studies? I found one and well, out of a group of 69, 20 had a recurrence. (My cushing's brethren have 50% - yippee). So why your doc is so surprised or thinking it is something new, not so sure.
I also find waiting two months on a fast grower to be, well, er, um - hello! Making the job more difficult? Maybe you can start looking around for other surgeons at least - and see about other opinions. With a second surgery and a non-debatable issue there, you should be able to get in pretty fast at some other places.
Did you get a copy of the pathology from the last surgery - if not, get it. That should give you information on what the last lesion was - since it was large, they should have had plenty of material to deal with and had a good conclusion. Sometimes they are tiny and it all gets sucked up in the ick and hardly anything makes it to pathology, so people don't know what kind of tumor they have.
Craniopharygiomas are large - and yeah, can be slow - but have you looked up recurrence studies? I found one and well, out of a group of 69, 20 had a recurrence. (My cushing's brethren have 50% - yippee). So why your doc is so surprised or thinking it is something new, not so sure.
I also find waiting two months on a fast grower to be, well, er, um - hello! Making the job more difficult? Maybe you can start looking around for other surgeons at least - and see about other opinions. With a second surgery and a non-debatable issue there, you should be able to get in pretty fast at some other places.
hi rumpled , im sorry i keep asking you questions. i am very confused and worried now . i havent been able to talk to my surgen and i have to wait 2 mnts before i can get any idea what is going on. i talked to my regular neuro and was told i would have to have another crainotomy to remove the tumor before the gamma knife . she told me not to let my tumor get so big before sugery this time and because my tumor before doubled in size within a year she doesnt think it was a craniopharygioma as they grow very slow. could he had made a mistake on what kind of tumor it was before? i was told it was tested n was a craniopharygioma after my crainotomy. this tumor has went from nothing to a pea size in bout a year. im confused and i came up with the same info this type tumor should be slow growing. thanks for your help and advice
IMHO, once you use gamma on the pit (or any radiation), the pit is gonna die, so your options are limited and you have to live panhypopit - so in to my thinking, as long as you can do surgery, go for it - the risks in this case as less for a better quality of life.
But you have to do your own research and think about your own life and all - there is a lot to think about. And sometimes you don't have the option... my next option may not be surgery but will have to be radiation so I don't know.
It is a lot to think about - just make sure you have the best person messing about in your head LOL.
But you have to do your own research and think about your own life and all - there is a lot to think about. And sometimes you don't have the option... my next option may not be surgery but will have to be radiation so I don't know.
It is a lot to think about - just make sure you have the best person messing about in your head LOL.
thank you so much . i have been trying to research before my next apt. my neuro surgon told me durin my visits last (tumor) time if he couldent get it all he would use the gamma knife. he told me he had gotten it all and the gamma knife wasent needed.he is the only experanced neuro surgon here and patients do come from all around to see him. he is probly 70yrs old and my neuro tells me hes the best anywhere . im worried because he told me this and last he dnt know what it is. i felt used because he said my tumor was very rare and it grew till i went blind in my left eye. i do have my site back after sugery. i was just told it could be a cyst and sent home this time to wait the 2 months confused. after reading about the scar tissue im really nervous. i have went 3yrs just being told no tumor and just lose weight with the idea it was gone forever and i dident need any hormones or even to have them checked. i guess im pouring my heart and fears out here. should he have used the gama after any way? is a cyst as bad as a tumor? thanks again
I would be upset too - I know, mine came back too - but mine was smaller.
You will either now have to do surgery again or consider radiation now that you know it is aggressive - but with the radiation, you will likely lose most if not all of your pit function.
Since it has fluid around it - I would probably get another opinion - from a doc that has done a lot of second surgeries. Seconds are a bit more difficult with scar tissue and loss of anatomical markers so the odds of hitting things can go up unless you have more surgical skill on your side - so I would be careful to get a very skilled surgeon - 500+ or even 1000+ surgeries done.
Radiation - there are several types available and you will be pushed towards whatever the hospital has, not necessarily what you want, so do research and make sure the place you pick has a pit center and has done pit before as with all but proton beam, there is radiation leakage and near the carotids and optic nerve, a few millimeters is critical. There are side effects that are not common such as necrosis of the tissue where the beams pass - but that can happen, so you want to know where they pass the beams to minimize damage later if that happens. Gamma is one shot, cyber has several visits - accuracy and strength of beam, side effects you should read about. Even though you are not cut - stuff does happen and with pit, it is going to take a while to take effect. I have done tons of research myself since that will probably be my next step since I don't know if they will do surgery on me again.
Hang in there.
You will either now have to do surgery again or consider radiation now that you know it is aggressive - but with the radiation, you will likely lose most if not all of your pit function.
Since it has fluid around it - I would probably get another opinion - from a doc that has done a lot of second surgeries. Seconds are a bit more difficult with scar tissue and loss of anatomical markers so the odds of hitting things can go up unless you have more surgical skill on your side - so I would be careful to get a very skilled surgeon - 500+ or even 1000+ surgeries done.
Radiation - there are several types available and you will be pushed towards whatever the hospital has, not necessarily what you want, so do research and make sure the place you pick has a pit center and has done pit before as with all but proton beam, there is radiation leakage and near the carotids and optic nerve, a few millimeters is critical. There are side effects that are not common such as necrosis of the tissue where the beams pass - but that can happen, so you want to know where they pass the beams to minimize damage later if that happens. Gamma is one shot, cyber has several visits - accuracy and strength of beam, side effects you should read about. Even though you are not cut - stuff does happen and with pit, it is going to take a while to take effect. I have done tons of research myself since that will probably be my next step since I don't know if they will do surgery on me again.
Hang in there.
hi rumpled , i had my mri yesterday . my tumor has grew back and im upset. my neuro surgen showed me the tumor and it looks like the size of a pea.i seen last years film to compair and it wasent there. it has fluid around it and neuro told me he thought he got it all and before was aggresive so i go back in 2 months . he told me it could be a cyst . the tumor is in the same spot as before does that mean i have to go threw another crainotomy? im upset and confused because he said same thing before " i dont know what it is" help
Loss of GH is pretty standard and it is pretty sad that your doc is not treating you - as you probably need a stim test and the meds to feel better. That one often goes first.
My doc likes me to be at the higher end of the scales for thyroid - but he tests the free T3 too. I take T3 as well. Your ACTH is pretty low - hence it looks like you are starting to lose maybe pit function - any FSH, LH tests?
My doc likes me to be at the higher end of the scales for thyroid - but he tests the free T3 too. I take T3 as well. Your ACTH is pretty low - hence it looks like you are starting to lose maybe pit function - any FSH, LH tests?
Tumours do come back. Here is something which you can do yourself, to help you cope with the symptoms. The extra oxygen going into the body will definitely help to fight back.Start with anulom vilom for first few days and then do kapalbhati as well.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril
then – close left nostril with two fingers and breath-out through right nostril
then -keeping the left nostril closed deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30 minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 20 to 30 minutes twice a day. Children under 15 years – do 5 to 10 minutes twice a day.
Not for pregnant women. Seriously ill people do it gently.
You may not have heard of this, but do it and feel the benefit.There are no side effects
and knowing you can do something yourself, will be very satisfying.
Build up your timing gradually.If you feel tired or dizzy, stop and resume after one minute.
Anulom Vilom –
Close your right nostril with thumb and deep breath-in through left nostril
then – close left nostril with two fingers and breath-out through right nostril
then -keeping the left nostril closed deep breath-in through right nostril
then - close your right nostril with thumb and breath-out through left nostril.
This is one cycle of anulom vilom.
Repeat this cycle for 15 to 30 minutes twice a day.
Children under 15 years – do 5 to 10 minutes twice a day.
You can do this before breakfast/lunch/dinner or before bedtime or in bed.Remember to take deep long breaths into the lungs.You can do this while sitting on floor or chair or lying in bed.
Kapalbhati -(Do it before eating) Push air forcefully out through the nose about once per second. Stomach will itself go in(contract in). The breathing in(through the nose) will happen automatically. Establish a rhythm and do for 20 to 30 minutes twice a day. Children under 15 years – do 5 to 10 minutes twice a day.
Not for pregnant women. Seriously ill people do it gently.
You may not have heard of this, but do it and feel the benefit.There are no side effects
and knowing you can do something yourself, will be very satisfying.
i guess i should have posted the ranges. tsh (0.47) 0.35-5.5 HGH (0.1)0.0 -6.0 CORTISOL(6.4) 5-23 T3(86) 80-180 FT4 (0.8) 0.6-1.1 ADRENOCORTROPIC (17) 6-48 PROLACTIN (11.1) 2.8-48 ACTH (6) 6-58 MY IGF-1 WAS 140 and have report its to low but was never told or any more testing done. thanks
After pituitary surgery, often GH is lost and well, I am not sure about you lab ranges - but I would get your IGF-1 tested (which is what the body uses.
Frankly, after such a large tumor and such a surgery, you should be getting more monitoring -in testing and MRIs. I would find a different endo. Weight is a symptom, not just couch issues in pit patients - he should be running more tests (heck, I get tons!) and you may need more hormonal support.
Frankly, after such a large tumor and such a surgery, you should be getting more monitoring -in testing and MRIs. I would find a different endo. Weight is a symptom, not just couch issues in pit patients - he should be running more tests (heck, I get tons!) and you may need more hormonal support.
thanks for your help. im getting sick alot and was wondering if its due to low hormones. i am getting so sick i feel as if im dieing. i get so dizzy it hits all of a sudden i just fall over n feel like im gona pass out. it gets hard to breath and im so weak i cant walk. i do have low potasium and bloodpressure. it feels as if i was on a merry go round dizzy. i looked threw my records and my tumor was 1.7x2.2cm craniopharyngioma. my labs are TSH (0.47) HGH (0.1) CORTISOL (6.4) T3 UP (32) T3 (86) FT4(0.8) ADRENOCORTROPIC (17) PROLACTION (11.1) ACTH (6). these labs are a year old and and my endo tells me i dont need testing , just lose weight. is my labs fine , and i just need to lose weight? i dont have faith in my endo and worried he is putting my health aside. could my symptoms be from the low hormones? i cant stand any stress , it brings on seizures. im tired of feeling this way and so weak and sick i have to crawl so i dont fall. tired of fighting and ready to give up.
Sometimes labs being low normal are not what you want - that is not good for all labs - so you need to have copies -OH yeah - a competent endo.
Yes, there is a certain time of day for certain tests - and some tests are fasting. And I have had many a draw messed up in the lab by the tech - poor handling.
Yes, there is a certain time of day for certain tests - and some tests are fasting. And I have had many a draw messed up in the lab by the tech - poor handling.
thanks rumpled for your response. i go the 4th next mnt for my mri check up. as far as my hormones go my endo has gave me the boot. i havent been to him in over a year and i cant get an apt with him. my lab work would be done anytime of day and i wouldent have any special test or anything special during my blood draws. the last bloodwork i had was all low normal and my endo told me " lose weight your to fat " and he said thats all that was wrong with me. i had asked my endo about my symptoms being from my pit even tho my labs are low normal and he laughed in my face and told me if i lost weight i would feel better. i do have my last labs if you want to look at them.i have found a endo that specialist in pituitary an will beg my neuro surgon for a referal. is there a certain time / fasting or anything for bloodwork?i have just went to lab draw blood and leave. please advise
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