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PITUITARY MACROADENOMA
Hi, my husband recently found out that the approx. size of the enhancing mass was 2.2cm in longitudinal extent, 1.9cm AP and approx. 1.6cm in transverse diameter.  The mass extended superiorly into the suprasellar cistern and was slightly lobulated in appearance at its superior surfance.  The pituatary stalk itself could not be demonstrated on the sequences and the cavernous sinuses were well demonstrated with normal appearances and without involvement with the cavernous sinus.  The scans through the pituatary gland region does reveal the mass positioned within the pituatary fossa which was intermediate signal intensity on the T1 study, high signal intensity on the T2 study and did enhance fairly intensely with contrast medium on the post Gadolinium studies.  The internal carotid artery was well demonstrated within the cavernous sinuses.  Pse. explain how big is this tumour.  What is the best treatment option.  Regards, SHENAAZ


This discussion is related to Acromegaly My MRI results Please tell me what you think.
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657231 tn?1453836403
Dang, I thought that was another drug... some of those side effects are rather strange!

I took bromo - I felt like I was run over by a truck so I agree.

As for radiotherapy... my layman opinion is that I would do some research and in my thoughts, I see that as a LAST option in most cases (certainly NOT all) due to it taking a long time to work, side effects, and all... it may have to happen after surgery if a tumor is so invasive or in places that are inoperable.

Whoa - by save *it* does he mean he cannot save your pituitary? That is extremely strange. Removal of the pituitary is not normal. I only know a few (actually one) surgeon that will do it on purpose. I know of lousy surgeons that will do it though. I would get another opinion - I would not want that surgeon.

What is the size of your tumor?

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Hi hope u keeping well.  My husband is improving slightly with regard to feeling down but this because of his low testotorene.  Wanted to ask you if it is normal for him to have numbness in his toes and when he moves it, the numbness goes away.  He also perspires intermittently.  He still cannot sleep and the doctor gave him sleeping pills for 1 month.  He is also constipated but I also noticed he eats very little.  Regards.
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657231 tn?1453836403
I have not heard of numbness in toes associated with surgery. The sweating can be since hormone issues can cause weird sweating. It can also mess up your intestines and appetite. After one of my surgeries I did not eat for a week I just did not have any appetite. I hope he can find the correct fiber supplement to help (I use an inulin based one) and once his testosterone is back to a normal range, he starts to feel better.
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Hi, thank you so much.  Have a merry christmas and happy new year.  Regards, Shenaaz

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657231 tn?1453836403
Merry Christmas and Happy New Year to you too!
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Hi, hope you enjoyed your Christmas and New Year.  It has now been 7 weeks for my husband's pit tumor op.  His appetite is back to normal; not constipated but the only issue remains is that he is not sleeping at all.  He has to take a sleeping pill everynight.  How long will this take before his sleeping pattern will return to normal.  Regards.
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657231 tn?1453836403
I don't know. I find that unusual. At 7 weeks and on therapy, he should be getting more normal. Has his T returned back to a normal level? That can cause insomnia from what I read.
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OK.  He is on herbal meds for T.  Can only tell mid Feb if T is back to normal.
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657231 tn?1453836403
Why only herbals? He has a known pituitary issue? The herbals may not be doing enough replacement.
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Thanks for your reply.  Cant understand the Endo, he gave no meds whatsoever for low T.  I then put my husband on herbal meds which we get here known as testoforte.  What do you suggest.
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657231 tn?1453836403
Do you have the option of seeing another endo? After all, he had a large pituitary tumor removed - he needs monitoring and there may be other hormones that need replacement. I know growth hormone helped me sleep and that is often lost in surgery. Especially soon after surgery - it can take a while to get stable. Some do - some don't. I was a less stable person. LOL.
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Thats what I was also thinking.  Now that all doctors are back, I will schedule an appointment.
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657231 tn?1453836403
Keep us posted. I hope you can find a doctor to do more testing. He should be sleeping - it is restorative.
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I have a pituitary tumor (macro) and am presently seeing physicians and having several tests, (endo, MRI, eye exams, etc.) - it has been so enlightening and helpful reading your conversations with SHENAAZ, as I ready myself for this surgery. I live in Texas and am being treated in Austin area.  I would like to know approximately how long it takes from the time of the surgery to when you actually feel well enough to carry on daily activities. (I am retired.)  I realize everyone is different.  I am a very positive person and active and if all goes well with me, would you say 3 weeks until I am up and around.  I have spoken with my endocrinologist and realize she will be following me for several weeks to months after my surgery.  

Jan 11, 2013 is the last post I see between you and Shenaaz.  How is her husband doing now and is he back to a 'normal' life.

Thank you,
Texas Rose
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Hi this is Shenaaz.  Thank God my husband is back to normal.  Rumpled was extremely helpful.  Getting the right surgeon i.e. skilled surgeon is of utmost importance.  After the removal of the pit tumor, my husband was in ICU for 2 days and 1 day in highcare and when he went to the general ward on the 4th day, he was already feeling better.  This is because the neuro surgeon removed the tumor in one piece and save the pit gland.  Again I cannot stop thanking God.  Wish you all the success.
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I am very glad to hear your husband is doing well.  I hope my surgery will be just as successful.  I feel very confident about it and am a very strong person. I know that God will watch over me.  Thank you for your response.
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Hi, hope u doing well.  My sis in law has been diagnosed with phaeochromocytoma which is something to do with the adrenal glands and also endocrine system.  Any advice.  Tks.
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657231 tn?1453836403
Yes it does. Is this the sister of your husband? In which case the doctor should be on the lookout, perhaps for MEN - multiple endocrine neoplasia.

Pheo (I just can't spell all that!!!) is an adrenal tumor and the main symptom is high uncontrolled blood pressure. It can cycle as well. The surgery would be similar to the one I had - except only one adrenal would be removed.  She should find a surgeon that has done a great deal of laprascopic removal and few conversions to open as open surgeries are a huge (11" min) scar and a much much longer recovery and abdominal surgeries are not the most fun. I prefer the pituitary. I actually used a guy who did a lot of lab bands etc. as they do a lot of abdomnimal surgeries, cancer surgeries (mine did Sharon Osborne's cancer surgery!) and have the special equipment to make the surgery easy on the patient.

Her BP should drop once the tumor is out.
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Hi thanks for your reply.  Jee what havent you been through.  May God keep you well. This is my brother's wife.  She will be seeing the dr today to discuss.  Should she check her pituaitary gland?  Will keep you informed.
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657231 tn?1453836403
No. This one is adrenal only as far as I know - it only involves hormones that are found and made in the adrenals.

I have had a few surgeries - a dozen.

Hope things go well for her!
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I was looking through your posts and the excellent responses you'd got. Of interest, how is your husband receiving testosterone replacement therapy? Is he having injections or rubbing a gel onto the skin daily? The gel method is preferred as it keeps a steady state, whereas the jabs cause ups and down in testosterone levels. Your husband is highly likely to be deficient in human growth hormone. It is one the the earliest hormones to fail. Inadequate levels cause significant medical and quality of life problems.
Internationally, there is a tendency, even amongst endocrinologists, dismiss low levels of testosterone in males. When I was 52 I was told my level was "normal". In fact it was the level of a 90 to 100 year old man. It was an early sign I had a pituitary tumour.
With regard to human growth hormone, many pituitary patients who require a lifetime treatment, just don't get the drug. It is taken by daily injection, rather like the insulin a diabetic takes. It can make a massive difference in health and quality of life. To test for deficiencies in human growth hormone and cortisol requires special tests which involve blood being taken over a period of hours.

I live in England. Here we have a charity called the Pituitary Foundation. It is an excellent source of factual information and it has a website.

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Hi thanks for your info.  I put my husband on herbal tablets (1 tab twice a day) which we get here in South Africa called Hormone Booster by Solal and its doing wonders to him.  Recently took T test and its gone up from 90 to 230.  What is also amazing all the other tests like cortisol etc., is all normal only the T was low.  Even prolactin was normal.  Dr did about 10 blood tests and all showed normal.  Pse. also give me the webiste address for Pituitary Foundation.  My husband has to do an MRI this month just to check for the tumor and the healing process.  Regards.
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Just type Pituitary Foundation into the Google search engine.
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Hello Shenaaz

I'm currently considering having a pituitary surgery in South Africa, please can you share details of the surgeon who treated your husband?

I really look forward to hearing from you
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Hi.  Its Professor R Gopal who is in Johannesburg, Gauteng.  Tel: 011 852 5210.  Good Luck and let me know what happens.  Regards.
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Hi.  Hope you keeping well.  Need advice once again.  My husband's newphew has meningioma which is on the left side of the brain.  The first op was done by the Neuro who did not remove the entire tumor.  It has now grown again and he is getting headaches and seizures.  They gave him medication for 1 year to shrink but to no avail.   Please advise.
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657231 tn?1453836403
I am not a doctor, but I only know of anti-seizure meds but I don't know of any meds that shrink a meningioma.

Sometimes anatomy prevents removal - so it could be where the tumor sits that prevents total removal. Did he or his family get the reports so they know the before and after and get an explanation as to why it was a partial removal? In this case they may do radiation to shrink or kill the tumor. Again, depending on the location of the tumor, the risks can vary. Has that been discussed with him and his family?

There are also skull base surgeons who can use smaller instruments IF the lesion is operable - there are just so many factors here and little information. I hope he is getting other opinions, as well as getting his own records to know what is going on in his own body.
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Thanks for your reply.  His tumor is sitting on the left hand side of the brain.  Why partial removal was done is also now known and also why radiation was not suggested is also not known.  Anyway I will try and get more info from him.   Thanks once again.
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Hi.  Please explain exactly what is skull base surgeons.  Regards.
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Hi.  Thanks went on to the internet and found video of skull base surgery.  Very interesting.   Will look for skull base surgeon in South Africa.  Regards.
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Hi.  The MRI taken recently reads as follows:  The current scans demonstrate evidence of the previous surgery at the left temporal fossa and some gliosis and volume loss in that area.  The residual dural-based brightly enhancing mass is noted as before in the left upper temporal region.  Features are consistent with a meniongioma.   Direct AP and side to side dimensions on the axial view are 2.62cm and 2.71cm and this is identical when using the same measurement technique on the previous scans.  On coronal imaging the current dimensions are 2.94cm x 3.12cm, i.e. 2.94cm side to side and 3.12cm vertically on coronal post-contrast image no. 3.   On the previous scan the maximum dimensions in the coronal plane were 2.47cm x 2.33cm.   No other abnormalities are seen.  Conclusion:   The evince of previous surger is noted again at the left temporal fossa and the residual brightly enhancing tumour, consistent with a residual portion of meningioma.   On the current post-contrast axial imaging, the dimensions are identical to those of the previous scan of Sep. 2012.   On current coronal post-contrast imaging there does seem to be a fractional increase in size when compared with the previous scan.   Please let me have your comments.  Regards.
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657231 tn?1453836403
I'm not a doc - so all I can say is that it has grown a little and he has scar tissue forming (gliosis). We had a person posting before with a meningioma that kept growing back and I don't know if she lurks around anymore but she had to have a couple of surgeries and finally radiation.

It does not seem to be growing super fast though - in two years in has only been not even half a cm on one side - but still you would rather it not grow at all.

Is he having mass effect or other side effects from it? They may want to leave well enough alone until they have to do something?
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He gets seizures and mood swings.  I also needed to know more about endoscopic meningioma surgery.   Is it possible in his case.  Thanks once again.
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657231 tn?1453836403
I would have no idea not being a doctor - but I would ask about it considering that he has symptoms and scar tissue. It may be that since he has scarring, he may only have the option of radiation.

He may also be on meds like steroids that can cause mood swings. I hope that he can find a medication to control the seizures or some other way. Are his parents advocating for him? Or is he old enough that he and his wife, if any, are doing this?
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Thanks for the advice.  He has everyone around him to advocate him.  Is the scarring or the tumour causing the seizures?   If he chooses radiation which one is the good one with minimal side effects.
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657231 tn?1453836403
I am sorry I cannot answer that question about the cause of the seizures.

Gamma is the oldest form of radiation. It is one shot, so convenient. Cyber knife takes multiple treatments, from what I researched is slightly more accurately (this is all tiny tiny amounts but that can make a difference depending on the location). Proton beam is the newest and does not effect the tissue it passes through so it is the best as far as long term side effects, but is expensive and there are few centers around (in the US).

There are other things too but those are the ones I researched. You have to research as not every type is used in every case, and also ask about radiation leakage, necrosis odds in the long term and the fall back question what would you want if it was your family member.
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Hi.   I don't know if my husband's newphew knows what type of meningioma he has.  From the X-Ray report  can you establish what type of meningioma it is.   From my research there are are quite a few types of meningiomas and different treatment plan.  Thanks.
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Hi, I have asked my husband's nephew to see the Neurosurgeon.   Can you assist me with questions to ask the Neuro before he decides what treatment plan to take.  Thanks
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657231 tn?1453836403
I am not that experienced with menigiomas. So I am not that helpful in specifics - I know more about pituitary as that is what I had.

Most questions come from knowing the type, the aggressiveness, and what the normal treatment protocol is and if the doctor thinks that will work or does he suggest changes and why.

I wish I could be more helpful.
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Thanks will do my own research.  Regards.
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Hi.   When speak to my husband's newphew he informed me that his tumor is situated on the base of the brain.  This looks like a skull base tumor which according to research quite difficult to treat.   According to research his best option is radiation, but again the big question which one.  Thanks.
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657231 tn?1453836403
Skull base tumors may, or may not, but operated by skull base surgeons who have different tools and skills to remove them so I would consult one of them as a second opinion.

As for radiation, the deeper the tumor, the more healthy tissue is effected. In some cases, the head can be turned so that the tumor can be accessed so that few vital things are hit. The issues are radiation leakage - even though it is a beam, some of the beam can and from what I understand (my research was a while ago) make the area hit slightly wider - we are talking tiny amounts but if the tumor is near a vital blood vessel or nerve, this may be an issue. So you want an experienced center, and even though say, gamma is easy since it is one visit, perhaps one larger dose may not be the right course as smaller, more precise dosing. So I would question his neurologist about the types, the benefits that work FOR HIS TYPE OF TUMOR given that we don't know his type, and how long it will take to work, also the size and how extensive the radiation and if it will be a combo of surgery of radiation etc.
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Thank you! I just saw your response
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Thanks for your reply.   I have also emailed the Brain Tumor Centre and Pituary Disorders Program at Saint John's, Santa Monia, CA, for an opinion.  Regards.
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657231 tn?1453836403
Good! The expert here is also helpful but you did not give him much information in the post IMHO...
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Hello Shenaaz

Could you please advise on a very good endocrinologist in Johannesburg, I have booked an appointment with Prof Gopal, but I'd also like to see an endocrinologist while I'm in South Africa.

Thanks for helping
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Hi.  Dr Zaheer Bhayat on 011 042 8280. He is based in Bedfordview, near Eastgate, Johannesburg, Gauteng. If you don't mind, please inform both Prof. Gopal and Dr Bhayat that I referred you to them.  Good Luck and REgards.
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Hi.  Just checking if everything went successful.
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Hope you keeping well.  My husband had an MRI done and thank god there is no sign of any pituitary tumors.  Regards.
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657231 tn?1453836403
I have been ill, something lung so not been around as much. Glad to hear your husband is doing well!
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