Brain/Pituitary Tumors :: Parapharyngeal Space Tumor (pps)
Feb 8, 2016
This is all very new to me so I hope I'm doing this right but I'm just looking for some reassurance. I'm 26 years old and was diagnosed with a parapharyngeal space tumour in late 2012. 2013 my surgeon attempted to remove the tumor by cutting my jaw and going through the back of my throat into the pps, unfortunately he was unsuccessful and didn't remove any of the tumor. We decided to monitor it over two years and see if a change in growth was noted. I should mention that for the last 4 years I've had pain in my left ear and face which has been gradually worsening, and around 10 months ago I lost hearing in the same ear which is now joined by a high pitched ringing. A mri in early December 2015 showed a growth in tumor so my surgeon decided to remove it, however he would need to take a wider approach to ensure he would get the tumor this time, he is concerned that it's involved with my lower cranial nerves so we may need to remove or damage them which would greatly alter my quality of life. Currently I'm looking at other options or other ENT over the world for more opinions.im desperate to find someone else who has been through something similar or if anyone has a suggestion of surgeon or alternative treatments. They are unsure the nature of my tumor so time is of the essence for me. Any help would be greatly appreciated. I have a 1 year old baby who I need to be around for to watch grow up.
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I had a pituitary tumor removed several years ago. I had a follow up MRI last month and an appointment with my neurosurgeon. All is well. I did inform the Doctor I have been tired lately so he ordered blood work to check hormone levels. Turns out my testosterone level is low. Actually looked at my bloodwork records just prior to tumor removal and all hormone levels were WAY OFF - They have all seemed to come back to normal levels with the exception of my testosterone. My surgeon is referring me to a endocrinologist. Working on making an appointment now. Has anyone else experienced a low testosterone level after this tumor removal and if so what course of action did you have to take? I am 46 now and I understand testosterone levels do begin to drop a bit in males once reaching the age of 40.
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I'm a 30 year old active female with a history of prolactin/pituitary problems.
- When I was 17 I was diagnosed with a pituitary macro adenoma. I responded well to cabergoline so no surgery was carried out to shrink the tumour.
- When I was 19 my MRI showed a small bleed to the tumour which caused it to shrink completely.
- when I was 21 I was taken off cabergoline and my prolactin levels remained normal for a few years.
- when I was 25 I noticed familiar symptoms, breast discharge and fatigue so went back to my consultant. My prolactin levels creeped back into the abnormal range and I was put back on cabergoline. MRI showed no tumour.
- 3 months back into treatment I found that cabergoline was making me incredibly tired and low so my consultant switched me to Quinagolide (norprolac) which worked and gave me no nasty side effects.
- I'm now 30years old and last year my consultant and I thought it was time to stop medication as my prolactin levels remained in the normal 300 mark. 2 weeks after coming off my medication I noticed my moods changed significantly and my sex drive vanished. I went back for immediate blood tests and my prolactin levels had raised up to 700! I went back on Quinagolide to reduce the levels and once again felt OK.
- I recently had another MRI to see if there had been any changes. My MRI was once again clear.
I'm incredibly frustrated and gutted to still be taking medication for something that I simply don't understand. Why are my prolactin levels continuing to rise yet I no longer have a pituitary tumour!? I go back to see my consultant in a couple of weeks but I fear that nothing will change and I will continue to treat a problem rather than get to the bottom of the cause.
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Are brain tumors hereditary? My Dad my Brother and just now, my nephew died from one.
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I have a small hard lump behind my ear and I'm terrified it's something awful like a brain tumor... Does anyone else have this or know what it could be?
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Hi, I’m hoping some people can hopefully give me some advice please regarding treatment. My history: I’m 30, diagnosed with secondary adrenal insufficiency via an insulin tolerance test. I have borderline low hypothyroidism, low prolactin. No cysts. I am 40kg, 5ft tall so I am very petite.
I currently take hydrocortisone after each meal 8am-4 mg, 12m-4mg, 3.30pm-4mg, 8pm- 3 mg. I have to take my medication following food to reduce the intensity of the spike. I also cannot tolerate more than 5mg at one time without getting awful side effects of anxiety and panic when the tablet peaks in my blood at 30 minutes. Each doe I take only lasts around 2.5-3 hours.If I am to take 10mg at once I feel ‘high’ and ‘rushy’ and anxious when it kicks in then after 3 hours its starts to drop and I feel low cortisol again.
I feel like I am swinging all day every day. I am still so fatigued, have very bad dizziness and brain fog, light sensitivity, blurred vision, weakness, leg and arm cramps, reactive hypoglycemia and achy.
4 weeks ago I ended up having an adrenal crises, yes it was horrendous and scary but I got through it and in a way it was a blessing because it has been a BIG wake up call that I need to stop being scared of trying new medication in fear of getting sicker and realised I have got to try and get myself well.
I have been so unwell since I was 21 I am now 30. ….i have lost so much of my life and I am sacred I am never going to get better or managed.
My consultant prescribes medrol a while ago and I have been too scared to start to but after my crises I started it. I am now taking 1mg Medrol in the morning and then 3 more doses of hydrocortisone at 4mg, 4mg and 2.5mg…
When I first started the Medrol I could feel it working but now its like I can not feel it and by 4 hours later I am feeling hypoglycaemic, weak nauseas etc… I am feeling so unwell after I eat a meal, like all my bodies energy is wiped out from digesting my food and im now lying in bed weak, giddy and lots of pain cramps in my arms and legs…
I have low blood pressure and my consultants suggested
fludrocortisone. I just don’t know what to do anymore. My consultants saying I shouldn’t feel so unwell and im just so lost.
Has anyone been on Medrol and can give advice on this. Im very petite, 5ft and 40 kg…I just feel so up and down and struggling with it all and also feel my symptoms get worse or better during certain times of the month..
i also cannot tolerate many carbohydrates because my blood glucose pikes very high at 1 1/2 hours post eating and drops every low by 21/2-3 hours.
I’ve now had to set up a backup carer to help when am unwell because i am on my own with 2 young children. I am getting help with them now and also trying to get support for taking them to school…im slowly getting there
I have also done a month of blood tests looking at progesterone and estrogen and have found a pattern in some of my symptoms.. I most definitely feel my worst when I am coming off my period, stopping bleeding where I start to feel cold and foggy and nauseous I then when ovulating feel at my worst and the 2 days when my estrogen was highest I had severe anxiety, tremor, agoraphobia, intense drowsiness after eating and these symptoms always disappear once I ovulate and start seeing progesterone mucous . Apart from these symptoms which come on with my cycle I suffer with all my other symptoms throughout the whole month with increase and decrease throughout my cycle.
I have included a lot of tests below and anyone who feels they can help would be so much appreciated. Thank you for your time
These are my most recent blood test
June 20th 2014
Autoimmune profile – normal no action
Mitochondrial antibody level – negative
Anti-smooth muscle autoantibodies – negative
Panetta cell autoantibodies – negative
Reticulum antibody titre – negative
Anti-liver kidney micro ab lev – negative
Serum vitamin D – 71 nmol/l
Erythrocyte sedimentation rate – 9 mm/h (0-15)
Total white cell count - 6.5 10*9/L (3.5-10.0010*9/L)
Red blood cell count - 4.14 10*12/L (3.8-5.0010*12/L)
Haemoglobin estimation - 119g/L (115.00-145.00g/L)
Haematocrit - 0.360L/L (0.36-0.46L/L)
Mean Corpuscular volume (MCV) - 87Fl (84-98)
Mean Corusc. Haemoglobin (MCH) - 28.7pg (27.5-32)
Mean Corpusc. HB conc (MCHC) - 331g/L (300-360)
Red cell distribution width - 15.1% (<14.50%)
Platelet count - 194 10.9/L (150-400 0010*9/L)
Neutrophil count 3.3 - 10.9/L (1-3.5010*9/L)
Lymphocyte count - 2.0 10*9/l (1-3.5010*9/L)
Monocyte count 0.8 - 10.9/L (0.31.0010*9/L)
Eosinophil count - 0.3 10*9/L (<0.401089/L)
Basophil count - 0.1 10*9/L (<0.1010*9/L)
Serum folate - 4ug/L (3-20)
Serum ferritin - 8ug/L (10-200)
Vitamin B12 - 632 ng/L (200-910)
TSH - 3.04 mu/L (0.35-5)
Free T4 - 11pmol/L (9-22)
Liver function tests
Total bilirubin level - 7umol/L (1-21)
ALT - 9 U/L (1-50)
Blood calcium level 2.16 mmol//L
Corrected serum calcium level – 2.14 mmol/L (2.20-2.60)
Serum inorganic phosphate - 1.44mmol/L (0.8-1.50)
Serum alkaline phosphatase – 54 U/L (30-130)
Serum total protein 69 g/L (60-80)
Serum albumin - 40 g/L (35-50)
Serum globulin - 29 g/L(22-40)
Serum sodium - 136 mmol/L (133-146)
Serum potassium - 4mmol (3.5-5.3)
Serum urea level - 3.8 (2.50-7.8)
Serum creatinine - 49 umol/L (20-103)
Plasma C reactive protein - 0.3mg/L (<5.00mg/l)
I paid for a whole series of blood tests. They was taken on day 4 of my period, I had fasted for 12 hours. I was salt fasted for 24 hours and remained sitting up prior to the test and during the test so the aldosterone and renin tests were accurate. The bloods were taken at 9am. I take hydrocortisone 15mg a day and took my last dose of 2.5mg at 8pm the night before the test. I was taking no supplimenst or anything else around the time of the test.
HORMONE PROFILE
Aldosterone 399.0 pmol/L Upright 100 - 800 pmol/L Supine 100 - 8450pmol/L
RENIN 66.2 mU/L Upright 5.4 - 60 mU/L Supine 5.4 - 30 mU/L
Aldosterone: Renin ratio 6 <80 Conn's Unlikely
FSH 6.1 U/L
LH 11.9
Oestradiol 106 pmol/L
Prolactin 144 mU/L 102 - 496
Cortisol (basal) 449 nmol/L (171 - 536) (BASAL 171-536, EVENING 64 - 327)
Free T3 4.8 pmol/L (3.1 - 6.8)
Thyroid stimulating hormone 2.310 mU/L (0.270 -4.200)
Free T4 14.0 pmol/L (12 - 22)
FULL BLOOD COUNT
WBC 4.90 x10^9/L (4.0 - 11.0)
RBC 4.43 x10^12/L (3.80 -5.80)
Haemoglobin 135 g/L (120 - 150) R
HCT 0.41 ratio (0.36 -0.46)
MCV 93.0 fL (80.0 -100.0)
MCH 30.4 pg (27.0 -32.0)
MCHC 326 g/L (315 - 345)
Platelets 241 x10^9/L (140 - 440)
RDW 11.8 (0.0 - 14.0) **
MPV 9.3 fL
Neutrophils(Abs) 2.58 10^9/L (2.0 - 7.5)
Lymphocytes (Abs) 1.69 10^9/L (1.5 - 4.0)
Monocytes (Abs) 0.44 10^9/L (0.2 - 0.8)
Eosinophils (Abs) 0.22 10^9/L (0.0 - 0.4)
Basophils (Abs) 0.02 10^9/L (0 - 0.1)
CRP< 0.3 mg/L (0 - 5)
BIOCHEMISTRY
Sodium 139 mmol/L (133 - 146)
Potassium 4.2 mmol/L (3.5 - 5.3)
Urea 4.9 mmol/L (2.8 - 7.8)
Creatinine 56 umol/L (45 - 84)
estimated GFR (eGFR) >90 ml/min
LIVER FUNCTION TEST
Total bilirubin 5 umol/L (0 - 21)
Alkaline phosphatase (ALP) 65 Iu/L (30 - 130)
ALT 11 Iu/L (0 - 33)
GGT 8 Iu/L (UP TO 40)
Total Protein 78 g/L (60 - 80)
Albumin 49 g/L (35 - 50)
Globulin 29 g/L (18 - 35)
AST 16 Iu/L (UP TO 32)
Lactate dehydrogenase 171 Iu/L (135 - 214)
Serum Calcium 2.39 mmol/L (2.2 - 2.6)
Albumin 49 g/L (35 - 50)
Adjusted Calcium 2.30 mmol/L (2.20 -2.60)
Uric Acid 278 umol/L (140 - 360)
Glucose 3.8 mmol/L (4.2 - 6.1) **
LIPID PROFILE
Cholesterol 3.94 mmol/L (0.0 - 5.2)
Triglycerides 0.54 mmol/L (2.26) *
HDL cholesterol 1.41 mmol/L (> 1.68)
Cholesterol/HDL ratio 2.8 ( <5)
Low density lipoprotein 2.28 mmol/L (2.5 - 4.5) **
% HDL/Total Cholesterol 35.79 %
B12 687 ng/L (191 - 663) **
Folate (serum) 5.4 ug/L (4.6 - 18.7)
IRON AND UIBC
UIBC 60.0 umol/L
Iron 17.0 umol/L (6.6 - 30.4)
Total iron binding Capacity 77.0 umol/L (41-77)
Transferrin saturation 22.1 % (20-55)
Ferritin 13.1 ug/L (13 - 400)
Ferritin 13.1 ug/L (13 - 400)
Vitamin D 24.5 nmol/L Reported
<25 nmol/L: Severe Vitamin D deficiency
25-75 nmol/L:Borderline ranging to insufficiency
75-200 nmol/L: Optimally replete
>250 nmol/L:Possible toxicity, if sustained
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How long does it take to get full pituitary function recovery after surgery to remove a non-functioning pituitary adenoma that was approximately 3cm in size.
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It was discovered i had an 8mm microadenoma. It raised my prolactin to 175 and lowered testosterone to 70. cabergoline lowered prolactin to normal levels. I had testosterone therapy raising my levels to normal but they went much lower again after the therapy. prolactin remains low. cortisol and insulin growth like factor 1 remain slightly elevated. Can any help as to why my testosterone remains low. I am 45 and active. slightly overweight by about 25 lbs but have always been even before the adenoma and prolactin issues.
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In 2013 I was diagnosed with N.E.T. malignant of the ilium where small intestine meet large intestine. They found it during a colonoscopy, when they did the surgery to remove they found one more tumor in the appendix. The tumor in the intestine was 3 cm and the one the the appendix was 1 cm. The one in the intestine went through the wall so they took lymph nodes 12 found only 11 - 1+ , so they said they needed to keep an eye on me for 2 years. These are they results of my chromogranin test which don't make sense to me???
Close to surgery date when I had 2 positive tumors
Chromogranin A
9/13 53. <93
2/14. 97. <93
4/14. 76. <93
7/14. 60. <93
7/15. 92. <93
With the 7/15 test they found 3 enlarged lymph nodes around the surgery area during the C.A.T. scan but very slightly enlarged like 2 mm enlarged each not enough for him to worry. But he's going to retest in January, he said it might be just an infection around the surgical site. But he did a full blood work up and my count wasn't up.
During the 2 years since the surgery I have had extreme pain in the surgical site and in another site in there they've done all external testing they can but when I suggested a colonoscopy to view the surgical site they said my Oncologist said one was not needed to view tumors.
I asked my primary care doctor to speak to the gastrointestinal doctor and they refused to do the test. So I went outside the hospital that did my surgery they refused to do the test saying go back to the place you had your previous test done. So how do I know if this is from the surgical site or the lymph nodes since when I actually had to malignant tumor's my levels were within normal range?
If you need to know more please ask . At this point I'm having a very hard time trusting my physician care.
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Most who have ptsd ask for space from their partner.
Can you please tell me how long is this space: weeks, month, or months
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A few weeks ago while cleaning myself in the shower I discovered hard lump inside my anus. I suppose that it is on my sphincter because it is not very far into the anus. I was able to look at it upon closer inspection with a mirror and what I see is something about the size of a grain of sand and it is light in color. Is this a polyp? A tumor? I'm so scared of this because my mom recently died of colon cancer at age 57. I don't really have any other symptoms, although a few weeks ago I did see bright blood on wiping (but I think that was probably caused from chafing since I shaved back there the day before). There MAY be another similar lump a little farther up, but I'm unable to see it in a mirror.
Also, I have had unprotected anal sex in the past (with the same partner) but the last time I did that was April 2013. The person I did it with was tested for std's beforehand.
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Can a 6.6mm lesion if not seen on a previous brain Mri scan be classed as a new lesion? Regardless of location can extra spots not seen on a previous Mri, be classed as new?
I was told i had a few extra spots than on my previous Mri, I had symptoms which were new. When putting together these two findings, why was lumbar puncture results relied upon more heavily than new spots and symptoms?
In reading the McDonald Criteria it states in one of it's guidelines, that any new lesion or lesions regardless of timing when compared to a baseline scan is evidence of Dissemination in Space, am i interpreting this correctly?
Dissemination in Time. Is this guideline for clinical attacks? I was admitted to hospital with double vision and loss of balance in 2014. I was attending a neurologist for several years, beginning with pins and needles way back in 2010, roughly around 2012, 2013, I presented with morning headaches which were on going for months. I also experienced around this time a numbness all over my body upon awakening on several occasions it lasted mere seconds, but i wonder was were these headaches and numbness a sign of something happening.
Still have double vision and balance problems, my double vision happens when the pen or finger test is carried out, i don't see double daily, but do have blurring vision and fullness in my head. I cannot hold my urine. I get small leaking especially when i awake, or if i need to go it's with urgency. I have bowel problems, i have extreme fatigue and weakness. My legs feel tight and they can get extremely painful. The weakness is awful, i can't apply myself to simple tasks, they exhaust me, it's like climbing a mountain to do things. I think my planning and organizational skills have slowed drastically. I am all day getting nowhere, my concentration is very poor. Definitely planning and organizational skills are very bad.
New symptoms and new spots. Lumbar puncture was advised to rule MS in or out. What is confusing me still two years on are my symptoms and my brain Mri 2014. A lesion measuring 6.6mm was noted as being the largest of 19 in both cerebral hemispheres, most numerous in the right frontal lobe. My second neurologist referred to T2 hyperintensities in the juxtacortical right frontal lobe. My latest two MRI's 2015, 2016, note small area's of white matter abnormality seen in the right frontal lobe. Both were compared by the same radiologist. He said there has been no change in size or number when comparing 2 016 to 2015. They are stable. No progression.
So I don't know, if i have two lesions or one lesion. 6.6mm and 3.5mm are two different measurements.
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Just started to feel space and weary of my surroundings why can this be I did have a bad day thinking all sorts yesterday can this be from that ?
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I am a young adult and I have huge problems with my teeth now after several years of not having medical coverage and extreme fear of dentists. pretty much all my molars are gone and need to be extracted, but on top of that, I may not even be able to get implants or partials because I have an even bigger issue with my bite.I went to a prosthodontist who told me that there isn't enough space between the top and bottom teeth to put anything there like an implant or even dentures and this is absolutely terrifying. He basically told me that he couldn't help me because he "limits his practice to crowns and bridges" so he told me to go back to my general dentist to ask what they can do with my bite. In the end of the day I didn't get anything out of that visit besides horrific news so my question right now is, can it be possible that I can't even get partials because of my bite? what exactly can be done about this? at the moment I have severe anxiety and fear so I can't sleep or even think because of the news that I got and I'm desperate for some good news. Can anyone please help me understand how I can be treated so i could AT LEAST get dentures if not implants?
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Can anyone tell me what this means?
Residual intervertebral disk space at s1-s2.
I know it isn't anything catastrophic I am just not sure what it means.
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57 yo f with chronic pain for 33 years, diagnosed with Fibromyalgia (fibromyalgia), recent Pre- Diabetic, chronic pain all over with these tumors growing all over. They are leaning towards IgG4. For my pain relief I start my day with Cayenne Pepper, Turmeric, Ginger Root, Thyme, Basil, Black Pepper, Garlic, Cardamom, very little Fennel not each day, and Beetroot and Avocado, Wheatgrass, Kombucha and other Probiotics. I am not on any medicine yet, I can't do the steroids.
I have learned that these herbs really help me the tumors in my lungs disappeared. Can anyone else share a natural healing herb and support.
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My LH is 5.6 and my FSH is 3.7. One Dr says this is good and shows I'm not going through menopause. Another Dr said they are low for my age (I'm 37). My testosterone was also low. My prolactin is 412. One Dr says its within normal range, another says its slightly high lol So here I am, wondering if anyone else has had similar levels & if so what they mean?
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Very healthy adult male, with these numbers:
LH: <0.2 (undetectable)
FSH: <0.2 (undetectable)
Vitamins D, 25-hydroxy: 27.4
T: 154
All of these are abnormally low. I feel fine, but I suffer from ED, low libido
Doctors 'note' on the bottom of the test results were:
Needs to see endocrinology specialist AASAP!
Ok, nobody likes to see ASAP! Written by a Physician... How worried should I be?
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I found out about 6 months ago that I have high prolactin levels. They have put me on 2 different medications to reduce the levels. The first one made me sick so they lowered the dose. I am still experiencing abdominal cramps when I take them and my doctor doesn't seem to be concerned about it.
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I might have had 2 or 3 mild headaches in my life.
6 months ago i had most of my pituitary gland removed due to Cushing's Disease.
3 months ago i had a visual field test that showed possible swelling around the optic nerve.
6 weeks ago i started waking with headaches at about 4.30am ! i would sleep more then wake later with less of a headache but when i stood up i would get a whooshing sound in my ears and a throbbing in the top of my head. i told me GP. She said its normal when you first stand up ( Normal My #$$, if it was normal wouldnt it have been happening all my life, anyway i digress lol ). So i had these headaches, i got blurred vision and my blood pressure went up to 234/127. So off i go to hospital for 4 days.They played around with my blood pressure meds and sent me home. I still had headaches, blurred vision and my BP was 180/105( now on 4 different BP meds ).
2 weeks ago i went and had a repeat of my visual field test. The Opthmalogist wasnt too happy, basically told me one quadrant of my vision in my left eye was gone. Said he would speak to my Endocrinologist !
2 days later i noticed what i can only describe as a smudge in my vision...very annoying, but not painful and yes i can still see. but im not driving, im too scared to. I drove one day and as it got darker i couldnt tell where the other cars on the road were, kind of a distortion thing i guess
My Endocrinologist rang the next day and said i need to go for an urgent MRI...so i did.
That was 1 week ago. i have had no results, no phone calls. But i did get a letter advising me i have a Neurology outpatient appointment on 13th october ! i rang to confirm as i was waiting for an endocrine appointment. Hospital said, yes, the neurosurgeon refered you to neurolgy following your MRI. Hmmm thanks for that.
So now im trying to guess whats going on. Did my MRI show up something, if so what?, if not then why am i being referred to neurology?
I hate being in the dark. Yes i know i only have 2 weeks til i find out, but 2 weeks is hell when your second guessing.
Summary : i still have headaches ( they are for the most part mild, throbbing when i stand followed by whooshing in ears), vision has maybe slightly improved in last 2 days but still not normal. Blood pressure is still sitting around 180/105
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My mother has been recently discovered a small growth on her pituitary gland. Her problems started three months ago with her irregular monthly periods and strange lactation. The tests she did showed significant increase of hormones. Then her doctor arranged CT scan and tumor was discovered. She started to have problems with her vision recently. Could problems with pituitary gland be causing vision problems?
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