my 9 year old daughter diagnosed 1/01. It was found by rapid vision loss. surger removed 70%. 2nd surgery 7/01 with 98% tumor removed. takes DDAVP,synthroid, Hydrocortisone. Tumor back 8/02 and we must decide about type of radiation. Please tell me different treatments used and any pros/cons to this treatment.
Dan - you know you have a friend back on the East Coast if you ever need anything! Take care buddy, and keep your chin up. Best, Boomer
Name:
nicola owens Email:
Location:
flintshire, u.k.
Tumor:
craniopharynioma
Via:
Dumb Luck
Comment:
38
Sunday, 7 April 2002 - 04:14:15am
my son alex diag 95 aged 2 surgery 95,96,98. radio in 98 tumour mostly gone but new growth in different place(frontal lobe)prob caused by radio. alex is blind and needs ddavp,thyroxine,hydro,growth hormone and epilim for fits. love to hear off any body especially anyone who's experienced new growths after radiotherapy
Name:
Rizpah Stone Email:
Location:
Seattle, Washington USA
Tumor:
craniopharyngioma
Comment:
37
Saturday, 30 March 2002 - 05:28:30pm
My son was diagnosed on 3/22/02 with craniopharyngioma. He is 9yrs old and the size of a 5-6yr old. Need to talk to any parents of children with this. We have not met or heard of any other families with this.We would appreciate anything, even just to be able to talk to other families to know we are not alone.
Name:
Louise Pearson Email:
Location:
Derby, England
Tumor:
Craniopharyngioma
Via:
search engine
Comment:
36
Monday, 11 March 2002 - 09:57:39pm
My son was diagnosed at the age of 5 with a craniopharyngioma. He had a resection in Dec 1997 and a further op March 1998, followed by Radiotherapy in May 1998. He lost the sight in his right eye and is partially sighted in his left eye.He is on Hydrocortisone, Thyroxine and DDAVP following surgery. We noticed a slight change in his personality but nothing to worry about until April 2000 when he became very aggressive. Things haven't got any easier and his aggressiveness is very unpredictable which incs. hitting, kicking. biting, headbutting throwing etc. We have other children and because of this he is unable to live at home at the moment which is very sad for us all.He can't be left alone for a second. Has any one else experienced behavioural problems linked with brain injury?, if so please get in touch because I am desperate to hear from someone and see how they cope with it.
Name:
Emily Thompson
Tumor:
Craniopharyngioma
Via:
search engine
Comment:
35
Monday, 11 March 2002 - 01:09:22am
what can I say but thank you so much for your caring. I got lots of info on this site and will be coming back!! Emily and Jordan (7 yr son has cranio)
I think your site is wonderful. I was first diagnosed with a suprasellar cranio at 11 and operated on, then again at 13. Since then, i have been cranio free, although have peripheral right eye defects + panhypopituitarism + obesity. To all the parents and family members out there : it isn't easy going through adolescence, but it's even tougher with all this But hey, now I'm preparing for my final exams of med school and hoping for a residency in cardiovascular surgery ! Who said you can't live through it and hope for great things to come your way ? I empathise with each and every one of you and wish you all well. Pat
Name:
david eblet Email:
Location:
filey, north yorkshire england
Tumor:
craniopharynlioma
Comment:
33
Monday, 19 November 2001 - 06:13:33am
My son Haydn is nine years old. In the 6 weeks prior to collapsing at school he had suffered with headaches, sickness and double vision. He was admitted to hospital and a day and a half later he was transferred to Leeds General Infirmary (LGI) various scans and tests were done and we were told he had a craniopharynlioma tumour and they would operate to remove it in the next couple of days. The doctors removed only part of Haydn's tumour as if all had been removed they would have left him blind. This was done on Monday and he had a shunt fitted on Saturday, it is now Sunday night and we have been told that he is making excellant recovery and provided his blood tests are normal in the next few days he will be home by the weekend. At the moment we know he needs radiotheory but other than this we do not know what other treatment he may need or medication he may need to be on. We have read all your stories and notice many of you speak of DDAVP - what is this? We can emipatise with each and every one of you and wish you all well. Dave & Suzanne
Name:
Randi Maher
Location:
Westchester, NY USA
Tumor:
astrocytoma
Via:
search engine
Comment:
32
Saturday, 29 September 2001 - 05:50:17am
Dear Phoenix, I was looking for inforemation about childrens brain tumors and found your site on the search engines. I read your son's story and frankly I dont know how you manage as a single parent, and still find the time or desire to make this web. I can barely manage and I have a wonderful husband who helps out. My son Dallin has Astrocytoma and I will be adding his story to your section as soon as I collect my thoughts. Reading everyone else's has been very helpful and makes me remember that we are not alone. God bless you all. I hope you don't mind but I am emailing this web address to my friends from the brain tumor support group I belong to. They will love the many varied resources you have provided. Keep it up! Randi and Dallin
Name:
Linda Email:
Location:
Kansas, USA
Tumor:
craniopharyngioma
Comment:
31
Saturday, 8 September 2001 - 10:08:48pm
It was not myself but my husband that had this.He had one at age 7 and another at age 17.My story is finished now except for my grief.As a result of the first tumor,he lost all vision in the left eye;peripheral vision in the right.He had diabetes insipidus and he had to take synthroid and cortisone as well as DDAVP nasal spray.He later developed short term memory problems.Years of having to take cortisone weakened his bones and they broke easily.Finally the damage done caused him to start having strokes at age 31.I was his caregiver as well as his wife.He needed help to walk;he had to have pureed foods and thickened liquids.He was very impulsive.He needed diapers changed.He had his last stroke at age 35.For 6 months he suffered terribly.He kept going from bad to worse until he passed away in December that year,2 days before our 10th anniversary.Will anything ever ease the pain????????
I think your site is wonderful. I've had cancer twice, at age 26 and 35. Faith is a very big part in the healing - don't lose yours. Cancer can be beaten I'm a living testament. I’ve bookmarked your site and will do what I can to support the research. Speaking with you, looking at what you've accomplished with you site, I can tell you have a heart of gold, big enough to make a difference. Keep up the great work, tell your son I understand and Love him for being the champion he is. I wrote a paper about my first attack, I would like to send it to you. It's rather long, however please print it out and give it to your son and whomever else you think will benefit. I will send it as soon as I can, directly to your email address. Love Victor B. Mattaur
Name:
Roberta P. Email:
Location:
Staten Island, NY
Tumor:
Craniopharyngioma
Via:
news group
Comment:
29
Monday, 18 June 2001 - 12:38:51pm
Great site! Your domain says alot about you, and its all good. I found alot of great links here that will help my daughter. She is only 2 and had one surgery and another is eminent. What a terrible monster this disease is. Thank you for your time and caring. This is a wonderful place for those of us who need help. I will watch your chat page for any announcements of chats. Roberta and Hope (my daughter)
Name:
Melanie Thompson Email:
Location:
Palmdale, Ca USA
Tumor:
Astrocytoma
Via:
search engine
Comment:
28
Monday, 18 June 2001 - 06:23:40am
Phoenix, the name fits you so well. I just read your site and wanted to tell you how important I think your contribution is. Your hard work and efforts not just for your own child, but for all who suffer is special. I wish blessings on you and your son, and all the people you are helping. You keep on rising from the ashes Phoenix, never stop. Thankfully, Melanie
Name:
Jeff Renshaw Email:
Location:
Longwood, FL USA
Tumor:
Craniopharyngioma
Comment:
27
Monday, 7 May 2001 - 12:38:40pm
My son, Connor 11, dx craniopharyngioma 12/19 - full resection 12/22/00. 3 MRIs post surgery clean. Recently exhibiting symptoms of blinking/tick right eye. Has anyone else experienced these symptoms? Neuro cant find problem, Endos say same thing.
Name:
Skip Thompson Email:
Location:
Frostburg, MD USA
Tumor:
Craniopharyngioma
Comment:
26
Thursday, 12 April 2001 - 04:07:21am
Has anybody had problems with insomnia related to craniopharyngiomas. This was one of the major problems I had before the tumor was diagnosed. I would get sinus headaches that would trigger something that would cause me to go days without sleep. Since the surgery I sleep better but not good. I work shift work and have lots more dificulty adjusting than I use to. Also lots of fatigue. Can anybody relate to this?
Name:
John Harron Email:
Location:
Edinburgh, Scotland
Tumor:
craniopharyngioma
Comment:
25
Monday, 19 March 2001 - 09:13:22pm
MY daughter Fiona (aged 21) has recently been diagnosed as having cranio but as her eyes and pituitary function are fine local neuro-surgeon recommends a wait and see approach as he says any surgery puts her pituitary function at great risk. Any suggestions welcome...wait and see is hard we'd rather see it removed. Anyone know of anyone in UK that has good record of removing craniopharyngiomas.
Name:
Siobhan Santoni Email:
Company:
stream
Location:
derry, derry Ireland
Tumor:
craniopharingioma
Via:
search engine
Comment:
24
Tuesday, 6 March 2001 - 02:33:43pm
Ryan was diagnosed May 1998 aged 3.3 years, large tumor removed 3.5x5.5 in Rome Italy by an excellent neurosurgeon Prof di Rocco. Ryan has partial sight one eye and other eye good although has tunnel vision. Ryan takes hydrocortizone and thriod but no DDAVP as he gets ervere migraine and tiredness from this he is not taking growth hormones. he is now turned 6 years and is 109cm tall 22kilos and doing excellent at school, he is so funny and very popular with an excellent memory. Ryan hates eating, he always feels full up! this is due to hypothalmus damage, other people have a feeling of emptyness in their stomach and eat often.. this is due to the messages not being sent, just like the messages are not being sent to the adrenals and the thyroid etc; anyone with a story to tell I love to hear from you. Ryan still has a 2x2.5 cystic tumor but it does not bother him or me, it is part of his DNA, Ryans orginal tumor had 32 perfectly formed teeth inside the tumor..I would like to hear from anyone who beleive in homopathic remedies as Ryan has improved 100% since taking ginko ginseng and century and a herbal tea with honey before bed, he sleeps all night even without DDAVP!
Name:
kim spino Email:
Location:
washington, PA usa
Comment:
23
Thursday, 8 February 2001 - 01:32:22am
Hello my name is Kim my son Anthony was dx on 8/30/00 with 2 craniopharyngioma's on 9/5/00 he had a steriotactic procedure done and P32 was placed into the top tumor on 12/7/00 he had a mri that showed that it did get smaller however the lower tumor stayed the same we were hoping they were conacted. Anthony's next mri will be 3/1/01 if anyone has had the same type of treatment please let me know how it turned out this whole thing scares me to death because I don't know what is ahead for us. I pray each day for Anthony and each of you and hope we all get through this with the very best outcome anything else to me is unacceptable. Thanks for listening may god bless each one us. Kim washington, PA.
Name:
Skip Thompson Email:
Location:
Frostburg, MD USA
Tumor:
Craniopharyngioma
Comment:
22
Tuesday, 6 February 2001 - 05:32:32am
In June I had surgery to remove a large Craniopharyngioma. I have since gained 40 pounds and have to use DDAVP and Androgen. The doctors can't explain the weight gain since my thyroid and adrenals have tested good. I also have alot of fatigue.Can anybody relate to this problem? Any info would be helpful.
Name:
Jeff Renshaw Email:
Location:
Orlado, FL USA
Tumor:
Craniopharyngioma
Comment:
21
Monday, 22 January 2001 - 10:56:59pm
Son, Connor, 11 years old. Headaches. MRI found craniopharyngioma 12/18/00. 2.5x3.5 cms. 12 hours surgery on 12/22. Home on 1/6/01. Doing well. 2x vision getting better, ddavp, synthroid, cortef. Therapy 3x per week. Fantastic Neurosurgion. Dr. Christopher Gegg. Arnold Palmer Hospital, Orl. FLa
