What does my future hold?

• By tracey
• Posted January 23, 2008 at 8:42 am

hi simon my son has the same question as you are asking hes 21yrs old now and hes had a brain stem tumor which was removed but unfortunetly hes now blind.that was down to the lack of care he got off his gp for not believing about his severe head aches he said my son was suffering from stress.he has 2 more tumors in his right eye and 3 now in his kidneys hes going for a brain scan today because he has 2 cysts on his brain and we are going to see if they have grown.he asked me mum am i going to die young,i didnt have the answer for him.he lives for today thats what he has decided hes not suffering at all only mentaly not physicaly so thats something.excepting his blindness has been the hardest of all for him.who knows whats arround the corner for us all,so my advice to you would be live for today simon and enjoy your life as much as you would want too.dont let vhl stop you from doing that,as my son says he will not let vhl beat him.keep your chin up simon and stay posative take care now from tracey x

• Reply
• Report post

• By elainef66
• Posted January 24, 2008 at 1:05 pm

Welcome Simon,
Aa you acknowledge yourself, individual experiences range the entire spectrum... Even within the same family, with individuals having the same mutation, and superficially at least the same habits and environment the history can be drastically different. Specifically my mother in law had two brain tumors removed in her 30's (she died from complcations, in the 70's), my sister-in-law lost an eye in her teens, and now in her late forties has had no known issues since... my husband had eye, brain and spine surgeries in his mid-twenties, but in the 5 past years has only had kidney tumors, treated laparascopically. In a nutshell he's a healthy 35 year-old who, works a strenous physical job, and goes to his annual once-over to avoid nasty surprises.
There is an observed trend that the incidence of "issues" seems to spike at ages of hormonal changes: i.e. puberty, menopause (I think your safe on that one, although guys have their own transitions), etc. You just found out about this, but you may have had some of these manifestations of VHL for a decade of more - your got all the way to 38 before it became obvious (or at least your age when the headaches started). It generally isn't something that just snowballs exponentially into more and more tumors with no end in sight : some folks go a decade or more without anything major - and then just one or two things need "maintenance".
I think there is a tendancy that those with more servere cases will be more active here in the support group - the folks with nothing new to report are out there leading their lives.
As long as you keep tabs on things, and steer clear of major known carcinogens (that CAN cause a snowball of problems), I'd think you can reasonably expect a normal life span... Hey, I have family history of diabetes, hypertension and heart disease, and I'm planning on seeing 90!
Let it be a good oportunity to tune into what you want from life anyway - we all can do with an occasional revaluation of our priorities, but I suspect it might be premature to plan extensively for an early end.
Wishing you the best of luck and health.

• Reply
• Report post

• By joyceg98
• Posted January 24, 2008 at 3:11 pm

I once attended a seminar where they warned us all against establishing "expectations".

"Expectations are a recipe for disappointment," they said.

If you "expect" that your son will get into Oxford, you could be significantly disappointed. If you "expect" your daughter will marry a prince, you could be disappointed.

No human being (with or without VHL) can "expect to live to a normal age in relatively good health."

None of us has a guarantee on tomorrow. People with relatively perfect genes also ski off the wrong side of the mountain or get involved in accidents or terrorist attacks.

Each of us does what we can, strutting along to the best of our ability, and hoping that life remains reasonably stable and disaster doesn't strike.

Life holds surprises for everyone. If we try to look out too far, if we set "expectations", then we are setting ourselves up for disappointment. We may buy the perfect house, at the perfect mortgage level, and make a beautiful garden -- then get a terrific job offer in another city and have to move. We could be disappointed that we have to leave this house and garden, but excited about the prospect of the new opportunity.

All any of us can do is to make sensible plans, take reasonable precautions, and then go forth and LIVE and HAVE FUN! Keep up with your scans, and handle VHL things as necessary, but don't let yourself get caught up too much in the soap-opera of it all. Keep it in a small proportion of your life, and get on with the REAL stuff in life -- friends, family, love, and fun.

Obviously if you have deficits you will need to integrate those into your planning. You can't "expect" that your vision will come back, you have to acknowledge what no longer works, and figure out how to keep doing what you love to do, now in somewhat different ways.

But on the other hand, if you have good vsion now, you should not "expect" that your vision will degrade. Be optimistic, while not ignoring reality. Don't plan for disaster; work to avoid it if possible.

Life is what happens while you're making other plans . . .

Don't miss out on TODAY by focusing too much on TOMORROW.

I just spent the weeked with a VHL friend who is 52. She has had several surgeries and has some mobility issues, but she is bright, funny, has a wonderful husband, an adorable little dog, and they are hosting an exchange student this year. Her mother (who had VHL) recently passed away at the age of 73. She has a slightly younger sister with VHL who has had only one surgery.

So what's "normal" in VHL? There is no "normal". It's a combination of the luck of the draw on your entire genome (not just the VHL gene, but other factors too), and the work that you and your doctors accomplish in keeping your core stamina strong (take vitamins, don't smoke), managing your stress, and monitoring and treating any health issues as they arise.

I'd say, Plan for a nice long life, so when you get to be 70-something you will still be living in comfort and can afford to take a cruise.

And help raise money for research, to make sure that if or when you have a problem in the years ahead, there is as good an answer for you as possible -- perhaps a nice pill to prevent any future tumors. Wouldn't that be nice?

Best wishes,
Joyce

• Reply
• Report post

• By lpd
• Posted January 24, 2008 at 5:58 pm

Simon and all,
Joyce always is very positive- just what we all need! Especially me sometimes- it is so easy for negative thoughts to invade! What you say is so true- we dont know what tomorrow will bring -be thankful for today! (With or without VHL)

• Reply
• Report post

• By beccaloo
• Posted January 25, 2008 at 3:11 pm

Welcome Simon!!

Yes, Joyce is always very positive and she's also got a wealth of information, Simon. She's right in that all of our experiences are different. I'm not going to go into my whole story b/c I tend to write really long replies and I'm trying to stop doing that!

I wanted to say you've made a great step in finding this website and submitting a question. I didn't find this place until about 2 maybe 3 years ago and my whole saga started back in '00/'01. I do want to give you a few "nuggets" of info that might hopefully help you. And they are in no particular order.

1. Get yourself over to the VHL Family Alliance website. I believe the url is: www.vhlfa.org. You can get a lot of support over there and I strongly recommend signing up for the newsletter. I don't know if it's there or not, but you can also request a sort of "Welcome to the World of VHL" packet that's got a vhl handbook, newsletter, and some other very valuable literature.

2. Keep good records of the dates of your doctor appointments and who and what they were for. I also make sure whenever I see a doc., I grab one of their business cards that I keep either in my purse (the "regular" docs I see) or in a file (the docs I've seen and may or may not ever see again.)

3. Whenever you have any tests like MRI's or CT's, ALWAYS request your own copy. I've never had to pay for my own copy. There is one place I go regularly that only issues 1 free copy per patient. I make sure that the doc ordering the scan knows that I'll be getting the films and bring them with me when I come in to review the results. This was a HUGE help when "The Saga" began b/c I actually should have been diagnosed back in '94 when I had a surgery to remove a tumor on my brain stem the size of a walnut. The pathology lab there messed up and I went on down the road of life symptom-free until '00 when my whold world unravelled. BUT, my mom and dad (God bless 'em!!) had kept the MRI"s from back then so when The Saga began in '00, I had those films. AND NEVER LET YOUR DOC KEEP THEM UNLESS YOU REALLY REALLY TRUST HIM/HER! I've only left my scans one time and I made sure to speak with my urologist's nurse to let her know he was keeping them and needed to get them back to me in 2 weeks, MAX. I love my urologist to death, but even he said, "Tell Jenny I have these b/c I'll never remember to send them, back to you!"

4. Take someone with you when you go see the doc. There is so much information to remember and talk about that I know I just can't remember it all. Also, I tend not to realize or remember things that have happened but my husband remembers every single time I've missed a dose of one of my meds, or that last thursday I was really moody, etc. Also, and I know that only a girl/boyfriend, really close friend, fiance(e), spouse, will be able to share stuff like how you sleep. I hiccup. It's weird, I know, but I get the hiccups all the time. The neurologists (I have 2 - long story) and I (b/c I've been blessed with a good education and also really love biology and anatomy) believe it's from the 2, no, 3 times I've been "poked in the brain stem". Anyway, about 3 or 4 years ago my husband and I were at an appointkment and when the doc asked about the hiccuping, I said, "Yes, I get 'em all the time. So much so that I don't even notice half the time." My husband added, much to my surprise, "She even hiccups in her sleep!"

I've got a few more, but I actually have to go to a doctor's apointment, so I'll probably add a few more although there are others who probably will write 'em down before I get back online!

And in case I didn't say it: Welcome and you're going to be okay, Simon. Yes, you have an illness, but it's not a death sentence by any means! Look at it like this: Now you know what you have and you can educate yourself and take care of business. You're not flying blind anymore. Believe it or not, it's kind of a blessing to be diagnosed b/c I know for me, it answered a TON of questions for not only me, but my entire family. Okay...seriously...I better get going!!

Rebecca.

• Reply
• Report post

• By spin1
• Posted January 26, 2008 at 6:33 am

thanks simon but dont feel sorry i no thats easy for me t say i dont have vhl but selena was the hardest person ive ever known and even though things wernt easy we had 19 years together and i wouldnt change that for the world.
selenas vhl was wide spread head and abdomen but doctors who looked after her especially an excellent neuro surgen called mr towns were always amazed at how she recoverd so quickly t be honest she didnt like being in hospital so would get out as fast as she could she was a pain in the arse at home but happier LOL.
And while im here thanks joyce your info about pancreas is going t be helpfull hopefully for improveing screening and helping others with vhl your attitude towards vhl reminds me so much of selenas.
I can only back up the advice from joyce just take it as it comes do the things u want t do and keep at the doctors and u will live a long and full life.
As ive said t funmadjoker if u need a chat about it drop me aline some how and ill see if i can help with owt

• Reply
• Report post

• By davidw
• Posted March 4, 2008 at 4:50 pm

Hy my name is Karen i was diagnosed with V H L ten years ago. My symptoms have not been as bad as yours but my mothers has. She has had three tumours removed from her brain and two left. She has lost half a kidney to a cancerous tumour and will need surgary again soon on the same kidney and this will leave her with one kidney. A tumour was removed from her spine and her pancreas is callcified. My daughter also has V H L she was diagnosed at four. She was six weeks old when i nearly lost my mother to her first brain tumour and that was the first we new about the V H L in the family. I have brought my daughter up to know about the condition and at first it was hard to be positive. But i want her to know that life can be just as good with V H L. I have studied for two years at college and have gained an H N C in social care along with an S V Q 3 in social care. My advice is although the condition is unpredictable you control it as much as possable and keep your life going the way you want it to and when things happen take it in get the treatment and after recovery go back to living your life. Nine of my family have V H L and we all live the lifes we want and need. Talking about your fears and about being down helps dont bottle it up but also life can be just as good it's just individuals with V H L need time out a bit more sometimes than others. Hope this helps to install some posativity onto a bleak subject but life can still be bright.

• Reply
• Report post

• By MARYWEETMAN
• Posted May 7, 2008 at 10:08 am

Hello Simon

My name is Mary and I run the VHLCG hear in the UK. At our recent conference in Manchester I met a family who I think live quite close to you, and might be helpful to you as a link, as they have experienced many of the uncertainties that you have.

If you contact me by e-mail<maryweetman@waitrose.com> or on 01204-886112 perhaps I may be able to help.

Best wishes

Mary.

• Reply
• Report post

Add to the discussion