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BRAIN CYSTS + TUMORS NEED INFORMATION PLEASE

djay41
0 Recommendations

Let me start with saying I am new to the community here, I have lived with someone for 11 years who has vhl, A couple weeks ago he was diagnosed with 2 brain tumors ont he brain stem that both have cysts on them, He has a surgery date of jan. 18th, My question is does anyone know how fast these can grow, because he seems to be having a lot more problems then just 2 weeks ago he has headaches everyday and he says he feels off balance, when he was diagnosed he did not have any symptoms,also i have been trying to read everything i can here in the community to learn about the different things that can come up, but i am running into a lot of words here that i just do not know what they mean medically does anyone know if there is a dictionary here to look them up. thank you for any help you can give me

Explore topics in this discussion:

Cancer Surgery Counseling Brain tumors Physical therapy Ataxia Pain Brain cysts

12 replies

jmathison

My mom and I both have VHL and between us we've had 7 brain surgeries. I feel confident in saying there is no set rate of growth for either the brain tumors themselves or the cysts they produce. With each tumor my mom and I have had the rate of growth and associated symptoms were different.

If you feel the symptoms have changed dramatically, I would advise you to contact the neurosurgeon and tell him/her about the changes. A change in the pressure caused by the tumor, cyst or swelling can cause sudden problems so the surgeon needs to be aware of the recent changes.

More information about all aspects of VHL is available on the VHL Family Alliance web site at http://www.vhl.org.

Best of luck and God bless! Let us know how the surgery turns out.

beccaloo

Fair warning: I do tend to go on and on so please forgive my wordiness should my reply tend to ramble on and on! I can only tell you about my experience with the cyst I had (and may still have? No one's really saying...but I"m symptom free...::shrug::) Anyway, I started feeling dizzy whenever I stood up around October, 2001. I didn't think much of it but it got worse and by November I really had to concentrate on walking straight. At the end of the month I finally went to see my primary care doc (I waited until my now husband was coming out to see me for Thanksgiving - he was in MD and I was in IL, now we're BOTH in IL). I saw her and had an MRI and when the doc looked at the results and saw a cyst on my brain stem she told me to "find a neurologist or neurosurgeon". I did that but by Christmas I was a complete mess. I had an appointment to see the neurosurgeon after the first of the year b/c he didn't have any appointments until then. But it got bad and fast. Christmas Eve my husband (then boyfriend, in case you didn't read that above :o) spent the day calling the primary care doc who'd then call the neurosurgeon as my symptoms worsened. Within a week the room was constantly spinning, whether I was standing or sitting, eyes open or closed. I also was having a great deal of trouble swallowing and I was throwing up on a pretty regular schedule. Relief came when my neurosurgeon put a shunt into the cyst the very first weekday after New Year's Day. The shunt didn't drain into my chest...he described it as kind of like a U-Turn where the fluid drained into the shunt and then emptied into a nearby area where my body just absorbed it all back in.

Yes, it was a terrifying week and a half while I just hung on until the surgery but b/c of the holiday and such, I had to just wait. I guess I could've gone to the emergency room, but my local hospital kind of sucks and I really wanted and liked this particular neurosurgeon. I still see him every other year for check-ups and if I ever have to move I'll miss him b/c he's not only the one who did all of my neurosurgeries (a total of 3 that year, 2002) but he also was the one who was able to diagnose me with having vhl. He's one of my angels.

In other cyst news, I have one on my spinal cord that's been there for literally years. We found it during that year of surgeries in 2002 but it's not really growing. It's close to the smaller end of the measurement recommended for surgery, and so it's just barely growing at all. Yearly MRI's show it to be the same size but if you take the MRI from 02 and the one from this summer you can just barely make out a difference.

So, in answer to your question, my experience w/cysts on my brain stem (the only brain one's I've ever had) they grew pretty rapidly. However, this particular cyst on my spinal cord is just barely changing. My advice is to talk to the neurosurgeon who's doing your husband's surgery and update him of the symptoms b/c he may have to and be able to move up the date if he feels your husband's symptoms are worsening rapidly. I'd also recommend keeping a diary or log of pretty much everything: dates of symptoms, appointments, surgeries, lists of medications and who prescribed them and for what, and a summary text of what the doc's say to you and him about his condition. Also, read the vhl handbook that you can get from the VHL Family Alliance. I'm sure Joyce (this discussion list's monitor and really really nice and helpful lady) can get you a lot of good literature. Arm yourselves b/c vhl is rare and I can't tell you how many doctors, nurses, and interns I had to tell my "story" to b/c they'd never met a person w/vhl. I also recommend trying to find a primary care doc that will work with you and your team of doctors (I have a urologist, 2 neurologists, a gastroenterologist, a general internist, and a primary care doc....oh, and I see the opthamologist every other year.). Before I even scheduled an appointment with my primary care doc I called ahead and spoke to his nurse and told her about my vhl and to explain it to him if she could, or he could call me himself, but I need to know if he's up for the challenge and if not, that's fine and ok but let me know b/c I don't have the time or the patience to see if he's going to "believe that I'm truely NOT ADDICTED to pain meds". (that's why I'm on primary care doc #4 and I'm NEVER leaving him!! LOL)

Whew. Told you I tend to go on and on. I hope this has been helpful. I hope the surgery goes well and your husband's health gets better. From my experience as a married person with vhl, I have to say I don't know how my husband did it. We were headed down that fairy tale yellow brick road and ended up lost on a dark wooded trail where we actually ened up getting married in the hospital while I recovered from kidney surgery. It was unbelievably difficult for him and I will never be able to repay him. He says I'm being silly - I'd do the same for him b/c that's what loving someone is all about...give and take. Having gone through the "Discovery Phase" of learning I have VHL and going through all the tests and doctors and surgeries and radiation treatments and now that pain meds and yearly tests and exams to make sure everything is still okay, I don't want to scare you, but it's not going to be easy but you can do it. My advice to you is that your husband may need a lot (and I mean A LOT) of support and help and he may have to lean on you pretty hard but you can do it. You may have to find an outlet yourself and there may be some tough days but just take it day by day and it'll work out. Know you are not alone and there is always someone around to talk to. I wish you and your family the best and please, if there's anything you think I can help you with, ask. :o) Stay strong.

joyceg98

Jenny has the best advice -- call the neurosurgeon and tell him what symptoms have come up. If the symptoms get worse rapidly, call again, even in the middle of the night. The tumors tend to grow pretty slowly, but the cyst can grow rapidly. So yes, things can change in a short time. If something scary happens (he blacks out or can't move a limb), don't hesitate to go to emergency and have the doctor paged. But it's usually best to be in touch now with the doctor and ask him what to watch for, and what would constitute a reason to come to emergency.

Yes, there's a dictionary at



http://www.vhl.org/handbook



Click on Medical Terms, or use this link to go direct:



http://vhl.org/handbook/vhlhb5.htm#MedTerms



Rather than learn it piecemeal, I would suggest you read the section of the handbook that talks about VHL in the Brain and Spinal Cord. I would be happy to send you a kit of information about VHL that includes the Handbook. Just send an e-mail to director@vhl.org with your postal address -- don't post your address in this list (it's too public), send it privately to my e-mail.



We're here -- post any questions, or feel free to call the Hotline or myself. 800-767-4845, ext 1 for the Hotline, or ext 4 for me in the office.



All best wishes,
Joyce Graff

djay41

I would like to thank everyone who offered advice and I have started to read the dictionary part, we have an appointment tommorrow for a second oponoin, I have lots of questions for the doctor, I have one more question right now if anyone chooses to answer it, I am not being morbid but I need to know if this condition can be fatal, I have asked my friend but he chooses not to answer the question, I amigine it is very difficult for him to think about, again thank you

christytaylor

My name is Christy Taylor.
I would like to suggest to you to do, just as Joyce and another one and my self are telling you. You need to call back to the Dr. and say Hey Dr. there are a few systems starting to come on day and some are day to day may be in and out on a day to day base. As far as learning more, go to www.vhl.org, that is about the best place I would know to tell you for good information, it may not even be bad thing, for the two of you to seek some Genetic Counseling on VHL, just have to find someone in your home town or if you like to travel and can and can afford it, then go to like Duke hospital, NIH, Chapel Hill, and etc.. As far as the growth of these things, no one knows what the growth time is, I've had some that grow slow and some to grow fast over a years time. I guess to it ll depends on the persons bady as well as the location of them. I do want to wish you the best of luck and keep the site posted please with anything you feel you would liketo share with us all.
Thanks,
Christy Taylor

marie3

Hi. I live in Illinois as well. What hospital do your doctors work out of? All my docs are at Northwestern Memorial. I'm always interested in doctors that are familiar with VHL.

Thanks, Marie

irishbookworm

Hi djay,

I am going to keep this short and sweet...try....

Four and a half years ago, I had a VHL related brain tumor removed that had managed to wrap itself around my brain stem three times. I was in surgery for 6 hours. When I came out, well, let's just say not everything was fun and rainbows. However, here I am, 4 and a half years later. I won't lie and say that it was an easy road to recovery. I had to re learn how to do some things. If I'm very tired or flustered, my speech goes RIGHT out the window (if I ever get pulled over late at night, I'm in trouble!). But, again, here I am and the only residual is the occaisional speech issue. Now, that being said, I did NOT want to scare you. I am sure that things will turn out fine and it sounds like they have caught it before it progressed like mine did. I do agree, you need to call your doctor and tell them what's going on right away. If there is anything that VHL patients should know is to call their doctor whenever they have any type of symtoms, even if they may be psychoscematic (sp?). Not sure what part of the country you are in, but, I would recommend contacting the VHL Family Alliance, www.vhl.org. The director, Joyce, is FANTASTIC and she may be able to recommend a doctor or facility. I can't say for sure, but, it would be a good place to start. If you're in the midwest, near Saint Louis, Washington University Scool of Medicine that works with Barnes Hospital is FANTASTIC! Best of luck to you both. Sounds like he has someone that loves and cares for him very much. PLEASE keep us all posted on things!

djay41

Good morning all,

Well we went for the second opioin on thursday last, again really not what we wanted to hear, we were told that he could loose the ability to swallow and would need to be feed threw a tube, that he would be off balance more after the surgery then he is now and that they may or may not change,could have breathing problems , the first doctor did not tell us any off these things, all he said was that he may have some nusea and double vision, the second doctor wants to do an embolisation the day before surgery to help with any access bleeding, well anywho we are sceduled for the 14th of january, also this doctor asked us if we ever visited the dana farber cancer center in boston mass. he said they have a whole section dedicated to vhl, so we will be looking into that also thanks again

marie3

djay,

I don't have any experience with brain tumors or cysts (bet I just jinxed myself), BUT I have been to Mass. General Hospital. Traveled there from Illinois. I had radiation on my optic nerve tumor at the Yachy Building at Mass. General. It is a wonderful place. That's all I wanted to say. Mass. General Hospital is a well known facility all over the U.S. Your mate would be in very good hands there.

Be strong!

Sincerely,
Marie

joyceg98

Let me answer your question head-on. Yes, of course it CAN be fatal. (Life, by the way, is still 100% fatal. None of us is getting out of here alive.)

That said, those of us here have been where you two are now and are still here to tell about it. There are strategies, there are great doctors, and with the good support of friends and partners like you, people with VHL have made some pretty impressive recoveries. It is definitely not time to give up!

You're doing great -- hang in there and keep hope in the forefront. Nonetheless, it is sometimes important to some people to "get their house in order" before major surgery -- I'm one of them. It takes the pressures off my mind so I can focus on getting well. So if he wants to talk about mortality, let him do it, but let him take the lead. If he doesn't want to talk about it, try to respect that as well. A little avoidance here is healthy.

There are two things I would recommend you definitely discuss: health care proxy and tissue banking.

It is always a good idea to have a "living will" or "health care proxy" in place, especially since you are not his spouse. It will give you the right to discuss his case with the doctors while he's in the hospital. Otherwise you will likely get some resistance from the hospital staff, as they are supposed to operate under strict rules of confidentiality. In the case of an adult, the only person who automatically has rights is the legal spouse. All others -- including parents -- can speak in detail with the doctors ONLY with the express permission of the patient. Having a health care proxy document on file with the hospital makes it clear that that permission has been granted, and every nurse will understand that you are okay.

Please also consider depositing surgically removed tissue with the VHL tissue bank, to help the researchers make progress toward a cure. If we all work at this, one of these days there will be a pill for this. Contact bank@vhl.org to get the forms, or simply call 800-222-6374 and ask for the rare disease coordinator, and they will get you started. They will need the name of the surgeon, and the time and place of the surgery, and they can fax you the forms or you can copy them down from the internet at vhl.org/bank.

We're all cheering for you both!

Best wishes,
Joyce

beccaloo

I live in east central Illinois, about an hour from Terre Haute IN, about an hour south of Champaign-Urbana, or about 2 hours east southeast of Springfield. 2 of my dr.'s are in Springfield, both work out of St. John's Hospital. My gastroenterologist is in St.Louis @ Barnes, and my other neurosurgeon is in Peoria; he's the furthest from "home". I also have a local primary care doc who does what I call the day to day stuff and refills my meds, and I have a local gastroenterologist as well. Both of these dr.'s are at Sarah Bush Lincoln Health Center in Mattoon/Charleston in Illinois.

Thank you to all the posters here btw b/c having only recently heard about RFA from my urologist during my last visit about 6 mo's ago, I was intrigued by the discussions and feedback here. Has anyone had this procedure on spinal cord cysts/hemangio's?

And yes, Joyce, we (my gastro'guys and I....hey, that rhymes!) check on Mr.Pancreas every year unless I have some kind of kick of symptoms that we talk about during those yearly checks.

Having just turned 32, I'm sooo glad to hear the positive results from those of you who had this procedure on their kidneys b/c I'm already missing half of the right one and neither Lefty or Righty is looking particularly healthy (meaning BOTH have what I simplistically call "spots") which we (my urologist and I) check on yearly.

So yes, again, any feedback about this procedure and spinal cord "spots"?

Rick

Hello,
I have had 6 Brain tumors and one Brain Stem tumor addressed. Dr. Peter Dempsey @ Lahey Clinic, Burlington, MA performed 2 conventional and one stereotactic radiosurgery on my Brain and Dr. Carlos David, also at Lahey Clinic, Burlington, MA successfuly removed the Brain Stem tumor this last spring. This fall he removed 7 tumors inside my sacral canal. After my brain stem tumor removal, I could not swallow and needed a feeding tube. I have Ataxia on my right arm/hand-a condition where my brain doesn't know where my arm/hand is.

The inability to swallow lasted only a week after I got out of the hospital and is nearly normal now (99%). My arm and hand 8 months later still continues to slowly improve, I would put it at close to 80% and climbing. My legs have suffered nerve damage but they are improving also. I just finished 6 weeks of Physical Therapy and would put them at about 50%. They are continuing to improve also.

The brain stem tumor had grown very large in the couple of months after the MRI and had completely split my brain stem apart at the midline. Dr. David is a specialist with brain stem tumors and if it were not for him, I wouldn't be alive today.

This is a very scary time for you but know that things CAN be good. I would strongly suggest seeing Dr. David @ Lahey Clinic, Burlington, MA. Good luck to you.

Rick

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