Proper Leader of Treatment Team for Patient with Brain Tumors/Seizures

Hello everyone.
I'm new here and this is my first post. I'm the daughter of a 67 year old woman with VHL. It seems that her symptoms, mainly seizures, are getting worse. At the beginning of the year she was in the process of switching from Secure Horizons supplemental insurance to SCAN (we are in Southern California). Her treatment team had changed - she wanted Drs closer to where she lives. She overall likes SCAN, and really likes her primary care doc. However, I am feeling uneasy about the referral to a neurologist/psychiatrist as the head of her neuro care. She has nine brain tumors, btw, a couple that are on her brain stem. She was taking Trilyptal for the seizures, and the new neurologist has her on Lyrica as well. Just prior to her first visit to the neurologist, she had a couple of pretty bad seizures - confusion, slurring, poor motor coordination, feeling very hot, unable to answer simple questions like what is her birthday, etc. She has now been on the Lyrica for 3 weeks, with increases in dosage due to these seizures. She's now had 2 that caused a lapse of consciousness (which never happened before). She previously had a neurosurgeon in charge of her care (very highly regarded in his area with extensive experience with gamma knife and other techs). I'm feeling that she needs to go back to this doc - I just don't feel that the new neuro/psych is the person for the job. To his credit, he did refer my mom to a seizure specialist - but this is just a symptom, and not necessarily dealing with brain structure and function.

Her increase in the number and severity of her seizures are greatly concerning us. Her previous neurosurgeon said that the tumors are not big enough to warrant surgery. But how long do we need to wait? She now can no longer drive, and I'm even concerned about her taking the senior community's bus line. I hate that her independence is being stripped. Even worse, I'm afraid that one morning she will not wake up!

Has anyone heard of Lyrica being used to manage seizures? How often should she be seen by a neurosurgeon, or is it a as need basis (she was going annually)?

I'm now getting VERY involved with her medical care due to the severity, and her increased difficulty in remembering and managing facts.

Any help or support is greatly appreciated.

Jackie

By dizzybee
Posted February 22, 2009 at 1:12 pm
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My first choice would be the NEUROSURGEON. If he has treated her before and you and she hold him in high regard that is who I would go with.

My neurosurgeon is also awesome and I defer most of my stuff to him as does my neurologist

look at the PDR on line re: Lyrica it is to be "used with caution in people over 65".....can cause severe dizziness, swelling of hands, feet, etc.

www.pdrhealth.com

i tried to take it for autonomic neuropathy and i seriously wanted to kill myself yucky stuff.

Good luck to you and your mom. Make sure she takes you or someone to ALL her appts and that they are able to talk to you about her medical stuff....this is very important (i took care of both my parents). Sometimes they don't want to say something in front of the patient b/c they are elderly and easily frightened, so they might not say anything. Ask if you can speak to the doc privately if you think something is up, but this can backfire as it might anger your mom (esp. if she is very strong willed - my dad was 92 and they acted as though he wasn't in the room and he got really mad).

Best of health to her!! & no stress to you!! Hugs!

PS you also probably need to be checked for VHL and your kids, etc......

look on here for Joyce Graff she is the head of
www.vhl.com
she is joyce98 -- she can get you in touch with a local chapter if you aren't already.

By lgsdaughter
Posted February 22, 2009 at 3:35 pm
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Thank you so much for your reply dizzybee. I feel more and more each day that she needs to go back to her neurosurgeon. I have begun to go with her to the neuro/seizure specialist docs. She has always been bad with facts and information, and is especially so now. Would I need to have her authorize the doctors to speak to me if needed? It seems that I would.

The Lyrica has not been helpful. It has been 4 weeks and she has had more seizures than ever. And she did experience dizziness when taking it at the same time as her Trilyptal.

This has been a stressful time, as I am living with her now. It seems that her VHL is always present and is always the focus. Certainly is a change and challenge for me, and I find myself having to be extra patient with her and more vigilant over her than ever. Biggest thing is for her not to lose her independence now that she is not able to drive due to the seizures. She's becoming more dependent on me, and I'm trying to balance that need with her dignity and independence, and my need to set boundaries and give her optimum challenge to figure things out when she can.

I know I need to get tested, and will. I've just had so much on my plate, even before this change in her condition, that to find out that I have the disorder and that I would possibly be looking at my own future in my mom's current condition - well, I think that would set me over the edge. I can't afford that right now with taking care of her and myself.

By katmine
Posted February 22, 2009 at 6:12 pm
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I have had a seizure disorder since I was 22 caused by a vhl brain tumor. The MRIs didn't detect the tumor until I was 51. Even after removing the tumor I still had a seizure disorder. I've taken dilantin every day for the last 33 years. It works very well. There are other meds as well that might work for her seizures. I wish you all the best.

By joyceg98
Posted February 23, 2009 at 4:05 pm
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Seems to me the first order of business is to determine whether this is a seizure disorder left over from a prior surgery (which needs to be managed with medication), or a NEW SYMPTOM that is telling you there is a tumor that needs attention.

Seems like time for a second opinion, and/or a new scan, or even sending the scans for review to another neurosurgeon with greater experience with VHL.

It's not about size, it's about what the tumor is pushing on. It can be very small and just "tickling" the vomit center, and you can keep nothing down. The tumor may be small, but that is not a tenable situation. So we have to listen to the symptoms, not just look at the scans.

Another thing that happens in VHL is that the tumor "recruits fluid" and sometimes forms an area of fluid congestion around the tumor, like a sponge soaks up water. So while the tumor is small, the area of congestion is creating more pressure than it may seem on the scan.

And of course the tumor may form a cyst, which can only be seen on a picture WITH CONTRAST. Without contrast, they are almost impossible to see. The cyst creates even more bulk, putting more pressure on the delicate structures of the brain.

All this pressure on the wrong spot can certainly provoke seizures. While medication might help for a while, if it's a matter of pressure building, there will come a time when it is no longer manageable with medication. So no matter what size is seen on the scan, they need to evaluate whether the problem is pressure, and whether it might be time to consider surgery.

Anyone with VHL who already has symptoms is NOT a candidate for stereotactic radiosurgery. Please be sure to read http://vhl.org/stereo which explains why. There is a list of Questions to Ask Your Doctor. If you are thinking about radiosurgery, be sure to go through that list with the doctor. If you go through the entire list and you and your doctor still feel that stereotactic radiosurgery would be good, then go for it. But just in what you have said above, I would think you have already ruled out stereotactic radiosurgery as an alternative.

Brain surgery always sounds scary, but it's actually a great deal easier on the patient than abdominal surgery. If you have the right team and the right plan, even a 67-year-old lady can do extremely well. Be sure to look at all the alternatives, and choose the best choice among those alternatives.

All best wishes,
Joyce

By lgsdaughter
Posted February 23, 2009 at 5:28 pm
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Thank you kminer for your input. I can't imagine what it must have been like to find out the real cause of your seizures after all those years! I will keep the idea of dilantin in my mind.

Joyce -

Thank you for this information. My mother has never had surgery before. She has 9 tumors, one on the brain stem, that have been symptomatic - which ones are causing what, I don't know. The previous neurosurgeon said that they were not big enough to do SR. I'm beginning to think we have wasted valuable time to consider something else to temporarily take care of the tumors. And now the seizure management treatment is not even managing the seizures. So yes, either the new med is having adverse affects, or the mass is pressing on brain structures causing the increase in number of, and change in type of seizures.

A number of the tumors are in the subcortical parts of the brain. Is brain surgery even possible with these tumors without creating damage to the other structures?

Do you happen to have any information on a neurosurgeon in the Southern California area (particularly in Orange County) with experience with VHL? I want my mom to go back to the previous neurosurgeon, but would also like to have another doc for a second opinion.

Thanks again,
Jackie

By trvl1wrld
Posted February 24, 2009 at 2:00 pm
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HI,
I felt the need to respond to your situation. I also take care of my Mom. She is also on SCAN but in Arizona. I have one bit of advice, seeing that you are new to working with these organizations. It is VERY important that you contact and discuss your Mom's situation with her SCAN case manager. You can go in circles with the doctors because they usually aren't aware of this special unique disease. Your Mom can just be randomly assigned to a docotr that is in "the program" and this may not be the best fit for her treatment. By talking to her case worker, you will make "the system" aware of her special needs and the case worker can help you get to the proper channels for your Mom's treatment. This is if your Mom has a good caring qualified case worker. If you don't get results request a consult with a SCAN supervisor. As with all Federal programs, things get lost in the shuffle of paper work. Your Mom really needs you to help her through the shuffle and God Bless you for getting involved in her care. Good Luck.
One who is walking in your shoes.

By joyceg98
Posted February 24, 2009 at 6:59 pm
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The only one who can answer your question about the dangers of surgery is a properly qualified neurosurgeon, and as others have said, be sure to get more than one opinion as surgeons' experience with VHL varies widely.

Dr. Robert Spetzler at Barrow Neurological Institute in Phoenix is near LA and has had a number of very good outcomes from tricky VHL surgeries. There is also a new clinical care center about to be announced at UCLA. The neurosurgeons on that team are:

Physicians name: Marvin Bergsneider, MD and Antonio DeSalles, MD PhD
Mailing address: UCLA Neurosurgery, Semel 18-246, Los Angeles, CA 90095
Telephone: 310 206 4100
Fax: 310 825 7245
E-mail: mbergsneider@mednet.ucla.edu

Clearly you need to sit down with a doctor (or two or three) and evaluate what is going on, and what options you may have. Hopefully there will be some good options available to choose from. Then you will need to discuss the risks and benefits of whatever the procedure might be.

Here we can only speculate.

All best wishes,
Joyce

By joyceg98
Posted February 26, 2009 at 5:33 pm
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One of the basic requirements for a clinical care center is that it provide coordinate care for all the aspects of VHL. So yes, it will deal with all VHL issues.

On the VHL website, under Managing Your Health, find Clinical Care Centers. There are participating centers all over the world.

Cheers,
Joyce

By lgsdaughter
Posted June 27, 2009 at 8:42 pm
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Thanks all for your responses.

I'm sorry that I dropped off the board for a bit. A little bit of an update:

Mom has been seizure free since the end of February. It turns out that the Trilyptal lowered her sodium levels to such an extent as to actually CAUSE seizures. Yes her seizure med caused the seizures! Luckily her new primary care doc caught it, and we now have her off the Trilyptal and Lyrica, and on Dilantin. So far so good.

We will definitely be looking into the UCLA CCC. We're very excited about this.

And we just got back from the meeting in Anaheim. It was just wonderful to meet everyone, and take all the interesting information offered. Good job to all involved!!!

Jackie

By joyceg98
Posted June 28, 2009 at 8:19 pm
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Thank you, Jackie! It was great to meet you.

For everyone else, the AV team delivered the videos from the meeting today, and I will put them up on the internet in the next several days, so you will get to share in the great presentations.

But as Jackie can attest, you missed meeting some wonderful people and getting some great hugs.

Best to all,
Joyce

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