On top of all else, now a brain tumor!

[chrisb]

Hi Dear RLS Folks,

I've been away from the forum for so long! My RLS was, incredibly, under control for a long time - Oxycontin was my savior. Unfortunately the RLS has started to get bad again. We've had to increase the Oxy, which I hate to do, but I hate the pain more.

Well, about a month ago we found out that I have a brain tumor. It feels like the world has turned upsidedown Good news is that it appears that the tumor is benign, we think at this point. Bad news is that it is in a VERY bad spot, at the base of my skull. Good news is that at this point I have very few symptoms -- some thumping sounds in my left ear, some electrical zitzing feelings in my head, a very sore throat, and a little dizzy sometimes, not bad though.

The reason I'm writing (besides looking for sympathy, I'm not proud!), is because my regular doctor had decided to try me on Requip again. I had tried it before, with no help, so we just stayed with the Oxy. But with the RLS getting so bad, he thought the Requip might help. The weird thing is that Requip doesn't seem to do anything at all to help my RLS, but it does appear to aggravate the symptoms from the tumor! How weird is that?!?!

So now it appears that the tumor is making the RLS worse, and Requip makes the tumor worse. Talk about rock and hard place! I have been dealing with a doctor who is very hesitant about increasing the Oxy, but he went on vacation, and his replacement was very sympathetic and agreed to increase my dosage, AND leave a second script on my chart so I always know that I can get my medicine when I need it. What a relief. It has been horrible knowing that my sanity and really my life depends on the medication, and I come within hours of being out of it, dreading the day when I can't get a refill on time.

I'm sorry to ramble on so much. There's just been so much going on, and I guess I need some TLC. Hope everyone is well, and hope to hear from you soon.

Chris

[sugbrendas]

chris,i'm so very sorry about your tumor. I'm just returning also after being gone for awhile b/c i've been under control.
What are they going to do for your tumor. When i was at Hopkins i saw a advertisement for some kind of cold laser treatment. It's not supposed to cause any damage to good tissue..
Anyway
I don't understand why Doctors keep pushing the same drugs that never worked before. My Dr's pushed and pushed for the Parkinson's,i pushed back b/c i had serious side effects from them.

I'm not a Dr but have you thought about Klonopin,i mean it does help with my RLS and is prescribed for siezures..Thats in the brain.Just wondering..

((hugs))
Brenda

[Hos]

Sorry to hear this news brother. Being a positive person, I am glad that it is benign and thankful your regular doctor is away so the pain med can be increased. One day at a time. I'm sure the neurosurgeon will have a good plan and I suggest asking tons of questions about possible outcomes and such to get your expectations for you and your loved ones prepared though we hope for the best.

The hospital I work at has a few amazing neurosurgeons so keep the Faith since there's other good ones out there! Last, neurologists are also out there who may be more creative then your current doctor and might be able to be more proactive then just trying the same dopamine drug twice.

I'm not a dr. but as Becat said on the RLS video, we deserve to sleep and not be in pain which means lovingly taking control of our body and the pills that enters into them! Again, stay strong and let me know if you wish to chat.

[jan3213]

Chris

I'm so sorry to hear the news about your brain tumor, but am thankful it is benign. Hopefully, you'll get some relief soon. I am very glad that your doctor's replacement sees the big picture and has agreed to give you the medication that helps you.

Please keep us informed. Take care and know that we care!

Jan

[tazzer]

Chris,

That so sux about the tumor, i am full of sympathy and give it all to ya! I am glad it's benign.

I know I am not a doctor and I'm not going to put all my thoughts on what you said about the tumor and how it acts with the requip, but it's just possible if you can get the right doc, they may can learn something from it, meaning since RLS starts in our brain, maybe why where your tumor is located is the reason the requip is reacting negatively. Like I said that is just my ramblings. I read too much! and know just enough to be dangerous!!!

I too, am on the same pain med, and i am glad i have an understanding doc . Wishing you all the luck in the world on getting this tumor thing fixed.

dee

[chrisb]

Hi All!

Thanks so much for all of your thoughts. It really helps! We went to see a big shot neurosurgeon, who was wonderful, but unfortunately couldn't handle this tumor because of its location. He sent me to a super specialist who deals with skull-base tumors and we saw him this past Tuesday. He did a PET scan. He is leaning toward doing a biopsy, but his partner thinks we might be able to wait for 3 months to see how the thing progresses. The yucky thing about this damn tumor is that because of its location, they have to go through your face to reach it. The biopsy would go through my nose! Don't ask me how they get that to work! In some situations they remove facial bones to get at the tumor. I kind of like my face the way it is, so I don't want it rearranged unless it's the last resort. We're waiting to hear the results from the PET scan. If the tumor doesn't look active, we might wait 3 months and get another scan at that point.

The first neurosurgeon is a specialist with "Cyber Knife" radiation, which is the newest method that precisely locates the tumor and spares good tissue. The "special-specialist" didn't seem to think this was a good idea, but we'll see how he feels when we get the scan back.

Brenda, thanks so much for suggesting the Klonopin. I had forgotten about this med, but it seems like it might be the perfect thing for this situation. Although none of the docs has mentioned it (we really haven't had time to talk everything out yet), I have been worried about the possibility of seizures. This might just help two problems! Thanks much!

I really wondered why the tumor would aggravate the RLS, and wondered more why Requip would make the symptoms worse. It surely seems as though something about this thing's location or behavior is affecting my RLS. I so wish this situation might raise some questions about the relationship of the tumor, its location, and the RLS. I wanted to donate my brain for research and thought this tumor would ruin any chance that it might be useful, but maybe this unique situation could answer some questions. But that's many years in the future!

Lots of love to everybody, and I'll keep in touch to let you know if we come up with anything more on the RLS.

Chris

[jan3213]

Chris

Thank you so much for letting us know what's been going on. God bless you---

I hope you find a solution to all of this.

Jan

[sugbrendas]

Hey Cris,
You know i almost forgot. I have all of these weird white areas on my brain, there were several possible dx's,bottom line is we still don't know if it's MS or what.They say if it's MS it's the early stages.
I know sometimes i can't remember really good friends names and my old dog before she died.I had to ask DH what her name was and then i told him it didn't cound right.
The hardest thing for awhile with all of those terrible headaches is i didn't know what was coming from the white areas or was it the RLS. THese headaches lasted soooo long...It can get confusing not to mention scary.
Is it one of those benign tumors that sit behind the eye?

[ViewsAskew]

It sounds like you are getting good advice - seeing lots of docs. Evaluating them and their advice must be tough, though. I hope it all works out well.

Two thoughts on treatment. Methadone and levorphenol are better bets than oxy. I just came back from the RLS conference where they talked about these. So, you may be able to switch to one of these and use once, or twice a day, instead of several times. They will last up to 12 hours if they work. Since oxy works, they should, too.

Second, write to the doc as rlshelp.org. He knows a lot about this stuff and answers people's questions. It would give you an RLS specialist's perspective.

Keep us informed - please

[becat]

Hi Chris ,
My prayers and thoughts are with you, the moon is ours to share, we all share it, take a bit for yourself my dear. Look at it every night knowing we are never far away. When it's cloudy just use your faith, it's still there and we will be too.
Brenda nice to see you around as well! Long time and it is nice to have you both back with us.
Chris, I hope that the super neuro doesn't make light of any of your medical problems right now, thankfully sounds like someone is listening and cares. Yahoo, that is great news. And yes, a rock and a hard place seems easy compared to what your describing. I have to tell you that I have watched a surgery like your talking about, no not my choice, a male in my house had the remote control. LOL Love the makes here, no bashing. Honest.
It was by all means amazing to see how they worked and how well the person responded, so I would be worried too, but it's all doable right now. That is a good thing.

What a relief. It has been horrible knowing that my sanity and really my life depends on the medication, and I come within hours of being out of it, dreading the day when I can't get a refill on time.

I understand that like my heart said it myself. I have been using/trying acupuncture and it does help with the pain a great deal, but sleep is just beyond my reach. I have missed several appts. in the past couple of weeks, with the National Meeting and such, and boy I'm feeling it.
I, like you, wonder from time to time, will I make it til the next refill, and what is even more crazy, I only take what I am allowed to take. So there should be no problem. It's just a wonderful side effect in our own heads and hearts, fear! I'm starting to not like fear, it's a bad thing to harbor, and yet so easy to fall into. Day after day of dealing with something like this stuff.......some days it's easier than others.
You come here hon, come to a place where you know that we do not pity, we support. Openly love and treasure the family we make here. Cry, scream, laugh and cry with us.
We'll be here.
Prayers and hugs and always the moon,
Lynne

[ctravel12]

Hi Chris I just read your post and so sorry to hear about your tumor. Will keep you in my prayers. Please keep us posted on how you are doing.