Scared & need a friend...

[katherine]

I've been on this site here and there for the past two years. I've just past my two year mark at the end of Feb. My NS (in Seattle,WA at UWMC Dr. Trent Tredway) Said I was looking great from the outside. I've recently lost almost 35 lbs and at the apt I was walking pretty well. But for the second year in a row the little hospital (I live in a small town in N. Idaho and work for this hospital) didn't sent the MRI films. Luck itself my PCP was calling to the NS floor the same day of my Apt and was able to speak to Tredway about how I looked. My PCP overnighted the MRI films to him. I have not heard d from him yet and am very concerned. For the past two weeks a lot of my symptoms have been changing. I've had three falls in the past week, my tone has been worse, muscle spasms are more frequent and sever, and my walking (I have right side weakness, drop foot, and sever hyper extend my right knee to name a few) has been very rigid, stiff, and painful. Weekly I see both massage therapy and acupuncture. Both they and my coworkers have noted a difference in my energy (though I've been sleeping 8-12 hours a night) and my symptoms listed above. I've emailed Tredway and have not heard anything. My PCP doesn't know what to do and only offers another MRI which is 600 dollars out of pocket for me, mind you I just had one on Feb 1. So anyways I'm scared to what may be going on. The board seems to be the only one that really understand the pain, the symptoms, the loss of energy, and everything else that goes along with a sct. My sct is different because I have a supependymoma (spelled wrong) T4-11 that is inoperable. Its inside the dura and wrapped around the actual spinal cord. My MRI doesn't show the tumor but only shows atrophy. My NS didn't even know it was a tumor until he opened my dura and out bloomed my tumor. He tried to get some out (about 1/2 a centimeter) but the monitors indicated too much damage and they stopped. I've thought about a second opinion but to be honest am a bit scared of another surgery. This one was very hard to deal with and am still recovering in a way. Thanks everyone for letting me explain my story and listening. If you guys have any advice that would be great.
Thank you again!
Katherine

[billanschell]

Hi, Katherine:

I think you need to phone Dr. Tredway's office and tell them you need his reading on the MRI right away. It's possible he doesn't check his email. If you're not comfortable making that demanding call, perhaps you could get a friend to do it for you. It sounds like you need feedback right away, and from what I know about Dr. Tredway's reputation, I think he would be in touch if he had received your email.

I had my surgery done by one of Dr. Tredway's fellow neurosurgeons on the UWMC team, and I know that you were in good hands. A second opinion can never hurt, but you were at one of the northwest's top facilities, so it seems unlikely another NS would offer a different prognosis.

Sorry to hear about what you're going through; I hope you're able to get some answers.

--Bill

[vickie]

Greetings,
I too have a tumor that is inoperable and have had surgery twice to get it out to no avail. So I know (as does everyone else on this site) how scary it is and how much we hate the thought of other sugeries, In truth if this doc can't get it out without irreversable damage chances are they won't try another surgery. Saying that you need to know what is going on. I would go for the second opinion if it makes you feel better, it never hurts and the docs understand and most if they are good suggest it. When I was in my car wreck in 85 and at harbor view I was in good hands, In truth I think some of the best docs in the country live in the northwest
I've learned that most doctors are so busy and overworked that they may overlook emails until they have a minute and he may not have had one, but two weeks to wait is to long when you don't know what is going on. So do as Bill says and call, I'll be the first to admit I'm the biggest chicken when it comes to talking to doctors, and you would think after all these years of being around them I would be braver but I'm not so I know how you feel on that one. I've learned that I just take a deep breath, let my hands shake and repeat "they work for me, they work for me." Okay that doesn't work much but by then they have answered the phone and I have to talk to them If it makes it easier start a list of what is changing, how you are feeling etc. have it in front of you when you talk to him so you won't forget anything.
I know it seems for me that every week something is changing, spreading, hurting more, legs getting weaker and more numb, that the loss of my legs is coming closer every week but when I wake up in the morning and I can still move them it's a good day and I can make it through, you have look on the good side of things even when you feel the worst you have ever felt, it's easier said than done I know and their are days, weeks, months that I forget that but I try not to.
Let us know when you get some answers someone is always here to listen, and good luck!!
Vickie

[bethann]

Katherine,

I think it would not hurt to get a copy of your last MRI and send it to another doctor. There are many on here that have done that! I myself sent my MRI to Dr Jallo (he seems to be the doctor with the most experience as far as SCT is concerned) for his opinion. Now no Doctor is perfect but the more you know about what is going on with your body the better you are able to take care of yourself!
Every time I go for an MRI I always pick up a copy of the report. That way when I talk to my dr I have an idea (I do not understand everything in the reports but I get the basics) of what the dr is going to say.

Beth

[tracy2001]

Katherine,

Your story and mine are very similar. I have a subependymoma C3-T1, with left sided weakness, bad hyper-extension in my left leg and my left arm is pretty much a paper weight. I had partial removal in 2001, but the remaining tumor is still growing. I have resigned to ride this out to its final conclusion as I had 3 opinions saying the same thing, that another surgery will not resolve anything. I highly recommend getting second opinions. My first opinion was with the doctor who did my first surgery at the Mayo clinic. His opinion I take very highly as he did an amazing job the first time has lots of experience and he has seen the inside of my dura first hand. I also had my MRI's and operative reports reviewed by Dr. Jallo. He said the first surgery was very hard and done well. He also said, he would not recommend surgery unless it is a life saving operation. However, I would most likely be a complete quadriplegic after such a surgery. Not one to give up, I was living in Seattle the last 6 years, so I had the NS's there review my case. Without giving them any info from the other doctors, they came to the same conclusion based upon their own set of MRI's.

I know it is scary, every fall, new ache and symptom; I feel like my time with my family is getting less. My tumor is high enough to eventually take my life. I generally force myself to not take any symptom seriously until a symptom persists for at least 2 weeks. It seems sleeping wrong at night can cause me to lose almost all feeling in my body for 2 hours in the morning. Those days are hard with less energy, more pain and fear.

I have to live each day, one day at a time. I don't think about the future -- I'm prepared for it, but I put it out of my mind. If I wake up and can get myself out of bed, then I know yesterday won't be my last day doing that. There have been many things or actions I used to be able to do that have had their last days come and go, but I always have today to be with my family. So I try to find the good in each day. Mind you I'm not always the best company though And often a good day is just having a bowel movement.

I'm not trying to scare you, your tumor is much lower and you will have different problems than mine. I'm just trying to say you are not alone. We do understand your pain, sorrow and fear.

Tracy

P.S. I recommend getting as many opinions as you need. Dr Jallo is very nice, he will often review MRI's symptoms and call you or email you back. He usually does not charge. Not often you get a world renowned surgeon to do that. Also, be aware that not all doctors take quality of life into the measure of successful treatment.

[katherine]

Thank you guys. Its always nice to know there are others out there that understand exactly whats going on. I have called and sent another email to the NS. I've also asked for my PCP to try to get a hold of him too. Still no word from him. My boyfriend has a theory about whats going on. He's a Phd student and has been on this ride with me since the start....He has many theories that some are true....while others are just a funny thought! He thinks all my new symptoms are because of fatigue. Its a hit and miss with my sleeping patterns. I don't think I need sleeping meds, but when I sleep I don't feel rested. If that makes any sense. I know my body needs more sleep then the average 26 year old but I do the best I can. Fatigue plays a big portion of things at many different times, just never sure when a symptom is from the tumor or not. It took me so long to find a doctor that would listen to me before the tumor was dx, that sometimes I think I'm going crazy with the other symptoms that come up. I'm trying to take the advice that I'm reading on here about thinking positive and such. Its a challenge to change the thinking pattern and not focus on the tumor. The tumor, pain, weakness, etc plays such a big role in my life that its a challenge not to think about it or what not. I've been going to counseling to help with this and just the fact of accepting the whole change of life. She's really good because she deals with medical counseling. Such a surprise in the small town in Idaho! She understand a lot that I'm dealing with, but not all of it. Anyways I wanted to say thank you for you all that posted. Reminds me that I'm not alone.

[tc]

Hi, Katherine. I can relate to your statement
" . . . just never sure when a symptom is from the tumor or not."
I am still in the "watch and wait" mode, so I am monitoring my symptoms and watching for changes. That drives me crazy, because my symptoms have varied from day to day, since this tumor was discovered June 2007. When I tell doctors my symptoms, I feel like I sound like an idiot or hypochondriac. For example, my GP last July said my foot and ankle problems couldn't be from the tumor, because cervical tumors don't cause leg and foot problems. WRONG! Currently, I am seeing a pain management doc who wants to do radiofrequency lesioning to ease my neck pain, because she thinks the pain is due to arthritis instead of the tumor. I have no idea if this procedure will help the pain, if it is truly caused by the tumor (which I think is the true cause of the pain). Anyway, I sympathize with you and your ever-changing symptoms!
Teresa

[tracy2001]

Hi Katherine,

Sounds like your having a better day. I don't think I stop thinking about my tumor for more than an hour a day. For me, acceptance means I accept the fact I have it -- I try not to fight having it. I think of it like having brown eyes. I have brown ones, at times especially as a kid I wanted green or blue ones. But of course I have what I have, so I have to just accept it.

I really like the Serenity prayer -- I'm not trying to convert anyone, you can change the first 8 words with "give me the serenity to accept" : (this is the original quote according to here: en.wikipedia.org/wiki/Serenity_Prayer )

"God, give us grace to accept with serenity the things that cannot be changed, courage to change the things that should be changed, and the wisdom to distinguish the one from the other."

There are many versions of this out there, but I try to model my "acceptance" of this tumor and it's consequences after the idea expressed -- accept what I can't change, change what I should, hopefully know the difference. But I don't think I could ever stop thinking about my tumor. I thought about naming my tumor, than I could say things like "Betsy, made me fall" or "Betsy, kept me in bed all day." But, I would want to name it a girl name and my wife wouldn't want another woman having that much say over what I do. LOL

[Joel]

Hello
Wow, you've lost so much wieght you almost look like a little puppy! And get some clothes on!
OK, seriously, it's time to list your options with Treadway or someone else too, for that matter.
1) do nothing; 2) more surgery (partial/full); 3)? radiation? chemo? Gamma knife?
I would try to get a handle on each option and their likely outcomes, then go with what looks the most promising. I know, it is easy to say. Maybe you've already done this?
Joel

[gatorshime]

Katherine,
Did you try to contact Dr. Jallo? When I was having some hard times and needed another opinion I sent Dr. Jallo some films and he gave me an honest answer of what he would recommend and what he could do. He probably does as many if not more SCT surgeries than any other NS so, he's got the experience and probably has seen something similar to yours. He and his mentor Fred Epstein ( who passed away not to long ago ) have done things that others have said cant be done. My prayers will be with you.

Scott