NARRATIVES
TALK TO A
ADVICE
Established April 15, 1995
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This is my beautiful 8 year old daughter, Olivia. She is my world. She is the reason I fight this AVM battle every day of my life with everything that I've got. I want her to learn the true meaning of strength, perserverence and faith. Most of all, I want her to be proud of her Mother, and know that she learned those qualities through me.
13 June 2003
Hi. I am a 30 yr old AVM survivor. Just as many of you, I was a happy energetic kid. I wasn't aware there was anything wrong with me until December 1984. That is when my life changed forever.
I was 12 yrs old and just finishing up my 7th grade PE class (we'd been playing basketball). I was on my way to the locker room and out of nowhere I got the most excruciating headache of my life. My head felt like it was going to explode off of my shoulders. My vision blurred, my legs went numb, and down I went. The ambulance was called and I was taken to the ER where my parents were waiting. The doctors there ran a few tests and knew I had hemorrhaged but couldn't figure out where. They told my parents that if I kept bleeding I would not live through the night. Well, needless to say the bleeding stopped on it's own (THANK GOD!)
Over the next 2 weeks I underwent test after test after test. Finally it was discovered that I had an AVM of the cervical spine (C3-C8). My parents were informed that my AVM and it's location were so rare that no one in the United States would touch me with a ten foot pole. They gave us the option of going to Canada or Sweden for treatment. We opted for Canada since it was about a million miles closer.
Once in Canada I met Dr. Alan Fox. And over the next 18 years he would save my life 5 times doing embolizations each time I had a bleed. I bled at age 12, 14, 15, 17, 25, 30. I have several deficits from all the ruptures - all over my body, but my right side is much worse than my left. I wear a brace on my right leg and have very limited use of my right hand - which is really hard because I was right handed most of my life. It's tricky to try and teach yourself to be left handed.
The last bleed I had was in September, 2002. Dr. Fox reccomended that we do no more embolizations for fear of stroke, paralysis, or death. So many of the main "feeders" to the AVM had been blocked already. He said the risks far outweighed the benefits. I was crushed. I am 30 years old, I have a wonderful husband and a "miracle child" my 4 year old daughter Olivia. I call her my miracle because I was strongly advised not to have children because of my condition. Anyway - I was not willing to accept that nothing more could be done. I was not willing to sit back and let that "thing" control my destiny. I was aware that surgery was never an option for me because my AVM grows complexly in and around my spine. So, the search was on.
My husband spent hours on-line searching for any options that might be available to me. Like an answer to our prayers he learned of Stanford Medical Center and a team of doctors there who specialize in radiotactic surgery (radiation) with a machine called the Cyberknife. They specialize in the most difficult, high risk, asymptomatic AVMs. We immediately called them wondering if I might be a candidate for this treatment. They had us send out my latest tests (MRI, CT Scan, Angiogram, Spinal Tap) for their team to study. Two weeks later they called us back and wanted me to come out to California for treatments.
Upon arriving at Stanford I was taken under the wing of Dr. Steven Chang. I had a whole new battery of tests run for them to program into the "robot" (Cyberknife machine). I had 2 screws put into 2 vertebrae in my cervical spine. They would act as pinpoints for the machine to zoom in on and radiate the AVM. I had 3 treatments and after all was said and done Dr. Chang said he was 80% certain that in 3 yrs my AVM would be gone!!! I have to have an MRI done every 6 mo and sent out to them so they can monitor the changes in the AVM. If after 3 yrs it isn't completely gone I will go back for another round of treatments to obliterate the rest. It is possible that I may even regain function in areas where I've lost it.
I feel so fortunate and so blessed. This is something that has haunted me my whole life. The pain, the disabilities, the uncertainties, the years of physical and occupational therapy, the fighting with the government for 2 years before they finally decided I was indeed eligible for Social Security.
However, after my experience at Stanford, I feel I have been given a new lease on life and that God has kept me around for a reason. My goal/dream now is to start a foundation for people like us with rare spine/brain conditions. I have been featured in my local newspaper twice and am trying really hard to get the word out nationally. Our conditions are so rare and treatment it seems is even rarer in a lot of situations. People need to be educated and funding needs to be put in the right places so we and generations after us won't have to go through 6 bleeds, doctors who are uneducated about our conditions, misdiagnoses, procedures that are unnecessary, etc, etc, etc.
Please feel free to contact me with questions/comments. I'd love as much input as I can get.
Update: 13 Aug 2003
Well here's the latest folks...
As many who've corresponded with me know, these past few weeks have
been quite a trying time for me & my family.
I have been experiencing some rather unusual spells where my body gets tingly and hot, my vision blurrs and I see stars, and I have mild to moderate head/neck/back pain that won't go away even after the spell is done. After speaking to many of you I was satisfied that these symptoms were of a serious enough nature that I should contact my Neurosurgeon. I did, and his thoughts were 1. trace bleeding from my AVM 2. Swelling of the spinal cord from Cyberknife stereotactic radiosurgery that I had done this past May 3. My AVM may be starting to shrink, and as it does, new blood flow is opened up into areas of my body where it previously wasn't. Needless to say, he ordered an MRI which I had done yesterday (on my birthday - what a nice surprise ha-ha). I live in Michigan and my Neurosurgeon in California, so it may be a few days until the films are in his hands to evaluate. I'm very anxious to hear his diagnosis. The waiting is sooooooooo hard.
Also, as many of you might already know, my 51 year old Dad has been presenting signs/symptoms of some sort of blockage in the brain. Thankfully he has made a doctors appointment scheduled for next week. I hope and pray the right tests are done to determine the cause of his symptoms, as my family is now led to believe AVM's/Aneurysms quite possibly do run in families.
Furthering our belief that AVM's/Aneurysms run in our family, this past Friday a male relative age 52 on my Father's side of the family dropped dead of a major stroke at the base of his brain. No warning signs, no symptoms, just dead.
I realize this isn't a very uplifting update, but myself and my entire family are quite uneasy right now and need lots of support.
I will update again when I find out the results of my MRI and when we learn what is going on with my Dad. Please keep us in your thoughts and prayers, and as always, feel free to e-mail me anytime with anything you might want to talk about or share. I love you guys - thanks for always being there.
Update: 15 Aug 2003
Hi Everyone. I got my MRI results back today (the interpretation of the local radiologists). First of all, I had thought my AVM was C3-C8. Apparently there is not a C-8, so actually my AVM is C3-T1.
His findings were that there is a difference. In the region of C-5&6 there appears to be possible blood & ischemia. These were NOT the results I was hoping for. However, like I said, this was the interpretation of the local radiologists. I signed a medical release today & the films will be sent to Stanford for my Neurologist to view. His findings will be of more significance to me, as he knows my history & exactly what he's looking for.
Nevertheless, this was a kick in the butt for me. I'm trying very hard to stay optomistic, but todays news is making it a little harder.
I'll update again when I hear from my Neurosurgeon & also when I find anything out about my Dad.
Thanks again for all of your support, kind words, prayers, and love.
Love you guys !!
Update: 19 Aug 2003
Hi Everyone! I have some great news to share. I spoke with my neurosurgeon at Stanford earlier this evening, and his interpretations of my MRI films were so completely different than the radiologist here (Thank God!)
There is NO BLOOD, & NO SIGNS OF ISCHEMIA !! He said he sees some swelling - which is NORMAL. I knew that if I did experience the swelling that it could produce "bleed like" symptoms, however, after the radiologist here told me that my AVM had bled and I showed signs of spinal stroke, I naturally feared the worst about the symptoms I was having.
Anyway, I still feel crummy, but now I know why. Actually, it's a good thing. This sounds strange, but is completely true: in order for the AVM to shrink and eventually obliterate, it first needs to enlarge to some extent (hence the swelling). I am told that this is how this process works. So I am now pretty excited - this means that the treatment is starting to work!!
My neurosurgeons advice to me was to contact my family doctor and find a medication that will help to ease the discomforts, and just ride it out the best I can. He didn't feel that the swelling had reached a point as of yet where it warranted steroids - thank goodness. Hopefully it won't reach that point. Furthermore, he just said to call him immediately if things got any worse. So, I guess I'll feel crummy with a smile on my face for as long as it takes if it means that my treatments are working and I will eventually be RID of this damn thing.
Again, thank you soooooooo much for all of you support, kind words, love and prayers. You guys are great, and a HUGE source of comfort to me.
My Dad goes to the doctor tomorrow regarding the problems he's been having. Please keep him in your prayers as well. I'll update again when I have some news about him.
LOVE YOU GUYS !!!
Update: 27 Aug 2003
Hello Everyone. Well, here is the latest on my Father. He went to our family doctor last week for some disturbing symptoms he's been presenting for quite a long time. Our doctor ordered a cerebral angiogram. Upon arriving for his angiogram, the doctor in charge of performing it told my Dad that he was very suspicious that there in fact was "something" there and that an angiogram is invasive and might disrupt "something". His advice was for my Dad to instead have an MRA. So, he had the MRA last week Friday, and we got the results back yesterday that everything looked normal. I should be overjoyed right? I don't want to be borrowing trouble, but so many of you guys that I've spoken to have told me that you had MRI & MRA's done that also came back "normal", but later, upon having an angiogram, learned that in fact things were NOT normal.
My Dad has an appointment this Friday for a stress test.
I want to be happy and optomistic, but with his symptoms, there has got to be something going on somewhere that isn't right!!! You don't hear your heartbeat in your ears constantly, or have your eyeball bulge out of the socket, or have a constant dull headache, or have no ambition for the things you used to enjoy, or have dizzy spells, or look as white as a sheet, or sweat profusely for no apparent reason, or put sleep as your #1 priority, or have the need to take a blood pressure med & 2 water pill meds if everything is "NORMAL"!!!!!
NOW WHAT!?!? That is what I am sitting here thinking. What if his stress test is "normal" too?
Am I just supposed to sit here and watch him ever so slowly deteriorate because everything looks "normal"?
Like I said, I don't want to borrow trouble, but in my heart of hearts I believe things are NOT "normal". I don't want to see my Dad drop dead at 51 because................oops, we don't know how this could have happened, everything looked so "normal"...................
HELP!!!!!!!!!!!!!!!!!!
As far as my recent problems, I have been perscribed a great pain reliever that helps immensely when I have those frightening "bleed like" spells due to the swelling in my AVM from my Cyberknife treatments. My Neurosurgeon even said I could return to physical and occupational therapy as long as I start out slow. He doesn't think it will irritate anything. That's good news for me. I've missed therapy, believe it or not. :)
Update: 05 Sep 2003
We got the results back from my Dads stress test yesterday...completely normal. I am very happy about this, however, all of his symptoms still persist, and seem to be getting worse as time passes.
My Father is not the type of person to "push the envelope". He has now had a neuroradiologist and a cardiologist tell him that he's the picture of health. I know that he knows, he IS NOT!!
Where are we supposed to go from here? No additional tests are in the works because everything that he has had done thus far (bloodwork, MRA, Stress Test) have shown him to be fit as a fiddle. BIG LAUGH!!!
Like I've said in my earlier updates re my Dad, you don't just have this menagerie of warning signs/symptoms because you're healthy!! He is still so young (51), and I am so scared that whatever is wrong has not been detected in the tests he's had done. But, like I said before, I know my Dad, and he will not push the issue. So what are we, as his family, supposed to do? I worry about him constantly, and am on pins and needles, just waiting for the call that he's dropped over somewhere.
Thoughts, Advice, Comments, PLEASE !!!
As for me, I'm feeling quite a bit better. Learning how to calmly deal with the "bleed like" spells I get from the swelling around my AVM from surgery. Plus I was perscribed a very good pain medication that works really well for me on the residual headaches I get after one of my "spells".
As always, thanks for listening guys! Love and Prayers to you all!!!
Update: 09 Sep 2003
I have some exciting news to share with everyone!!!
As anyone who has read my narrative, "I was a happy energetic kid", knows, my goals for the future are to bring awareness, education, funding, research, development, and treatment options for the fight against AVM/Aneurysm, and other rare brain & spine disorders.
Recently I was contacted by a local reporter, Susan Shaw, of WOODTV8, here in Michigan. She would like to do a story on my life with AVM, my goals for the future, and my Cyberknife treatments at Stanford. She previously interviewed my neurosurgeon from Stanford, Dr. Steven Chang, back in 2001.
I am SO excited about this opportunity! I knew if I kept working hard enough, I would eventually get my foot in the door somewhere to begin the crusade against these silent, debilitating, deadly killers! I hope this is just the beginning!!
The interview will be at the end of Sept or early Oct, and I don't know as of yet when it will air. I will give you more details when I know.
I was just so excited that I had to share this with all of you!!
Thanks always for your prayers, love, and support!! This "family" is a HUGE reason why I feel so strongly about this cause.
Update: 02 Oct 2003
I am now 5 months post Cyberknife surgery. I have had my share of ups and downs as far as side affects from treatment. I AM NOT COMPLAINING !!! I still truly believe the Cyberknife to be my beacon of hope to live an AVM free life someday.
Just wanted to share that when I was recently at my family doctor for a routine check-up/physical/bloodwork, my bloodwork came back showing that my thyroid levels are nearly non-existent (hypothyroid). This explained A LOT of pesky little problems I was having (ie: anxiety, cold temp and feeling cold all the time, dizziness, fatigue, low blood pressure, menstrual problems, muscle/joint aches), but just sluffed off as stress, etc.
My AVM is in/around my spine exactly where the thyroid is in front of the spine, so we're fairly certain that the radiation played some role in messing up my thyroid level.
Apparently hypo and/or hyperthroid are very common disorders among everyone, radiation treatment or not, and very easily treated. All I have to do is take a thyroid supplement medicaton until my levels are within the normal range again.
Like I said, this is very common, but it was of interest to me because my recent treatment probably played a role in messing up my levels. Thought it might be of interest to others who may have similar symptoms, or those who've had Cyber or Gamma knife in the c-spine area.
Also, on a TOTALLY different note: I spoke yesterday with the reporter who will be covering my story on the news. We should be getting together very soon. We were waiting for video and info to arrive in the mail from Accuray and the Cyberknife Society, and it came yesterday, so I think we're just about ready to schedule a "shoot date & time", as she calls it. Wish me luck, and I'll update when I have a date, so those of you who get WOODTV8 can watch! Also, I will try to get copies of the actual interview, when it airs, to download so you can all see!!
Love & Prayers Always!!!
Update: 09 Oct 2003
Hi Everyone!!
Exciting News!!
I had my interview yesterday with Susan Shaw from WOODTV8!!! I think it went very well. I wasn't nearly as nervous as I thought I might be. She is really a very nice person and was easy to talk to.
She tells me it will probably air in about 2 weeks, but she'll give me the exact date far enough in advance so I can let all of you that are in the viewing area know. For those of you not in the viewing area, I will be given a copy of the broadcast that I will download onto the computer so you can see it as well.
I hope this interview is just the beginning of MANY great opportunities for me, and ALL of us to bring about MUCH NEEDED funding for education, research, new treatment options, etc. Rest assured, as long as there is breath in this body, I will fight this fight FOREVER FOR ALL OF US!!!!!!
Wishing you all happiness, peace, prosperity, love and blessings ALWAYS!!
Update: 30 Oct 2003
I had a very rude, thoughtless, and extremely inconsiderate comment made re: myself yesterday. I guess the reason I'd like to share it with the "Family" is just to show how ignorant and completely uneducated some people are. Plus, I KNOW that many other "Family members" will be able to relate to these types of hurtful comments.
The language is vulgar and I WILL NOT type the full word. Everyone will know what the word is.
Yesterday I went to the drugstore to pick up a prescription, and a few odds and ends. I walked past 2 men stocking their supplies onto the shelves (they were not employees of the store, just delivery men). They must've been 35-40 yrs old. As I turned the corner to the next aisle, I heard the one man say to the other "It must suck to be so fu__ed up at such a young age."
Now normally this type of comment would not really get to me. I've lived with my AVM and some disability for 20 years, and I have some pretty tough skin. Usually I would have turned around and confronted them, or simply ignored it. However, after the past couple of weeks, with feeling so poorly from the seizures and other side affects that I've been experiencing from swelling, this comment just really hit me hard. I stood there and cried so hard. Right in the middle of the store, in front of GOD and everybody.
Thankfully an employee that I know happened to be working. She saw me and helped me into their employee breakroom. I sat and talked to her for quite a long time. She knows me and my whole history, so she was very comforting. After I calmed down and felt better I went home.
Anyway, I just wanted to share this with all of you because I know you've "been there", and you know how much it can hurt sometimes. I am not my AVM or my disability. I am Thaye Young, and I don't consider myself to be "fu__ed up".
Thank you for listening and letting me vent my frustration. Sometimes I feel like this "Family", and my Blood Relative Family are the only ones who truly understand what it's like to "be me".
Update: 20 Nov 2003
Hello All,
As some of you may be aware, I posted a question to the "Family" a couple of months ago regarding the anti-seizure medication, Neurontin. I had been having grand mal seizures in my sleep, and this was the medication my Neurosurgeon perscribed to try and stop them.
I've been on the full perscribed dose for over a month now, and while the seizures seem to have lessened in frequency, they do still occur. I contacted my Neurosurgeon about this, and I assumed he would just increase the dose. Boy was I wrong!! He wants me to have an MRI of the brain to make sure we haven't "overlooked anything". I realize this is just a precautionary measure, but it's really got me shook up. I've dealt with this AVM thing in/around my spine for virtually my whole life. As if that's not enough - now they want to check out my brain too ! I've had 3 concussions in my life, and had CAT scans done of my brain before. I realize though, that an AVM or aneurysm most likely would not show up on a CAT scan. I am so scared that he even wants to do this MRI. And even more scared that there might be something wrong.
I am a very strong person, with a great faith in God. I just don't feel very strong right now. I feel like I just had a bomb dropped in my lap. I just needed to share this with you guys. It makes me feel a bit better because I know you, in the "Family", can understand things regarding these AVM/Aneurysm issues, that others cannot. I really need your friendship, love, support, and prayers during this!! Thank you, and I'll let you know what I find out. I have to call and schedule the appointment tomorrow.
Update: 04 Dec 2003
As many of you know, I had a brain MRI done last week to try and determine the cause of the seizures that I've been having, despite taking the anti-seizure medication, Neurontin.
I have gotten the results back. The MRI showed that I have a normal, healthy brain, with correct size, bloodflow, signal changes, etc. This was VERY relieving news !! However, it still does not answer the question as to why the seizures persist.
After speaking with my Neurosurgeon, I was advised to see a seizure specialist. Dr. Chang (my Neurosurgeon), is not completely convinced that the seizures are related to my AVM. He is thinking more along the lines of epilepsy.
span>I was always under the impression that if you had epilepsy it would show up much earlier in life (childhood). There was a period of time when I was 15 years old that I had seizures and was on medication for about a year. We thought at the time that it was a direct cause of the AVM, since I had the seizures in the year prior to having a bleed. After the bleed, I never had another seizure again (that I'm aware of), until just a few months ago.
If anyone has had similar experiences, or could offer some insight or knowledge regarding seizures or Adult Epilepsy, please contact me (rsytdy@altelco.net). I have read a lot of information on epilepsy, and it does seem to fit with what I'm experiencing. I guess I'm just a bit startled and confused as to why it wouldn't have been detected or mentioned until now, at age 31. I'm also wondering if this could possibly be something that I have had for a long time but just never realized it ? Any and all comments would be welcome. Thanks very much !!
Update: 21 Dec 2003
Tuesday, Dec. 16, I went and had an EEG done to try and determine the cause of my seizures. I got the results back yesterday, and guess what? Dr. Chang (my Neurologist) was correct in his assumption...I have epilepsy! I was a bit shocked, to say the least. However, I am VERY glad to now know the reason for this business!
Now I have an appt. on Jan. 8th to see a local seizure disorder/epilepsy specialist. I'm quite excited for this appt. I hope he will change the medication that I am on, because it doesn't seem to be helping or working for me at all.
I was also told by my local family doctor that you can get epilepsy at any time in your life. (I was always under the false assumption that if you were going to be diagnosed, it would be as a child). He also informed me that it is a very easily treatable disease with the proper medication, and that I will have no long-term problems. Once you get it under control with the right meds, it doesn't bother you much anymore. Thank Goodness!
Needless to say, this was one of the VERY BEST Christmas presents I could have asked for! For any of you who have seizures, or have had bouts with them in the past, YOU KNOW how awful they are, and how they just wipe you right out. I'm sooooooo excited to get this under control. Then maybe I won't have to spend every day sore, nauseated, tired, fatigued, and completely exhausted. I'll probably feel like a whole new person!
I hope you ALL have a WONDERFUL and BLESSED Holiday Season. I can't thank you enough for your friendship and endless support and encouragement. You are TRULY some of the VERY BEST friends I've ever had!
Love, Prayers, Peace.
Update: 09 Jan 2004
I TRULY AM SORRY TO HAVE WORRIED YOU ALL WHO HAVE ATTEMPTED TO REMAIN IN TOUCH WITH ME !!! I have really been sick. In and out of ER 3 times over the past week.
It all started the morning of New Years Eve. I had a Grand Mal seizure and woke up underneath my Christmas tree. ( That's one way to get it down, right? ) ( ya gotta laugh at that visual ) - thank God Olivia was not here. So, off to the ER we went.
They switched my seizure med to Dilantin, since the Neurontin was obviously NOT working, and had not been all along, and sent me on my merry little way. I honestly thought they were trying to kill me !!! I had the worst abdominal pain of my life, and when I was not throwing up I was sleeping.
So, back to the ER again
They said the nausea was something my body would "adapt to", and gave me a shot for the nausea, and sent me on my merry way again. Well, after another couple days of this, I called the answering service of the neurologist ( who by the way, I am seeing today at l:30 ), and begged him to change the medication. He changed it to Tegretol. This one just makes me light-headed, and sleep pretty much constantly. It works, I have not had any seizures, but, I am think maybe I am on too strong of a dose. Plus my Pharmacist informed me that Tegretol mixed with another prescription that I am taking, Celexa, could cause cardiac toxicity !!!
Back to the ER again !!!
The Dr's assured me that was not the case and even showed me on their computers' national database ( that gets upgraded virtually daily ) that there are no adverse effects of these 2 drugs when mixed. These are things that I will discuss with Mr. Neurologist when I see him today.
I am not even sure if I told you that my EEG tests came back positive for Epilepsy !!! Well, they did and that is the reason for the appointment with the Neurologist today.
I do not want ANYONE to think that I am ignoring them or have forgotten them ??? It is just gonna take some time for me to get back on track. The seizures wiped me out completely, and now the meds are too - that is until I adapt to them. I have so little strength right now. I am drowning the vitamins and Ensure supplemental drinks, and eating as much as I can. I truly believe my stomach has shrunk. I may be eating as much as I can, but it is by fare not "normal quantities". I just need some time to build my strength back up.
Update: 07 Feb 2004
GREAT NEWS, FRIENDS !!!!!
My Neurosurgeon in CA. read my test results today:
I am THRILLED to be able to share this happy news with you !!!
Update: 22 Apr 2004
Last week Tuesday I was having some horrific lower back pain that went from bad to worse throughout the course of the day. By Wednesday morning I could barely walk, had a hard time sitting because the pressure was so bad and my right leg would go numb after about 10 minutes and I would get so nauseated from the pain. Laying was the only comfortable position.
Off to the doctor I went. We were all concerned that these symptoms might be AVM related - that there may possibly be something in my lumbar spine. I had a lumbar spine MRI done on Thursday. I lived on muscle relaxers and pain meds throughout the weekend and finally got the results of the MRI on Monday. No signs of AVM or any aneurysms - thank the Lord !!! It showed 2 herniated discs at L5 and L6, and also a bit of degeneration (arthritis). I started physical therapy on Tuesday, and have my next appt. on Friday. The doctors and my physical therapists feel fairly certain that surgery will not be necessary - thank the Lord again !!! I have never had lower back pain before, and this was all new to me. It is awful !!! I think I would rather give birth than have this type of pain. Hopefully, after a couple of months of therapy everything will be ok. The strange thing is....................................that I have absolutely NO IDEA how I injured my back?????????? However, I've been told that sneezing, coughing, or twisting just the right way can throw your back all out of whack. Go figure.......... So, anyway, if I'm not real prompt at answering emails, this is why. I will try to do as much as I can each day, but it is still very hard for me to sit in an upright position for too long.
Also, by the way, I had my cervical spine MRI done last Monday, which is to be sent to my Neurosurgeon in CA. who performed my Cyberknife treatments. I will update again after I get the results from him re: any changes in my AVM.
God Bless.
Update: 1 June 2004
Hello All, It really hasn't been all that long since my last update, but I feel like my life has been shaken up, flip flopped, and turned upside down.
I was really doing pretty good for awhile, feeling good, dealing with things good. But lately, over the past few weeks, I've been doing not so good. I have been falling A LOT. Once landing myself in the ER with badly bruised ribs. My balance and coordination seem to be non-existent at times.
Also, my right arm (which is my bad arm - mostly numb & no fine motor skills with my hand) seems to have gotten even worse, which I really didn't think was possible. Apparently it is possible, because it's happened.
And, the head, neck, back pain, which I have become somewhat "used to", as a result of swelling in and around the AVM from Cyberknife treatment seems to have also gotten worse.
I'm pretty sure that all of these "new" symptoms are from additional swelling, which means the treatment is working. I'm happy and very pleased about that, but the new symptoms sure aren't helping with the psychological part of trying to deal with this disease !!! I know MANY of you feel the same way. You feel like you've gotten over one hurdle just to have another one pop up out of the blue and trip you up all over again.
Anyway, I wanted to apologize to MANY of you who have been e-maling me and not getting a response. You guys are always there for me, and I don't feel like I've been holding up my end. There are so many of you that are having problems of your own right now, and believe me - YOU ARE ALL ALWAYS IN MY THOUGHTS AND PRAYERS !!! I'm very sorry I haven't been able to e-mail you directly. I want to be there for you like I always have been, and as you are for me. I feel like I'm letting people down, or by not responding right away, making it seem like I don't care. That is not the case !!! I love you guys. You are part of my family. I'm just having a really rough time right now. I will try VERY hard to be more prompt at answering my mail, I promise.
Love and Prayers to You All.
Update: 28 June 2004
As you all know, I have been having balance/coordination problems, and a very swollen, pretty much useless right arm due to the swelling from the Cyberknife treatments I recieved last May. While these are symptoms that are to be expected, and they mean that the treatments are doing exactly what they are supposed to be doing, they've made me really clumsy, and needing a lot of assistance walking (unless I'm on a perfectly level floor with my AFO leg brace on) - and even then I sometimes have trouble. I'm pretty much totally dependent on my left arm now. The right is now so swollen and so numb it really doesn't do much except cause me grief when it gets in the way. At least before all of this swelling I had some limited use of it.
Anyway, Saturday evening Robin (my husband) and I went to the first of many summer parties that we usually attend. It was a pig-roast in the back yard of one of Robin's friends.
Problem 1 - There were probably over 100 people there, so we had to park kind of far away, in a very bumpy dirt driveway. STARE, STARE, STARE as he helped me along.
Problem 2 - When we reach the grass, it's down quite a steep hill to get into the backyard where the party is going on. STARE, STARE, STARE as he helped me down the hill.
Problem 3 - Once into the backyard, it's of course all grass and not a completely level surface, so Robin got me a lawn chair, and there I sat for the duration (about 3 hours). Oh, sure he brought me a plate of food - STARE, STARE, STARE as people who didn't think I noticed, watched me clumsily try to eat left handed (a trick I haven't completely mastered yet).
Problem 4 - Please keep in mind that these are people whom I considered to be good friends that I have known for YEARS !!! I felt like a COMPLETE outcast. Sure, once in awhile one would stop and say "hi, how are you"?, then slink away. Very few would actually sit and talk with me for awhile.
I wanted to leave pretty much 10 minutes after we got there because I felt so uncomfortable. I sat and watched people walk by in their sandals that I can no longer wear. I need to wear slip on tennis shoes every day that my brace will fit into and that don't need to be tied, because I can't tie. I watched people walk by in their blue jeans that I can no longer wear. I need to wear something with an elastic waist every day because I can't manage buttons, snaps, or zippers. I watched people walk by with their hair pulled back in barretts or a pony tail that I can no longer do with my own hair. I have to wear my hair down every day. I watched people walk by with pretty necklaces, bracelets, and earrings that I can no longer wear because I can't manage the clasps or backings to earrings. I watched people run and mingle here and there just like I used to do. I watched people go up and down that steep grassy hill carrying children, coolers, or plates of food, just like I used to do.
All the while, I just sat there thinking....................I am not the same person anymore. I do not fit in with these "people", these "friends" anymore.
Finally it was time to go. STARE, STARE, STARE as we went back up the steep grassy hill. STARE, STARE, STARE as we went back down the bumpy dirt driveway. STARE, STARE, STARE as we drove away.
I guess this would have bothered me a lot less if these had been a bunch of strangers. But they weren't strangers, they were people who I thought were my acquaintances and friends. They certainly didn't treat me like a friend. They treated me like a stranger or like I had the plague.
I tried to explain to Robin why I was so upset, but I don't think he fully understood. He understood that I was frustrated. But, it goes way beyond frustration. In a way it goes right to the core of my being, right to the heart of who I am.
I wanted to share this with you. Thank-you for letting me.
Update: 14 October 2004 (Submitted by Kim Rueffer)
I spoke to Thaye Young today, a number of family members have not heard from her in a long time and where concerned. She apologizes for not keeping in contact but her health has been poor, dealing with side effects of the radiation. She hopes to be back on the computer soon and thanks all of us who where concerned about her. She asked me to send this in as an update for her so everyone would know what was going on with her.
Update: 31 January 2005
It seems like it has been ages since I last updated, or was even actively on the computer for that matter !!! I believe the last time I updated was when I broke my wrist. Needless to say, a lot has happened since then. I GREATLY apologize to the "family" for being absent for SOOO long.
I have been very ill with some awful side affects from the Cyberknife treatments that I received approx. 21 months ago. So sick in fact, that most of my family thought I was dying. I went out to CA in Nov. to see my Neurosurgeon to get some answers.
I was in the hospital out there for 5 days, and had several tests and evaluations done. What I learned startled me to say the very least !! It seems, that my AVM is shrinking very rapidly - much more rapid than "the norm" I am told. Since the AVM has literally been a part of my body for my entire life, with it shrinking so fast it kind of threw the rest of my body into total upheaval.
Finding this out helped me to psychologically deal with things much better. The mind is a very powerful thing.
I do not feel great by any stretch of the imagination, but I can say I am feeling better. I still have a great deal of fatigue off and on, however, several of the other symptoms that were completely dragging me down have started to subside.
I've had a few phone calls, and cards sent to my home from a few members of the "family" - not to mention the literally thousands of e-mails. I am so appreciative and truly blessed by your continued love and support. I've missed talking with you and hearing what's going on in your lives !!! I will try very hard to be online and available more and more as I feel I can.
Much Love - Many Blessings ALWAYS !!!
Update: 19 July 2007
Here is my LONG OVERDUE update.
I was having major side effects from the Cyberknife treatment that I received in May, 2003. Seizures, extreme fatigue, balance/coordination problems, severe head neck and back pain, and so on and so forth.
Let's see...I have fallen down in a convenience store and broke my nose, fallen at home seriously 3 times and needed stitches.
In Jan, 2006 I was literally bedridden with pneumonia in both lungs. It took me a very long time to bounce back from that. This was a month after I had a flu shot that was supposedly going to help my immune system to be stronger. I will NEVER again have a flu shot. First I got a cold, then the flu, then bronchitis, then the pneumonia.
I was in and out of ER probably 1/2 a dozen times with such severe pain from swelling in my spine from the Cyberknife treatment. They'd pump me full of morphine and steroids and send me on my merry little way.
I went back to Stanford in California July, 2006. I learned that my AVM was 1/2 gone and given the option to have the radiation done for a 2nd time. Despite the side effects from my 1st treatment, I did however, opt to have the treatment done again to try and get rid of the remainder of the AVM.
I again am experiencing the fatigue off and on. My right arm (which was maybe 50% functional) is now roughly 25% functional. My legs feel like they are asleap, numb, and very heavy most of the time making it pretty hard to walk. I still wear the AFO brace on my lower right leg (which was my bad leg to begin with). I use my cane almost always now because my balance and coordination are so bad. It isn't certain whether or not these are symptoms that will go away as the AVM does, or if it is permanent nerve/and or cell damage as a result of the radiation. No one will know for sure until the treatment reaches the end of its course in another 2 years or so.
This past Mothers Day, Robin, Livvy, and I were having dinner over at my parents house when I went into respiratory arrest. Oh if that wasn't a treat !!! I thought I was dying. My Dad called the ambulance and I was brought to the hospital. Come to find out, I went into respiratory arrest because I had pneumonia in both of my lungs, a strep infection, and a sepsis infection. I was in ICU for 3 days and then released. That took SOOO much out of me. Being disabled and weak to begin with is one thing, but then add all that BS on top of it - WOW !!! That too was a long recovery period.
It's been a little over a year since my last treatment - my AVM hasn't changed a whole lot yet. Usually the 2nd year is when the most significant changes occur. I am anxiously awaiting my next MRI in Jan, 2008.
So much has happened, and this update probably seems like a great big downer. Yes, granted, I have had my share of crap, but if this AVM goes away it will have been worth it. Every day I wake up is a blessing.
My daughter just recently turned 8. I can't believe it !!! She is the reason that I fight so hard and don't just throw my hands in the air and say "screw it". There are so many things I want to experience with her, to show her, to teach her. I am not my disability, and through God who strengthens me, I can do anything.
There are so many of you that I'd love to hear from and reconnect with !!! Jeanne, Jay, Kim, Susan, Valorie, Ken, etc...etc...etc... you all know who you are.
Thanks for listening - Much Love - Many Prayers - God Bless.
Update: 20 August 2007
Well, where to begin ??? As many of you know I have had quite a bit of chaos in my life lately (to say the VERY least). I've been so preoccupied and overwhelmed by so much, that I neglected to give you the latest update regarding myself.
When I last updated my story I mentioned that I had been having trouble with my legs and the whole walking issue. Needless to say, I think it has gone from bad to worse. They are now even more numb and unstable. I'm really beginning to think that I may eventually lose all feeling. I know that's a very pessimistic attitude to have, but I don't know how much worse they could possibly get. I had pretty much learned to deal with them the way they were. I hated it, but I was coping and accepting it, and living with it. Now it's like a brand new obstacle and battle. My husband swears that it's a pinched nerve or something haywire in my lower back. I'd love nothing more than to believe him, however, my last MRI (the one I had when I first started having trouble with my legs) showed nothing wrong in my lower back. I honestly wish that there was something wrong in my lower back , then maybe it could be treated. I'm really starting to get scared that it's permanent damage from the 2nd Cyberknife treatment. There is a slight possibility that it could be swelling from the Cyberknife treatment that was too small to show on the MRI, but I really don't think that is the case either since I was put on a very high dose of steroids for several weeks just in case there was swelling that they weren't seeing on the MRI. The steroids didn't do a thing to help my legs. I just had to deal with the awful side affects from them for months.
I'm thinking maybe I'll request to have another MRI done. My doctors usually want me to anyway if there are any changes in my condition. My next "6 mo. scheduled" MRI isn't until Jan. 2008, and I don't want to wait that long if there is a possibility that I could get some answers before then.
So guys, that's my story for the time being. Please keep a positive thought for me, and I'll update if there's anything newsworthy.
Update: 21 August 2007
OK, let's start with the leg issues, shall we ? I called my family doctor today to see if I should possibly have another MRI since my legs seem to be getting worse. He said that I'd just had one this past June and it showed nothing, so there probably wasn't a need for another MRI. He wants me to try the drug Neurontin - supposed to be for nerve pain/damage. Have any of you ever taken this medication ? If so, is there anything you can tell me about your experiences with it ? Second, he wants to refer me to another doctor - one who specializes in nerve pain/damage (I forget what specific title he had for this doc). I HATE taking pills !!!! And I really don't want to take this one if it's not going to be beneficial and just causes a bunch of side affects that will make me sick. And I HATE going to new doctors. With my medical history it seems like it takes them forever and a day to even get a grasp at what I've been through, let alone trying to put together some sort of treatment plan.
Next issue. I don't know how many of you I have shared this with before, but now seems like a good time. This month has been absolutely ridiculous, and this is the icing on the cake !! About 6 years ago my house was broken into. The guy who did it was already on parole AND supposed to be wearing a tether for auto theft. Anyway, in my case he pled guilty to home invasion, assault and battery (on me), and parole violation. He was sentenced to 7 - 35 years in prison. Well, long story short, I got a letter in the mail today from the State of Michigan Department of Corrections. It seems he is being released TOMORROW !!!! I guess he has just been a "model prisoner". He hasn't even served the minimum of his term !!! So, needless to say, I am terrified that he'll come back and want revenge or something for me putting him in prison. The only thing that gives me the slightest peace of mind is my 2 year old German Shepherd, Sadie. She would tear someone apart if she thought they were trying to harm our family in any way. She is VERY smart and sooo loving. And she is very protective of our family - heck, she's even protective of our cat !!! However, I am still feeling very uneasy knowing he's out and roaming free.
I have had so many HUGE things happen in just a matter of weeks. I am feeling very overwhelmed. No, overwhelmed just doesn't cover it. I don't think ever in my life have I had this multitude of feelings and emotions running through my mind all at once. It's just about to the point that I'd say it's almost unbearable and out of control. As I stated in one of my last updates, I truly think it is time for me to take some time for myself and seek some counseling. This letter today was like the straw that broke the camels back. I honestly don't know how much more I can possibly take all at once.
Thanks again guys - for letting me get this out and vent. I find it to be a very useful outlet to write. I think it helps a great deal. It seems to lift some of the weight off my shoulders to be able to share my thoughts, feelings and fears.
Love and Prayers to All of You Always !!!!
Update: 11 November 2007
Well, the last time I updated I was getting ready to start Hyperbaric Oxygen Treatments to attempt to repair/renew/rejuvenate some nerve/cell/tissue damage that occurred during my Cyberknife Radiation Treatments. I met with the doctor and after assessing my background/condition he subsequently gave me a prescription for 30 treatments. We discussed the treatments and the questions that I had were answered. I was told that they had never treated a spinal cord patient before and had nothing to use for comparison as far as when I should begin to see results (if there were to be any). So the plan was to just go forward with the treatments and see what was what after the initial 30.
Last Friday I was actually in the Hyperbaric Oxygen Tube receiving my treatment when the doctor came in and happily (when I say happily I mean the man actually had a grin on his face the entire time !!) spoke to me through the microphone and told me that I was on my 20th treatment and was showing no signs of improvement so we were just going to discontinue the treatments at this point because if there was going to be improvement I should have started seeing it around the 10th visit or so. Then he kind of chuckled and said well, we gave it a try, right ?
I was just blown away by the sheer audacity of this man !!! First of all for speaking to me through a microphone and not having the common courtesy to speak with me privately either before or after my treatment - or better yet - actually scheduling an office appointment with me so we could maybe have had an actual discussion. Second, for not allowing me to finish my course of 30 treatments as was origionally discussed and agreed upon - since as he told me at my initial consultation "We've never treated a spinal cord patient before and your results may vary greatly from other patients." Third, for violating my privacy "HEPA" rights. He spoke to the through a microphone with a roomfull of other patients, technicians, etc. right behind him. I was so upset by his insensetivity and nonchalantness that I bawled by eyes out literally for hours. I do intend to place a phone call to this doctor Monday morning and tell him how I feel about the way he unprofessionally handled things. It will make me feel better and give me closure.
I wasn't expecting this treatment to bring miracles or anything, but I had hoped that it might help in some small way. I'm sad that I didn't get any benefits from the treatment, but I'm even more upset by the way my so-called doctor handled things. For not letting me finish my 1st planned course of treatment, for so cheerfully discussing my case and treatment with me and everyone else in the room as he spoke into the microphone to my tube. Mostly just that he was a JERK !!!
So, needless to say, my feet/legs/hips/waist are still pretty numb, the sensation is very screwed up, they tire easily, balance and coordination are laughable. So, I don't think I'll be getting rid of my cane or brace anytime soon. Which is ok. I am honestly ok with that. I am who I am, and I am NOT my disability. I'm proud of who I am and everything that I've accomplished despite my disabilities. So with that said, I will continue to fight the fight as I always have. I have a wonderful faith, a wonderful family, and a wonderful group of friends :) Thank you for ALWAYS being here for me when I need you. You're some of the best friends I've ever had. Please know that I am always here for you as well. Talk to you all again soon.
Love, Hugs, and Prayers.
Update: 24 March 2009
Hello Family !!
I've missed you more than you know. I've been M.I.A. for quite some time due to several problems resulting from the side affects of my 2nd Cyberknife radiation treatment. They were much worse, and I'm afraid much more permanent than the affects of the 1st treatment. I was aware of the risks going in, but I just hoped I'd be more fortunate than I have been so far. I just want SO BADLY to be rid of this damn AVM and all of the heartache and stress and sadness it brings to me and those closest to me. I know you understand.
I've all but lost the ability to walk. In part because of damage to healthy tissue/cells during radiation, and in part to terrible circulation in my legs also due to radiation. In about a month I have an appt. to see a vascular surgeon. Maybe he will be able to help with the circulation - therefore maybe helping with the walking.
There are very few parts of my body left where I have "normal" sensation and strength - also from the radiation. I've also lost a lot of weight - barely weigh 100 lbs. Don't even look very healthy. Tired, tired, tired A LOT. And on top of it all..... bladder problems due to the lack of feeling/sensation. Some days I feel like an 80 year old woman. It's terrible.
Hopefully within the next year to year and 1/2 I'll go back out to Stanford in CA. and have my post radiation angiogram done. Hopefully the AVM will be gone. There were only 2 feeders left........so God willing they're gone. I won't have any further radiation done regardless, I really don't think my body could take anymore.
Anyways, that's my story and why I haven't been online in so long. Am starting to feel somewhat better, so I will try to be online much more often. I'm very anxious to hear from you. As I said before, I have really missed you guys. I've thought about you often and you're always in my prayers. Talk to you soon..............
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