NARRATIVES
TALK TO A
ADVICE
The Rueffer family, Easter 2007
Matt, Bob, Kim, and Mike
Hi, I'm Kim Rueffer, born and raised in Montgomery County, to Chip and Margie Wood. I have one sister, Carolyn. Graduated form North Pennsylvania High School, Lansdale PA in 1977. Attended nursing school, I am a RN employed at Einstein Medical Center, Philadelphia. I've been married to Bob for 11 years. We have two sons, Matt is 7, Mike is 3. Our family also includes Abbey, our yellow lab.
24 September 2000
February 4th, 2000, at 10:10am will always be etched in my mind. That's the day my avm burst and changed my life dramatically. Sitting at the kitchen table when I felt what I call a "lightning bolt" hit the base of my skull and shot through my head. my neck muscles locked up and I started vomiting. I've been a nurse for 20 years so I knew something was very wrong. I called my parents, my mom watched my son while my dad took me to the ER. After hearing my symptoms, the ER. doctor told me, "You just described the scariest headache there is, it's classic of a brain hemorrhage" I flat out didn't believe him.
After I had a CT scan I saw the radiologist come flying past with some films. everyone was huddled around him and pointing at me. The next sensation I felt was sheer terror, the doc came over to tell me I had a bleed, probably an aneurysm ruptured. They shipped me to Abington Hospital for an arteriogram, my husband met me in the ER. He looked scared to death, a look I have never seen in the 12 years we have been together. The next thing I remember the neurosurgeon came in holding up films, and telling me what a lucky lady I was. It was an AVM near the brain stem. I screamed at him, "You call that lucky are you nuts". He went on to explain that had it been an aneurysm it would have meant emergency brain surgery, but AVMs are treatable without surgery and they would send me to Will's Eye in Philly, where they specialize in this.
I spent the next 5 days at Will's , having MRIs , CT scans, they explained embolization and gamma radiation, I actually didn't feel bad, I was up walking around and getting bored being there. They sent me home to rest for a few weeks. I was back 16 hours later with another bleed.
I spent the next 3 weeks going through hell. One complication after another, I developed hydrocephalus and needed a shunt, got septic with temp's of 102.9, developed a clot in my leg and needed a filter put in, I vomited the whole 3 weeks, had horrible headaches. They put me on Dilantin to prevent seizures, I had a reaction to it, they tried Depakote, it made my hair start falling out. I finally went home with 12 hour a day nursing care (courtesy of my mom). My right side was numb, I frequently lost my balance, just walking up the stairs was an effort. I finally started getting well little by little, underwent the embolization and gamma radiation. Six weeks after that I was well enough to go back to work and did well for about 7 weeks.
Then the dizzy spells started. The room doesn't spin, my head does. Kinda feel like I'm constantly losing my balance, sometimes I feel like a steamroller rolled over me, I just can"t move! They are sending me to a neurologist October, 2nd, hopefully he can help, or at least explain why this is happening. The doctors and nurse at Will's kept telling me how lucky I am, I felt like slapping them. It is not "lucky" for a 40 year old woman with 2 small kids to have a hemorrhagic stroke. Fortunate because it could have been a whole lot worse , I wholeheartedly agree. I have deficits, and I believe I will always have them, my husband "the optimist" believes it will continue to get better. This ordeal strengthened his faith in god , but shook mine to the core.
I feel like I have had every emotion known to man in the past 8 months. The one I still carry around is fear. This ordeal put my family through hell, my 3 year old gets up frequently during the night to make sure mommy isn't in the hospital, the 7 year old always has something of mine hidden in his room (I think he thinks if he has something of mine I will always be around) My husband continues to be patient and loving whether I'm scared or depressed, he's always there. I tease him sometimes I tell him when we said "in sickness and in health" he didn't know what he was in for.
To my family, friends, neighbors, and coworkers, "We couldn't have done it without you, you were a godsend to us" I am extremely grateful to be alive ,to be able to walk, talk and watch my kids grow up. I have met lots of wonderful people on this site who have helped me more than they will ever know. Hopefully I can do the same for someone else.
Update 3 Dec 2000
Hi, I wanted to wait till I had some good news to report. Here it is...my neurologist has found the cause of my dizzy spells. Apparently when my AVM ruptured, the bleed severed the connection between my inner ear and the balance center in my brain. This is 100% curable. I'm currently working with a vestibular therapist to correct the problem. The stress of my illness, compounded with my dad's death on October 24,2000 was too much for my 8 year old to handle. He was acting out in school, home, because he didn't know how to express his feelings. So we started family counseling, this therapist has done wonders for all of us. Matt is now doing great in school (straight A's) and is learning to express his feelings. My 3 year old still checks on mommy every night (at some rather inconvenient times I might add), but it's OK.
I remember lying in my ICU bed thinking "why me?". Now I know. God wants me here to help other people with this disease. It has brought me great joy,some sadness, and a lot of laughs communicating with all of you. I still have deficits, they are not horrendous, but they are there. And not to kid myself I believe I will always have them, and in a way I'm grateful for them for they will always remind me that but for the grace of God what could have been. Happy Holidays to all of you, Kim
Update 26 Jul 2001
Hi everyone, it's been way too long since my last update. I'll start with my good news. While I was at home convalescing I completed Kaplan College's Legal Nurse Consultant program. I received a letter with my transcripts "you have exhibited exceptional scholarship through-out the program and completed with an overall academic average of 90%"
Best news of all, an arteriogram revealed that my AVM is GONE!!!! I'm still in shock, I asked the doctor at least four times "are you sure it's gone" I keep pinching myself to make sure I'm not dreaming. When they did the radiation they told me because of it's location it would take 2 to 3 years to fully obliterate it, and now just 14 months later it's gone. I consider that nothing short of a miracle.
The bleed from the AVM left me with some continued and some new difficulties. I still have dizzy spells, I was told by one of the neurosurgical residents that in time they may go away, but then again they may not. Only time will tell. I had attempted working again only to develop fainting spells. Saw the best cardiologist at Einstein who diagnosed " neural mediated hypotension" Sitting my blood pressure is 110/60, when I would stand up it would go to 20/..no wonder I passed out!!! Fortunately this is treatable with medication.
I also developed an atypical migraine pattern. Prior to the AVM rupture I NEVER ever had a headache, guess I'M making up for lost time. What's frightening is my migraine presents with stroke symptoms, my whole right side goes numb, my speech gets slurred and my head feels like it's going to explode. The neurologist prescribed Topomax and feels hopeful that once I have a therapeutic blood level my migraines will dissipate.
I could not have gotten through all the bad times without you all , and I'M grateful to be able to share my miracle with you too. To me this family is a miracle in itself, I'm so grateful to have found you all.
Update 18 Dec 2001
Hi, well we are set to leave for Boston 12/20/01 to see Dr. Samuel at Harvard. They have canceled my appointment twice, we "discussed" this, I will see him 12/21/01, there will be NO cancellations.
Keep us in your prayers, it's a 5 hour car trip. A neighbor recently was in Boston on business, warned us that stopping at stop signs is optional in Boston. Keep also in your prayers my mom as she is baby-sitting our kids for the two days.
Happy Holidays to you all,
Update 22 Dec 2001
Well our trip to Boston was not only enjoyable but pleasantly surprising. Dr. Samuel spent a considerable amount of time with me, well over an hour, his diagnosis and conclusions are:
1) My neural mediated hypotension is a direct result of the AVM and Gamma radiation. Once the radiation is done "cooking" he anticipates the hypotension will resolve.
2) The frightening episodes I was having where my limbs wouldn't work are seizure activity, BUT it is not epilepsy, again same deal when the radiation stops cooking it should resolve.
In the meantime since I have had such dramatic results with Keppra it will be continued (probably no longer than 6 months) He made this statement in conclusion "I have no magic wand, or cures, but I fully expect that once the radiation is done it's thing I fully expect you to make a 98% recovery. 2% may simply be some residual numbness in my right side." He also told me he was rather amazed at how well I have done so far, and that unfortunately recovery from brain trauma,is SLOW. The message I got from all of this is never give up hope.
Looks like Santa arrived for us early. Ironically enough my husband and I have dinner at a Chinese restaurant the night before my appointment, my fortune cookie read "you will have good health"
Holiday hugs to you all.
Update: 30 Jul 2002
Well my yearly check up with the neurosurgeon sucked! He read Dr. Samuel's report and said "I'm sorry he gave you false hope.Your problems are not form the Gamma radiation. You had 2 central nervous system bleeds, that doesn't get better. What you have is as good as it gets". I got so depressed I was suicidal and ended up being hospitalized. Blessing in disguise (God bless you Dr. Bell). He came up with a combination of medication that gives me some quality of life. Remeron for depression and Ritalin for energy. Without the Ritalin I'm on the couch 22/7 due to overwhelming fatigue from the bleeds.
I finally got to the acceptance stage (make that "uneasy acceptance). My middle name should be "Yeah, but". People will say "you seem better" and my response is always "Yeah, but I want it to be even better". I have lots of physical limitations and I'm learning to live within them. Most days it's a struggle just to get up and maintain my balance. My balance center is so messed up that when I am up I get so nauseous I vomit for hours (haven't lost any weight of course). My BP drops out frequently, they originally thought they could treat it, but the medication would raise the pressure in my head and potentiate another bleed ( no thanks, two is plenty) So the neurosurgeon forbids it.
And oh the joys of the SSDI system and my LTD carrier. I never shared this before, but I'm a recovering alcoholic, sober 16 years. And I have used every tool I learned in AA to help me with the AVM. When I had my first hemorrhage my sponsor told me "this will truly re-teach you the concept of "one day at a time". How true.
Update: 4 Feb 2003
Since it's the 3rd anniversary of my AVM tragedy I thought good time for an update. Fortunately this one is a little more upbeat than the last.
Beginning of the year was difficult, struggling with SCSI, my long term disability company, my older son's behavior problems. However I'm happy to tell you I did get approved for social security disability. The disability company...shall remain nameless but I can tell you that TV shows, Dateline and 60 minutes did a special on "problems' with that company. Shortly after that my benefits where reinstated.
My Matthew, now 10 developed ADD and ODD(oppositional defiant disorder) which I'm told is common in kids whose parents has had a life threatening and or altering experience. Had to call the police at one point for his behavior. Sought counseling and a child psychiatrist. Found out something that made me "nervous". My son has "absence seizures", has responded beautifully to Troleptal(dual drug, treats the seizures and helps with aggressive behavior) The doctor explained that in kids they are called absence seizures"and they tend to outgrow them, in adults the same seizure pattern is called "complex partial", exactly what I have as a result of the AVM. The nurse in me said "OK, you know AVMs are NOT hereditary, calm down". The "mom" in me panicked. Fortunately the psychiatrist and the pediatrician where very understanding of my "mom" fears and are more than willing to do a CT scan.
When my AVM first hemorrhaged I spoke with a friends brother who had been in a horrific car accident, 3 brain surgeries...(this is the man I refer to in "Planning Brain Surgery") he told me, "you will notice as the years go on that all of the sudden "something" is different. You wont be able to explain it, put it into words, but you will just know "something" is healed. Well "SOMETHING" appeared, it started under situations that tend to aggravate my problem, kids off from school for 2 weeks, snow, snow, more snow, the holidays(they can be stressful for anybody)and of course during all this I get my cycle. My husband commented about 5 days into this that I was doing remarkably well given the circumstances. I slowly started realizing that indeed "something" was different. Do not get me wrong, I still have all the disabilities. The low blood pressure, seizures, horrendous headaches, difficulty maintaining balance, very little endurance. But my "something" is I just plain feel better. I cant explain it(trust me I have tried) I don't understand it, I'm simply enjoying it.
Update: 29 Aug 2003
Well a lot has happened since my last update, unfortunately nothing good. I took a major nose dive and just continued to get sicker and less productive as the weeks went on. My family kept prompting me to go to the hospital as no one should be that sick. I finally got a headache that resembled the one when I got hydrocephalus...off to the ER. (The following is the exact reason I didn't want to go to the hospital).
ER, chief complaint "worst headache of my life". They left me in the ER waiting room for 3 hours, I'm passing out whenever I attempt to stand. Finally get into the ER, they leave me there 2 more hours. CT scan was initially read by the radiologist as "normal". Neurosurgeon read it and my brain was "loaded with inflammation". Blood clot in the sagittal sinus which caused the inflammation; loaded me with steroids, IV fluids and Morphine.
I kept insisting my shunt needed to be adjusted..nobody listened...well nobody from neurosurgery. They kept telling me the CT scan doesn't show that. I told them "stop treating the CT scan treat ME". A number of consultant where brought in and they all came to the same conclusion "Kim's shunt needs to be adjusted". FINALLY after 14 days of pure hell and being gorked on IV morphine, neurosurgery had no choice but to adjust my shunt cause I was as sick as the day I came in. I might add the resident that adjusted the shunt forgot to plug it in before he did the procedure. I looked at the machine and said "yo it helps if you plug it in first".
Four hours later I was a new person, everyone that had been following me was amazed at how quickly that small adjustment made such a dramatic difference. Which leads to the best part of the whole nightmare...I got to do something I'm sure many family members would like to do. I FIRED my neurosurgeon. To their face too, told him "you let me suffer for 2 weeks, you didn't even evaluate me 4 days in a row, I will be employing another neurosurgeon from U of Penn." They where a bit shocked to say the least, had TONS of excuses, but they fell on deaf ears. After all I have been through I deserve a physician who gives a damn about my well being and they are not it. Morale of the story..don't ever be afraid to fire a doctor. If you had a bad meal at a restaurant you wouldn't go there again so if you are not happy with the care you are receiving, fire them and find another one.
Epilogue - "How are you now?
Ater reading my narrative you may ask, "How are you now?" And here is my answer.
Every one has their greatest fear in life, mine has always been surviving something and being permanently disabled. And it is every bit the horror I always imagined it would be. Lesson from nursing school; they wanted us to have an idea what it was like to be old; put corn kernels in our shoes to mimic bunions, wrapped our eyes in Saran wrap so our vision was distorted, wrapped our joints so mobility was limited, put cotton in our ears. Lesson LEARNED. However I could never mimic what it's like to be brain injured, I can only attempt to describe it:
You are not "dizzy" but the effort to constantly
maintain balance is exhausting. Almost as if your head is whirling
but the earth isn't. Ever get off a ride at a carnival and feel so
woozy you swear you will NEVER do that again? That's it!
Headaches, 23/7 mine are "hemiplegic" meaning when the head hurts
(now there is a lame word for it) my entire right side shuts down,
as if I have just had yet another stroke. They tried a new
medication to break the headache "Droperidol"...it caused a
dystonic reaction, my face swelled and my lower jaw was visibly
shifted to the left, my airway started to close. (I had a nurse who
was not familiar with the drug and had no clue what was happening.)
Other then the first brain hemorrhage it was the scariest time of
my life. Dear God, I have suffered for 3 years, now I'm going to
die a horrible death. Could he at least make it peaceful?
Depression, obviously goes along with all this. Antidepressants
only keep you from being suicidal, they do not make you "happy".
There are happy pills out there, we both know they are not legal
and I chose NOT to go there. Somehow staying sober 17 years still
MEANS something. I would rather be in intense physical pain than
endure the depression...it SUCKS. At least if I'm in pain I know
I'm alive. The depression is an overwhelming feeling of
hopelessness, nothing will get better, there's no reason to go on
and I hate that worse than anything.It happens much too
frequently.
Social death, I'm borrowing a quote from a movie "there is a social
death that precedes the physical one"(I think the movie was
Philadelphia with Tom Hanks) It's not friends or family's "fault"
but being around someone who is not as they should be just isn't
fun. People are just going about their lives, it isn't their fault,
nor are they being cruel in forgetting how you are suffering. Shit,
I wouldn't want to be around someone like me either.
The hardest part to describe... I'm here but not really. Almost
like I'm in a bubble. I know the world is going on around me...if
only I could reach out and grab it, but I can't. Someone is talking
to me and to them I make sense. To me I'm not sure if I do.
Now aren't you glad you asked, "How are you now?"
Update: 09 Jan 2004
Hard to believe it's been 4 years since the brain bomb..time flies when your "dain bramaged". Not much new except my mental outlook has improved despite the ongoing physical limitations.
Now the good stuff. My best friend once said to me "Kim you say what everyone else is thinking but is afraid to say". That part of me has not changed so here it is..AVMs/aneurysms affect nearly every part of your life. The hemorrhages, surgeries or radiation, plus all the seizure meds, antidepressant meds affect the sex drive and NOT for the better. Im only 44 but I had planned to have a long happy sex life (didn't we all) Did all the bloodwork to see if I was menopausal, totally negative. Can't take hormone replacement therapy anyway because of the AVM. Can't take a chilled bottle of champagne to bed because my husband and I are recovering alcoholics and number 2, I want to remember the 'event'. Saw an ad for an herbal remedy for my problem..Avlimil..ordered some and had my neurologist check out the ingredients before I started it. She claims that for me it's totally safe and let her know if it works. BINGO..it does exactly what the ad claims it does.
Now that the important aspect of my life is back in order..Not much else has changed except I'm smiling more. The headaches continue, they started me on Neurotin for them, it helps 20% but I still get horrific ones at least twice a week. the kind where I'm in bed for 36 hours throwing up and wishing someone would cut my head off.
The worst of the deficits is the fatigue. It seems like the minute I say "if I could trade in just one problem it would be the fatigue" another one acts up, my blood pressure crashes, the seizures become more frequent, or the headaches increase to 4 times/week.
My husbands son from his first marriage (Scott, he's 32) just moved back from California and will be moving in with us soon. He needs a place to stay and it will help to have another man around the house for transportation etc. Plus our 2 boys absolutely adore him, he's great with kids. Geez, 4 men and me...I should have my own reality TV show.
It's been 3 years since my dad died and my mom recently got married. Her new husband's daughter and I went all thru school together, it was great to see her again .
My kids recently brought home a stray kitten, I allowed them to adopt the kitten because it's a female. Never realized how much I missed cats till we got Whiskers. However the dog is not too thrilled about this, she gets jealous and hops up on my lap, all 100 pounds of her.
Hope you are all doing well....I'm smiling
Update: 01 Apr 2004
Well this is not the type of update I like to submit, however..it may help someone. Have been feeling dizzy for 3 days (blamed it on weather changes, my age, it's Monday...this is called DENIAL) something was wrong!!!!!!!!!!! Found that out the hard way. Developed a sudden severe headache, my neck muscles locked and I started vomiting, what little vision I have in my right eye was gone. Bob called 911 and some of the next events I don't recall but were told to me. Kept calling the ambulance drivers "park rangers" wouldn't let them give me oxygen cause I thought it was a hose and they where going to squirt me with it.
Got to the hospital, the doctor who originally diagnosed my first AVM bleed was on, he rushed me to CT scan , had 2 nurses accompany me just in case. THANK GOD, I heard them scream for him cause my first blood pressure was 140/99 it dropped out to 60/30, he came in "she's going into shock "they gave me massive fluids and about 6 blankets. Blood pressure bounced all over from 150/99 to 68/30 for the next 12 hours.
CT scan was OK, but thank you Dr. Solomon for having common sense, he immediately did a lumbar puncture , first tube was bloody..now I'm awake, in pain and SCARED. He promised to send me to Dr. Grady if necessary. Turns out the blood was from a traumatic tap and after some pain medication I was well enough to go home (loaded with lab reports for my neurologist, neurosurgeon and cardiologist...ALWAYS get copies of stuff like this).
Bob took off work to keep an eye on me for 48 hours. He's cooking tonight...but he doesn't know that yet, doubt he will mind though.
Hope next update is better
Update: 10 January 2005
Hard to believe it's been 5 years since the brain bomb. And now...LET THE HEALING BEGIN!!!!! This ordeal has been the focus of our whole family's life, mentally, physically and spiritually and not always in a positive light. My new attitude is "it happened, it sucked, but move on and DO something about it, make it count"
My kids have been scarred the most, fear, anger, etc.They have had so much therapy I swear they have "analysis paralysis". What truly has helped the most is I bought Dr. Phil's book "Family First" and put his plan into action (are you gagging Bill?). Remarkable difference.Very rewarding and heartwarming to see the whole family pull together as a team.
My health...I have another "gift" from the Gamma radiation, Epilepsy! Recently diagnosed with motor seizures in addition to my complex partial seizures. Anyone who reads my narrative and is considering having Gamma needs their head examined (no pun intended). I had the 2 hemorrhages, the embolization and was 95% better (only had nerve damage in my right foot, big stinker), then came the Gamma, they thought it worked, but on angiogram it showed that 2% bloodflow shunting thru the AVM. So Im no better off than before the Gamma, still at risk for hemorrhage and have all the restrictions, plus all the side effects I got from the Gamma.
I was recently told that Gamma radiation effects hang around 10 years not the 7 I was originally told...yummy.The doctor (I use that term losely here) that did the radiation did NOT inform me of the possibility of ANY of these side effects, one of the many reasons I fired him. However medical care is like dating, you have to kiss a lot of toads before you meet a prince. I met the "princes" at HUP, they are all fantastic. They care about you as a human being, your family, I can't say enough good things about them.
All in all, I have my good days and my not so good days. I totally enjoy my good days, my not so good days, I catch up on movies and phone calls.... it sure could be a LOT worse!!!!!!!!!!!
Good health to all of you.
Update: 20 June 2005
Well this is definitely NOT the update I had planned. On April 4th my husband drove me to visit my son who was in the hospital. We where stopped at a red light, WHAMM a lady hit us doing 30 mph (we where both buckled in our seats). I was thrown back and forth twice, my head hit the passenger windshield, I immediately started vomiting and it felt EXACTLY like when I had my first hemorrhage...off to the ER.
One CT scan, negative for a bleed thank God, and 7 x-rays of my neck and shoulder. I passed out on them during this so they stopped. "Follow up with your primary doctor, you will have problems from this" Gee ya think so???????? Primary sends me to orthopedic doctor, MRI of neck and right shoulder which is now frozen. One herniated disk, 3 bulging disks in my neck right shoulder loaded with inflammation.
Now for the bad part they found a growth on my pituitary gland that had never been there before and needs to be evaluated by my neurosurgeon. I'm currently doing what he calls a "pituitary packet"a very specific MRI of just the pituitary, tons of bloodwork, and then a visual field test. After all that I go see him find out what it is , what can be done.
On the positive note pituitary surgery is done thru the nose so no head shaving. The bad news is Gamma radiation is famous for causing cancer in other areas of the brain and the pituitary is right above the brainstem where my AVM was radiated... funny they didn't "mention" that when they had me sign the Gamma consent, or even mention it was a possibility. The lesson in this.. get ALL the information BEFORE you sign a consent. Gamma sounds sooo easy, but the side effects are so debilitating.
I would appreciate you keeping me and my family in my prayers. I will keep you posted.
Update: 21 January 2006
Hi Family, WOW, it's been 6 years already. The tail end of my 5th year was rather scary. I had gotten up at 5am to use the bathroom and out of nowhere it felt like someone cut me in half literally. I had absolutly NO feeling, movement on the entire right side of my body, couldnt talk. (fortunatly I was sitting on the toilt when this happened, we have a towel rack right in front of it so with my left hand I hung on to the towel rack) My avm bleeds where the scariest thing that ever happened to me, this was the second scariest thing,
I knew it was a nasty stroke. After 2 hours I got some feeling in my leg and slid downstairs and laid on the couch. Bob works night shift, he came home, took one look at me and said "you look awful" and proceeded to sit down and pay the bills, I got scared because I knew I needed medical attention. So I called Sue Weinholtz (now that this is over it's pretty funny) as soon as she answered I said "Oh HELP Im trapped" She asked what was wrong , I told her, She told me to call Dr. Grady and get Bob to take me to HUP's ER. I looked at Bob , told him Sue's instructions, and if he knew what was good for him he would NOT mess with SUE.
HUP was awesome, Dr. Grady's residents were waiting for me in the ER, I had a CT scan within 3 minutes of arrival to the ER, after that a battery of neurological tests by the neurologists. CT scan was negative for a bleed. I was admitted for 5 days, my right arm was still completly useless which really scared me, the neurologist kept telling me the feeling would come back in 48 hours, then it was 72 hours, then it was "oh sometimes it takes a litte bit longer but it will come back".
After all my tests where completed the neurologist and all his interns, residents, medical students (extra 9 people in the room makes it a bit crowded, and makes me feel like Im under a magnifying glass) they announce that I had a SMALL stroke with no permanent damage. I smiled at the neurologist and said with a straight face, "Well SIZE does matter doesnt it". Nobody could stop laughing.
Update: 5 September 2006
I always chuckle when I see the commercial for Computers with the turtles, who call themselves "The slowsky's", reminds me of ME. Life in the slow lane. And after I chuckle I grit my teeth, because Im still on a quest to find SOMETHING that will make my life more manageable. I realize I will never be 100% of my former self, but there are issues that can be addressed, and I dont take NO for an answer without exhausting every annd all possibilities.
Now I have been doing traditional medicine for 6 years, hasn't done me much good, adding a homeopathic healer was suggested by a nurse I worked with and whose opinion I trusted (turns out this homeopath works with the physicians at HUP, where all my doctors are..there are no coincidences). This woman was awesome, consultation took 2 hours, she prescribed 3 remedies. which I ran by my primary doctor. He gave the OK for all of them as all of it is natural stuff. The BEST remedy I got was the stuff for depression. I have been on antidepressants for 5 years and I still get bouts of morbid depression. The stuff she gave me is made from a flower, gave me a bolus dose, then 1 tablet daily, WOW, what a difference!!!!!
Now obviously with my blood pressure, seizure, problems I have to stay on my "traditional" medications and the homeopath insists I do such, wouldn't dream of messing with that . Simply combining traditional medicine and homeopathic medicine.
On to the headaches, which think they own a place in my skull. I posed a question to my neurosurgeon "I had an occipital nerve block, it was like heaven, so if that worked that well, why not burn out the occipital nerve permanently" . Well low and behold they do exactly that, BUT not until you have had 3 succesive nerve blocks that have not completely relieved the headaches..rationale for this is...you guessed it INSURANCE. The Holy AETNEA rules "thou shalt suffer thru a series of 3 blocks before we pay for such a procedure". Page 8967. It does not matter that said patient has been in agony for 6 years prior to such procedure, tried every medication to relieve headache, 3 blocks MUST first be performed at 2 month intervals. Now of course there is NO page 8967, but I'll bet buttons to brain cells there is something darn close to it. Get the feeling Im not fond of insurance companies???? Im having my second block in the next few weeks.
I have a new neurologist Dr. Diamond...very appropriately name I might add, he is a gem. Spent 1½ hours with me on my first appointment. Very concerned about finding the cause of my "neurological crashs", intends to speak with radiologist to find out a LOT about the long term effects of Gamma radiation, as what I describe happens to me should NOT this far out. So much better than my last neurologist, going to her was like sending a one legged man in to win an ass kicking contest.
My family, my kids had better get jobs SOON. Eating us out of house and home. Matt is 13, 6ft, 210 pounds. Plans to go out for football when school starts. I already feel sorry for the opposing team when he has the ball, if they have sense they will yell UNCLE and run off the field. Mike's 9 and last year he was the tallest kid in his class, his IQ is off the charts, and he is the most adorable blonde haired blue eyed boy there is. Scott's still with us, he's great with the boys, keep's them in line. Bob works night shift, 10 minutes from home, we dont see each other a whole lot which makes the time we do see each other quality time...nuff said on "that" subject.
Update: 14 January 2007
Well hopefully this will prove to be a long waited for stroke of luck. I have had elevated protien in my spinal taps for 6 years, as soon as I began being a patient at HUP, they began searching for the cause of this with no luck, and they searched high and low, did every test they could think of, even consulted Mayo Clinic. No answers. I continued to stay sick. I was receiving occipital nerve injections to help with the headaches and happened to ask that neurologist what his thoughts where on the elevated protien. His response was, "Doesnt take a genius to figure that one out, the shunt has been in 6 years, physicians in Europe only leave them in 2 years then remove them. Your body is producing the protien because it's reacting to the shunt like it's a foreign body". You need to have it removed"
Well Bob and I just sat there with our mouths hanging open, we had never heard such a rationale explanation for the elevated protien. Made an appointment with Dr.Grady, my neurosurgeon, explained what the neurologist told me and he also thought it was worth pursuing. So:
Step 1
We attempted to turn the settings of the shunt down, could not do
such. Had the shunt representative there, he tried with a high
powered magnet said "Never saw this NOT work" Well that magnet
never met me, it didnt work. The shunt rep and Dr. Grady concluded
that my protien had been so high for so long that the shunt was
encased in protien (protien is a very sticky substance) and the
shunt probably had not worked in years.
Step 2
Dr. Grady had me come in-patient and clamped off the shunt, kept me
in the hos pital for what was supposed to be 2 days to see if I
developed hydrocephalus. If I did, I needed the shunt, If I didnt,
step 3 was we permanently removed the shunt. I was supposed to stay
2 days but had a nasty reaction to anastasia, I was a puking
machine with an intense migraine, so I was there 5 days, got home
by Christmas Eve.
Step 3
We completed on January 19th, the shunt was permanently removed.
Dr. Grady had told me he would shave a small quarter size patch of
hair, when I woke up and felt my head and noted 3 inch by 3 inch
area of hair missing on the right side of my head I knew immediatly
he had run into trouble getting the shunt out, which he confirmed
when he came in to see me. The shunt was completely nonfunctional,
he cut the top off, pumped out gobs of protien, finally found some
cerebrospinal fluid, part of the shunt was sutured to the inside of
my head, caked in protien and GUNCK, had to plow thru that, then
again at the neck area he again had to cut the shunt to pump out
more protien.. Of course I had the same reaction to the anastesia
but it only lasted 2 days this time.
This is the kind of neurosurgeon this man is..as he was explaining all this to me I started to vomit, he held my head while I was getting sick. And handed me a wash cloth when I was done. I dont know too many doctors that would do that for their patients!!!!!!!!!!!! I thanked him profusely, he blushed.
The next day I told him I was under the impression that the body would take approximately 60 days to clear out the excess protien, he said "Ordinarily yes but let's take into account the head start I gave you in the OR, and say 45 days" He also has a great sense of humor. I dont think I can adequatly put into words how highly I think of Dr.Grady.Humanitarian keeps popping up , but it doesnt cover it all.
This shunt removal MAY be the ticket to me feeling more human, not having my neuro crash's all the time...and then again it may NOT. I'll know in 60 days. After feeling shitty for 6 years ,waiting 60 days is like nothing. I have been told not to get my hopes up but... how can I not. If this isn't the ticket...I'll have to start searching for something else, like a ploitician who approves stem cell research!!!!!!!!!!!!!!!!
Keep your fingers crossed for me I'll let you know what happens in 60 days.
Update: 1 April 2007
Well I'm past my 60 day post shunt removal mark, and I'm estatic to tell you the surgery was a complete sucess!!!!!!!! When I say sucess I mean the removal of the shunt has relieved me from feeling like I had the flu 24/7, 7 days a week for the past 5 years. I cannot put into words how wonderful it is to wake up and not feel like total crap every single day. Now, I still have my other deficits, you cant have 2 central nervous system bleeds and not have problems. The low BP, seizures, balance problems, HEADACHES,fatiques..although I have noticed a slight increase in my energy levels. They used to be a 3, now they are a 5.
I have people to thank. First and foremost my psychiatrist Dr.Bell, you always believed in me that something was truly wrong and stuck by me when other doctors thought I was nuts. I owe you much more than I could ever repay you. When I saw Dr.Bell after the shunt removal he said "A LOT of people owe you a very big apology". I owe Dr. Bell my sanity and much more.
My neurosurgeon, who always believed that "something" was wrong but didnt know what, but kept encouraging me to push the neurologist to keep testing until they found it. This shunt thing was a "first" for him too and he was very pleased at how well Im doing.
Family, who always were there for me, Liesl, Sue W., MaryLee, Dave L, Sandy, April, THANK YOU!!!!!
The theme to this update is "You live in your body, not the doctor, if you know something is wrong DONT GIVE UP" I had 1 neurosurgeon, and 3 neurologist tell me "it's all in your head" "you must be depressed" "do you have a psychiatrist" "the MRI'S dont show anything". I thanked them for sharing and like Donald Trump FIRED THEM, until I found the neurologist who knew right away incidently exactly what was wrong.NEVER GIVE UP, I DIDN'T!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
Update: 5 September 2007
Well despite the success of the shunt removal, the
evil "we dont have a clue" decided to resurface and ruined my
summer, landing me in the hospital twice.Tons of tests including an
angiogram all to be told what it "could" be however we are not
sure, and no change in therapy. It could be:
1) T.I.A
2) Complcated migraine
3) Seizures
Still no alteration in therapy, just sent home.
Well of course I got no better at home just within a week went back to "circling the drain". However there is a bright spot, the third time may be the charm. Same symptoms, stood up, entire right side went numb, got severe headache, neck locked, nauseous, husband called 911. Because of where we live the ambulance could only transport me to a small community hospital where I resided for 4 days. Having some tests ordered by their neurologist I have never had in the 7 years since the avm burst. In esscence he didnt miss a spot on my head.. He reviewed ALL my records (must have spent all Labor Day weekend doing that) and questioned me extensively, examined me head to toe. His conclusion was: he felt my symptoms fit both migraine and seizure and he was going to treat both by weaning up my Topomax. Was going to call my neurologist , inform him of his impressions, and ask him to continue to increase the Topomax until the symptoms either decrease or completly subside.
Like I said in my last update," Never give up"...this may/may not work BUT I have been assured there are many other seizure drugs that they can add, and this neurologist was very certain I will regain that feeling I had when my shunt first came out. He called this "a roadblock" that we can move.
Thank YOU, MaryLee, Sandy D., Sue W., Liesl, Dave for hanging with me when the going was going down the drain...and Thaye I'm so grateful your back.
Update: 12 October 2008
Phew, well this certainly is the last thing I would be putting in my narrative. Last Sunday my husband had a massive heart attack, came downstairs to the kitchen, white as a sheet, dripping sweat, said "Im dying, there's an elephant standing on my chest". Being a cardiac nurse I knew exactly what to do, however this was not just a patient, it's my husband. I was shaking so hard I could hear my teeth rattling. To make a short story shorter, his main artery was 100% blocked, they opened it with 2 stents, he also has blood clots in other arteries, so he is on blood thinners. He got to the trauma center within the "Golden Hour" so even tough his attack was massive they where able to regain some heart muscle function with an intra aortic ballon pump. The cardiologist fully expects him to continue to regain muscle function. This was the scariest thing that EVER happened to me in my whole life. Even when I had my brain hemmoraghes I was scared but not like I was watching my husband dying on the kitchen floor(,I thought at one point I was going to lose him, eyes rolled back in head, couldnt feel a pulse and he wasnt talking to me) I remember Bob being scared in the ER when I had the brain bleed, I said to him " You look awful, Im the one whose sick", he said "Im scared to death your going to die". They had given me a substantial amount of IV narcotics in preparation for the angiogram, so I told him... " Oh bullshit, Im not going anywhere"
How people gather around to help out during a traumatic time still amazes me. I normally cannot do certain things and HAVE to nap for an hour daily or Im worthless at night. ADRENALINE does wonders for a lot of my deficits. I purposely stayed busy all week, no nap, hit the bed at 10:00pm and feel right asleep. I knew if I didnt stay busy what had happened would hit me like a ton of bricks and I would be worthless to my kids and my husband. Bob is home now and Im doing something I have dearly missed for 8 years.... Im his private duty nurse, and Im loving it. Im sure at some point things will slow down and I'll have a chance to let it all sink in and have a very well deserved cry. I think I have earned it
.Update: 23 May 2009
Well the past 22 months have been hell.GI hell that is. Since my avm is in my brainstem, and the brainstem controls digestion, I thought it was responsible for the stomach problems. I have been told by my GI doc, my neurologist and my neurosurgeon that's not the case.
To make a very long story short, I developed severe upper right quadrant pain, which was aggravated by eating or changing position.Got to the point where I now live on liquids. Was hospitalized for 18 days trying to find the cause of this, and again down in the city for a week, enduring some horrible tests trying to find answers. All of my tests have come back normal. One one hand that's good, but frustrating as we don't know why I'm in incapacitating pain and can't eat, it's had me in bed for weeks at a time. This obviously made my deficits from the avm worse.
They finally sent me to a pain specialist to get a nerve block (permanent one) First 2 failed completely. Next plan of attack is a walking epidural, but have to have an MRI of my thorasic spine first. It pop's up with a "SYRINX" in the T 5-T 7 region, pain doctor said I have to be evaluated by a neurosurgeon....been down that road before, completely trust Dr. Grady. GI doc is surprised and hopeful that this will solve my stomach problems. A Syrinx is a collection of fluid in the spinal canal which press's on nerve's and cause's pain. My husband and I go to see Dr. Grady, I'm nervous and hopeful and scared all at the same time. Which means Bob get's fussed at the whole ride to the hospital and swears he's sending me home on the train .I start crying (works EVERYTIME) that I'm being nasty because I'm scared to death, I'm terrified of having spinal surgery and ending up paralyzed. Now this is very much true, but it does explain why I'm fussy. Now Bob understands and feels sorry for me and does his best to reassure me that Dr. Grady is the best and will take great care of me.Did I mention that Dr. Grady sits with you, explains everything, makes sure you understand what he told you, takes all the time you need to get your questions answered, brings up issues about your diagnosis that you wouldn't have thought to ask,showed us the "Syrinx on the X-ray machine. When you are in his office it's like you are the only patient he has!!!! Did I mention he is also GORGEOUS????? Well Dr. Grady said my Syrinx is very small, is definitely NOT causing any of my problems and there is no reason to do anything about it. Told me it is very small and gave me a 99.9% guarantee that when they do next years MRI of it, it will be exactly the same size., because they do not grow when they are this small. Said to go back to pain specialist and get the walking epidural, he would send him a note of recommendation. AWESOME, no spinal surgery!!!!!!
Now we are right back to where we started, masking pain that we don't know the cause of. What frustrates me the most is the ONLY test they have not done is a simple 15 minute diagnostic laporoscopy. I had my gallbladder out when I was 21 and any surgery leaves scar tissue, which could be causing my problem!!!!!! I have been round and round with the GI doc and the surgeon about this. Surgeon doesn't want to do the laporoscopy because:
1)They have no positive tests to warrant doing the lap.....you don't need positive tests to do an appendectomy either!
2)They don't think scar tissue is the problem.....I DO and so does my soul-sister and former OR nurse MaryLee (she has seen it hundreds of times in her career)
3)I'm a complicated case, i.e. post avm, migraines, seizures, neural mediated hypo tension......I have had those problems for 8 years, they are not going to get worse or better, they are STABLE...NEXT!!!!!
We are talking about a 15 minute procedure, not open heart surgery. Now they want me to see a surgeon in the city on consult (at the hospital where they trained.....cute, I smell a rat) If he agrees I need the laporoscopy then they will do it. I told them I also worked in the city and know some very prominent surgeons, I will do the consult with them to make the decision "even" not one sided. The looks on their faces...PRICELESS! However they did agree.
I loved being a nurse and standing up for patients rights. I hate being the patient, the nonsense gives me a headache. My heart aches for patients with no medical knowledge, I can only pray they find compassionate doctors. And from the stories I have read on this site that doesn't happen too often.
Discussion, comments, or questions: Kim Rueffer
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