TALK TO A
Established April 15, 1995
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Dave and Terri
Photograph taken at their daughters wedding in 2005
Background, 48, married to my best friend Terri (1 Fox of lady), Have 3 wonderful children all grown up and moved on, and 2 very very precious grandchildren. I must also mention my guardian Josie a pure white German Shepard who watches over me constantly as if she were my mother.
24 March 2006
On my drive home one afternoon my vision went as I was driving up the road. Mind you I live in the country so thankfully I was the only one on the road at the time. It all came back within seconds but really spiked my hair. The headaches increased in intensity and after telling my wife she took my blood pressure and sure enough it was out of wack again.
The next day I drove very slowly and more deliberately to work and as the days went on I became more confident that the visual episode was just a fluke. I made an appointment with my doc about the blood pressure and headache and she said to double my Toprol and come back and see her in six months.
Wrong, by near the end of January my wife had called her to talk about these headaches and to issue her concerns about my health. She thought I needed a sleep test and CT scan. The doc agreed to the sleep test first but did not think I needed a CT scan. Well my wife convinced her and I was schedule for Thursday and Friday of the next week.
My wife must double as my guardian angel as the sleep study showed I had sleep apnea and the CT scan showed something and the radiologist told my doc to get me a MRI. OK, so the next week was my MRI and then over to the doctors for a report. By this time it is February and this headache is still going strong.
When the doctor came in I knew something was wrong as she had a hard time making eye contact which is not her norm. She said that they found something and I needed to get an MRA, MRV and then see a Neurologist, I said well lets just take this a step at a time, I will come back here after the test and she can tell me what it is and we will discuss it, then she said by then I will send you to a Neurosurgeon. What do you mean I said, she explain only that I was a TIME BOMB.
Well we did the MRA, MRV in the next 2 days and then were contacted by one of my doctor's staff that I had an appointment with the local neurosurgeon. I said what is this for and the doctor's staff read me the report about something called AVM??? I was at work mind you at the time. Well OK what is AVM so I did a search and it came back Arteriovenous Malformation after reading several pages I remember thinking (rut rowe)I am in big trouble now, but gave me a little explanation for the life I have had.
Things made more sense as to the headaches and Migraines that all the doctors of my life said were Stress or Sensory related. My visual disturbance was probaly also related and not a flash back from my wild and crazy youth. The neurosurgeon sent me for an angiogram and then back to see him. He told me I had 2 AVMs one in each occipital lobe and he could not do surgery in Williamsport. He made me an appointment at Penn State Hershey.
The angiogram was a very bad experience for me as when they punctured my groin the pain was intense to say the least. Apparently not enough pain meds as soon as I screamed the pain went away and my throat started feeling very thick. As they shot the dye into each different artery I felt as warm air or gas was escaping from my head. Did anyone else ever feel this? First shot out my ears, then around my teeth, then around my eyes. Or was this just my imagination? Maybe I just have a leaky head I know what I felt. After it was over I remember the long long wait flat on my back.
New development this week my doc says I have polycythemia vera also. Over production of red blood cells and it could also lead to clots and strokes.
Now I am schedule for an embo in Hershey in the beginning of April. Another doctor in Philly thinks the Gamma knife would be a better option. From what I read embo is just the beginning of many that rarely end this nightmare, and gamma takes so long. They think it has not bled yet, but then I read that if you don't have the CatScan within 2 weeks they can't really tell.
I have no disability at this time except for my 4th month with this headache that Hydrocodone dulls to a 2 or a 3 at most. I am use to headaches as I have had them my whole life and don't know any different.
After reading the narratives on this site I have no clue what to do but pray for some guidance. Anyone have bilateral AVMs? I will post my outcome someday in the future. Thanks for having this place to vent.
Update: 26 April 2006
First of all, thank you to everyone that has supported me with prayers and encouragement through this life changing disaster. My sister came home from San Diego and my brother and my son flew in from Nevada, and with my wife, daughters, grandchildren and all the family around the weekend before I felt ready to get this done.
My decision though reluctant after talking to 5 neurosurgeons took me to Penn State Hershey Medical Center on April 5 2006. All the people were very professional and treated me much better than I expected. The doctor had told me he could do an embolization and fix this, possibly in one session. Well, as I came too, later that day I was told it went well, BUT I now needed surgery. Not a big surprise for me after reading all that I had read from fellow survivors and web page after web page. He couldn't block all the small distal feeders and now needed to remove both AVM's.
My poor wife, I pray I may someday repay you for taking care of this miserable soul. For comforting and nursing me back to close recovery. I know God is watching you and you will be highly held to all in the next earth age. I feel you have saved my life many times in the last 2 weeks even though you don't think so while maintaining the house and working full time.
Well, I'm here to tell you what a mess I was mentally and physically for the last 2 weeks. After getting off morphine, and an assortment of other pain meds I am sure that the drugs are the biggest pitfall in this nightmare although you cling to them for relief that never comes. Good news is that the headache that started this nightmare that lasted since Dec-9-2005 is gone. I still get pressure behind my eyes and this feeling of a piece of rebar jammed up my neck into my skull. Glad that's coming out in a few weeks. My vision has suffered a little but I think I may just need new glasses. My neck keeps getting very stiff and uncomfortable.
I go for a pre-surgery, MRI and doctor appointment on May 2 and the Craniotomy is schedule for May 8. I have 2 weeks left to repair this weakened body and prepare it for a major assault.
Thanks for all the support and I will pray for all of you.
Update: 10 May 2006
Monday May 8 2006 I had my craniotomy on both occipital lobes that lasted 11 hours. The AVMs are now gone. I have a big horse shoe scar on the back of my head from ear to ear I have some numbness on my left side, most in my finger tip and a few spots on my abdomen. I have some peripheral vision loss close to the center of my nose which look like weird stuff in this type; hope you can read it. The sunlight hurts my eyes.
My wife, sister and youngest daughter said I looked like an alien with tubes coming out my nose, mouth swollen face and wrapped head. Around 9:30 PM I started coming to in great pain all night but as the day wore on Tuesday I got better and better and knew I needed to move. My wife and sister took me on small walks and after they left that night I slept about 3 hours and then started to trudged the halls myself. When the doctor arrive this AM day three I stated my progress and they sprang me.
The 2-hour trip home was a hard one for me but I made it and I am home again. Doc says take easy for about four weeks and come to him for follow-up. No driving until after that and no lifting over 10 pounds. And he thinks about 8 to 10 weeks and I should be go to go.
Thanks Kim for the extra support , how did ya know were I was at that minute.
I will keep you all in my prayers.
Update: 17 May 2006
Had hoped to write again sooner, but my eyes are getting worse for now, very hard to look at computer or tv. Everything is scrambled and multiple images. But it is still early and the swelling and pain is real bad.
Just wanted you to know I was thinking about all of you and will write more soon God bless you all for the emails as my sister reads them to me everyday.
I sure pray little Paddy is OK.
Update: 11 July 2006
Just an update to let you know I am much better. Follow up went well. Vision is close to normal. Although a very good friend of mine said normal is only a cycle on a washing machine. Darn near choked to death on my hamburger from laughing at that one Kim.
I returned to my old job today and I never thought I say this but it felt good. Three months post embolization, Two months post craniotomy. Honestly a little more crazy but all in all I am getting better fast. Still have a few issues and a very bumpy head, but nothing that I have deemed serious.
Its funny how we all have missed so much time just getting=20 caught up in the normal day to day, Then a bomb drops on you. I will never take another day for granted.
This has been a very humbling experience; I have met a lot of wonderful, encouraging, informative and caring people on this site. You will always be my special friends for life.
Thank you and God bless ya all.
Update: 24 August 2006
Well a good friend of mine told me, "Returning to work to soon is only setting the stage for a major crash" Sure enough...I hit the wall at about 100mph, Fell off my rocking horse. Slipped on a banana peel or whatever trips your trigger. Started out as some "what I thought" manageable visuals and0 nasty headaches. Stuff like letters, numbers, objects and people, fixed in space or sometimes floating thru the air. Kind of like the reflections one sees of junk on your dashboard on certain days.
Then the darkness came. Like standing in the barn and some one slid the doors shut. Total black. First time it happened I drop to my knees and poke myself in the eye as I did not know what had happened. Thank God I was home. Since then it has happened 6 times, always late in the afternoon. The blackness lasts about 15 to 20 seconds followed by loss of feeling on my left side. Feeling, so far, returns usually in 1 to 4 hrs. After the last transport to the ER, I finally agreed and back to the Neuro we went.
I was having occipital seizures that were causing occipital strokes. After examining my incision because of a so-called cyst development he also told me what that was. A screw had come loose from my bone flap and he could remove it. NOW I was not going to have any part of that nonsense, as I liked the idea that I now have an excuse when I do something stupid. A buddy of mine always told me I had a screw loose, and now I know its exact location.
He sent me off to see the Neuro-ophthalmologist and he decided to pass me off to a neurologist. So the neurologist changed my meds from Dilantin to Keppra and sent me for an EEG.
Well by the end of the 1st week of the Keppra my head was ready to explode I was taken off it and changed to phenobarb. The Neurologist decided to get a MRI for the other problems as the headaches continued. After seeing the results from the MRI the Neurologist passed me back to the Neurosurgeon who quickly had me scheduled for an angio. I call this passing the buck, as this is what you do when you don't know what to do.
Don't know exactly what all happened during the angio, as I must have blacked out during a portion, that was very very painful. But I do remember him telling me to hold my breath twice. Then someone saying oh shit and then a foggy memory or nightmare of him showing me something on a big monitor of a very angry looking AVM. Thought it must have been a bad dream until later seeing=20 Terri fighting back the tears next to my hospital bed.
Doctor came in and told us it is in the left occipital = lobe. Started talking about embolization again, and I cut him short on that, and then Terri talked with him and set the 2nd craniotomy date for Sept 25. They gave me some sort of narcotic and the next thing I remember is being at home last night. I don't know what I am going to do now... I can't take another surgery so soon.
Update by Terri Lambert: 21 October 2006
David, as you know, had surgery on 9-25-06 for the removal of a left occipital lobe AVM. They had difficulty from the start. First, intibation was a problem, David ended up aspirating fluid into his lungs. They put him into=20 a coma for 6 days. He had terrible hallucinations that were unreal. When he came out of the coma he thought he was on a ship. He became violently ill. He had stomach bleeding from who know's what.
David was in the hospital for 2 weeks. He has not regained his vision enough to use a computer or watch TV. He is having a lot of pain and is taking a lot of medication. We have to go to the local hospital once a week to have his sodium level checked. Apparently some surgeries to the brain cause it to suck all of the sodium out of your system. So he was in hog heaven for a week eating all of the cured meats his little heart desired. But he then swelled up like the Michelin Man from all of the salt. So his family doctor had to step in to protect his heart. It is like robbing Peter to pay Paul.
We are now scheduled to return to the surgeon to have a CT scan on 10-31: to check for hydrocephalis. So he may need a shunt.
David will write to you when his vision is better. He really appreciates all of your prayers and support. He made some dear friends through this family.
Thank you all.
Update:18 March 2008
Lot has happened since my last update. After suffering a total of 7 occipital stokes since my 1st craniotomy, on 9-25-06 they removed another AVM from my left occipital lobe, This one being much deeper in the gray mater. As you can read in my last update from my wife all didn't go as planned. My recollection was one of a nightmare that I don't wish to describe on this site. I came out of it all in mid December 2006 and besides missing some time for angio's and doctor appointments I have been back to work full time ever since.
Today post surgery I am clinically blind to the left in both eyes and epileptic. I can no longer drive due to my eyesight. I can see straight-ahead just fine, so it does not challenge me at work. Getting there and home does provide my wife quite the challenge as she also has a full time job.
I have ordered my doctors to wean me off the multitudes of medication that became my life after the 3 brain surgeries, and as I do the angrier I get at medication and drugs.
At the moment Effexor withdraw is my enemy.
They started drawing the dosage down slowly in January until I was completely off of it by March 1.
Knowing our family is so vast, Can anyone tell me how long will these brain shivers be so terrible?
Thanks to all
Update:7 March 2011
This update is from Terri Lambert, wife of Dave Lambert author of "Two Bi-Latteral Occipital AVM'S". On December 17th Dave passed away from cancer. His wife request the family be informed. Please keep Terri in your thoughts and prayers.
This update was submitted by Kim Rueffer
Discussion, comments, or questions: Dave Lambert
=A9 Copyright 2006 Dave
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