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Discussion Starter · #1 ·
I just had a spinal tap done and it hurts like hell. Actually, it was 3 days ago and a 4 hour flight away and the pain is still unbearable. I can't sleep. What a surprise. The MRI confirmed that I do not have a brain tumor like the neuroogist lead me to believe, but rather, something even more interesting and obscure, of course, nothing is ever easy. I have a thickening of an artery, which has grooved into my hypothalimus and seems to pressing on important nerves. Of course they need to do 5 or six more painful tests before they will give me anyhing more concrete. They are testing me for chronic menengitis as well. The bottom line is, I am looking at brain surgery. Who knows, maybe I will get my life back. It sure as hell can't get much worse. My GI talked with my neurologist and they are working out a new medication plan for me. They hope to handle my constipation and vommitting by treating the nerves. I actually haven't been clued in on this wonder plan yet. I fly back out again at the end of the week. Meanwhile, life as normal for me. I have lost another ten pounds and etremely constipated with smelly gas, I am projectile vommitting , and my head aches, so does the back of my neck and the bridge of my nose.The good news: The end may be near. The job that I gave up after my FMLA ran out is holding out for me and all of my coworkers donated paid time off.plus I am not in the HospitalPLuS I am not in the Hospital------------------Bridget
 
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Discussion Starter · #2 ·
Hi, My heart just goes out to you. I just can NOT imagine all that you have been through. My little pain now pales in comparrison. I hope they can get you all better. The doctors of today can do wonders. I bet they can remove that tumor and you will make a full recovery. It is just getting there right. Anytime you need to vent you have a shoulder to vent on. We are hear to listen. And like you said one good thing...you are not in the hospital. Try and keep some faith. It must be hard too. So anytime you need to self indulge we are here. Dar
 
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Discussion Starter · #3 ·
Thanks, I appreciate the response. I am so wired, I have to get some sleep; the sun will be up soon. I want to be in bed before my fiance gets up for work, I couldn't take the pitty at this wee hour. Remember, no pain is a small one. All of us here have real pains and aches, worries and concerns. One day at a time,ok., baby steps through the days.
 
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Discussion Starter · #4 ·
Biddy-I am so glad to hear that your doctor let you know what is going on. I have thought about you many times in the past week, and wondered if you had found out anything from your doctor. Although things are not as good as they could be, I am glad for you that it is not a brain tumor. I hope that your doctors can find some medications that will make you feel better because I hate to hear that you are so sick all the time. You are so right when you say at least you are not in the hospital. I would be glad to be at home too, if I was you. Try to relax and keep a positive attitude (easier sid than done, I'm sure). I will be praying for you. Let us know when you find anything else out.------------------Kayla
 
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Discussion Starter · #5 ·
Biddy - just a quickie - I need to go lie down - I wanted you to know that while I've been laid up, I've been praying for you quite a bit - you've been on my mind and I hope it all turns out OK. Please keep us posted, OK? I am sooo glad you seem to be getting some much needed answers to your suffering - hopefully and prayerfully it will be something surgery or meds can cure!! Hugs to you,Kathy
 
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Discussion Starter · #6 ·
Well so much for my little trip home. I was rushed to the emergency room twice. Monday, I went in around 10pm and stayed till around 2am. Thee were complications wit my spinal tp. I have never felt such pain before in my life. There wasn't an anesthesiologist on so they shot me up with demerol and phenegan, and ran three ivs with caffine into me. They sent me home with more drugs. The next day I called my doc down in Seattle and he acted surprised that I was back in Alaska. I specifically asked him if it was ok for me to fly. I am so mad. Well he told me to go back to the ER, I spent 4 more hours there getting a blood patch done. Well I am back to Seattle again tomorrow. Hopefully I will get some more answers.
 

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OH....Biddy, Just when we thought everything was pointing towards better tomorrows. I was under the impression that after a spinal tap one had to lay still for quite a while. Is this no longer true? Where did your doc think you were going?Hope that caffeine works for you and that the headache will be gone. Take care of yourself. You know that you are in our thoughts and prayers. Keep us posted.Rose
 
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Discussion Starter · #8 ·
Rose, after the spinal tap was told to lay on my back for the next 24 hours. On Sat., the next day, I was experiencing pain that I thoght was abnormal, I called the hospital and was referred to my doc's answering servicel; no call back! On Sunday, it was Easter, and I wanted to go home, bad choice! I have no idea where my doctor thought I was going. He Knows that I live in Alaska, I am so frustrated! I had the blood patch, so my headaches have subsided, but all the retching I am doing is making my lower back burn and throb. I am afraid that the flight back will do me in. I hate going to doctors' appointments. One would think that I were used to them by now, but nope not me. I am scared and overwhelmed and confused. I don't trust doctors, any of them. I am leary of having surgery done, my neurologist was singing a different tune about it the last time that I saw him. So I am not sure what position he is in at all. I don't know what to think.------------------Bridget
 

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Bridget - I can't relate at all to your ordeal, but I'm so sorry that you have to go through all of this! I am very happy that it turned out not to be a tumor (a college friend of mine had a tumor at the base of his brain and almost died... long story! but he's ok now).How are you feeling today? That's great that your employer and all your friends there are so supportive. Finding a good and understanding employer can be just a difficult as finding a good doctor.Let us know how things went in Seattle. I'll be praying for you!
Ty
 
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Discussion Starter · #10 ·
Yeah, - I can really relate to finding that good employer thing right now!Biddy, my heart goes out to you. If you had the spinal tap last week, you MUST have the results by now. Please let us know, OK? What are they doing for you today, and where are you? (It's hard to keep track of you, girl, between Alaska and Seattle). I understand how NOT fun it is is suffer and have nobody really understand. Hang in there, Bridget. We're all pulling for you!Hugs, Kathy
 
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Discussion Starter · #11 ·
OH biddy, I can't begin to understand what pain and frustation you are going through. I know how frightend you must feel not knowing what might happen next. I do know that god is on your side and you will make it though this. I will pray for you and a speedy recovery. Its hard but take it one step at a time like you said. If you have the strengh write down how you feel and get some of the anger out it might help. I know it helps me. Love maryt.
 
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