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Chiari Malformation and upcoming surgery
I'm not sure that I have just one question. In fact, I think that I am just filled with so much anxiety and frustration and need to talk with other who have had or are having similar feelings. I was diagnosed with Chiari about 2 months ago, although I've been having 'odd' symptoms for a couple years that would come and go. What finally led to my diagnosis was a long bout of 'vertigo', nausea, odd sensations in my left hand, severe lightheadedness, extreme fatigue, bumping into walls (which I would laugh at, at the time),etc etc. After a few months of getting the run around, I finally got a DR to order an MRI with contrast and there it was/is.
My surgery is on the 18th of March. I am terrified of how I will feel when I wake up, etc. I have had 4 other surgeries (all abdominal), and I never vomited after waking up....will this be different? Will I have a brace on my neck? Will the pain meds/muscle relaxers help with the stiffness? I think my greatest anxiety is feeling 'stuck', as I am an extreme claustrophobic. I can't stand the idea of waking up with a brace on or laying too flat, or vomiting. I know I will have pain. And strangely, I do not fear the pain at all. I expect that. I know it's coming. It's all the other things that i don't know what to expect that scare the bajeezus out of me.
Can anyone help? What was your experience like? How did you feel post-op? How long before you felt able to get up and move on your own? How long before you could move your neck at least a little? Did you vomit? Any and all suggestions/support are so VERY appreciated. It's coming up fast and I am getting more and more anxiety as the days pass. I can only imagine how I will feel the day OF.
My surgery is on the 18th of March. I am terrified of how I will feel when I wake up, etc. I have had 4 other surgeries (all abdominal), and I never vomited after waking up....will this be different? Will I have a brace on my neck? Will the pain meds/muscle relaxers help with the stiffness? I think my greatest anxiety is feeling 'stuck', as I am an extreme claustrophobic. I can't stand the idea of waking up with a brace on or laying too flat, or vomiting. I know I will have pain. And strangely, I do not fear the pain at all. I expect that. I know it's coming. It's all the other things that i don't know what to expect that scare the bajeezus out of me.
Can anyone help? What was your experience like? How did you feel post-op? How long before you felt able to get up and move on your own? How long before you could move your neck at least a little? Did you vomit? Any and all suggestions/support are so VERY appreciated. It's coming up fast and I am getting more and more anxiety as the days pass. I can only imagine how I will feel the day OF.
COMMUNITY LEADER
Hi and welcome back....thanks for the update...I hope u copy and paste this into a journal on ur profile page....that way u can continue to add to it and all will be in one place and easy to locate : )
As for the taste, as GEMOM mentioned u do have to be aware of thrush, it is easy when they intubate u as they can scratch the lining of the throat....
But it can also be from meds, or a CSF leak...could be y u r still dizzy....
I hope u r moving ur neck and walking....this early in my recovery I used a walker and my DH would take me to a park so I could walk, he was with me so no worries about a fall etc....
But do get out so u feel better about this slow process of healing.
Hang in there : )
I had a bad taste in my mouth too after surgery and the inside of my mouth turned yellow. Turns out I had thrush from all of the intravenous anitbiotics they gave me during and after the surgery. You might want to get checked for that. The medicine is a nasty yellow swish, but it over in a few days and really nice to get your sense of taste back.
Oh, one more thing. Still not cleared for driving since I still get random dizziness, and still not cleared for anything more than very light exercise. So I'm fighting a little depression, not being able to get out and about as I'd like, but I'm trying to just rest and enjoy it while I can. It won't be long before I am back at work at least part time.
Well, I've been MIA for a bit while I went through the worst of the recovery. My surgery was on March 18, and all went well. My surgeon ended up having to remove only part of my top vertebra, which he hadn't actually expected at all. Things had already progressed since my MRI only a month prior. So, there was more compression and further herniation than he expected, but was able to perform as planned, with duraplasty/skin patch. I must say, that none of the experience was nearly as dreadful as I expected, to my VERY pleasant surprise. I was scared beyond words while waiting, but they were very kind and supportive. They ended up giving me a regular IV line, as well as an arterial line into the main artery in my wrist to monitor my BP more closely, as it tends to be low. That was really the only thing that I didn't expect. As they were wheeling me down the hall, they injected something into my iv to 'make me forget some things'..and boy did it ever. I've had many surgeries for various reasons, and this is the ONLY time I don't actually remember the OR. All I remember is the big round light above me (not on yet), and the oxygen mask being put on my face, and lots of people. I don't remember them speaking to me or asking me questions or to count or anything at all. Next thing I know, I'm waking up with a mild headache, but fairly comfortable.
I was kept comfortable with dilaudid every four hours into my IV, as well as Zofran for nausea...but I don't actually recall having any nausea except one time while they transferred me from recovery to ICU. I didn't actually hurl (YAY!), but I held onto that pan for a while just in case. My pain was managed with dilaudid for about 12 hours. This is where things took a little turn for the worse and I became very agitated. The Dr doing rounds (not my surgeon) comes into my room and says he's discontinuing my IV meds and starting me on oral meds. Less than 12 hours after surgery!! I hadn't even been able to eat yet, and expressed this concern to him. I asked him why. He said that he was concerned about my BP dropping into the 70's after my pain med injections, etc. BUT that's what the BP CUFF said...NOT what the arterial line said. The arterial line measured my BP at a steady 98 or so...which is actually higher than my normal BP which is usually in the 80's. Which was why they put the line in in the first place. I said call my Dr, he will tell you this is normal for me! I can't take pain meds on an empty stomach. Can't you at least give me one more dose through IV, and I'll try to get my appetite going, and eat something so my NEXT dose can be oral? He was having none of it. He also wanted to move me out of ICU that day. I said 'what?? But you just said that my BP is dropping and you're about to change my meds and still can't eat, and I'm not even 12 hours post op. How does this make sense?" My surgeons PA was with him THANK GOD, because he spoke up on my behalf and said "I'll call Dr Lozanne about her BP and see what he thinks. But until we see it stay up, maybe we should keep her here one more night" YOU THINK??? Also, I was still wearing oxygen because mine kept dropping during sleep. I remember, in my drug induced stupor, telling this Dr that I wanted him out of my room and he was not allowed back in. LOL.
Anyway, I saw my surgeon the next morning, he made some adjustments to my oral meds so I could eat, etc, had me moved, but LATER that day after they were sure I would respond well on oral meds and my O2 stayed up. He had a good chuckle when I told him the other Dr was not to return or I would through my kidney pan at him. haha. Anyway, other than that, all went very smoothly, and my recovery was very fast. I went home on the 5th day, doing fairly well. I am now 4 weeks post op, ALL of the pressure in my head is gone, the tinnitus, the numbness in my left arm/hand, etc. I still get dizzy at times and bump into things, which my Doc says is normal while the swelling goes down and things return to normal. All in all, I am doing very well and am so glad I had the surgery. Even my worst day NOW, is better than my BEST day before.
I still take 2 doses of vicodin a day, as well as two doses of Valium for muscle relaxant. I am still very stiff and sore when I wake up, and it sets in again at the end of the day. But That is less that half of what I was taking before, and some days I take only my morning dose.
My one question is...I've noticed a REALLY horrible bad taste in my mouth. Very sour and bitter, that wasn't there before. Is this normal? Caused by medication? It's horrible and it seems like nothing gets rid of it.
I was kept comfortable with dilaudid every four hours into my IV, as well as Zofran for nausea...but I don't actually recall having any nausea except one time while they transferred me from recovery to ICU. I didn't actually hurl (YAY!), but I held onto that pan for a while just in case. My pain was managed with dilaudid for about 12 hours. This is where things took a little turn for the worse and I became very agitated. The Dr doing rounds (not my surgeon) comes into my room and says he's discontinuing my IV meds and starting me on oral meds. Less than 12 hours after surgery!! I hadn't even been able to eat yet, and expressed this concern to him. I asked him why. He said that he was concerned about my BP dropping into the 70's after my pain med injections, etc. BUT that's what the BP CUFF said...NOT what the arterial line said. The arterial line measured my BP at a steady 98 or so...which is actually higher than my normal BP which is usually in the 80's. Which was why they put the line in in the first place. I said call my Dr, he will tell you this is normal for me! I can't take pain meds on an empty stomach. Can't you at least give me one more dose through IV, and I'll try to get my appetite going, and eat something so my NEXT dose can be oral? He was having none of it. He also wanted to move me out of ICU that day. I said 'what?? But you just said that my BP is dropping and you're about to change my meds and still can't eat, and I'm not even 12 hours post op. How does this make sense?" My surgeons PA was with him THANK GOD, because he spoke up on my behalf and said "I'll call Dr Lozanne about her BP and see what he thinks. But until we see it stay up, maybe we should keep her here one more night" YOU THINK??? Also, I was still wearing oxygen because mine kept dropping during sleep. I remember, in my drug induced stupor, telling this Dr that I wanted him out of my room and he was not allowed back in. LOL.
Anyway, I saw my surgeon the next morning, he made some adjustments to my oral meds so I could eat, etc, had me moved, but LATER that day after they were sure I would respond well on oral meds and my O2 stayed up. He had a good chuckle when I told him the other Dr was not to return or I would through my kidney pan at him. haha. Anyway, other than that, all went very smoothly, and my recovery was very fast. I went home on the 5th day, doing fairly well. I am now 4 weeks post op, ALL of the pressure in my head is gone, the tinnitus, the numbness in my left arm/hand, etc. I still get dizzy at times and bump into things, which my Doc says is normal while the swelling goes down and things return to normal. All in all, I am doing very well and am so glad I had the surgery. Even my worst day NOW, is better than my BEST day before.
I still take 2 doses of vicodin a day, as well as two doses of Valium for muscle relaxant. I am still very stiff and sore when I wake up, and it sets in again at the end of the day. But That is less that half of what I was taking before, and some days I take only my morning dose.
My one question is...I've noticed a REALLY horrible bad taste in my mouth. Very sour and bitter, that wasn't there before. Is this normal? Caused by medication? It's horrible and it seems like nothing gets rid of it.
COMMUNITY LEADER
Hi...yes, once off the morphine I was fine....not sure why this happened as I had it b4 for other surgeries too, except I have EDS and how a med reacts in our system can change...I also can no longer have oxycodone....I had that for pain after one of my surgeries and am now told the reaction I had is an allergic one...???
The had me on all sorts of post op meds, even one to prevent blood clots...I had a Foley cath, and some type of compression stockings that would inflate and deflate electronically to keep the circulation in my legs....
The bed was also moving ever so slightly every so often....
I do not recall really feeling sick...just knew when I was going to vomit and even that to me did not remind me of ne other time that I had...it was different...could have been the meds and all I was under that it was not a bad ordeal I was not heaving...
No worries....
It is normal to be nervous and scared....did u read my journal entry for my surgery...??...u will read I was also scared...
U r not alone : )
Ok, so you only got sick because of the Morphine? I am so worried about throwing up, especially with all the neck pain and inability to move about freely. I have had 4 other surgeries (abdominal), and been on morphine pumps...and so far, have never vomited. I hope that this is the same result. After you were switched to dilaudid, the vomiting stopped? Did they give you meds to help with nausea? Did they help?
I'm sorry for all the questions, I am just 5 days away now and getting more and more frightened by the hour.
I'm sorry for all the questions, I am just 5 days away now and getting more and more frightened by the hour.
COMMUNITY LEADER
Ok so u r having a dura plasty, what type of patch is it? and was EDS ruled out...this is important.
I know I repeat myself, but it is THAT important.The related conditions many times get over looked.
Once u have found the right Dr for u and have confidence in him....it gives u a sense of comfort...with a few nerves that r shaking....but u know u r headed in the right direction.
When I woke, I remember wanting to go back to sleep as I had insomnia and just loved the fact I was able to sleep with all the meds...lol...
My head was wrapped in an ace bandage to hold my drain in place....and I felt wonderful.....that was the drugs and meds in my system.....once in ICU I began to get sick from the pain meds...I was on Morphine....and I was vomiting from it....so my night nurse changed the meds and I was doing better on Dilauid....after 2 1/2 days in ICU I was moved to a reg room....
Oh and I have to tell u my surgery went longer then the 4 hrs my DH expected it was a little over 7 hrs....so, it is hard to plan, expect that u can not expect nething.....
Plan to after u wake to take ur time in doing things, resting so u can heal....and doing the exercises needed to keep the muscles from getting tight and scar tissue from forming....walking is something u must do b4 u leave....and many times u r sent with a walker.....I had one so I did not need one sent with me.
He is doing a decompression, also opening the 'dura' sac? And putting a mesh/skin type graft over the hole. They have ruled out all other possibilities of my symptoms being caused by other conditions, such as Inner Ear, etc.
It's odd to me that I am not afraid of the surgery...only the not knowing what to expect when I wake up.
It's odd to me that I am not afraid of the surgery...only the not knowing what to expect when I wake up.
COMMUNITY LEADER
Hi and welcome to the Chiari forum.
We r all different...so how u feel and respond to the surgery will be ur own experience...many of us have our surgical experience posted in a journal in our profile page so the members here can read them and see how different we all really are.
AS to a neck brace, that depends on ur Dr and what all he is doing during ur surgery....
Did u have all testing to rule out related conditions? This is what can play a role in how ur recovery goes.
Recovery can be be slow and we need patience to allow the body to heal....trying to rush back to life as "normal" can cause set backs.
Expect that u can not expect what will happen.
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