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Felt Like My Heart Was Being Vacuumed Out Of My Chest--and Worse Neuro Symptoms


Maxine
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:)

---- :)

Bad week this week, as I've been fighting more neurological symptoms, slow guts, and now weird heart sensations---and of course no battery left in my cardiac loop recorder. The Dear Dr. Grubb is letting me take my time in getting it removed. It won't hurt to stay there until I don't feel so overwhelmed with all the other stuff I have going on.

Tonight I had a very weird sensation, like someone put a vacuum just below my heart, and it was trying to suck my heart out. Then----thud, thud, thud........... I was sitting in a rather poor posture, and felt beat from the day----although I didn't do much today. Then I had a lot of burping after this happened. Any thoughts? Anyone have this happen to them, then have such gas after. I'm pretty backed up also-----It feels like a bowling ball is sitting in my guts.

I go from being able to go, to not at all. My spine hurts like crazy this week---(more then my usual, and my neck pain is traveling into my lower head. My ears are crackling a lot, and I don't know what that's all about??? Neuro symptoms are worse----more slurring, trouble with my speech being all chopped, right leg collapsing, numbness and tingling, losing balance more, and now the bottom of my feet are buzzing like small electrical shocks----especially the right.

Last week I called my orthopedic surgeon that is watching my cervical/cranial instability, and I spoke with his NP. I told her I didn't know if my instability was getting worse, but my symptoms are. I told her I feel more unstable everywhere. then I told her there is a lesion in my mid medulla part of my brain along with a few others in my peri-ventricular part of the brain also. She said to call my neurologist. I did. I saw the NP in my neurologist's office, and she said it's time for a LP====lumbar puncture.

Meanwhile, I'm still waiting for this tooth extraction, which I'm certain can't be good for my cervical/cranial instability. My symptoms got worse this Monday just after getting a crown prep on another tooth. I used no local anesthetic because it's caused adverse reactions. EDS doc thinks the poor vascular tone from EDS cause serum levels to get too high too quickly, and I can't metabolize it correctly. Saw an allergist late monday @ 5:00, and he said he can't test for allergies because I'm on beta blockers----which will affect meds used to treat any allergic reactions, and he thought it was more of a toxic reaction then allergic anyway. Very nice man-----and he was kind enough to look up some information on local anesthetics for me. There isn't a lot of research on WHAT TO DO, if a TOXIC reaction occurs. He felt bad for me and said I have a couple "catch 22s" going on. I have truly tried to get this thing done with the extraction, although I admit dragging my feet at first because it didn't bother me that much. Then I thought the oral surgeon's office was dragging their feet, but learned it was the insurance all along, as Sara and I shared our notes from out conversations with Blue Cross. The Oral surgeon wan't it done in a hospital setting due to my apnea, and because I'll have to be put under for the extraction.

You wouldn't believe how many times I talked with blue cross this week, and I even put on my firm collection manager voice. They lied about some 50 page fax----------(Sara only faxed the 6 pages of medical documentaion I gave her in March of last year.) I finally got a woman who gave me her full name, and he own extension #, and she is going to send a letter showing the hospital codes for the hospital is covered as long as it medically necessary. The NP in the neurologist's office said she understand why I'm afraid of having the extraction of the back molar---(it's right in front of the worst part of my cervical/cranial instability, and my health hasn't been stable at all).

The good news is I'm about to be a grandma any minute-------a baby girl--- :) I want to feel half way decent when my new little grandaughter arrives..................

Feeling very old........and I'm only 48-------------(I don't consider that old)

Maxine :0)

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Bump---- B)

Does anyone have these vacuum type feelings with your heart?

Not feeling too great about this------scary stuff.

I'm wondering if the pressure on my brain stem might be causing this?

The other night I tried to slide my nephew up my legs, as I can't use my arms for anything. I just wanted to hold him and give him a big hug-----------he's soooo cute. I think I used my arms partially because I as I already said, the pain is much worse then my usual. I've been on the ice pack, and tylenol. I can't handle narcotic pain meds.

I'm hoping someone here has some imput, and has experience with simular neurological problems. My legs are weaker, but I can still use them to open door at retail stores, and usually to assist with other things. Walking is a problem, as I feel the weakness mostly when I walk----carrying my weight around. They feel very sluggish.

Maxine :0)

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Guest tearose

Sorry I can't help you figure things out Maxine, I just wanted to let you know I think you are on the right track. Also to send you a load of encouragement. The hard thing is that you are managing numerous things at one time...so just be very careful that you don't bring on any more!

I have heart issues but I get thumps and recently serious stabbing for just two minutes but not vacuuming.

We are one odd lot aren't we.

Do you want me to ask my family oral surgeon what anesthesia he used on my dental work?

Can your neck be stabilized well enough during surgery?

You have to do a lot more research before this surgery and rightly so.

Hang onto those grandma thoughts and enjoy the special times that are before you...

I am so tired tonight but just wanted to give you a shout out and let you know I am sending you healing wishes.

best regards,

tearose

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It sounds like you had a lot of pressure from the gas, then when you burped, it relieved it. If your stomach is full of gas it will put pressure upwards and I suppose give many interesting unpleasant sensations. If the bottom end isn't working, it's going to affect the upper end too.

If you are bloated up like a blow fish, it seems reasonable that it would put pressure anywhere it could. I have felt pressure like my gut was trying to push into my chest. I drink salt free club soda because it makes me belch and then I feel better.

I just have thuds and arrythmias all the time and don't really attribute them to anything in particular, though they may coincide with other symptoms I'm having.

As far as the chiari, has anyone decided whether surgery would help or not? I guess I am confused as to whether they want you to have it and you are hesitant, or it has been decided you don't need it? I know it's controversial at best, from the little I've read. I am just not familiar with the type of problems you are having in those areas. Or eds. I guess it's like like my PP, I am certain there a only a couple of people here that know anything about it.

I'm sorry you are having a hard time, the past year has been very difficult for you, but I find the "anticipation" of things are typically far worse than the actual procedures ever are. I barely have the energy to worry about things, I just want them over and done with, and then recover. I had a tooth that I let bother me for months, because lidocaine does not work for me. When I finally went in, it ended up being something minor and I had spent all that energy I don't have, worrying about something that was nothing.

I'm not sure what to tell you. It sounds like you are contacting the right people, and with the symptoms you describe, there should be something they can do. Surgery, or meds or P.T. or something...but like I also said, I just don't understand chiari or EDS. I do understand gas however. I guess miralax is not prescription anymore and I used to give that to patients with Parkinson's who had a miserable time with constipation. Have you talked with a nutritionist that can help you with a diet that might keep you more regular? It's a thought. I hope you feel better....morgan

p.s. I stopped picking up grandkids a long time ago and have legs too weak to walk any distance, so can't go out without a wheel chair anymore....it's a real bummer

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Just to add to what Morgan said...my 87 year old mom had horrible gall bladder problems years ago (treats herself with herbs for gall bladder and proper diet...NEVER had surgery and HATES DOCTORS)

She can tell you the PRESSURE from gas and bloat can INDEED feel like heart problems or a FULL BLOWN attack...she has been through many and lived to tell about it.

I say this not to DOWNPLAY your problems but to hope to ease the anxiety factor.

Anxiety about anxiety...feeds anxiety and only you and your therapist can decided how to properly deal with that. I know you have had a rough year, been through a lot of things..but there comes a time when being perpeftually in FEAR OF "something happening"...something HAS to be done to remedy the situation the best you can.

I say this with love and concern....not judgement...I hope you get some relief soon.

oh, also my mom SWEARS by baking soda in a glass of water for bloat. Helps her instantly.

That's all I got.

January2008Squirrelsandbirds030.jpg

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Thanks Girls for your opinions, kindness, and support--- :blink::P Thanks for the cute squirrel sophia.

Tearose, it can't hurt to ask your oral surgeon, but I know that we can't use any local anesthetics at this point.

I am the queen of gas, and have had problems since I can remember. I have lot of diverticuli in lower bowel as I recently found out, but the diverticuli in my duodeum is inflammed (part of the EDS---I GUESS). I see a GI doc in Feb who will review all my GI tests----the barium enema, and the CT. My surgeon didn't seem too concerned with the lower GI, but wanted to re-test for the duodeum. So, this is when I made the appointment with my old GI doc----(he's a super nice guy)---so at least I know what I'm getting into.

As far as the chiari related issues, instability ect.------------WELL, there is no easy answer. I have two neurosurgeons that said I needed surgery, but one said on the congenital stenosis, and the other for chiar/instabilityi. Well, too many Docs said the chiari isn't significant, and I tend to believe them. However, the is a prominant vertebral artery, and a small poster fossa--(lower skull----COMBINED with the instability-----and this is what is causing the brain stem friction/pressure. After seeing the EDS doc, he said the instability on the cervical/cranial junction concerned him. This is where the orthopedic surgeon came into play. He recommended him to me, and this surgeon agreed with the NSG who said I have the congenital stenosis----that it's putting pressure on my cervical spine, but he also agreed with the other surgeon, and confirmed instability.

He even did more MRI's, and said the instability is micro, not macro. This means my skull isn't falling, causing my spine invaginate into the brain. This is good, but I still have the instability---and the combination isn't good.

The orthopedic surgeon and I agreed to put off surgery, and use conservitive treatment. I have decided to stay with him, as he has the most knowledge about EDS, and spine disorders. I did a lot of homework, and THIS IS MY SPINE AND BRAIN, so unless this becomes life threatning----I'm not having surgery. I have seen too many people who had surgery in the cervical/cranial junction, and some of them had one big nightmare after the surgery, and had to have repeated surgeries. Could you imagine if I had surgery by an inexperienced surgeon who had no knowledge on EDS-----(then, imagine the instability I would have after they romove part of my skull, and patch it up.) The chiari Institute does fusions, as they are experienced with EDS and chiari related issues. However, they are in NY, and I don't know enough about them, other then the one time I saw them. I have heard negative opinions, and positive opinions about TCI.

I'm too cunfused, so I have gone another route, and ended up with the orthopedic surgeon who makes a lot of sense, and feels both NSGs are right-----in that I have both the stenosis, and instability---------and all three agree it's not actual chiari causing problems near the brain stem----(It's the combination of the instability, small posterior fossa, prominant vertebral artery, causing the brain stem problems, and the congenital cervical spine stenosis doesn't help, as it's pretty significant. Then you add the bulging, and herniated disks in cervical spine, thoracic, and lumbar spine, and it's get's worse yet. To tell you the truth, the desiccated disk on T-8 is very painful, and it's a race between that and in instability that makes my life a misery lately. Bottom line---surgery is on indefinate hold. With EDS, one area will be fixed, and another will get worse.

Goodness, just putting my arm over my head while lying down for the breast ultra sound today made my shoulder blade pop out.

My spine is a train wreck, and this is what makes me anxious. It turns a tooth extraction into a big hoopla. I'm not making it a hoopla------------It's my body, and what is necessary to have this done safely. This tooth sits in front of the instability---inches away. I never had issues about extractions------I had four wisdom teeth pulled in the 80s-----only with local anesthetic back then. The local anesthetic didn't bother me------so I don't know why is does now. The allergist feels the EDS---and poor vascular tone causing rapid absorbtion of the anesthetic makes a lot of sense, and this causing a toxic reaction-----so he agrees with the EDS specialist. He didn't even want to test me on it. My vascular tone was better when I was younger. Now it's worse----obviously.

The NP from the neurologist office completely understands my feelings about the tooth extracton. Do you know how hard it is to fight the insurance company, and talk to them, or the oral surgeon's secretary to get this thing over with?------but at the same time it scares the you know what out of me. Any ER in Toledo isn't equipped to deal with whatever could go wrong with my instability, neuro problems, apnea ect. should something go wrong during that tooth extraction. Anyone that knows me close enough, knows I'm trying my best to get the best possible medical care, and it's exhausting trying to fight the system when I'm fighting to function in my daily life.

There are days where I feel like I'm walking around inshock, as I wonder how I get by as well as I do.

I'm starting the miralax again. Sometimes it helps, but my bowels have a mind all their own. My neuro problems affect my guts, and my guts also have problems with diverticuli------some of them inflammed.

Who would believe all this? Well, I have every medical record to prove it-----I have to, like I said, who would believe this.

The LP is for the lesions, and this is another issue, as an LP could be dangerous due on the cervical/cranial issues, as I have partially blocked cerebral spinal fluid.

The thud, thud, thud thing that happend to my heart last night was definately my heart, but it's possible the gas was extensive, and pushing into my chest----------This can cause palpitations also. Since I don't get those a lot, they always spook me a bit. Pressure on the brain stem can cause it, and I have had a pretty wicked headache, and upper spine pain.

I hope my spine holds it together, but my instincts tell me I'm coming unglued------------ :blink:

I hope this explains thing. Sorry, it's long-----------------but hopefully this will prevent future long postings---LOL--- :blink::P;)B)

I'll keep you posted as my saga continues. Of course let you know when the new little baby girl enters the world.

Maxine :0)

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Sophia,

I forgot to add that my Gall bladder hida scan showed a gall bladder that works 60%. This was done in Jan 2001. I don't know how well it works now, but I have so little fat in my diet that I don't think it's that. It's that nasty diverticuli, I'm sure. The CT showed inflammation. I need to avoid certain textures of foods. No nuts, seeds, oats are really hard on me, and would you believe corn has messed me up so bad that I had a fever, and ended up with a high white count----not to muntion cramping that felt equal to my labor pains when I had my son.

This has only happened twice. The first time was when my husband and I had a little picnic before we were married. I ate two ears of corn. the next day I had to go home from work, and I thought I was going to die. I had a fever, cramps, and finally passed the corn, but the next day I was still very sick-----this was 1988.

Then just a couple years ago, I went shopping with my mother, she was tired, and I was feeling a potsy mess, so we both decided----maybe we need to eat---and quick. So we went to this restaurant that wasn't the best becuase we needed to eat quick. I thought what harm will vegetable soup do? there was so much corn in it, that I had trouble avoiding it. That evening the same thing happened to me----the whole mess, but this time I went to see Bev in Dr. Grubbs offce because I had a bad pots attack with it.

I asked her to do a white count, and it was 16,000. She insisted I go to the ER which was a joke. My blood count was back to normal by this time, and the ER doc said my spleen swelled from the gagging I did that previous evening, and this caused my WBC to temporarily increase. OK, if you say so Doc....... :rolleyes: I knew it was my diverticuli, and my episode just passed. I think my GB is OK right now. The CT didn't show any gall stones, but I assume it still doesn't work perfectly-------so I avoid fats.

As a side note, I have to say it was pretty cool that bev was concerned, and took me seriously. She didn't fool aroudn, as she knows abdominal pain, and a high white count is nothing to fool with.

Maxine :0)

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