what comes after the pain???

hi everyone

iv been not too well for the past week. iv had these awful pains in my upper back in between my shoulder blades like someone is literally stabbing me, and pain in my left neck and shoulder it all radiates.
unfortunately i had a cath done at the cleveland clinic over a month ago and they said my arteries look fine but i do have a bicuspid aortic vlave which leaks but they dont think this is causing me this agony.

they want me to stay on medication forever basically because it avoids high blood pressure but also disection and aortic anyurysms. my aorta isnt enlarged and everything looked fine but i still have this amazing amount of pain. now i have read several articles about aortic vlaves and it states that people with these conditions get pain in upper back ect.

this is exactly what i am suffering with, it has also been alot worse since i had the angiogram....
so i just wondered if anyone can give me any advice on what to do as they said everything looks normal so theres not much more they can do.
but i wonder what comes after the pain, iv been in such agony i dont think it can get much worse and i really dont know whats next??

i constantly feel like im going to have a heart attack or a dissection which isnt helpful when your trying to get some sleep. but i dont think its normal for someone to be in this much pain.
i asked the dr in cleveland clinic to just fix the valve as i believe all of my problems would go away if they did. he said its a massive risk to take when the valve isnt that bad yet.

im really stuck in alot of physical and emotional pain. im 23, cant plan anymore children at times cant even look after the one i have because of disabling pain.
i know there are alot of people in worse situations and i should be blessed but its just so difficult sometimes.

its like the pain is taking over my whole life..

ally

By maureengraz
Posted July 15, 2009 at 9:08 am
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Did you look into getting a second opinion? I know the Cleveland Clinic is the Gold Star as far as care goes, but if you don't feel comfortable with their recommendations, get another opinion..... Good luck and keep us posted......

By ally1985
Posted July 15, 2009 at 12:11 pm
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hi maureen

i have had many second opinions but unfortunately still suffer with pain. i keep thinking they may be missing something but i was correctly diagnosed at CC. but still no answers on pain.

By iowachris
Posted July 15, 2009 at 1:19 pm
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I had this exact sounding pain early last month. It scared me so bad I had my husband rush me to the ER. I went because the pain started radiating in my left neck around the front and hurt like heck in the middle of my two shoulder blades. Also, when I had that pain it was worse lying down. It seemed I couldn't breath.

ER doctors did a CT scan to make sure I didn't have a clot forming in my lungs. It came back negative for that, but it showed I had mild atelectasis w/small pleurel infusion. And my WBC was up.

They gave me a heavy duty pain shot, another script for pain meds & antibiotic. I was sent home to follow up with my DR asap.

My doctor had no clue - he ordered a cardiogram and had set me up to see my cardiologist for the results. My cardiologist confirmed what the ER doctors had found. Told me to stay on the antibiotics and gave me a script for COLCHICINE.

I stayed on pain meds and finished out the antibiotics. I carried a low grade fever in the mean time. All of a sudden the pain was gone and I felt great.

Don't know if it was the antibiotics or the Colchicine. I'm still on the Colchicine - the cardiologis explained that I had inflammation built up in my rib wound site - he said the colchincine was used for gout, but found it was good for both fluid build up and inflammation.

I haven't had to take a pain pill now since the middle of June. But, my pain was the result of post surgery 3x bypass.

Are you carrying a fever? What test did they run to rule out what isn't causing the pain. No, I agree - no one should have to suffer a screaming pain. Everyones pain scale is different and doctors need to take that all in a count. Once mine reaches a number "8" I'm headed for the ER or doctor. And I don't want to leave without them finding out what is causing the pain and what they are going to do to fix it.

Pain pills are an aid - not a cure. Cleveland Clinic is in the top 10 in our nation - they should be looking into this for you.

I'm sure you have a lot of anxiety not knowing what is going on at your young age. I was told anxiety can make pain worse. Although I haven't taken the one prescribed to me.

I wish you all the best. I've learned to speak up and not let those doctors think I'm just a cry baby. When I hurt - I hurt. Fix me!!!

Take care,
Chris

By NewAllie
Posted July 15, 2009 at 2:35 pm
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Hi Ally,
I'm so sorry you are having such a hard time. I know for me that the pain and anxiety cyle is horrifying. I couldn't tell which came first after a point and it really ceased to matter. Pain between my shoulder blades (more toward left), accompanied by nausea, dizziness and sweating was and is my main warning sign. I agree with everyone who said to keep seeing new doctors until you find what is really going on. You are much more than a test result. You are worth it. I have a daughter your age and I'd be furious if she were being brushed off by a doctor. I could always fight a lot harder for my chidlren than myself. Pretend you are defending and protecting your own child instead of yourself. Blessings, Allie

By ally1985
Posted July 16, 2009 at 7:36 am
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hi chris and allie

today im feeling much better although last nite it wasnt quite as good. i had this pain in my left shoulder and felt my pulse throbbing in my abdomen accompanied by pain, kinda to the left of the abdomen i think its the aorta but cant be sure.
im back on atenolol until my toprolol arrives so maybe the change did some good, still not sure. im just glad i have my nitro spray next to me at night.
i dont know if this has ever happened to you ladies but i checked my blood pressure during the pain last nite and it was so low 76/43 this for me is very low and then i checked it again 30 mins later and it was 121/36 thats also strange. dont know if it was pain related.

allie i understand what you mean, im 23 i should be going running around with my 3 yr old but instead im home bound in pain. it get frustrating at times as i really want to enjoy him.
but hopefully some answers will come soon

take care

ally

By Yatchzee
Posted July 16, 2009 at 11:08 am
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Hi Ally, When you took your blood pressure in the night, had you taken the nitro? It lowers your blood pressure with the dialation. Is it common for blood pressure to change so rapidly with a valve problem?
Did the doctors at Cleveland clinic rule out spasms? Is your pain worse in the night? I am very sorry to hear that your trip to Cleveland did not result in more answers and a successful treatment. I hope your new meds help. Joyce

By Misty1482
Posted July 17, 2009 at 9:03 am
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Ally, I'm so sorry to hear your still in pain. Your not much younger than me and I couldn't imagine being in pain all the time. I really hope they do something for you to figure it out. I would be running to the ER and telling them I'm having a heart attack or something, anything until someone figured something out. I know how life is with kids and not being able to play with them and enjoy them. I was not allowed to pick up my crying newborn for months after we came home. I was yelling at people to pick her up...lol. But keep trying and trying to find answers.
Does it really make that big of difference if your valve is "that bad" or not to do the surgery? Wouldn't it have the same results? I wish you all the best sweetie. Try to keep your head up. I have not been in any pain since I first came home almost a year ago (thank God) but I know I would be at my dr's until he fixed it. Life is not about going thru it with pain. Good luck hon, Lots of luck. Misty

By Kennarina
Posted July 17, 2009 at 10:48 am
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Pain is your body's signal that something is wrong. Nobody, and I mean nobody, should be in this much pain. Even if it is not heart-related (and there is that possibility) SOMETHING is causing you this pain and it MUST be addressed. I don't think you mentioned what pain meds you are on.

I've worked in hospice palliative care since 2000 and I have to say that we are consistently horrified by the utter ignorance of many doctors out there about pain management. Many of our patients arrive at our in-patient unit having suffered intractible pain, 10/10, for weeks or even months. This is criminal, given today's advancements in pain management. We consider any pain that is more than 3 out of 10 on our pain scale to be unacceptable.

After a patient's pain is managed, they are suddenly able to sleep through the night, their appetite improves, their depression & anxiety lifts, their daily mood definitely improves. Sometimes they perk up so dramatically that they can be discharged from our hospice unit and sent home! Almost all of them are also angry - why were they allowed to suffer so terribly for so long without relief? It's only when the pain stops that you can really appreciate this!

You must get this pain addressed immediately. Whether it's your aortic valve or not, the source of the pain has to be identified and then treated. Please do not let another day go by without seeing somebody for this, even if it means you bring your tent and camp out in E.R. And if you have a Pain Clinic in your area, make an appointment a.s.a.p.

Good luck and keep us posted!!

XOXOXO

http://www.myheartsisters.org

By dubtrubl
Posted July 17, 2009 at 12:50 pm
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Hi Ally,
I to had that horrible pain between the shoulder blades and down my arm, after tons of heart tests and doctors I was referred to a new doc who did a CT of my spine, turns out I had bulging disks in my neck that were causing the pain. With being careful and a little more rest it went away in a couple of months. I am now very careful not to do things that could jerk my neck to much, like certain rides at Disney and I hold my neck still when driving with my son, he likes to take off from stop signs a litte to fast:)
Maybe you could have that checked out. Mine was probably from a minor car accident 10 years prior. Which I had forgotten all about.
Hope this helps and maybe you too will be painfree in no time. I know it is miserable being in constant pain.
Lori

By iowachris
Posted July 17, 2009 at 1:08 pm
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Ally,

How are you feeling now that your meds came in? I'm kind of new to this board and I just noticed that you've been having a lot of problems for quit a while.

You live in the UK and it sounds like you don't really get good care there. How was it that you were able to at least get some type of treatment at CC. Couldn't they find a replacement drug for what you were taking?

It is a shame that you have to pay that type of money for meds and on top of that have to have them shipped.

Have you checked other hospitals here in the USA that are doing clinical trials. I don't know if you need to be a US citizen - how was it you got treatment at CC?

You are just to young to have to go thru all of this. I wish you the best - I wish you could of stayed at CC and gotten a few more tests done. What is the difference between our care and UK's besides being put on the waiting list?

There has to be some type of way for you to get proper care! Perhaps someone on this site knows of a way.

Take care,
Chris

By TSL
Posted July 18, 2009 at 2:35 am
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Hey Ally~
I had a leaking, bicuspid aortic valve all of my life, and it finally got so bad at age 54 that I couldn't finish a sentence without having to take several breaths. I also have osteo-arthritis in my neck, spine, shoulder, hips, etc., as well as several bulging and compressed discs... I had my valve replaced 11/2007, and my best advice is to wait to have the valve replaced for several reasons. The valve itself is very unlikely to be causing the pain. If, however, you have spinal problems, the surgery will only make it worse. The thing no one tells you, (Or at least no one told me...) is that while you are having the valve replaced, and your sternum is cut in half and cranked apart, it puts tremendous pressure on your spine, and often cracks - or even breaks - some ribs. I had 6 cracked ribs, and my back hurt worse than my chest after my surgery and took longer to feel better. I agree with what several others have posted and suggest you have your back checked out, as well as the other tests mentioned. You may also want to check out chiropractic therapy AFTER you've confirmed that there is no serious spinal problems. I've had a lot of relief that way, as have several of my friends. Also, alternating heat and cold often gives tremendous relief. Once you have pain in the back, the natural tendency is to 'tighten up', or clench the muscles, which continues to aggravate the problem. The muscles and tendons then swell and press on the nerves, which aggravates the pain, and creates a cycle of pain and inflammation. The cold packs reduce pain and inflammation, while the MOIST heat relaxes the muscles and increases circulation. (Dry heat can often make it worse...) You can easily make ice packs of any size by filling heavy duty freezer bags with a mixture of 2/3 water and 1/3 rubbing alcohol. The rubbing alcohol keeps the water from completely freezing, and keeps it at a slushy consistency which conforms to the body better than crushed ice. I use two bags, one within the other, to help protect against leaking...but if it does leak, it disinfects! Bonus! Wrap the bag in a towel to keep the ice from direct contact and cooling the skin too much. Alternate the ice and heat, using each for 20 minutes at a time with a 20 minute rest in between. This helps even more than most heavy duty pain med's, with no side effects or interactions! Another reason you don't want to rush into valve repair so soon is that if it fails, it will be harder to repair the second time. Tissue replacement valves, most often from pigs or donors, often only last for about 10 years then have to be replaced. For younger patients (and believe it or not, at 54 I was considered a 'younger patient'..) they prefer mechanical valves. With those, you're at higher risk of clotting, so you have to go on blood thinners the rest of your life, which requires constant monitoring - going in for blood tests - and increased risk of bleeding from minor cuts and serious accidents. They like to keep your INR levels between 2.5 and 3.5. The INR test indicates your clotting levels. Too low and you're at risk for clots, and too high puts you at risk of hemorrhaging. I have a hard time keeping my INR's in check, and have to test at least once a week. Things as simple as parsley in a dish can set my levels way off.... In short, it's a pain in the posterior that you really don't want to have to deal with until necessary. Plus your chest will never feel the same. You can often 'feel' your heart, and can hear it beat whenever it's even a little quiet. I feel like in Peter Pan where the pirate could hear the crocodile coming by the ticking sound it made from the clock it swallowed! If you're allergic to metals, like nickel or zinc, the wires used to close the sternum will cause intense irritation - I itched like crazy for 1 1/2 years! I finally had mine removed a little over a week ago after a CT scan showed the sternum had finally healed enough to safely remove them. My new valve has been leaking since the surgery, and seems to be getting slowly worse, which the surgeon feels could be due to inflammation caused by the metal in the valve. I have to have ECHO's done every 6 months, and if it gets too bad, will have to have it removed and replaced. My point in all this is not to scare you, but to let you know that rushing to have the valve replaced may likely not solve your problems, but could instead open a whole new can of worms! By the time you really need the valve replaced, all the side effects will seem minor compared to what the alternative is. But think how awful it would be to have the surgery now and have it aggravate your back pains and add a whole new set of problems... Please don't give up trying to find the right diagnosis, but also don't rush into something you really don't need yet. My valve problems stemmed from a congenital birth defect, but even though I had it all my life, the symptoms only really got bad about 6 months before I turned 54. The rest of my life was very healthy, and I was able to do most anything I wanted, while working up to 60 hours a week, raising 2 wonderful sons, and traveling the world! I wish you all the best and hope you are able to find the answers you need.....
TL

By pamelabradybrats
Posted August 22, 2009 at 4:11 pm
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I agree with TSL wait for the surgery I had a aortic disection repair in January..went back to work in March but every now and then I have back pain and other pain that they are telling me is from surgery..When pain get severe seek God and the emergency room
asap I pray for you and you pray for me!!!

By mysparetimedesign
Posted August 23, 2009 at 11:15 am
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I had an aortic valve replacement and repair four weeks ago and yes it's been painful and frustrating at times, but for me not being able to breath even to have a phone conversation, was worse. As I say this, like others have commented, is how I feel.
I wouldn't rush into anything either, and even thought I should have got a second opinion but then ended up in hospital unable to breath the week before surgery and had so many people in and out of my room that said I was quite sick, that I am satisfied I needed it.
I also have found out that I have one or two ribs that are probably bruised or cracked, but i just started to feel that about two weeks ago...it's like levels of pain drop off so you feel something different things, but they go away....
I hope you find relief soon!
debbie

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