TOS and other medical issues
 

Hello everyone! I posted here before about my TOS. To refresh it affects my left side, primarily my 1st and 2nd rib. My symptoms are left arm pain, left shoulder pain, left sided neck and jaw pain (my TOS symptoms). My concerns are that I also have MVP, hiatal hernia, and GERD, so I have symptoms of dizziness, lightheaded, nausea, feeling of something stuck in my throat, palpitations. Are any of these also tied into TOS? I went to my cardiologist yesterday for a check up and he didn't seemed concerned that I have all these different symptoms. I am only 30 years old but I'm concerned that maybe all of this is masking a heart problem. I have had numerous tests over the past 2 years and the only thing that came up is Mitral Valve Prolapse (MVP) which I was told is benign and I take propranolol for it. Any insight would be greatly appreciated. I haven't even been diagnosed with TOS for a year.

Rachelle

Hi Rachelle,

I too have cardiac issues. I have diagnosed MVP but mild and just found out through and echocardiogram that I have moderate aortic regurgitation and may need valve replacement at some point in time. AHHH to that...
anyhow to address your issues.....need to know your medications....a lot of times you can have dizzyness, nausea and lightheadedness from them...even from the propranolol. Is the MVP that bad that they needed to medicate it....usually they don't medicate for it.

If you are on anything that can lower your blood presssure you will have the symptoms you describe. I have low BP and get those symptoms. You also have GERDS which can case some stomach pain which strangely enough is translated into dizzyness and nausea. Your stomach has a hell of a lot of nerves attached to it and that can be the cause of many symptoms if not diagnosed properly. Have you had a second opinion from a cardiologist??? Have you had an echocardiogram...ultrasound of your heart???

Something in throat and your balance can be from TOS as it impinges nerves it causes these issues.

Hope some of this helps you!!
take care! And get up slowly from sitting, lying and being in a crouched position....you will get dizzy!!!!

love and hugs,
Victoria:hug:

[dizziness, lightheaded, nausea, feeling of something stuck in my throat, palpitations]

I had a few times of dizziness/vertigo/lightheadedness usually lasted weeks each time. at the worst there was some nausea with it.

I had the something stuck in my throat feeling when my scalenes & SCM were spasmed severely and caused my collarbone to be pulled up , then it stayed stuck like that after the spasms were resolved.
An advanced PT guy did a rib mobilization to drop them back down and it was instant release for me. a hyper mobile thing I think.
It popped up again a few times since then but my chiro can adjust it back into place now.

I also had a fast heart rate and chest tightness when I had the severe spasms too
It was like my whole upper body was locked up and had a very tight vest on with a tight collar too.

Do you think you are having muscle spasms or chronic tightness when these sx flare up ?

I have to say, being back on this site has hit alot of issues with me. For the past six months I have vomited (sorry not nice to say) every morning. I have attributed it to post nasal issues. Thanksfully it stopped about 2 weeks ago. I have been in the hospital having cat scans, ultra sounds and blood work. we thought I had pancreatic issues, galbladder problems or many number of upper stomach problems. No one has ever suggested that it could be related to TOS. I am tired of having too many doctors all looking at diferent issues. I wish we could find some universal way to diagnose TOS problems.

I hope you find some answers. Best of luck, Linda

Victoria,
Thank you for your reply. I have been on propranolol for about 5 years now due to the fact I was having rapid heartbeats with palpitations. I was told for years that I MAY have MVP because of my symptoms but that it wasn't conclusive based on any test. I have had at least 5 echocardiograms and even a nuclear stress test. Apparently now when they listen to my heart I have the "click" in my chest, which wasn't there about a year ago. They did an echo to check and I was told my type is benign and to continue to take the propranolol for the palpitations/rapid heart beat.

Could the TOS be aggravating the MVP? My TOS is on the left and it involves my scalenes and my 1st and 2nd rib. I was told that I'm a candidate for surgery but I have a 2 1/2 year old to care for so I was I told to wait. This condition is absolutely awful. I'm so glad I found everyone on here.

BTW, is this condition more common in females than males, or are there just more females on this board. Has anyone else had TOS surface due to pregnancy? I want to have another one but I don't know if I would just make my condiyion worse. Thanks!

Rachelle

Yes TOS is more prevalent in females than males.
There is probably a study somewhere... but I think it is due to the narrower shoulder chest area..

carrying a kid around or even propped on your hip will make for some slight body changes that may aggravate TOS.

If hypermoblie even more so.

[TOS is more common in women than in men. The sex ratio varies depending on the type of TOS.

* The female-to-male ratio in neurologic-type TOS is approximately 3.5:1.
* The venous type is more common in males than in females, and the arterial type has no sexual predilection.]
http://emedicine.medscape.com/article/1143532-overview

IF you're vomiting don't forget to check out autonomic neuropathy when the nerves we need for digestion stop working.

The stomach gets real hard.

Also check your blood sugar.

Hi Rachelle --

Gosh, I'd give anything to find a doctor who believes me when I say IT'S ALL RELATED TO TOS. I am a firm believer that every problem I have in my body is all because of TOS. And I'm sick of nobody connecting the dots. Even my dream doctor who 100% believes in me has a hard time completely connecting the dots. It is hysterical.

I'm your age - 30. I've had this since I was 19. Both sides affected.
I experience dizziness, lightheadedness, nausea, crap stuck in my throat, hard to swallow, post-nasal drip, weird tremor-like things, etc. I'm constantly sick. My arms don't work. I get asthma when I'm sick because nothing drains. My ribs pop into my lungs all the time so I can't breathe... Need I go on?

Of course we all have heart problems... I don't know about you, but my coratid artery is about 85% blocked, and all the little baby branches are working overtime to try to pump blood into my head. And then when it tries to go back down, of course, it all gets stuck in the outlet area and has to find a way to squeeze back down... Along with lymph getting stuck... I hate lymph.

Let's think about this, people... The MAIN HIGHWAY to get blood from our heart to our brain and back is BLOCKED. Nobody is going to convince me that we don't have "heart problems" from that. Has anyone checked our blood pressure lately? I don't know about you guys, but I'm always half dead. My heart may not be directly involved, but it certainly has some problems.

In case we all haven't noticed, we're all a bunch of hypochondriacs, and rightfully so, because SO MUCH FREAKISHLY WEIRD STUFF HAPPENS TO US. (Don't take the hypochrondraic thing the wrong way - read on. I, for one, am a very proud and self-declared hypochrondriac.) The new diagnostic measure for TOS should be -- "Patient presents with A, B, C, D, E, F, G, H, I, J, K, L, M, N, O, P... symptoms, none of which can be explained by any sort of normal means; therefore, they must have TOS."

After my very terrifying injury last year, when all I was doing was playing the clarinet, for God's sake... When I ended up in the emergency room from that, with a neck and throat problem that no doctor could explain, including an ENT who scoped my throat, and a throat problem that I STILL haven't recovered from because nobody can figure it out... I adopted this new attitude about this stupid, stupid condition, and it goes something like this:

"HA! Look what TOS did to me now!"

And every time something new happens, I no longer freak out or worry... It's just TOS. And I'm going to take a muscle relaxant and survive. And for no reason whatsoever, three days from now I'll be living in a totally different body. And a few days after that, I'll be living in a totally different body again... And a few days after that, again, a totally different body... And it's such a treat, really, because you never know what you're gonna get.

Every time I choke on food I'm trying to swallow... Here we go again.
Every time I stand up and start walking crooked... Here we go again.
How about the time I stood up and went completey BLIND in one eye... Yup, that was TOS again. (Ocular Migraine - who knew?)

Anyway, horrific things keep happening, and we usually just have to accept them. I think maybe that's what happens when you hit the 10 year mark. Anyone else feel that way?

~ Jenny

Love your name---so it's funny cause I was just really thinking about it as I was telling the husband and it is starting to make sense and than I read your posting. Just as I was connecting my own dots. I have so many issues that have always been presented to me as completely unrelated. TOS actually makes alot of sense. I have to say that dr saxton made me feel normal for the first time. My other doctors know me and therefore know I am not making up my symptoms however they never really know how to explain them all. i always blame chemo cause to me that seems to be as good a reason as any. we'll see.


laura

Hiya,
first question you need to ask is your chest pain muscular or your heart. This is very difficult to figure out. I have not had much pain with my MVP...only tacahacardia occasionally. It has never been a concern unless going to dentist I need a pre antibiotic.....they have even stopped doing that now...but I may have mentioned all of that...given the tests you have had it sounds like you may not need to be on the propranolol...second opionion?????? I know when I first had symptoms of Tos I had chest pain like you would not believe i figured heart for sure....I was a working nurse at the time went to emergency ward to have ECG done and nothing wrong with heart!!! So it was the muscles in my chest tight and sore that caused the pain!!!!!!!!!!!!!!!!!! I know if feels like heart attack and pain but it is likely the ToS causing this distress..........

take care and hope you are feeling better...
love and hugs,
Victoria :hug:

Hello all! Sorry I haven't been around lately. Still having the same old problems. My left arm has been having so much discomfort lately that I am really scared that there is something wrong with my heart. I have had every heart test except a catherization in the past 2 years and I have also been to 4 different cardiologists since my symptoms started 6 years ago (3 of them have been in the past year). I'm so lost anymore with all my symptoms. I went to my PCP last Friday because I had a headache for 2 weeks and she walks in and says, "oh it's Rachelle again, what's wrong now?". I HATE going to the dr anymore because they look at me like I am a hypochondriac. I don't know of any good doctors here in Pittsburgh that are familiar with TOS. I talked to vascular surgeon but all he wanted to do was cut me open. I tried PT but the therapist basically told me that I will never be 100% unless I have surgery, and even then it may cause more harm than good since I don't have an extra rib. AAARRRGGGGHHHH!!!!!

The other day I was sitting at work and all of a sudden I got the dreaded "heavy" feeling in the middle of my chest and then I got pain between my shoulder blades, classic sign of a heart attack, but then after a few minutes the pain and discomfort subsided. I don't know what to do anymore because when I go to the dr. they think I'm crazy. I think my cardiologist (who I used to love) is even giving up on me. I went for my check up and he was like ok, see you in a year. All he did was listen to heart and check my BP.

This is all of my medical "issues" I have been battling for the past 6 years:
-chest pain/discomfort
-left arm pain
-neck pain
-headaches (either sharp stabbing pains or extreme pressure)
-jaw pain
-globus sensation in my throat
-nausea
-abdominal pain
-dizziness/lightheadedness
-SOB
-numbness in extremities
-cold hands
-distended arm veins
-rapid heart rate/palpitations

I have been diagnosed with:
-TOS
-GERD
-hiatal hernia
-MVP
-anxiety (personal favorite :( )

Does anyone have these similiar symptoms from their TOS? I'm so lost and I just wish I could find a dr that understands. Thanks for "listening" to me. Take care everyone

~Rachelle

feel your pain
 

Hi Rachelle,
It's not in your head and your doctors need to take a flying leap of a short plank!!!! U are obviously having severe symptoms due to your TOS!! And other issues. I suggest you look up on our list of doctors and find one that is close to you or find your way to UCLA as I understand there are very good doctors there. I am in Alberta Canada and I AM considering going to them to get an MRI to see if I can have more surgery as my first one failed due to poor physiotherapy...they wrecked the surgery. so finding the RIGHT doctor is key. My family doc (PCP) says oh look here comes queen Victoria or oh no what do you want now....admittedly it is a joke but it does bother me a little. He does a good job.....but is not great at dealing with pain...he does not want to give me more narcotics when I have but need more....anyhow.......your issues are real and not imagined. You need to be heard by someone who will help. Perahps a 3dmri at UCLA will give a better idea if you can have surgery and if it will help. Therre are great surgeons here that many here have had surgey from. Most if not all of your symptoms sound to me like TOS symptoms. I'm not sure what else to say except that I have been through tonnes of doctors...many many who did not believe me told me go and live in pain or that it was in my head and nothing could be done. SO YOU ARE YOUR OWN BOSS AND NEED TO ADVOCATE FOR YOURSELF!!!!!! Don't let them tell you what you are feeling tell them what you are feeling!!!!!!!!!!!!!!!!

hope that helps....
feeel free to pm me if you want more help or info!
love and hugs,
Victoria:hug::hug: