[wildberry2277]

My name is Jacquelina... I have been unofficial diagnosed with TOS.... My doctor seems not to believe in it and now is very hesitant to call it that... I had a MRI which showed constriction on the left side but not on the right... However my pain is much more sever on the right... He said from an vascular perspective i have TOS on the left but not the right... Is it possible to have nerve TOS of the right and vascular on the left? My symptoms on the right are:


The severity includes:
-Pain radiating down the neck into the shoulder and elbow then fingers
-Weakness
-No feeling in my pinky, ring, and middle finger
-When i do have feeling its intense burning and zapping feelings
-muscle spasms
-tightness
-Hand swelling
-Painful jaw?
-and JUST PAIN

I am not sure where it all started but i think it was in volleyball i was diagnosed with tennis elbow and carpal tunnel which always has caused me pain especially when i was writing... then a year or so later i started having muscle spasms really sever and had alot of upper back and neck pain... They always said it was stress...

Then it started turning in to a popping thing... I would be driving look behind my shoulder and their would be a pop... and running pain down my shoulder and fingers... which would put me out of work for a week if not longer.. because the pain was so bad...

Now here i am today... I have been on muscle relaxants and pain killers off and on for the last year and now lyrica for the last month... Not getting much relief...

I went to a pain clinic... They did some shots in to the muscle to see if it made it better... Well they were relaxed for all of 24 hours and then went back to normal... However that did not stop the pain in the shoulder and fingers..

It must be nerve pain they tell me.. .Even though that’s what i knew all along... Some doctors just don’t listen...

I am sorry to ramble on... What do you all thinking? Dose anybody have nerve TOS....?

Again sorry for carrying on...

Hope you all are doing well

Jacquelina

[gibbrn]

Hi Jacquelina,

Welcome.....
Sorry that you have to be here but you are in good company. I hope that your doctor smartens up and says the truth!!!

Your symptoms sound to me like TOS and yes it is possible to have the symptoms on either side and different diagnosis on either side.

I am curious to know if the diagnosis of carpel tunnel and tennis elbow was preliminary and the symptoms were coming from higher up. I wonder if they missed what was really going on with you and your higher nerves were the issue.......presenting with symptoms in your elbow and arm.

Neuropathic TOS is more difficult to treat and pain is the worst to treat. The worst part is letting you continue activities which make things worse ie: work or volleyball, but with your pain I am sure that you are not able to do much of what you could do.

Your doctor ...what specialty is he/she??? I wonder if you need to see a different specilist to help you with your pain and treatment. Perhaps you need to see a vascular specialist and have a veinogram to see the compression....you can have nerve issues if your vessels are cut off as they may run in the same pathway....as well if your arm or hand swell up then they will compress nerves in that area.

I hope this can help some and no worries on the rambling we all do it and really you have not done much of it you are explaining yourself...sometimes it can be mixed up as rambling......we are used to people not listening to our symptoms!!

Take care and keep posting!!

Victoria

[wildberry2277]

Thank you! I am so glad i finally found a place to talk to somebody about this... Its truly deppressing.... I am trying to find a good doctor that can help me with TOS... I just dont really know where to start looking....

[Teach2]

Have you had a cervical MRI done? It almost sounds as if you could have some involvement from the cervical spine. If you can see a very good neurologist and an excellent vascular surgeon... you may get some answers or at least some advice. You might also want to look for a very experienced myofascial massage therapist or PT who will be very gentle and work slowly to stretch some of the constricted tissue. I have been getting some relief from this type of treatment. BUT the key is to find someone very knowledgeable and not just anyone!! God Bless you and Ihope you find some pain free days. Beth in Delaware

[wildberry2277]

I did have a cervical MRI! Every thing was normal.... Which is good i guess.... Regarding PT... I have been there and done that 6 times in the last 5 years.. Along with sports medicine and chirportic care.... Not only do they not work but it actually causing my symptoms to flare up....

I am hoping to get in to a TOS spec. however the only one i can really find in my state is on vacation until the 7th of August.... That doesnt help the horrible pain i am living in!

What type of Meds is everyone on?

Again thank you so much for everyones advice and feedback!

[Sea Pines 50]

so glad you've found us. sorry it's so quiet right now due to the holiday but maybe that will give you a chance to look around and get familiar with the lay of the land, so to speak. the stickys up top are full of links to some great sites with all kinds of info re TOS and related stuff; the search bar in the upper righthand portion of your screen will help you pull up threads by topic or by poster (using the advanced function) for issues of particular interest to you. or just bounce around reading whatever grabs your interest. there's lots here!!

presumably if you have a preliminary TOS dx you are way past ruling out cervical issues, but a lot of us have both. one of the devilish aspects of the TOS monster and why it can be so hard to dx (especially for the uninitiated... and for the nonbeliever? forgetaboutit!) is that it loves to MIMIC other disorders like cervical syndrome, CTS, cubital tunnel syndrome and tennis elbow like i think you mentioned, plus several others. but wait until you find a TOS specialist to get any more tests, as that doc will likely order his or her own special faves. have you had a scalene block, or just trigger point injections (wasn't sure from your description)?

any doc that is "hesitant" to call a spade a spade in my case these days won't last very long on my tx team, i'm afraid. i had an extremely delayed dx due to drs. just like the one you describe in your post, my friend. i mean no disrespect, but obviously, this doctor does not specialize in TOS... so onward and upward i would say!

the top TOS docs are usually vascular surgeons. most of us find that a good neurologist is key to managing our care - just be very careful to choose one that has a track record tx'ing TOS patients; you don't want to end up like i did, for years... with a neuro who's excellent but in a rigid, old-school practice so conservative that the possibility of thoracic outlet syndrome was never even raised in my case. and i do NOT have the so-called "disputed" form of TOS, even... oh, let's not get me started on that topic, shall we? we're here to talk about Y.O.U. today!!!

do you have a PM doc? (pain management dr.) i finally lucked out and scored a PM doc who's a neuro AND a TOS specialist; don't ask me how that happened! but it is possible. finding the right balance, for you, of meds (muscle relaxants like zanaflex, flexeril can be effective [some prefer benzos]; analgesics vary from the tried and true [aspirin] to the new [oxymorphone]; off-label rx's will surprise you [anti-seizure meds to tx nerve pain; alzheimer's drug to tx depression and/or tolerance issues, etc.], relatively noninvasive modalities like TrP injections or botox injections into the TOS muscles in conjunction with PT, etc., vitamens and supplements good nutrition and hydration, restful sleep... all of it counts a great deal in restoring your balance and your health from an injury like this one. so important to be careful when choosing your healthcare practitioners. and if you find one, that will tend to lead you to the next, and so on...

and the PT you choose i would say is one of THE most important members. it has got to be someone who knows how to work with a TOS'er. not just someone who does myofascial or cranio-sacral release therapy (although those are good modalities), it's got to go beyond that and i'm afraid only something like 10% of the PT's working in this country receive the proper training. look for prior threads on this topic and you'll see what i'm talking about. there are certain modalities which have been developed just for working with TOS injuries. edgelow is one. sharon butler has some good ones. paula asbaugh in denver has a protocol for TOS'ers who are post-op, as does jason cherry.

a trick question i always ask when screening a new PT is "do you use the edgelow protocol?" it's OK if they don't and have something else in its place, but if they don't even know what that is, then THAT is a huge red flag. peter edgelow is fairly well known, at least in the united states, as a physical therapist who got proactive enough to develop a fairly well thought-out program just for TOS sufferers. you can buy it on DVD, plus certain accoutrements, through a co. up in sta. rosa, CA if you're interested (let me know, i have the # somewhere or it may be in the sticky up top even). and the reason this is so important, by the way, is that the WRONG kind of PT can not only not help you... it can actually DAMAGE you. and they always "say" they know how to work with TOS, so no, you can't go by that, sadly. the best way to find someone is always by referral i think. if you can hook up with a good TOS-friendly neuro or PM doc and s/he can point you towards the best PT around for a good long course of therapy for 6/9 months, closely monitored, that'd be cool...

a bodyworker is another good person to add if you can afford it. hellerwork, feldenkrais, muscle activation technique practitioners, etc. have national networks which can make finding a master to work with you a bit easier. TOS'ers have major posture issues, even if it doesn't show from the outside.

your sx do resonate with me; all of them i hate to say. i wish they didn't. but the good news is, once you get your dx confirmed you can finally, finally begin to develop a good tx plan and, hopefully, start to get some good relief and see some results as you learn to belly breathe, to rebalance the affected muscles, to take the pressure off of the affected neurovascular structures, and begin sleeping better, getting needed social and emotional support here and elsewhere, better medical care... all of it. the right dx is where it all started for me. (only took me i don't want to TELL you how many years to get there, but that's where it starts!!!)

but not until after the 4th! go marinate something and we'll meet back here later in the week!

alison

[MelissaLH]

Originally Posted by Teach2

If you can see a very good neurologist and an excellent vascular surgeon... you may get some answers or at least some advice. You might also want to look for a very experienced myofascial massage therapist or PT who will be very gentle and work slowly to stretch some of the constricted tissue.

Welcome, Jacquelina! I'm glad you made it!

I have to agree with Beth; a neurologist, vascular surgeon, and myofascial therapist are all people you will need on your team.

Take care,
Melissa

[concerned lady]

Dear Wildberry,

I just copied & pasted this message, from the "symptoms" thread, to your thread (topic) here. And I've added more, to this message here:

I hope others in Minnesota can recommend a good TOS doc to you, soon!

Here's another idea: Call TOS docs who are outside of Minnesota, like in Denver, Colorado, and ask them who they know are good TOS docs (if any) in Minnesota! If you don't get any good answers, then:

Consider coming to Denver, Colorado, where there are several very good TOS docs! You could visit several of them, to GET DIAGNOSED, and to compare what they all say.

Then, you could consider whether you want to get helped by them in Denver, or not. (Maybe & hopefully you won't need surgery--maybe FELDENKRAIS METHOD, or ASTON-PATTERNING, ETC., could help you--time will tell!)

In case you have something else going on, alone, or in addition to TOS, ask doctors about the following possibilities (at least), and take some actions yourself too:

1) Possible Vitamin B-12 deficiency (Rose is an expert at this, and can advise you more). Get the following blood tests done right away (I learned this from Rose):

a) Vitamin B-12 blood level
b) MMA/Methyl Malonic Acid blood level
c) Hcy/Homocysteine blood level

2) Right after you get the blood drawn for these Vitamin B-12 blood levels tests, go out and buy some "sub-lingual" (under the tongue) Vitamin B-12 (2 good health food store brands I know of, are Jarrow, and KAL (don't get "time release" type), and start taking it right away.

Rose taught us that "Methyl" cobal amin type of Vit. B-12 is better than the older "Cyano" cobal amin type of Vit. B-12. You could start with 1,000 mcg (micro-grams), once a day, or twice a day (under the tongue). Rose can advise you more.

3) Go over to another forum in this website, called "Gluten Sensitivity/Celiac Disease", in case you might have a gluten sensitivity. Cara is the resident expert there, about Gluten Sensitivity (whether Celiac Disease or non-Celiac types).

a) Also read Dr. Kenneth Fine's "EnteroLab" website, about non-invasive stool sample testing for gluten sensitivity. Here's a link: http://www.finerhealth.com

Dr. Fine is a gastroenterologist who himself, has a non-Celiac type of gluten sensitivity. This can cause mal-absorption leading to a Vitamin B-12 deficiency. And, this can cause auto-immune reactions, where almost anyplace in the body (including brain, nerves, etc.) can get attacked, as an auto-immune reaction to incoming food proteins, that a person is "sensitive" to (like gluten, milk proteins, etc.)

Gluten is a protein-like substance found in wheat, rye, barley, triticale (hybrid of wheat & rye), spelt, kamut (both are ancient forums of wheat), bulghur (used in middle eastern parsely salads), etc. BROWN RICE IS GLUTEN-FREE.

b) Try going on a gluten-free, milk protein-free diet for a month. Also avoid soy, corn (even though it's gluten-free), millet (even though it's gluten-free), maybe yeast, and maybe eggs.

c) Keep a detailed food diary, to see which foods agree and which foods don't agree with you (causing worse symptoms), and do this for at least a week.

4) I have some ergonomics tips, that I learned, when I first started to get TOS. Read and try these tips (I learned a lot of them from people at the TOS forum, over at Braintalk.org --many of those people are now here at Neuro.talk.org). To read my ergonomics tips, go to webpage 10 of my website, and scroll down to Appendix D (some ergonomics tips). Here's a link:
http://cantbreathesuspectvcd.com/page10.html

5) Ask about possible Arnold-Chiari-Malformation (can be born with, or can be acquired), in which the base of the brain (medulla oblongata) partly slips down into ("herniates" into) the top of the spinal cord, causing many awful neurological symptoms! Look at the forum at this website, about this, too.

6) In case of a possible medical emergency that may be happening to you, don't hesitate to call 911 (or get to an ER/emergency room) and see if they can call in a VASCULAR SURGEON who knows about TOS (thoracic outlet syndrome), for a consultation!!

7) WHAT ARE ALL MEDS/MEDICATIONS THAT YOU ARE TAKING? I'M CONCERNED WITH POSSIBLE ADVERSE (BAD) SIDE EFFECTS!

a) Are you taking any "statins" for high cholesterol?

b) Are you taking any acid blockers (either prescribed, or over the counter)? These cause a B-12 deficiency, leading to peripheral neuropathy, & even "central nervous system" (brain & spinal cord) problems!

c) Other meds either prescribed, or over the counter, herbs, supplements, etc.?

8) ANY MOLD EXPOSURE (from water leaks, &/or flooding)?

9) ANY CHEMICAL EXPOSURES? (WORK, HOBBY, INDUSTRIAL, ETC.)

10) ANY SURGERIES? ACCIDENTS? INJURIES?

Hang in there, and don't give up! There is hope and help! Lots of good people here!

Carol
http://cantbreathesuspectvcd.com

[concerned lady]

To find Rose, (for helpful Vitamin B-12 deficiency info, etc.), check on the following forums, at this website (at least):

1) PN/peripheral neuropathy forum

2) Gluten Sensitivity/Celiac Disease forum

Also, I wanted to ask you if you might have gastric reflux? (reflux can be with or without heartburn)--Reflux is often treated with acid blockers, (there can be safer, non-invasive ways to treat reflux), and acid blockers cause Vitamin B-12 deficiency, leading to:

a) peripheral neuropathy (and TOS can be a peripheral neuropathy, in many cases--so a B-12 deficiency can worsen TOS!)

b) central nervous system damage (to brain &/or spinal cord)

And, do you possibly have diabetes? Have you been tested by a good diabetes expert?

Carol
http://cantbreathesuspectvcd.com

[spare rib]

hi i'm new too. you need a neuro that specials in periphal nerve damage. my doc is in new orleans he is the world's leading periphal neurosurgeon, i mean the world. He has taught others this surgery. it is very hard to find help in this field. I'm blessed to have made it 2 times left and right through this surgery. make sure you find someone that knows TOS and they should know a doc by the name DR. David Kline. his knowledge in this field is taught to other neuros. Good luck and wait for the Doc that can give answers.