Your Help Please
 

Hi Everyone,

Most of you know I have the TOS/RSD DX. Are these SX TOS or RSD?

I am post OR 9 months from having my subclavicle artery released, and I had surgery on the Brachial Plexus nerves. The best thing I could do is walk, but I get very light headed and dizzy. If anyone has any ideas I would appreciate it.

I hope for the best. But should I plan for the worst?

Hugs, Roz

HI Roz,

I had surgery on nerves, no vascular but they put me on the recumbent bike and had me do 15 minutes at a low pace in the beginning. 15-16 minutes was a mile.

I hope that is what you were asking. I don't know what to do on the dizziness. It still annoys me when it comes.

Hope you have a good Saturday

Hi Shelly,
My surgeon says don't do anything much. No P/T. I was told not to even sit up very long. I believe you have the same surgeon I do, but I am nerve injury, subclavicle artery compression and I had vein involvement as well. My pain levels are very low. But I am no wimp but very, very, dizzy and light headed. Is this Tos or RSD. Does anyone know? Hugs, Roz

Hugs, Roz

Hi Roz,
 

Have you had a repeat neurography lately? Prior to my re do I was becoming very week I had trouble walking up the stairs I would become dizzy and sometimes unsteady. Dr Filler had to spend an additional 2 hours on my surgery this last time. The scar tissue had built up quite heavily around the ulnar nerve. He told me that the septra film from last time had not taken. This time he had placed a double dose. I am now having sever burning and color changes in my right arm. They believe it is from the sever compression on the nerve. I see Dr Filler on the 21st and at that time if the nerve has not calmed down then he will look into a ganglion block. Maybe it is possible you have scar tissue building up on the vascular area again.
I hope for the best.
Many Gentle Hugs :hug:
Dawn

Hi Roz,
 

Even though you had surgery this might still be a symptom of the TOS. Also you might want to be checked for Vertigo. That often comes with the TOS.
Also could be your meds. I am finding if I take a little too much of my Methadone compared to what I'm use to and use a Lidocaine patch also I end up dizzy and lightheaded.


Ada

Hi Roz,

Sorry I think I might have misinterpreted your question:confused: . I am so sorry you are feeling so dizzy. Is it more of a dizzy room spinning feeling or more off balance feeling. Do your ears feel full? I know it's a sucky feeling. Don't know if it's TOS or RSD.

A couple thoughts though and this is based on my current way of feeling so it may not be applicable at all. If it sparks a thought great, if not I am sorry.It's just a shot in the dark.

My dizziness has been off and on since the surgery. Even felft like my balance could not keep up with my eyes. Weird feeling. I told Dr. Filler about it but he did not think it was related. So I decided to go to ENT/Head and Neck Doc. He told me everything looked fine from the outside but that all those nerves that Dr. Filler operated on lay close to some of the nerves that lie close to the head and ears. I told him that it always improved when Filler put me on steroid packs for the nerve imflammation over the last couple days. The ENT said well ears which control dizziness and balance always respond aawesome to steriods and vey quickly too. He said that he thought maybe the inflammation from the nerves and the surgery was a large enough area that inside where he could not see that the nerves going to the ears and the tissue around where chronically inflammed. And when I hear the word chronic I know it will take me a while to fix it. So he gave me a steroid nasal spray and so far it is helping. I still get that dizzy off balance feeling more in the evenings now but it has improved somewhat.

Maybe worth going to see ENT doc?

Anyways many :hug: to you and I hope you start to feel better soon

Can it be something else
 

Roz,
Could it be something else, related to medication. 9 Months is too long to be anesthsia, but, it could be something else medical or medication brewing.
Have some blood work done, there may be a small chance of some scar tisue growing around the vascular bundle too, maybe a MRI or something could show that.

Check your sugar, thyroid, even heart for some kind of issue.
BY playing deduction and ruling out, medical or medication then can start to say maybe some scar matter or adhisions where they don't belong or other issue.
Is it any other times, like waking up, or sleeping

I would cut down on length of walk, and make sure you support your ams on a fanny pack or pockets, don;t swing them. Swinging arms is a big no no to TOS whether post op or not.
Hope it resolves,

di

Hi Roz,
could it be vertebral artery sx?
I forgot do you have any c spine issues?
Does you neck feel tighter than usual?

that may or may not have anything to do with the V artery - but just asking.

I did have very strong dizzy, vertigo, weird spacey visual stuff happen during the beginning of my rsi/tos injury.
It would come and go in waves and was worst when I was standing still- if i was moving it affected me less.

I did think at first that is was regular vertigo- and got some Dramamine- but it only helped for a few minutes, if that.

The most telling part for me was those sx gradually faded away as i got PT, was off work and all the self care stuff i did at home.

I did have a separate bout of dizziness and then rapid heart rate last spring. but did blood tests and such - which all came back normal.
and then the sx faded leaving the doc to think it was just an odd bug of some sort.

Hi Everyone,
I want to thank each and every one of you from the bottom of my heart.

Dear Shelly, What you have stated makes so much sense. For the first 2 years I was miss DX with a torn rotator cuff with pinched nerves running down my arm. Then I got the RSD DX. I did not get DX with TOS untill 4 years into it. I got 3 opinions before going into surgery. They all said surgery, in my case. Filler MD saved my arm. I would have lost my right arm if it wasn't for him.

Dear Dawn, Please do not be like me and cancel your appointments with are Doc. Hang in their. With the recent RSD DX I only hope it will burn it self out right away. You need to move quick, you are time sensitive. Big Huge Hugs, Roz

Dear Ada,

Please take care of yourself. I know you have the the TOS/RSD DX as well. Like Mike has told me it's not like winning the daily double. Be good to you. Huge Hugs, Roz

DiMarie,

First off I beg of you to forgive me. For not responding sooner. I lost my sister several years ago, she was in her 30's and was hit by a drunk driver while walking.

I am 48 years old now but we were 10 months apart. We were like 2 peas in a pod. We were very, very close. When I saw De's photo's my sister looked soo much like your lovely De, it put me in shock.

When my sister went to a better place it was like my heart had been ripped out totally from under me. I want you to know only God gave me the strength to even brush my teeth, even though I was mad at him.

I care very deeply about you. I totally undestand infact I miss her very much still today. Even though we don't know each other real well, their is a bond with this medical hell, if not alot more. Be very good to you right now. Love, Roz

Hi Jo,

What would any of us so do with out you? You are a pillar of strenght for us all. I am so thankfull for you. You are such a blessing. I hope your life will be filled with so much abundance. Thanks so much for everything. Hugs, Roz

Roz, I had a full EKG done on my heart due to dizziness and some other symptoms, pre-op. All were clear, and what's funny is that post surgery I have hardly any headaches or dizziness anymore. (I still have horrific pain though.)

Here is my last list of symptoms:

TOP 5 SYMPTOMS – New Symptoms In Bold Italics

A. Pain – Burning Pain all over body that moves around from upper body, arms, forearms, back of legs, back, belly, a burning pain that cannot be controlled by medications that I now believe is / was RSD. Fluctuates and is not “orthopedic” like TOS pain – high nerve pain. Seems to come 6 to 12 hours after ANY movement, and stays for 4 days approximate at worst, but is ALWAYS present to some degree. Medication does not really control this pain, but only helps me to a small degree.

1. Constant pain in R forearm, hand, shoulder, side of neck and shoulder blade. Constant pain in entire upper body and lower left foot / ankle, bed-ridden 85% of awake hours. Pain includes orthopedic type pain, feeling of bruising, and “nerve” or burning pain which can move all over the body at times.
HAND SIZE WENT FROM 8 TO 8 1/2 TO SIZE 11 IN RING SIZE.

2. Feeling of swelling in R arm, especially hand. Feeling of swelling in both hands, forearms, neck, cheeks, ears and ear areas, back of head, shoulders (all of this bilat, less when in bed propped with multiple pillows and more when any physical movement.

3. Tired. Extreme fatigue daily, requiring daily multiple naps, interspersed with nights of inability to sleep due to 8-10 pain, sleep is usually only several hours at most due to pain.

4. Inability to use R hand / arm normally. Right hand trembles, loss of use almost completely after initial exertion. Left hand has some use, but with extended exertion also loss of use.

5. Head aches, especially related to the neck muscles and behind the right eye. Headaches are still daily, disabling, and include several migraines per month, and include pain to the jaw, (bilat), behind the eyes, up the side of the face, and ears.

CURRENT SYMPTOMS – New are italics only


RIGHT
TINNITUS – bilateral now, and includes painful buzzing, and need for complete quiet, includes pain from loud voices, music, television
R NECK PAIN – CEMENT MUSCLES
SWALLOWING DIFFICULTY – repeated choking from ANY steak or types of meat, now avoid any “chewing” type food, and do not chew gum as this causes headaches. Eat soft foods to avoid choking. Fiance has done “Heimlich” maneuver several times to push out stuck pieces of meat or food, and I repeated choke on “spittle.”
BEHIND RT EYE PAIN
RIGHT HAND – LOSS OF USE, PAIN, SWELLING, COLOR CHANGES -
FOREARM – (SAME)
ELBOW SPOT – Elbow “hot spots” are now bilateral and I can make them “happen” by brushing my own hair. Due to immediate pain, and later swelling and more pain, I cannot brush out my hair, however, if I do brush out my hair, I can usually cause very, very “hot spots” to occur at the location of the forearm / elbow on bilateral areas.
Zapping and electric stabs at bilat elbows, mostly at LEFT elbow.
SHOULDER BLADE – DEEP PAIN – This painful area makes “marble” sized knots and is now bilateral, not just right-sided. I good masseuse can slowly and carefully smooth these out to provide some relief. However, a bad masseuse who goes too fast and hard can cause worse pain.
SHOULDER AND TOP OF SHOULDER – DEEP PAIN – Pain is much more severe now, and is completely bilateral now, and the area is rock solid.
OCCASIONAL ARMPIT – This area is OFTEN very sore, lumpy, cysts and painful. Concerned about lymph problems.
CHEST BELOW COLLARBONE – MUCH more painful to touch than before.
RIGHT FOOT NUMB / PINS&NEEDLES – after a day of extreme pain and having to dress for doctor’s appt., right foot went numb during shower and never came back to normal. Right foot is still “numb” but is not without pain – the pain is “pins & needles” and is a painful and uncomfortable sensation causing pain to wear any closed shoe. Also, foot went from 81/2 to size 10.

LEFT
SYMPTOMS BEGAN 3/03 WITH NEW P/T – ABOVE RIGHT FOOT DESCRIPTION. LEFT FOOT IS PAINFUL, PINS & NEEDLES.
LOW LEG SHOOTING / ZAPPING
Zapping and shooting electric stabs at elbows
LEFT SHOULDER STABBING / RIPPING TYPE PAIN / CAN’T LIFT ARM AT SIDES – Lifting pain has resolved but I restrict ANY lifting with left arm now to 1lb
PAIN TO LEFT ARM WITH DRIVING – I have stopped driving due to pain to left arm, loss of ability to move neck properly to see, dizziness of head and eyes, inability to properly drive
HAND – UNABLE TO LOOSEN “GRIP” – This is now a bilateral problem, grip remains after it should loosen
HAND – SWELLING – See above, hand size is from 8 for finger size to 11

BILAT
HEADACHES – CONSTANT
THROBBING TYPE
MIGRAINE TYPE
CEMENT MUSCLES
PAIN BEHIND RIGHT EYE
PAIN AT TOP MOLARS ON RIGHT
ORGASM “AX LIKE” HEADACHES
SWOLLEN BRAIN / NECK HEADACHES (THE WORST)
ELECTRIC SHOCKS THROUGH ARMS UPON CERTAIN MOVEMENTS





New Symptoms to Discuss: (This was last March 06.)

B. Dizziness several times a day, including eyes rolling in head, fluctuating heart beat, hearing disturbed, feeling of losing touch with reality and fainting – even if lying in bed at time. This is scaring me.

Hi Tam,
You have described so many of the TOS/RSD SX we have and get. I love the way you described cement muscles. My hope is that they do not turn into full on concrete.

Vicc from the RSD web site has brought up some very good points about are microcirculation being involved. Big Hugs, Roz