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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board
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Old 08-21-2006, 07:00 AM   #1
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flippnout HB User
Angry RSD and TOS



I have RSD (CRPS) and TOS both tested for and have. The problem I have is this, been told since it has been so long without treatment for both, go figure it is WC that there is no pain pills that would work for me,yes I have been on some all ready with no help then of course WC stopped treatment and there was none for me.
I have had the nerve blocks got some relief for RSD (CRPS) but not for TOS so that is out, both nuero Vasc surgeon and Pain Doctor both agree on no PT will help will cause more problems,and no meds will help at this time, both reccomend surgery one to remove rib for TOS (no I do not have a extra rib) and cutting the nerve for RSD.
I have my whole right side failing me from both conditions I do not sleep much and I do not do much anymore if one is not bothering me the other symptom is or both I can not go on without Pain Mangment, I see there is no hope but to get this done.
any one out there have this done the operation for TOS and RSD and if so how did it go, how was recovery?

 
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Old 08-21-2006, 03:31 PM   #2
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Re: RSD and TOS

HI FLIPPINOUT I HAVE READ SEVERAL POSTS, ABOUT NOT CUTTING THE NERVE, THAT IT WILL ONLY EXCERBATE THE PAIN. I'M SORRY, BUT I DON'T KNOW WHAT TOS IS, MAYBE YOU COULD EXPLAIN IT TO ALL OF US WHO READ THE BOARD DAILY. AS FAR AS YOUR PAIN, I WOULD DEFINETLY FIND A DIFFERENT DR, I DON'T KNOW HOW YOU CAN LIVE EVERYDAY WITHOUT MEDS TO AT LEAST TAKE THE EDGE OFF DO NOT LET THEM CUT THE NERVE!!!!!!!!!!!!!

LISA

 
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Old 08-21-2006, 04:24 PM   #3
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Lightbulb Re: RSD and TOS



here is info on TOS:Pathophysiology: TOS involves compression, injury, or irritation to the neurovascular structures at the root of the neck or upper thoracic region, bounded by the anterior and middle scalenes; between the clavicle and first rib (with possible enlargement/hypertrophy of the subclavius); or beneath the pectoralis minor muscle. Some authors define the thoracic outlet as an opening bordered by the first rib laterally, the vertebral column medially, and the claviculomanubrial complex anteriorly. The syndrome of compression at this site could be primarily neurologic, involving the brachial plexus, most often the lower trunk or medial cord; alternatively, it could involve compression of the subclavian artery, vein, or both. Thrombosis, embolus, or aneurysm of these vessels is a less likely possibility.

One proposed classification system has broken TOS into the following 3 categories:


True neurogenic TOS: The brachial plexus is injured in these cases as documented by electromyography (EMG) and/or nerve conduction studies.

True vascular TOS: The subclavian artery and/or vein is damaged or thrombosed, as documented by arteriogram or venogram.

Nonspecific or disputed TOS: Patients have symptoms, but there are no abnormal tests to document the lesion clearly. This category is by far the most common type of this disorder seen in the clinical setting.
Many authors have discovered accessory cervical ribs associated with TOS; however, they have noted tough fibrous bands coming off the accessory ribs that are believed to be more responsible for the pathology. The bands cause tethering of the brachial plexus, which results in traction and, therefore, symptoms. Other authors report compression or irritation of the neurovascular bundle more distally under the pectoralis minor muscle or from anterior displacement of the humeral head.

Additionally, clavicle fractures can result in plexopathy from expanding hematomas or pseudoaneurysms that compress the plexus, with variable latent periods following the fracture. Delayed onset of symptoms may suggest exuberant callus from the healing fracture site. Nonunion of the fracture site also can result in direct compression by the lateral fragment, which is pulled inferiorly.

More recently, trapezius weakness due to spinal accessory nerve injury (following cervical lymph node biopsy) has been implicated as a cause of TOS. This results in "droopy shoulder" with secondary compression of the neurovascular bundle, particularly aggravated with arm elevation (abduction).

Causes: TOS most likely has multiple causes. The primary cause is believed to be mechanical or postural. Stress, depression, overuse, and habit all can lead to the forward head, droopy shoulder, and collapsed chest posture that allows the thoracic outlet to narrow and compress the neurovascular structures (see Image 1 ). Accessory ribs or fibrous bands also may be present, predisposing the site to narrowing and compression. Large breasts have been implicated as a contributing cause by pulling the chest wall forward (anterior and inferior); this theory has been supported by relief of discomfort following reduction mammoplasty.

Trauma can lead to decompensation or shifting of structures in the shoulder and chest wall, leading to symptom onset. Additionally, trauma with fracture of the clavicle can result directly in compression of the plexus from bone fragments, exuberant callus, hematoma, or pseudoaneurysm.

Primary vascular lesions, such as thrombus or aneurysm, may be present as well as secondary problems such as emboli. Tumors, such as upper lobe lung lesions (Pancoast tumor), are also possible causes.

Many other problems may predispose an individual to TOS, some of which are classic perpetuators of myofascial pain syndrome, including the following:
Sleep disorder
Hormonal imbalance (estrogen, thyroid)
Inflammatory disorder (rheumatoid arthritis)
Fibromyalgia
Nutritional insufficiency (B vitamins, folate, vitamin C)
Anemia
Infection
Masses, tumors, axillary lymph nodes
Mechanical disorders (short leg, hyperlordosis, hypolordosis)
Psychologic (stress, depression)
Nerve entrapment/impingement (other sites)

I will look for more info as for as these docs they are not quacks they are at a teaching hospital one of the best in the country, I'm so lost at this time.

 
Old 08-21-2006, 09:55 PM   #4
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debloree HB User
Re: RSD and TOS

Flipp, where do u live? Debloree

 
Old 08-22-2006, 10:12 AM   #5
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lisa17 HB User
Re: RSD and TOS

HI FLIP, SO DOES TOS, MEAN THORACIC OUTLET SNYDROME?

LISA

 
Old 08-22-2006, 05:17 PM   #6
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sharon1030 HB User
Smile Re: RSD and TOS

Lisa, I figured I'd answer you since Flipp hasn't yet..you are right.

Sharon

 
Old 08-23-2006, 09:19 AM   #7
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Angry Re: RSD and TOS

sorry Lisa yes that is what it means not trying to ignore any one just been very deppresed because of all this.

 
Old 08-23-2006, 10:50 AM   #8
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Re: RSD and TOS

Flippinout: I think you need to find another pain management doctor who knows about RSD. Cutting the nerve can possibly make RSD much worse! Regards, Lil

 
Old 08-23-2006, 12:09 PM   #9
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Angry Re: RSD and TOS

Funny people say to do this and that like it is so easy to do, I have one of the best nuero vasculer surgions in the country one of the top pain managment centers ranked in top 8 in country,just went and saw one of the top Ortho's yesterday all telling me the same thing! there is nothing that can be done for your pain at this time,no drugs will stop the pain, one might help RSD but not TOS and one may help TOS but not RSD. I would like to know if any one else suffers from both RSD (CRPS) and TOS on the same affected side.
All these docs say since I had a good reaction to nerve block for RSD (CRPS) that I would be a good canadite for this of course nerve blocks did not stop TOS pain. I know it may work or may not what do I have to lose mabey I get some relief so I can go and get treatment from the pain managment,so I can start PT sure my pain will never go away I've been told but put under control so I can have some what of a life,and if it fails back to square one again,I have a chance so I will take it.
Sure I know it might come back worse but my options are closed no drugs will help so how many of you have no meds for this,no drugs,or shots? mine is so bad at this time all doctors are saying sorry you need this done! all options are gone, I do not have money to fly to Germany and get knocked out for a week,and if was not so bad I guess I could go to Boston or Arkansas for the KET treatment there,so no meds no drugs yet wait till treatment comes around so I can go more insane with PAIN no sleep no life no hope i cant live like this,I have to try something.....

 
Old 08-23-2006, 05:28 PM   #10
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Re: RSD and TOS

Have you been reading the TOS board here ??? You would probably pick up a lot of good info there. I'd start there asking if anyone there has TOS and RSD.

I have TOS and RSD, but my TOS is secondary, and not severe, compared to the RSD. My neuro thinks that IF we can get the swelling down from the RSD that is so active in my shoulder, clavical, and scapula down, the TOS may improve enough to become tolerable.

My neurologist gave me a round of botox injections, which unfortunately I had a very painful allergic type reaction to, but it did make a difference in my RSD and my thorasic area, as far as my ability to move, and stretch. It may be something to consider.

I also see a super massage therapist and she works about 1/3 of the time with the throastic area. If you have not tried this, it may help.

By the way, I do not take any pain medication, as such, by choice. I have not had good luck with pain meds and my bodies reaction to them. I was briefly on Duragesic after the botox nightmare, and darn near had numerous car accidents, was terribly ill, itched constantly - could not wait to be off it. I take other kinds of medications. It's not easy. I use a LOT of chronic pain meditation.

Have your doctors tried things like clonadine, topamax, calcitonin.... or just tried the standard Neurontin and lyrica and said pain meds won't help, lets try surgery? If they could get the pain of the RSD under control, maybe you could handle having the TOS. Or, like me, if they can get the swelling under control with the vascular drugs, the pain of the TOS will come more under control... My next drug on the list to be put on is the trental (trentyl?) to see if it can take the swelling/inflammation out of my shoulder/arm. The neuro says reducing the swelling should lessen the TOS pain. I am anxious to try it, but they only add one thing at a time and they want to let the botox wear off first.

Good luck..
Jules

Last edited by daylilyfan; 08-25-2006 at 04:03 AM.

 
Old 08-24-2006, 09:23 AM   #11
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DiamondLil HB User
Re: RSD and TOS

Flippinout: I was in no way suggesting that you "just fly to Germany for treatment" or that your doctor does not know what he is doing. Getting another opinion may open an avenue for other options before you commit to surgery. Sometimes the surgery works and sometimes it does not. If it does not, there is no turning back.

It sometimes takes a long time to get the pain meds that are right FOR YOU. There are many pain RXs to try and sometimes it takes a cocktail of them to work. Just don't give up on them too soon.

Try to find out as much as you can about all of your options. I know nothing about TOS, but on another board I read that there were mixed results regarding the surgery.

None of us with RSD find dealing with it easy and I hope I did not communicate that to you. I live in a small town and am also on Medicaid so my options are very limited as far as getting a doctor or various treatments.
I have 34 cents in my checking account, so I guess I won't be going to Germany.

My RSD is due to severe sciatic nerve damage from minor laparoscopic surgery. This was done by a world renown hip surgeon who travels to other countries and jets accross the United States to perform surgeries. Being famous does not mean you cannot make a mistake.

I wish you well on finding relief for your pain. RSD can at times be a lifelong journey in finding relief and learning to live your life as best you can. It can be done; it just takes time and patience.

Regards, Lil

 
Old 08-24-2006, 09:50 AM   #12
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Re: RSD and TOS

hey thanks guys, my problem is this was told I had TOS first, my first Ortho did not know and did shoulder surgery and a mumford removed 1/4 inch of coller bone, that caused TOS to be worse as you can imagine it is in the area of TOS. Along with this it caused RSD now, was on meds nothing worked.
All docs say they are sorry it has gone on so long, as you can see it is WC case so IC let me get worse said I was better nothing wrong with me and stopped treating me.
I'm saying is no anti inflamitory will help trust me I have did reasearch on this I'm not looking forward that I haft to do this nor my docs,but for me to have a cocktail of meds I must have pain reduction and to get pain reduction they say I need this operation so I can start pain managment.
My doc is one of a few in the country who can do this he teaches this to other docs I just want to know if any one else had this done. Occupational therapy or streangth training made it worse was told by docs it made things worse just like the stupid ICE they put on my shoulder I told them I could no longer feel the ice what did they do but leave it on longer they did not believe me.I will in time have a massage therapy and water therapy I was told after surgery and after I heal.
Man I know it may not help but it is a chance it might,like my docs are saying this is a chance so I can take cocktails,and anti inflamatories,and PT,so on.

 
Old 08-24-2006, 09:38 PM   #13
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daylilyfan HB User
Re: RSD and TOS

I told you wrong.... I was thinking of the old board I used to belong to, which had a specific thorasic outlet forum... here it's under Neuromuscular Diseases...if you scan down through there, you see messages about TOS....

I am sorry you are having such problems, and hope you find some relief soon.

Jules

Last edited by daylilyfan; 08-25-2006 at 03:36 AM.

 
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