Update--again

Hi everyone,

I wasn't sure if I should post this...I just want everyone on this site to know how much I appreciate all the kind words and encouragement I've been given.

I went to my EP's colleague yesterday to talk about possibly extracting my device and repositioning it on the other side. He said he would do it, but he called the procedure on me "dangerous" and "life-threatening." He made no hesitation to scare the living c__p out of me. I don't want to do anything in this fashion either, but he offered no help to look at my arm swelling and pain other than have me try yet another medication for pain only.

It appears the only other alternative I have with these maniacs is to slowly destroy my innerds with all the drugs and become an addict.

Today I am visiting my internist on staff with this place for one last visit about this. Unless I get help from her, I am not sure I can go on pursuing this any longer. I am tired, going it alone and just don't have the resources to go anywhere else--like Cleveland or Cedars in LA. (PS I am stuck in a toilet bowl here in the Midwest). I am considering somehow trying to get to Cleveland, but resources are holding me back. I will have to come up with another plan, like seeking alternative care when I can.

I am sorry to write like this. Thank you all for your understanding. I am still in pursuit mode, not willing to give up, but it's become obvious that trying to wrestle with these people is futile.
Dodi

6 Comments

Cleveland good choice.....

by auntiesamm - 2007-07-25 05:07:19

Hi Dodi,
I hope you can get to once of the big medical centers for care. Personally, I would go to Cleveland Clinic. The head of their cardiac programs is Dr. Steve Nissen who I knew as a boy in So CA. He has done lots of great investigative work in cardiology and was involved early on in the Vioxx situation. His dad was a practicing OB/GYN way back when and I was his office manager. He was an excellent physician as is his son. It will be important no matter where you go - even the internist in your same group - to have everything chronologically organized on a piece of paper so nothing is overlooked. Good luck - I hope you find the answers soon. God bless.
Sharon

Could it be????

by Stepford_Wife - 2007-07-25 06:07:46

Hi Dodi.

I'm glad you are not willing to give up, because, neither am I. Here is something else I found. Sooner or later, we are bound to figure it out.

~ Dominique ~





Reflex sympathetic dystrophy.

What is it? Reflex sympathetic dystrophy, also known as RSD, is a condition of burning pain, stiffness, swelling, and discoloration of the hand. RSD includes other medical diagnoses such as casualgia, Sudeck's atrophy, and shoulder-hand syndrome. RSD occurs from a disturbance in the sympathetic (unconscious) nervous system that controls the blood flow and sweat glands in the hand and arm. When the nervous system becomes overactive, burning pain is felt and swelling and warmth are left in the affected arm. If not treated, RSD can cause stiffness and loss of use of the affected part of the arm.

What causes it? In some cases, the cause of RSD is unknown. Often an injury can cause RSD, or the symptoms may appear after a surgery. Other causes include pressure on a nerve, infection, cancer, neck disorders, stroke, or heart attack. These conditions can cause pain, which sets off the sympathetic reflex causing RSD symptoms. Nerve injuries may change the way the nerve impulses are sent, causing a "short circuit" (Figure 2).

Signs and symptoms. The pain associated with reflex sympathetic dystrophy is often described as burning in nature. Swelling can cause painful joints and stiffness. RSD has three stages:

Stage I (acute) may last up to three months. During this stage the symptoms include pain and swelling, increased warmth in the affected part/limb, and excessive sweating. There may be faster-than-normal nail and hair growth and joint pain during movement of the affected area (Figure 1).

Stage II (dystrophic) can last three to 12 months. Swelling is more constant, skin wrinkles disappear, skin temperature becomes cooler, and fingernails become brittle. The pain is more widespread, stiffness increases, and the affected area becomes sensitive to touch.

Stage III (atrophic) occurs from one year on. The skin of the affected area is now pale, dry, tightly stretched, and shiny. The area is stiff, pain may decrease, and there is less hope of getting motion back.

Diagnosis. The diagnosis usually is made when at least three of the following symptoms are present: pain and tenderness, signs of changed blood flow (either increased or decreased), swelling with joint stiffness, or skin changes.

Treatment. Early diagnosis and treatment are important. Three forms of treatment may be combined: medication, physical therapy, and surgery. Medication taken by mouth can help decrease the symptoms. To reduce symptoms and provide long-term relief, local anesthetics may be injected into a nerve bundle at the base of the neck (stellate ganglion block). In some cases, a tourniquet is applied to the arm and medication can be injected into a vein along with an anesthetic. Your hand surgeon may recommend therapy by a hand, occupational or physical therapist, or physician. Therapy is important to regain function and reduce discomfort caused by RSD. Successful treatment depends on the patient's full and active effort in therapy. Occasionally, surgery is performed in the later stages, but the results can be disappointing. Your physician can advise you on the best treatment for your situation.



Hi Dodi,

by Gellia2 - 2007-07-25 07:07:15

This is very frustrating and I can tell you are weary. Please don't give up. The underlying theme seems to be pain and swelling in your arm. If you can, try an ice pack on your shoulder and collarbone area. If it is inflammation, that would be the treatment. It may also help the swelling. If so, maybe we're on to something for you. You can't give up though. No one should be in pain with a pacemaker and if you have to, get yourself to a different doctor all together. In the meantime, they are only dealing with the pain with more medications. Try the ice. I have found great relief for collarbone pain and neck swelling with this. I do hope it helps. Nevertheless, please don't give up.
You have friends here.

Toledo Ohio

by bini - 2007-07-25 08:07:17

Hey Dodi,
I went to see a cardiologist out on toledo ohio, he was wonderful! I am still new to this site so I am not sure if you can give dr's names...but if you are interested you can email me privately and I will give you more info.
He works out of the medical university of ohio in Toledo. He put in my PM and was just so compassionate and understanding. I had swelling in my left arm and a slight buldge in a vein....I was terrified! I went to his office-no apt scheduled(he is VERY busy) and he took me and said not to worry it the vein where the IV was and i just had a start of an infection and it will go away with treatment.
I traveled from RI to see him, and I wish i could move to Toledo to be closer to him......he has been my life line and is just truly AMAZING!

Anyway, keep fighting and don't give....someone Dr. will now what to do!
Bini

Hey!

by tcrabtree85 - 2007-07-25 09:07:41

Dodi,
I really feel for you. I don't know where you live in the midwest but is it possibly for you to get to Mayo Clinic in Minnesota? I am going that way sometime in August. I will continue to keep you in my prayers please keep us update on how you are doing Dodi.


Tammy

dodi--RSD

by luckyloo - 2007-07-26 09:07:02

hi dodi,

i have been gone for a week and just read your post.

are they saying you have RSD? i have had RSD for 4 years now. if i can support you in any way let me know.

if funding is needed to travel, contact the airlines. they have the "angel flights" that can help you get to appts. cleveland clinic also helps those who can't pay.

don't give up!

luckyloo

You know you're wired when...

Your ICD has a better memory than you.

Member Quotes

Focus on the good and not the bad.