Sandy --

It just sucks when the doctors you desperately go to, seeking relief, are the vehicle to making your situation worse.

I imagine that many people reading your post have had similar experiences, and I know that in my case, I was incredibly aggressive in seeking out treatment (you tend to do that when your body is on fire), and along the way either testing or treatment by well regarded doctors has made my own situation worse. Indeed, I'd be better off today if I had simply done nothing.

So I commiserate.

The first week of January I'm scheduled to see the same Dr. Getson. I too am originally from that area (there's no escaping home it appears). He does seem to be spoken well of, at least here.

I'm curious to know what you're planning to do with him now. If you discussed getting any ketamine treatment, did he go into detail about where he does any infusions, his fees, or the like?

That is why I am going to see him. Any information you might be able to share would be helpful.

Thanks.

Dear DS Hue,

I'm happy to share whatever information I can. Alaska49 helped me out with info when I was planning to go, too - he's been going there for a while and loves Getson.

Where did you grow up? I'm from Haddonfield. One of my brothers lives 10 miles down RTE 73 from Getson's office in Erial, NJ. The whole area around his office is so different I didn't recognize much. The circles are now huge intersections instead the old wild free for alls...I can't remember if the one by his ofice was the old Marlton Circle or the old Ellisburg Circle. Probably Marlton... We came in from the shore off of the AC Espressway instead of the way I would have come if coming from my old house.

Anyway, I prepared my own package of medical documents to submit to his office in early October. It included all the records from my doctors since I was diagnosed with RSD, starting with the surgeon, the PM, the a new PM I switched to in Boston, my PT, a rheum consult I had, a neurology consult, my PCP papers, and lab and MRI results. I also took the time to summarize on a month by month basis the changes that had been occurring to my body over time and with changes in weather, meds, treatments, etc. I prepared a timeline, at his office's request. I sent him the $400 check required, I am hoping it might be reimbursed from my insurance company.

I met with him for one and a half hours. His observations regarding my posture, the slant that is starting to develop on one side of my face, and the areas of my pain and spasming were just so interesting. I feel like I have wasted a year of my life slepping around RI and Boston with amateurs because this guy REALLY cares about what he does and he's passionate about discovering exactly what's wrong with each patient, and everything he said just made so much sense! It's like somebody finally CARES and FIGURED it out!! It's so wonderful to finally find out what's really wrong, but devastating at the same time because the consequences of what went wrong are so tramatic for me.

Anyway, Getson's report for my WC lawyer was in my hands in a week. It's in extremely good shape, a few typos, nothing bad. It's hand's down the best report that I have gotten from any practictioner to date in regards to its completeness, the depth of it's analytic data, etc. He did a really good job.

Getson's ketamine infusions are performed in his office. His office is in an office building next to a full service hospital - I think its called Ventura. I know my grandmother was in that hopsital once a long time ago, it had a different name then. The room the infusions are performed in has lounge chairs all set up so the patients (maybe 4 or 5) are together, instead of all separated in rooms and by themselves alone. I'm a little concerned about the chairs since I can't lean back against my head, I can only lay on my side...anyway, he has infusions nurses to take care of you. It costs $1200-$1500 a day, in advance.

I need WC to pay for my ketamine. I arranged for his report to be faxed late Friday afternoon to my attorney's office. I am assuming there will be a court date. I understand that my WC carrier has denied all everything so far for me case, but I've gotten my meds, my docs, my treatments anyway because my lawyer has been able to succeed on my behalf for me in court. But this is new, and ketamine is still deemed experimental despite Dr. S.'s latest reports, so who knows what is going to happen. I am very very terrified of what may be decided.

I can start getting ketamine in Febr according to his schedule if the courts order the insurance company to pay.

Getson's report stated that I have an 80% of getting better on ketamine, and in his opinion, it is the only treatment option for my RSD, follow by occupational therapy, that he recommends at this time. He is also stated that without ketamine I will be completely incapacitated, disabled and unable to return to work for the rest of my life.

I've had a tough time with that one.... I have worked since I was 14 years old, often at 2 jobs. During busy season as a CPA I have worked 40 straight days, logging over 300 hours of OT. I am only 49 now, and I think I deserve a chance to get better. In the long run, despite the cost of ketamine, I think the numbers would still make sense. My meds are really expensive on a monthly basis.

If I think of anything else I will let you know.

XOXOXO Sandy

I'd just like to know if there is anyone else out there that has a similar background like mine? Where have you have all turned under these circumstances? How do you ever mentally get over this stuff?



Sandy, what a horrible ordeal. I have read of many people here who have had nightmares with WC. Mine was an injury from negligence, however , not involved with work. However we have similaraties.

The ortho surgeon who eveentually ended up treating me for six weeks. and who I went on an on about the burning pain thinking I must have bone cancer or something, never diagnoside rsd. Only to find out a year and an half later, like you- after the wrong type of physical therapy has caused my rsd to spread and worsen, I found out that this ortho was very famililar with rsd and had referred many patients to the doctor who did finally diagnose me. Can you belieive it? Why didnt he send me.

Because he wanted to get max benifit from treating me for the fracture and milk my insurance company. I also want to mention that this doctor was, yes was, a close family friend so we really trusted him.
When he found out later I was diagnoside by the doctor that did- he said oh yeah , thats where we send all our patients who dont stop complaing. to this day i can not belieive he let me suffer and that his is a huge reason mine went full body so quickly.

I have to tell you I dont think Ill ever get over that he could have had me in treatment in the 6 month window.



Having shared that may I say I am so glad you have found dr. getson. I have read only wonderful things about him. I do hope you willl be able to start the ketamine infusions. I have posted previously about this but my alloydina was so severe mentally i really did not knw how much more i could take. What years of ketamine infusion did for me was greatly reduce my alloydina .
I highly recommend infusions for this.


My insurance paid for it all. I did have to prove that there was no physican within network to preform the treatments. that was it. I never spoke directly with my insurance company. Carol in Dr. S's office did it all. and good thing she did, I was in no condition to handle anything like that. since wc seems to stall and take so long for most people on here, Is there any possibliity your insurance will help. ?

After meeting with me and talking about my history for only about 10 minutes, he figured out the source of my RSD - Brachial Plexus nerve injury.



Also conincientally, dr. s diagnosided the rsd in my brachial plexus on my first vist, I was not even aware of it I was so intensely focused on my leg, my orginal injusry sitie.


So 3 years later I'm DESPERATELY waiting for WC court to PLEASE approve ketamine infusions so I can hopefully become well enough to go back to work.




In hoping to go back to work.. well i did everthing i have done with that goal, the three years of infuslons, three 5 day sets i ICU and the coma. I have not been able to return, Yet i try eveything new if I can afford it.
Mentally it has been almost impossible for me to forgive some of those that played a role in what i went through.
My therapy had so many more important goals. Like how to mentally survive the pain, the loss of identity, being a burden on others after being so independent my whole life. I am still in therapy. i could nto have made it with out the therapy especially after almost dying in Germany.

I hope some of this information will help, especially trying directly with your insurance company.and I will have in my prayers that you are able to get the infusions Sandy, they really do help so much and maybe they will help you enough to go back to work. I hope so.

thank you for giving me the opportunity to share my story too. Let me know if you have any questions about the infusions, Id be happy to help. my very best to you, cz

Sandy, sorry I had a hard time getting quotes from your post in the right place. Hope my reply isnt too confusing!!

Dear CZ,

Thanks so much for sharing with me. Are there any other good sources of information that you have about the brachial plexus RSD? I am curious to learn more about it if I can.

Never give up. You are clearly an extremely strong woman, a survivor, and while 3 years is an incredibly long time during the days as we are living it, hopefully someday it will be an insignificant fraction of our total life. (think high school - 4 years - a significant experience, yes. But now equal to only 8% of my total life).

I pray that you are feeling relief from your lesions all the time. Your posting had a big impact on me and likely many others too, I am so sorry that your feelings were hurt that we didn't respond. I truly hope you are feeling better.

Peace and love, XOXOX Sandy

This is something I had wrestled with for a few years, and your right it is a hard one to get past. My whole ordeal started with a doctor making a mistake. Before this I was in the gym 4 days a week, and working in a career sent from heaven.

It took this guy one oops, and life was forever changed. I knew I had to forgive to get passed it, but it was the hardest thing in the world. But if you keep those feelings it will cause more damage than the damage already done. It doesnt mean you have to like the person, just means you forgive so you can move on with your life.

It took almost 4 years to find out what exactly was wrong with me, and once it was explained, I was devastated to find out that he knew the whole time. They could have started treatment right away but denied everything. This news was almost worse than the actual physical damage.

Hopefully you can find an attorney and do what I couldnt. They should never be able to avoid the penalty for hurting someone, then avoiding or side stepping the problems they caused. I will be praying for ya

Allen -

To call that outrageous would be an understatement. If it's not too late (and you would have to discuss that with a med mal attorney, if you haven't already filed suit) your old doc could be looking at some serious punitive damages: the sort of thing that his malpractice insurance doesn't cover, but could never be discharged in bankruptcy so long as you took appropriate and timely action upon being notified of the commencement of a case, etc., etc.

Mike

CZ -

Please see my comments to Allen, above. That you both share this hideous detail is mind blowing. I am so sorry.

You would have to check with a med mal attorney in your state regarding whether a claim is time barred, but if it isn't, I have some doubt in my mind as to whether an award of punitive damages could be subject to subrogation in the first place. You might want to have that checked out. That is, if you are in a position to accept the stress of litigation that could easily turn into a prolonged knife fight.

Mike

ps For the record, this is officially my 666th post on NeuroTalk. (I knew I could feel the horns trying to poke through.)

1st Accident= T-Boned by a Tractor Trailer, (I was in a pickemup) and the frame of MY truck was BENT like well, bad!
A frame goes straight, mine went like sort of a little 'U'. Also the TTrailer could not be driven from the scene.
WE made the News!

I went 7 years with No DX! (Oh, I'm sorry, Severe Strain and Sprain).
I went to the Dr Who was on the Cover of the Phila/Inquierer, Sunday Paper, he did all the work for our wonderful, Phila. Sport Teams! Dam, did he do an exam on me! He picked and poked at my spine (where most of my pain centered @ the time), and told me. "I don't know what you have. But, it's not operable, It's All microscopic. I can see how your back, your nerves, your flesh all respond to my stimuli! You cannot be fixed! I'm so, so sorry. He was a great man. He did advise some PT, and a TENS unit. And followed up. But,
he was an Ortho!
It's just not within the realm of these folks training!
They need to learn, how to hand a situation like ours off, to a Neuro. But, I don't think they trust one another?
I don't know?


The first thing that my next doctor noticed, (Once I was smart enough to get the heck away from Ortho's (my fault, or theirs? ) I heard Thoracic Outlet Syndrome, "TOS".
Which, is exactly what you're all talking about. Barbaric tests! OMG, you wouldn't want to go through them!
"Brachial Plexus" IS a form of TOS = Thoracic Outlet Syndrome!" Right?? Do we all get that??
Or, does someone still think I may be wrong? (I'd much rather that you tell me!)

Saw over 100 doctors. LITERALLY! These were the days in PA where we had unlimited from our Auto! Didn't hafto OK anything , and the docs turned into (A Bad Word). Just Sign Here. coverage.

Got to the point, where I refused to sign!
NO, you're not gonna waste MY time, and Bill my Ins Co. for it!
(None of those jerks EVER chased me)~!
(Why, or how could they?)

Weird thing, Nationwide and to a lesser extant, State Farm lobbied this bill in. And, then just as quickly lobbied it out.
If, for an instant, you don't think BIG BUSINESS runs this country, Get a Bat, and Hit yourself in the Head! Lightly!
Because the other side is WORSE!
(Why did this Happen? ((Michael?))
It's my position, that, the ins. Co's thought they'd wrap it all in under the WComp laws! Nope! Didn't quite work out that way!
HIT REVERSE!




Great to have you great friend, to rant (speak) to!!!!


love,

pete

OMG!
A Man of the Lord, (Or at least NOT of Satan)

And, an Attorney as Well!!

The World is Definitely getting Better!

Thank YOU, Mike!



Pete
asb

BTW,

I'm going toward 27 years of this
TOS.
Herniated Discs. Upper
Herniated Discs Lower
TBI (Traumatic Brain Injury)
Migraine (Headache)
Carpel Tunnel
Ulnar Nerve
Sleep Dis, Trans, (Transomnia) "can't' sleep, can't stay awake."
Vertigo
Post Traumatic Concuss.Syn.
Epliepsy, Traumatic
RSD Upper
RSD Lower
RSD Other
and my favorite due to meds.....
Constipation....


There are several more, that he doesn't check off,
He knows they're there, as do I.

I suppose as he doesn't want to depress me any more...
He's got it all in his reports, and office notes....



Pete
asb