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-   -   Can TOS cause flares and remissions? (https://www.neurotalk.org/thoracic-outlet-syndrome/10752-tos-cause-flares-remissions.html)

DiMarie 01-15-2007 12:02 AM

doctors
 
Dr. Lee Barry Dellon, a pain specialist, I will look for the link, he was wilth John Hopkins, now on his own pain specilist, also Dr Cerino treats thoracis outlet syndrome in the same area.

Interviewing a Neurolgoist make sure they say yes, they diagx and treat tos. IF they say no, then continue. I think that is why several went on their own form Johns hopkins. They were not sympathetic to pain need or diagx of TOS patients.
If you have a brain tumor or something subjective to diagx like stroke it is better.that is neuro-surgeons....

I was going to take my daughter to Johns Hopkins, pain mangement, but if I take a trip down it likely will be with Barry Dellon for testing and consult for future goals and plans, as she already has a lengthy digx history.

Otherwise it will be out to Denver or stick to PA doctors long term for maintance no surgery's. Except pain pump.
Di

I know when crisis hits with kids, I have two with physical or mental issues, (occassional legal) and son tumor in the brain on pituatary that cause a lot of harmonal emotional flare ups.
With their trigger points, Epidurals, pain doc appointments, mental health issues like a days notice to be driver for a skin tag to be removed...., dental issues, foot doctors, gyn, the other for trigger point, then ultra sound, I don;t have time to set my mamagram followup!

Hope you find time for you and get relief and answers
Di

lailavia 01-20-2007 08:17 PM

Drs.
 
I just noticed your post. Is it a Dr. Michele T. Cerino? There is one listed in my HMO specialist handbood as a thoracic surgeon and vascular surgeon. I just left a note with my Doc friday requesting a new neuro consult in this area except for the morning tremors part. That is a long haul up there. I have to have a referral with a specific name on it. THis Doctor is not listed as a neurologist. Plus my primary doesn't think its thoracic either and I have to go thur her for any referral. I cannot afford to pay out of pocket. I guess I'lll see what they say and just see what the next doc says. The thing is I still have the vertigo/off balance feeling but not as bad, and I notice my left shoulder arm acting up off and on. If I sit my neck starts hurting. And sometimes tingling up to my left side of head. THe Doc who referred me to Hopkins for am tremors forgot to even list my sx of spine or whatever they want to call it that I was already being seen for. OH well. Have to wait to see what they do. THanks for the names. The other Doctor is not in my book.

Peace to you tonight.

lailavia 01-28-2007 07:13 PM

Question for DiMarie
 
HI,

Bump for when you feel like posting again....I don't mean to sound selfish, but my doc is not moving too fast on my spine referral and I am trying to find Dr. who knows TOS. Wondering if it's the same Dr. Cerino.

I hope I'm not being pushy ,i feel guilty, I know you are in mourning.

Peace to you,

Laila

lailavia 02-04-2007 09:47 PM

bump
 
Bump for DiMarie if you are up to it.:hug:

Peg24 02-04-2007 10:30 PM

Careful
 
Let me share with you that I was told the same thing. Buldging disc 6-7 and sent to PT. When the PT started me on those things needed to help that problem, it flared it up worse.

It was then I went to a vascular surgeon for another opinion because I suspected TOS and was told I did have TOS. He said my discs were not buldging enough to be causing that kind of pain.

I would go ahead and go to PT. You will either have another flare up, or it may help completely if the buldging disc is the problem.

Good Luck! :Trapeze 2:

Peggy

Jomar 02-04-2007 11:10 PM

I found this- does it help?

Dr. Cerino practices Cardiothoracic Surgery and General Surgery in Brooklyn and Towson, Maryland. Dr. Michele Cerino, a female, graduated from the University Pisa with a MD and has been in the profession for 52 years.
Specialties


Cardiothoracic Surgery

General Surgery

Address
3001 South Hanover Street
Brooklyn, Maryland (MD)
Map it
Medical School Information
Medical School
University Pisa
Medical Degree
MD
Years Since Graduation
52
*******

Maryland

A. Lee Dellon, MD, FACS
Suite 370, Johnston Professional Building
Union Memorial Hospital
3333 North Calvert Street
Baltimore, Maryland, 21218
phone 410-467-5400
fax 410-366-9826
E-MAIL: aldellon@erols.com


Dr. Michele T. Cerino, MD, PA
Cardiovascular-Thoracic Surgery
Osler Medical Center
7600 Osler Drive, Suite 300
Towson, MD 21204
410-296-9003

Dr. Avraam Karas / Dir. Vascular Surgery
5601 Loch Raven Blvd. Suite 404
Baltimore, MD 21239
Phone: (410)323-4041
Fax: (410)532-6155

Gromlily 02-05-2007 01:25 PM

Hi Lailavia,
 
Just a thought, if you want to hear from Dimarie again, you could start a new thread addressed to her specifically, just in case Jo's info. didn't quit answer your question ( I wouldn't know, I didn't look at it yet) or if there was something more on a personal level you wanted to ask you could p.m. her. I think she would love to help if she knew you were seeking her out specifically.

And, just to add my input here, yes, you difinitely will experience flares. As others have shared, you will come to a point where you learn exactly what sets them off and then you try to avoid that at all costs!! :eek:

I also want to encourage you to start a journal now!! While you are early into this game so that you can 1) keep a pain diary so that the info. is right there for you to show the DR.'s as you go in. Your symptoms will most likely change from visit to visit, and if you can show them what was happening a month ago vs. a week ago they may be able to recognize a pattern.

Also, 2) you can keep track of pain med.s that worked or didn't work, therapies that helped or not and so on. I was keeping a journal until my husband got cancer then all my "systems, balances and checks" went out the window for while until I realized I was on the merry go round of med.s; I had tried one before and was given it again to try by a new Dr. which brings me to point 3.

More than likely you are going to be seeing Dr.'s for some time while they determine a diagnosis and determine a treatment plan for you. You can be your own advocate by keeping up on everything. Things you experience personally... journal; things you read in the paper, hear on the news, journal. Keep track of everything so that you can ask Dr.'s their opinion about new tests, new med.s, new treatments and so on.

Also, so that you can be sure that the treatment plan is being followed, get a copy of your Dr.'s records, ask to be sent a copy from each visit. This helps them to try a little harder, shall we say, if they know there is accountability. Plus, you can let them know right away if there is something in your file that isn't correct.

For example, my records stated that I saw a certain Dr. for my diagnosis, when in fact I saw his RNP. That was significant in that my diagnosis initially came from a RNP that took 2 minutes to look at me and say my case was too involved for their clinic, and I possibly had such and such condition. I spent a year after that telling each new Dr. all of the above info. before any one would request the correct diagnostics. They all wanted to treat me based upon her 2 minute obsevation!! It was a nightmare to say the least!!

Good luck and I hope that you can get some help and healing!!
G ~ :)

dabbo 02-05-2007 03:16 PM

Grom makes a great point about keeping a journal. I'll be the first to admit that i'm prone to forgetting to write down sometimes (like...right now, for instance). In the book "Managing Pain before It Manages You" they have a great chart, with columns for date/time, situation, pain level, description of pain, emotional response (also on a 1-10 scale), description of the response, and actions taken. What i struggle with is filling in the emotional response. I thought putting a number on pain seemed arbitrary, but putting a number on my mental state is just plain difficult. Anyways, I don't bring all of these w/ me to the Doc, but i use them to sum up between visits, both Highs and lows. It should also help identify what triggers your pain. hope this helps some!
-dabbo

watsonsh 02-05-2007 05:03 PM

Grom...great point on the journal idea. I am going to get one.

lailavia 02-05-2007 10:41 PM

Thanks again
 
I want to thank everyone again for the great advice. I actually have started a pain/ symptom journal as things are suddenly changing and new things popping up and new docs, etc. I also just saw a new rheumy for fibro and eye doc, have dry eye, meanwhile rheumy is doing bunch of bloodwork. Thank you JO for the DR. info, and I am getting another neuro consult with someone new as well. I am on a roll!!!! I am also getting all my medical records from 1994 to 2004 when in a big HMO and try to start the ssdi thing. It is so physically and mentally exhausting but I just don't think I can work right now, if ever. Thanks so so so much again. You all are great. BTW I haven't even started pt cause I really don't know what its for since I don't have Tos! I did get the old neuro's notes, I swear I think he ran in the next room and did them himself, it seems like I totally overwhelmed him with my 2 sx on my first visit! I shouldn't be mean, maybe I should put them on here one day, it rather made me sad, as he made me look like a freak! Then I got another sx. Total =3. On to the next one. At least he admitted I had a symptom. THe last neuro I went too sat down and told me to find a hobby to keep be occupied. Well you all know the story. There are really Goood docs I have too.

Good night all, I will keep informed.


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