Appoint w neurosurgeon

I have an appointment with a world renowned neurosurgeon coming next week. I'm to be evaluated for Brachial neuritis/thoracic outlet syndrome. I'm beyond lucky, grateful and very fortunate to have crossed paths with a particular doctor who set this appointment up. I get emotional thinking about it.
My question is, do I mention Lyme during the consultation? I don't want to get that "look" the docs give when I've thrown that word out in the past. I've literally been blown off by multiple doctors for mentioning it. I know many here can relate. I also disclose 100% truth to my docs. Not really sure how to go about this one. Suggestions?

Speak their speak ...say hypoperfusion is thought to have occured from amyloid build up and may have infectious root cause per alan macdonalds research ..i mention my positive bartonella test and use words like apicomplexian=protozoan .. they all know toxoplasmosis and malaria can cause lesions ...

it was a cardio nurse that mentioned the outlet but unless you really want surgury of moving veins ,nerves then what is to be accomplished ..my shoulder only cut off flow if the roll forward and i know they do that because of borrelia and bartonella .
the lower motor neuron disfunction is lyme too but i tell them in words they know ..my nurse said well even if its just to know ...for posterity for to save others the suffering ...do you have cdc positive test ? Use horiwitz coin phrase multiple systemic infectious disease syndrome ...if he says whats that then ask him if he is familiar with their work ,burrascano and call it borreliosis if you must ..
I mention measurable stuff like right bundle branch block and enlarged heart from imaging ...ask if that will be a factor ..mention pots if you have it and if blood pressure dysregulation will effect outcome of surgery should you choose to get it ...
is the surgury trauma worth the relief ..how numb is it ? Do you get burning neurapathy ..
i am asking these questions as i am likely face with a muscle biopsy to get dx to try n get ivig if i want it if insuranse even covers it ?

Post Edited (bluelyme) : 11/5/2016 10:00:28 PM (GMT-6)

A-I was diagnosed with thoracic outlet syndrome at 19, I'm 54 now. I had a few issues over the years with TOS but nothing substantial until I was in my mid 40's. At that time both of my shoulders tore within 18 months (SLAP tears, bicep anchor tendon tears, shredded rotator cuffs etc). My orthopedic surgeon said when the second shoulder tore that he wasn't really surprised because when he did my first surgery everything was in shreds which is unusual for someone my age. For a completely different reason my cervical spine was crushed and that went diagnosed for about 12 years. By the time my doctor figured out what was wrong I had permanent pretty severe nerve damage on my left side and mild-medium damage on my right. My first surgery failed making it worse and the second successful surgery was in between the two shoulder surgeries.

I developed my bullseye 3 months after the second shoulder surgery. I had no idea what that meant. It took 16 months until we realized I had Lyme and in that 16 months the pain that I had dealt with before was now that much worse but we knew my neck was healed. My neurosurgeon and orthopedic surgeons could see how much pain I was in and found a TOS specialist. He was very kind and gentle and told me that while surgery was an option they'd found that removing the rib and/or moving the nerves almost always makes people worse for so long that it isn't worth it.

If there is ANY chance that your issue is caused by inflammation from the bacteria please please please do not have surgery. You can have a nerve block. If that works then they can do a radio frequency block which lasts longer. I had both and that helped a lot. You can do PT but it has to be very specific stuff. They can fit you for a posture vest which will open the brachial plexus and retrain your body. Don't reach for things above shoulder height. Don't lift anything that's above shoulder height and at a reach.

I still have my TOS bookmarks. Here are a few of the links I found helpful.

www.neurotalk.org/forum24/?s=4b07ff3b47c9103b164a2310689c849c At the time this was by far the most active message board.

www.science20.com/news_articles/neurogenic_thoracic_outlet_syndrome_nerve_compression_disorder_athletes_gets_new_treatment-103207

www.barnesjewish.org/Medical-Services/Heart-Vascular/Thoracic-Outlet-Syndrome

www.doctorellis.com/index.php

I'm really sorry you are going through this. If I can be of any help feel free to email me.
Janet

A friend of mine had TOS - and she went to a good Physiotherapist...and completely put all symptoms to rest - took a lot of exercises and several months.

Hasn't had a reoccurrence - this was 6 years ago.

Her rehab involved getting the top rib back down into place...

There are different types of TOS - some are nerve only involvement, others include blood vessels....

Well, just got home from the ns appt. After some physical tests, TOS was ruled out but my nerves did show inflammation and carpal tunnel so he ordered visits with a PT, sports ortho doc and a psychiatrist to help get my anxiety under control. He probably thinks im crazy. As if anxiety can cause crippling nerve pain and muscle atrophy. He was a very nice doc otherwise. Lyme was not mentioned. Looks like the bugs are the culprit.

A-The inflammation from the bugs causes a lot of pressure on our nerves. I got a lot of relief from using Zyflamend by New Chapter. It's a natural anti inflamatory. I purchase it on Amazon. I use that plus a large dose of a high quality fish oil. I take 6 capsules of Ultimate Omega by Nordic Naturals twice a day. It's pricey stuff but since nerve pain feels like your blood is acid I feel like it's worth it. The best price I've found by far is at totalprowellness.com They run promo's pretty often. Right now you can get an additional 10% off using the code NOR10. I stock up when they do a weekend everything is 20% off sale but you could start and see if the combo of things works for you.

Icing area's will reduce inflammation and heating them will help with circulation. You can rotate both and see if both or one gives you relief.

If your insurance will cover-Lidocane patches give a bit of relief when things get tough.

Janet

jrpsf said...


Icing area's will reduce inflammation and heating them will help with circulation. You can rotate both and see if both or one gives you relief.

Dr B's Treatment guidelines say if you have lyme you should not use ice or electric stimulators on your body.

Post Edited (Kirky98) : 11/9/2016 3:55:53 PM (GMT-7)