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Trish317 wrote:garyak, naychergirl, javabean, and fogdweller.....sending you prayers and good thoughts for wonderful results and healing.

I 2nd that emotion

fogdweller wrote:My biggest problem is neuropathic pain, and that is not one of the problems that seems to improve.

I think Erika from Slovakia had improvement in neuropathic pain as one of her only lasting improvements.

fogdweller wrote:My biggest problem is neuropathic pain, and that is not one of the problems that seems to improve.

Here's a news clip describing pain relief:

http://www.thisisms.com/ftopict-13730.html

Rokkit wrote:

fogdweller wrote:My biggest problem is neuropathic pain, and that is not one of the problems that seems to improve.

I think Erika from Slovakia had improvement in neuropathic pain as one of her only lasting improvements.

Yes.
My neuropathic pain in my right arm started in 2005. Carbamazepin was able to control my pain - I started in 2007. I was on 1200 mg a day.
I was able to cut it to 900 mg 5 months after the procedure. I was on zero of Carbamazepin 8 months after my procedure.
After 2 months with no pain I take 150 mg of Carbamazepin in the evening. I think the big weather change made it a little bit worse.
Otherwise, I still have the same problems as before the procedure like fatigue, sleepiness, weakness, headache, dizziness, heat intolerance...
I had my first follow up 77 days after my procedure. I do not know why but my blood flow is very slow. I will see Dr. Simka in 3 weeks. He will do the Doppler.
Erika

ErikaSlovakia wrote:

Rokkit wrote:

fogdweller wrote:My biggest problem is neuropathic pain, and that is not one of the problems that seems to improve.

I think Erika from Slovakia had improvement in neuropathic pain as one of her only lasting improvements.

Yes.
My neuropathic pain in my right arm started in 2005. Carbamazepin was able to control my pain - I started in 2007. I was on 1200 mg a day.
I was able to cut it to 900 mg 5 months after the procedure. I was on zero of Carbamazepin 8 months after my procedure.
After 2 months with no pain I take 150 mg of Carbamazepin in the evening. I think the big weather change made it a little bit worse.
Erika

Interesting. I started at 200 mg at night, that was all I needed. Slowly went up, faster in the last 2 years, to 1000-1200 mg per day, as needed through the day. I will let everyone know if there is any change in that. It has been 10 years, though, since it started, so I am not holding out much hope. Just making it stop getting worse will be worth it.

By the way, in my opinion the Pacific Center costs are very reasonable $1,500 for the imaging, $8,000 U.S. for the procedure, and I plan to fight for insurance coverage for that. Another thing I'll let everyone know about.

fogdweller wrote:By the way, in my opinion the Pacific Center costs are very reasonable $1,500 for the imaging, $8,000 U.S. for the procedure, and I plan to fight for insurance coverage for that. Another thing I'll let everyone know about.

My total bill at Stanford was $100K. So $9,500 sounds pretty reasonable to me.

So, they do not file insurance for you?

rssugg wrote:So, they do not file insurance for you?

They file. The insurance has already declined to pay for the MRV testing. If it shows stenoses, then they file for coverage for the procedure (and I intend to use that as proof that the MRV was justified, and appeal the original denial). Jessoca. who handles the arrangements (not sure if she is a nurse,. tech, or office worker) said that they have about 50/50 success, so I am assuming I will need to figt for coverage.

Booked into Pacific Group with Dr.Arata in L.A. on Oct 22 for MRV and Oct 23 for procedure.
My original call date was Aug20

millertime wrote:Booked into Pacific Group with Dr.Arata in L.A. on Oct 22 for MRV and Oct 23 for procedure.
My original call date was Aug20

Millertime, why the change?

Does anyone know what the qualifications are to be on the Hubbard registry or have any ideas as to how long before any of the listed will be up and running? I know it says as they qualify contact info will be posted but am anxious to see some participating. I check periodically but none have contact info as of yet.

nellie wrote:Does anyone know what the qualifications are to be on the Hubbard registry or have any ideas as to how long before any of the listed will be up and running? I know it says as they qualify contact info will be posted but am anxious to see some participating. I check periodically but none have contact info as of yet.

Here's the information for doctors wanting to apply.

http://www.hubbardfoundation.org/CCSVI_ ... ction.html

It doesn't say how long it will take for the application approval. This is only a guess on my part but I'd say that a locations opening is dependent on how long it takes them to set everything up with the proper protocal.

fogdweller wrote:

millertime wrote:Booked into Pacific Group with Dr.Arata in L.A. on Oct 22 for MRV and Oct 23 for procedure.
My original call date was Aug20

Millertime, why the change?

Not sure exactly what you mean, but I have only had the one appointment.
The Aug20 is the date I originally called them to book the procedure

Today I was called and offered a date for treatment in Albany, NY: Oct. 27th. There was a cancellation... original call: May 24th... since I am from Canada, treatment will be in clinic... was quoted $3000 for venography, $2000 for angioplasty, $2000 per stent (if required) - but was told that starting in November prices are going up! When they contact me again I will try to find out the new prices...

For Dr. Siskin's patients:

Albany Medical Center made the "Niagara Health Quality Coalition for Hearst Newspapers" Watch List for the second year in a row.

http://www.timesunion.com/default/artic ... 665072.php

EDIT: "Albany Med responds to safety analysis"

http://blog.timesunion.com/healthcare/a ... lysis/260/
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