Are some of us being under-treated?

A forum to discuss Chronic Cerebrospinal Venous Insufficiency and its relationship to Multiple Sclerosis.

Postby ClaireParry » Thu Nov 25, 2010 10:44 am

I also will not return to Poland. Been twice with no real improvements.

I don't doubt that what they are doing they are doing well but they fail when it comes to being thorough. I'm not convinced that I don't have blockages elsewhere than my jugs. I would have had stents had they thought they were needed but I'm so glad I didn't.

I'll be sitting back and seeing what occurs. I will wait and see what happens at EHC, and should I see a protocol that includes checking all the veins required I may well go ahead with more treatment. I want the improvements others have had !!

Under diagnosed?? YES.

Claire
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Postby esta » Thu Nov 25, 2010 12:44 pm

I specifically asked them to check the azygos, and they also
ck'd the iliac vein. they said both were fine. thats twice...ineptness? choice? or i really am fine there, and its something else?
i can't fault them until i know...
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby ClaireParry » Thu Nov 25, 2010 2:21 pm

I'm sure that someone here far more knowledgeable than me will correct this - but I though I'd read that the Iliac can only be accessed from the left side? That certainly didn't happen to me.When I asked if they would recheck the Azygous I was told no as it appeared normal 1st time.

Both times I was only in theatre for a total of 30 mins. Including walking there and prep before the op. Is it long enough really?

I hold no grudge - I found them professional and courteous at all times I just believe that things have moved on and that may be 'other' veins need to be concentrated on.
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Postby esta » Thu Nov 25, 2010 5:14 pm

Hi claireperry
just 3 short months ago,and look how far we've come, to now say, i think i'll stay home for further treatment.
i'm sorry i told you to go back to poland...but the only other place was bulgaria, and i wasn't sure of them then.
hopefully sooner than later, we can find drs. who are furher along in their knowledge.
the 2nd time i did get ck'd, they entered on the left, because of the ilia, so they musnt have ck'd yours.
PPMS. Liberated Katowice, Poland
06/05/10 angioplasty RJV-re-stenodsed
26/08/10 stent RJV
28/12/10 follow-up ultrasound intimal hyperplasia
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Postby burg » Thu Nov 25, 2010 5:51 pm

Personally, I think it's the money. They're doing it for the money.
I was in Bulgaria..wonderful People...doctors, nurses, etc. I believe that they know you're probably not coming back from USA or Canada. The long trip, the expense of treatment, and the hotel with food all add up.
They're churning out as many patients as they can.
My Azygos was missed. They discharged me with too little supply of meds. By the time they answered my email, it was too late, and I emailed them 8 days after my procedure, so it wasn't from my side. If not for reading about the meds on TIMS,I would have never known. Other patients fromBulgaria had the same issue.
I have advice for everyone...Stay home!!! If you can't drive, wait until it's available close by.
Cheerleader said this all along, so I can't say that I wasn't warned. I didn't listen either.
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Postby Kathyj08 » Fri Nov 26, 2010 5:48 am

Burg,
I am wondering what meds you are referring too since I was there around the same time as you. I haven't read much about that, although I know I've read that pretty much each Dr. has a little difference in drugs or duration.
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Postby burg » Fri Nov 26, 2010 6:25 am

The Doctor that discharged me gave me 4 prescriptions , which I filled at the pharmacy downstairs. He was the Doctor on duty at the time. It was for :
Aspirin 100mg-once daily
Pradaxa-110 mg-twice daily
Detralex-500-twice daily--60 pills, for 1 month
Quamatel-40mg--1/2 daily
I emailed Dr. Grodzinski asking: In the "Dear Patient" letter that was given me on discharge, It said "in addition" to take "Daflon (Diosmin)-2x500mg for 3 to 6 months. Should I be taking the Detralex for 3-6 months? If so, can you email me a prescription.
I never got a response. I finally emailed the girl at Geya Tours, Diana, and asked her to ask Dr Grodzinski. They finally answered after many emails to Geya that the medication in the issued letter was correct and the discharging Dr. was wrong. By that time, I was off the meds for a week.
I spoke with the other people that were there at the same time, who were not stented as I was non stented, and they had the same Discharging Dr with the same precriptions as me.
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