SPINAL SURGERY/CONTINUE HEP TREATMENTS

[mrodriguez112704]

HEY EVERYONE! THIS FRIDAY WILL BE SHOT #7.  I WAS JUST INFORMED THAT I NEED SURGERY ON MY C-5/C-6 CERVICAL LEVEL.  I HAVE A DISC THAT IS SITTING ON MY SPINE AND CAUSING HORRIBLE NECK PAIN ALONG WITH PAIN/NUMBNESS IN MY LEFT ARE FOR 4 WEEKS NOW.  NEURO HAS ORDERED CT SCAN TO MAKE SURE THERE IS NOTHING ELSE GOING ON BECAUSE OF THE SEVERE HEADACHES THAT I HAVE GOTTEN EVERYDAY FOR YRS. NOW.  ANYWAY, MY NEURO SAID MY BLOOD WOULD HAVE TO BE BUILT UP BEFORE I COULD HAVE THE SURGERY.  HE SAID TO HAVE MY HEP C DR. FUN THE LABS AND PUT ME ON SOMETHING.  WELL HEP C ASST. CALLED AND SIMPLY SAID DR. L----- SAID NO SURGERY WHILE I AM RECEIVING TREATMENTS.  I TOLD HER I AM IN PAIN; WHAT AM I SUSPOSED TO DO?  WAIT FOR ANOTHER 41 OR MORE WEEKS TO HAVE MY NECK CORRECTED?  SHE HAD NO EXPLANATION OTHER THAN DR. SAID NO SURGERY!  IF I STOP MY TX FOR SURGERY, MY INSURANCE WILL NOT PAY FOR A 2ND GO AROUND?  SOMEONE, PLEASE ADVISE AS TO WHAT I AM SUSPOSED TO DO?????????

[nor cal mom]

has anyone talked to you about endometrial ablation maybe this would buy you some time til treatment is done. Here in Redding CA it is done by the interventional radiologists. Just a thought I would hate to see you stop treatment. Good luck & please keep us up to date Love & Peace Darcy

[cuteus]

according to the Mayo clinic:
Anemia
The main symptom of most types of anemia is fatigue. Other signs and symptoms of anemia include:

Weakness
Pale skin
A fast heartbeat
Shortness of breath
Chest pain
Dizziness
Cognitive problems
Numbness or coldness in your extremities
Headache
Initially, anemia can be so mild it goes unnoticed. But signs and symptoms increase as the condition progresses.

and check this list of symptoms
http://www.emedicinehealth.com/articles/4893-3.asp

heart murmur is mentioned. DEMAND Procrit, don't wait for no test results. Act now. It might delay the surgery you might need eventually.

[jmjm530]

Sorry about the sides. I'm assuming you have a CBC in there somewhere that will check other things like WBC and ANC so you should be covered. I guess it will be the PCR that will tell you how you're doing in terms of response and that will help guide you going forward. You're a stage 2 so you do have some wiggle room to stop treatment if things start becoming overwhelming. I hope everything works out for you.

-- Jim

[GoofyDad]

Reading this thread is amazing. Just to highlite a few (soory for anyone I skipped), we have eisbein cross checking lab orders, jim crunching the numbers, cuteus citing real life cases and outcomes. It's an HVC treatment authority in action.  

And this from fresnoborn is classic:
BESIDES THE SWOLLEN EYES, ACHING BONES AND TEETH, FATIGUE, WEIGHT LOSS, NO APPETITE AND IRRITABILITY......I'M DOING FINE.

[fresnoborn]

JMJM  AS FAR AS TREATMENT IS CONCERNED: BESIDES THE SWOLLEN EYES, ACHING BONES AND TEETH, FATIGUE, WEIGHT LOSS, NO APPETITE AND IRRITABILITY......I'M DOING FINE. I AM A GENOTYPE 1B STAGE 2 GRADE 2 I AM INTO WEEK 18 ON PEGINTRON/RIBABIRIN AND I GET THE RESULTS OF MY 12 WEEK PCR ON WEDNESDAY. I LOST MY LAB ORDERS EARLIER INTO TREATMENT AND DID NOT GO FOR BLOOD WORK THAT'S WHY I BARELY GOT MY 12 WEEK LAB DONE LAST WEEK. THIS LAB ORDER WAS TO CHECK MY VIRAL LOAD AND MY THYROID AND THE REGULAR BLOOD CHECKS. WHEN I SEE HIM I WILL ASK FOR TESTS FOR HEMOGLOBIN, HEMATOCRITY, ALPHA-FETO PROTEIN TEST AND PLATELETS IS THERE ANYTHING ELSE I SHOULD ASK FOR?

CUTEUS   YES I READ YOUR SUGGESTIONS ON HGB AND WROTE THEM DOWN ON A LIST OF THINGS TO ASK MY GI. I WILL BE ASKING HIM FOR TESTS FOR HEMOGLOBIN, HEMATOCRIT, ALPHA-FETO PROTEIN TEST AND PLATELETS. IS THERE ANYTHING ELSE I SHOULD BE ASKING FOR? OH YA, AND I WILL BE ASKING HIM FOR PROCRIT. DO YOU THINK PROCRIT IS SAFE ENOUGH FOR THE HEART? MY PCP SAID I DIDN'T HAVE THIS HEART MURMUR BEFORE AND NOW I DO. SHE SAYS THAT MAYBE IT IS DUE TO THE FACT THAT I MAY BE ANEMIC. I DIDN'T KNOW ANEMIA COULD CAUSE A HEART MURMUR.

[cuteus]

did you read my suggestion on the hgb?
The anemia was increasing the bleeding during the cycles, and that was corrected after Procrit. I think it is worth a shot to get the anemia treated asap, and then evaluate if it helped your bleeding.  Chev also reported severe bleeding for a while, but it stopped or "normalized" on its own. these drs are only seeing GYN, because they are not versed on hep c and the meds. The anemia could be aggravating the endometriosis. PLEASE ask for Procrit.

[NYgirl]

Fresno,

I have a heart murmur too.  They did an EKG I think just to check because of the medications - sometimes I guess they can lead to heart problems or something.  They were NOT concerned about it really at all, just my internist wanted it checked out.

I've had it all my life (probably you have too and just never knew it before).  It's never been an issue really at all, it's just there.

I'm pretty sure the doctor will tell you you can shelf that problem for right now. I sure hope so.

You've got enough on your plate.

Debby

[jmjm530]

A lot going on. Wow.

I think it important you have the heart murmur looked into but I agree with the poster who said heart murmurs often aren't serious. Your main problems seem to be the operation and treatment.

I guess the first question is how is treatment going? You earlier mentioned a viral load 17 weeks ago. Was this your week 12 PCR? Did you have a two-log drop at week 12? What genotype? What week are you in now? What I'm getting at is that with surgery in the loop, it's a good time to sit down with your doctor to access your odds of SVR. If they look good, then I'd lean toward the operation as long as your doctors think you can tolerate it. If SVR is a long shot, then as a stage 2, you have to think how much do you want going on in your life at the same time.

As others have said, you really have to speak to all your doctors and get as much information about the operation, how safe it will be on treatment, what blood levels of platelets, hemoglobin, will be required, etc. Once you have that, do a reality check on your odds of SVR, and come to some sort of decision. Fortunately, as as a stage 2, you still have some wiggle room should you decide to stop or temporarily stop treatment.

All the best luck.

-- Jim

[jmjm530]

A lot going on. Wow.

I think it important you have the heart murmur looked into but I agree with the poster who said heart murmurs often aren't serious. Your main problems seem to be the operation and treatment.

I guess the first question is how is treatment going? You earlier mentioned a viral load 17 weeks ago. Was this your week 12 PCR? Did you have a two-log drop at week 12? What genotype? What week are you in now? What I'm getting at is that with surgery in the loop, it's a good time to sit down with your doctor to access your odds of SVR. If they look good, then I'd lean toward the operation as long as your doctors think you can tolerate it. If SVR is a long shot, then as a stage 2, you have to think how much do you want going on in your life at the same time.

As others have said, you really have to speak to all your doctors and get as much information about the operation, how safe it will be on treatment, what blood levels of platelets, hemoglobin, will be required, etc. Once you have that, do a reality check on your odds of SVR, and come to some sort of decision. Fortunately, as as a stage 2, you still have some wiggle room should you decide to stop or temporarily stop treatment.

All the best luck.

-- Jim

[layla]

I went through 3 docs before finding a one I felt had a good handle on HCV.  I did have surgery while on tx and everything in that regards went ok. I beleive I got extra antibiotics even before the surgery. I do wish I had waited until after because I now wonder if some of the pain was increased due to tx. I did 18 months tx. End results, the surgery was successfull and I am SVR over a year now. Try another doc. LL

[johnisme]

Might be s good ideal to call your GI doc and let them know about both of your problems your having and see if you can see him/her sooner.

[fresnoborn]

I NEED SOME MORE ADVICE. A WEEK OR SO AGO, MY GYNECOLOGIST TOLD ME I NEEDED A HYSTERECTOMY DUE TO ENDOMETREOSIS INTERNA AND AN ENLARGED CYCST. I GOT A SECOND OPIONION TODAY AND THIS GYN SAID THE SAME THING. I ALSO HAD APPOINTMENT TODAY WITH PRIMARY CARE PHYSICIAN AND SHE SAYS SHE FOUND A HEART MURMOR AND ORDERED AN ECHOCARIAGRAM. I ASKED HER ABOUT THE HYSTERECTOMY ISSUE WHILE I WAS THERE AND SHE SAID THAT A HYSTERECTOMY IS NEEDED BECAUSE I WON'T STOP BLEEDING. I AM EXHAUSTED. SHE LOOKED AT THE PALMS OF MY HANDS AND MY FINGERNAILS AND SAID THAT I SEEM ANEMIC AND SHE ASKED WHEN I SEE THE GI. I SEE HIM THIS WEDNESDAY TO GET RESULTS OF MY VIRAL LOAD CHECK, BLOOD WORK AND THYROID CHECK. I NEED ADVICE BEFORE WEDNESDAY SO I CAN KNOW WHAT TO ASK FOR FROM GI. AND OH MY GOODNESS, NOW A HEART MURMUR. PLEASE HELP ME HELP MYSELF. I'VE CRIED ALL AFTERNOON AND I CRY AS I TYPE THIS. PLEASE, MY FELLOW HEPPERS, GIVE ME SOME WORDS OF WISDOM.    SINCERELY    ELIZABETH

[jmjm530]

For lack of personal references you could start here:
http://www.utsouthwestern.edu/finddoc/results/0,2361,,00.html

[jmjm530]

There's got to be a good teaching hospital near Dallas. Hopefully someone here will know one. I vaguely remember someone treating at the University of Texas but I think that's Houston. You could also ask for a referral near Dallas at this doctor site:
http://www.thebody.com/Forums/AIDS/Hepatitis/

I"m sure anyone they recommend will be good.

-- Jim

[GoofyDad]

Awww-Man. That's just plain not fair. It's not. I really feel  for you.

I'm newer to all this than you, and unfortunately I have no advice. No doubt some of the power hepsters will be by shortly with some good words of wisdom. I'll point out that while we're waiting, it might be helpful to post stage, geno type, how far into treatment you are, most recent bloodwork (hemo, plateletes, etc). That might get you quicker answers.

Best wishes to you, Elizibeth. You know, all we can do is take these things one step at a time. You're doing the best you can by proactively gathering the information you need. Hang in there. We're all behind you.

[johnisme]

Hi, heart murmurs are not that uncommon or serious most of the time. You might want to check out this site on it.http://www.mamashealth.com/heart/hmurmur.asp

Sorry your having to deal with all this at once. Best of luck to you....John

[mrodriguez112704]

I LIVE JUST OUTSIDE OF DALLAS, TEXAS.  I DO NOT UNDERSTAND WHY MY PRIMARY PHYSICIAN SENT ME TO A GI DOC.

[jmjm530]

BTW what part of the country do you live in? Maybe someone who lives nearby can refer you to a better doctor.

[jmjm530]

It's never too late or too early to change doctors. Many of us here did so during treatment. I changed doctors after the first week. Just make sure you see a liver specialist 'heptologist" this time. You can usually find them at the larger, teaching hospitals. Maybe thinking 24 weeks will make a difference regarding your operation? Maybe not. But you should be treated for the right length of time. Your doctor sounds like he isn't cutting it.

[mrodriguez112704]

I AM A TYPE 3, THAT MUCH I HAVE BEEN TOLD.  I DO NOT KNOW WHY I'M BEING TREATED FOR 48 WKS. VS 24 WKS?  I AM ON PEGINTRON 0.5 DOSE EVERY FRIDAY ALONG WITH 3 RIBAVIRIN AM AND 3 PM.  PRIOR TO TX THE ONLY PROBLEMS I WAS HAVING WAS THE SEVERE HEADACHES.  AT THIS POINT I AM NOT ON PROCRIT, ALTHOUGH I FELT LIKE I SHOULD HAVE BEEN PLACED ON IT AFTER MY 4TH SHOT.  THAT'S WHEN THE SHORTNESS OF BREATH STARTED AND THE COMPLETE EXAUSTION STARTED.  MY DR DOES NOT TELL ME ANYTHING, I FEEL LIKE I'M IN HIS OFFICE EVERY TWO WKS. JUST FOR MY CO-PAY AND INSURANCE $.  IF YOU CANNOT TELL I AM NOT REALLY HAPPY WITH MY DOC.  MY FIRST VISIT WITH HIM WAS NOT SO GOOD AND IT LEFT A BAD TASTE.  HIS BEDSIDE MANNER WAS NOT TO NICE.  I KNOW I SHOULD HAVE GOTTEN ANOTHER DOC. BUT WAS WANTING TO START TREATMENTS AS SOON AS POSSIBLE.  NOW I WISH I HAD GOTTEN ANOTHER DOC.

MARSHA

[jmjm530]

Odd. The usual treatment for geno 3's is 24 weeks. Did your doctor say why he's treating for 48? What meds are you on -- Pegasys or Peg Intron and what doses? Also, do you know how much ribavirin you're taking. Also, did you have the side effects you listed before treatment or only since you started treatment? Assuming they are side effects since you began treatment, it sounds like you have a good chance of being anemic. Let us know your most current Hemoglobin level and also your pre-treatment hemoglobin level. I'm also assuming you're not on a drug called Procrit which is usually injected weekly to bring the hemoglobin back up?

[mrodriguez112704]

I JUST CALLED AND ASK THAT THEY FAX TO ME ALL REPORTS THEY HAVE ON MY CASE.  I AM 45 YR. OLD FEMALE.  BEFORE HEP C I WAS IN GOOD HEALTH.  MY SIDES ARE; HEADACHES, IRRIABLE, ACHES/FLU LIKE SYMPTOMS, MIND FOG, MIND RACING, INSOMNIA, OCCASIONAL LIVER PAIN, CRYING FOR NO REASON, SHORTNESS OF BREATH, MAJOR FATIGUE.  SHOWERING EVERY MORNING IS LITTERALLY EXAUSTING.  I HAVE TO SIT DOWN AND CATCH MY BREATH TO DRY OFF!  BUT BESIDES THE TREATMENT EFFECTS MY NECK KILLS ME CONSTANTLY AND THE LEFT ARM IS A ROYAL PAIN.  I DO NOT UNDERSTAND WHY MY DR. SAID NO SURGERY.  IF I WAS IN AN ACCIDENT WITHIN THE NEXT 41 WEEKS COULD I NOT HAVE SURGERY TO SAVE MY LIFE?  MY TREATMENTS ARE 48 WEEKS NOT 24.

THANKS,
HAVE A GOOD DAY,
MARSHA

[jmjm530]

Another thought but I'm sure you've looked into it. Is there anything they can temporarily do to get you through the pain for the next six months or so. Cortisone shot? Pain block? Tens? Drugs? Physio? Pain management clinic? Like I said, the one probably to start with is a Physiatrist aka known as a doctor of physical medicine.  The ortho's just know about slicing and dicing..

-- Jim

[jmjm530]

Yeah, things never seem to fit into neat little baskets. But basically you have three choices -- (1) stop treatment and operate on your neck; (2) Finish your 24 week course and have the operation another time; (3) Do both.

Unfortunately a coin only has two sides. :)

Nothing real scientific here -- and as you probably figured out none of us are doctors (for one thing we sometimes actually listen LOL) but do you have pre-treatment blood values for :
(1) Platelets; (2) ALT; (3) AST; (4) INR. If not, get your doctor's office to fax you over all your bloodwork.

We can then plug the values into something called a "cirrhosis calculator" which I'm sure is better than a coin toss: http://www.haltctrial.org/

BTW have you had any viral load (PCR) tests done since you started? How old are you and how was your general health before treatment?
Any other diseases/conditions?

== Jim