So you all know what Tessa has been going through since August with the chronic pain. On Tuesday we went to see the local gyno once again. The doctor herself made the appointment for us. She wanted to see Tessa as the medication she is on has the side effects of depression and fast weight gain. She also wanted an update on the pain.
The update on the pain is the girl sneezed while standing on Christmas Eve which was the beginning of two plus weeks of pain once again. A milder bout this round but alas still the same pain. She only had about 4 days of living on woozy pain meds. Motrin followed by more Motrin seemed to keep the pain controlled. There were no "pain spikes" where the pain gets uncontrollable. Some weight loss from the weight gain since August due to all this (being able to walk/move normally has been helpful for that.).
So improvements have been achieved. Doctor is "certain" its endometriosis from this information. She is also "certain" there is an endo implant on a ligament around the uterus. So when Tessa bends, twists, sits, stands, breathes, yawns, or just moves she can pull that ligament a bit and the implant begins to "bleed" which causes lymph nodes to begin the fight (aka pain)once again.
This doctor does not want to go in with the scope for a peek as with any surgery it causes scar tissue. Her suggestion is to stay on the medication for how ever long it will take- 6 mos. 1 year. or years. "Snuff out" the implant which will stop it from bleeding eventually. (Doctor's "guess" to snuff it out may take up to a year. Then remaining on injections will maintain the endo. Stay on injections til someday want to get pregnant.) Deal with the side effects. Deal with the pain as it comes. Carry on as best as possible.
Doctor really really does not want to do surgery.
Mayo Clinic has a different outlook on it all according to the nurse I spoke to that called me with the results of the review.
The research I have read all pretty much says the same as Mayo Clinic of endometriosis. It must be determined before treating it. The only way to determine its endo is by peeking with a scope. Must know what dealing with before treatment.
Only way to get rid of the pain is to remove offending implant/s.
As mom I have many other concerns. First we were working with an infection. Next we are guessing its endometriosis. Tho if this gyno is correct we are in the process of treating it.
Neither have been confirmed. The only thing that has ever been confirmed is that there are two enlarged lymph nodes which are extremely painful.
Scar tissue is a real concern too. With active painful endometriosis at seventeen years old the future outlook is that there may be many surgeries ahead. So hold off as long as one can is dr's opinion.
But knowing exactly for certain what is causing the angry lymph nodes needs to be found too.
The decisions made now will affect Tessa's life forever.
Surgery, causing scar tissue, hopefully finding exactly what is causing the lymph nodes to go into fighting mode?
Or...
Continue on treatment path with the improvements we have seen so far knowing pain is in the future which will mean more Motrin, pain medication, and more injections with potentially harsh side effects?
Surgery?
No surgery?
But we would welcome your input. You have all been there from day one with her on this painful journey.
Go ahead and share your opinion.
Via blog comment or email hudsonfurn@alliancecom.net
(If you send an email please leave a comment saying so. My emails go to a quarantine box so I have to sift through them. Wouldnt want to miss any!)
8 comments:
I wish I could help. It's so frustrating when there is no clear answer.
here is my Question
Have you actually had her to Mayo yet? I don't think so...but thought I would ask. I think you really need them to see her instead of just gong with what this Dr. says. I would worry about the lymph nod soreness... what are they missing/
Poor girl. She probably votes to get rid of the pain.
Keep seeking and praying
keep us informed
How can you just treat something without knowing what it is? Not that this gyno isn't good but personally the Mayo clinic is top notch. We took the "take medication and wait" route with Noah then ended up having ear surgery and years of speech therapy. So I'm not a big advocate of that route. I guess the question is; what does Tessa want? Does she want to spend a lot of time on pain meds, injections, and all the stuff that goes with it?
Maybe Mayo will say what you are doing is the only option.
I think the same as Michele - you need to know what the problem is before treating it. A scope incision will cause minimal scar tissue (I know - I've had a few and no problems yet with scar tissue). I would think it's worth it to find out what's really going on.
No to scare you, but my mum suffered with painful endometriosis for years before a gyno finally agreed to do the surgery and remove the growths, but by then it was too late and she had to have a complete hysterectomy. So I'd say get it done, the sooner the better.
Oh poor Tessa - what a time she has had. It's certainly a difficult one - although I would think that a positive diagnosis (not a guess) would be a good start. In saying that some drs are very specialised & do know what they are talking about. However why don't you talk to the drs at the hospital about the other drs diagnosis - a second opinion is always a good idea. That way they can say why they agree/disagree.
Will continue to pray for her.
I'm sorry I didn't get back to you about that game. I haven't heard of it, however have you played the european ticket to ride - it looks like a lot of fun in the catalogue!
God bless you
Renata :)
Look into the sansum clinic by santa barbara ,ca. They find out immediately what is the matter. My mom and dad have gone there with excellent results.Give Tessa our love and hugs.
Kath, she is not our child, but I really think we would head to Mayo and 'let them look'. I also agree with Michele, what does Tessa want. All of this is just so hard, but years of pain should not be the option.
Linda
http://coloradofarmlife.wordpress.com
I can't really offer any sound advice except to tell you that you are all in my prayers. I think when you find a doctor with whom you feel confident and explains all of the options clearly, you'll know what to do.
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