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Dargo's little girl needs our prayers
- Thread starter working woman
- Start date
The strength of our younger generation amazes me.
Sorry to hear the news that the tumor is back and bigger.
More prayers on the way as you fight your way through this. I'm glad we were able to bring a smile to Mel's face. That means a lot at a time like this.
Best wishes Brent. Hang in there buddy!
working woman
New member
countinued prayers here. For Mel, you and your family and well as the doctors working on her
Best wishes Brent! I hope this is all in the past very soon.
Galvatron
Spock and Galvatron < one and the same
I am so sorry Brent that the situation as taken a bad twist....but remember things usually in life get worse before getting better....stay strong Brent your one outstanding man that should hold his head proud,Mel you melt my heart with your positive approach and strength for a bright future.
If there is anything from England i can get and send to make anyone smile just ask and it will be my pleasure to assist....Go get em Mel you can do this!!!!!
Thoughts and prayers ongoing.
If there is anything from England i can get and send to make anyone smile just ask and it will be my pleasure to assist....Go get em Mel you can do this!!!!!
Thoughts and prayers ongoing.
Dargo
Like a bad penny...
Well, we just got hit with a bit of bad news today. After review, Mel needs to have brain surgery again pretty well as soon as reasonably possible. That means it's no life flight and emergency surgery, but it also means there is no waiting a month or two. I'm pretty crushed to say the least. Mel is the trooper. All she said is "let's do it". I think she's tired of being in constant pain.
I again have to thank Ed (IslandTractor). He has her setup with the best neurosurgeon for the surgery. Obviously, this will require us to uproot and be in Boston for....well, for a while. Details are still getting worked out, but it's possible that she will have surgery on June 10th in Boston. I'm not exactly sure at which hospital, but the surgeon will be Dr. Ed Smith Dr. Ed Smith. I think the surgery will be at Children's Hospital Boston, but I am not sure.
I cannot express my gratitude for all the support I've received here. I'm kinda in shock thinking 'here we go again' right now. Sorry to be so brief.
I again have to thank Ed (IslandTractor). He has her setup with the best neurosurgeon for the surgery. Obviously, this will require us to uproot and be in Boston for....well, for a while. Details are still getting worked out, but it's possible that she will have surgery on June 10th in Boston. I'm not exactly sure at which hospital, but the surgeon will be Dr. Ed Smith Dr. Ed Smith. I think the surgery will be at Children's Hospital Boston, but I am not sure.
I cannot express my gratitude for all the support I've received here. I'm kinda in shock thinking 'here we go again' right now. Sorry to be so brief.
We're all with you here Brent & Mel. Whatever it takes to make her better.
If there is anything you do need, please holler. Also, many of us also live close to your travel route so if you need anything in your travels, I'm sure we can hook you up (and literally, if you have your RV with you).
If there is anything you do need, please holler. Also, many of us also live close to your travel route so if you need anything in your travels, I'm sure we can hook you up (and literally, if you have your RV with you).
JackieBlue
Banned
Brent, I can't even begin to imagine what you all are going through, especially Mel. Just know that you are all in our thoughts and prayers. Stay strong but when you need to let it out you can always come here.
Dargo
Like a bad penny...
I thought I'd give an update while Mel is sleeping. It's been hell week. Due to their piss poor customer service and attitude, I predicted Northworst Airlines would go bankrupt or be bought for pennies on the dollar. Mark my words; American Airlines are next. I'll do my absolute best to refrain from a long rant, but it will be a cold day in hell before I ever fly American again! Melanie was given a pain injection as we left the hospital in Boston that would have lasted for about an hour past the time we would be at our home. If it were up to American Airlines, I'd be still driving somewhere trying to get home. After 12 hours of delays, they dumped us in Chicago and told me to "read the fine print on the back of my ticket" and they are under no obligation to get me to my final destination point even though I paid full fare for 3 of us. Maybe later in the 'rant' section, but even a TSA agent told an American supervisor that they were going to slap the shit out of them and arrest them if they yelled at my daughter for crying while curled up in a ball in pain.
Anyway, literally as the surgeon was beginning to make the first incision in the OR, the radiologist monitoring Mel in real time 3D imaging said "Stop!", and asked the surgeon to come look at what he noticed. What he had noticed was that the 'tumor', leision, growth (nobody knew what to call it) had doubled in size since OR prepping. Part of Mel's surgery involved a rather new procedure where most of the spinal fluid is drained from the patient and, as such, greatly shrinks everything inside the skull around the brain. The only reason the 'thing' would begin 'growing' fast would be due to the decreased outside pressure being exerted on it. Already in the room with their huge 9 tesla MRI machine, they immediately did a contrast MRI and called in the head of Vascular Surgery, who immediately performed an angiography with a radio-opaque contrast agent.
What they discovered was a arteriovenous fistula that is leaking. Since I did NOT graduate from Harvard Medical School, let alone top in my class and head up cranial vascular surgery there, I will have to cheat and use bits of notes I have and wikipedia. Per Wikipedia, "It is the only anatomic location in the body in which an artery travels completely through a venous structure. If the internal carotid artery ruptures within the cavernous sinus, an arteriovenous fistula is created (more specifically, a carotid-cavernous fistula). Lesions affecting the cavernous sinus may affect isolated nerves or all the nerves traversing through it." Top surgeons in the world say they would not operate in this area unless certain death would occur otherwise. Not good.
However, the team of surgeons spoke with us and said that one physician at Harvard has repaired this problem from the inside of the vein and the patients have gone on and lived a normal life. The problem is he is out teaching this technique for a week or so. I want no other surgeon to "give it a try". Based on this, Mel is now is for all intents and purposes 'in the hospital' at our house until we can schedule her for this next, hopefully, curing surgery. We opted to come home rather than pay a couple thousand a day for her to stay there and wait; especially since most of us know that we do rest better at home in our own bed. We just need to keep her down as much as possible and keep her stress level down (thank you fucking American Airlines!).
Oh, to be fair and give some credit to an airline, Delta stepped up, got us home and is covering most of our fare to get Mel back to Boston when we can get her surgrery scheduled. Remember, it was American who totally fucked up and all but literally said 'piss on her', concerning my daughter. Thank you Delta. You recognized a total wrong and stepped in and did what I feel is a great service to try to make things right. Oh, American also crushed and destroyed our luggage and their new policy is that "they are not responsible" as long as the contents are still intact.
Sorry, I am really trying to not let loose on American Airlines like I feel would be appropriate. This isn't about them. I just wanted all to know what sort of operation they run.
Oh, I should also point out that her diagnosis would almost undoubtedly would have been missed if she wasn't in one of the most advanced OR's in the country with the top physicians treating her. Although it's not exactly the news I wanted to hear, we now have a diagnosis, know what we are dealing with, and hopefully will have a similar team cure her in a few weeks. Again, I can't express all the gratitude towards all of you who have been so kind during this very trying part of our family's life. Thank you.
Anyway, literally as the surgeon was beginning to make the first incision in the OR, the radiologist monitoring Mel in real time 3D imaging said "Stop!", and asked the surgeon to come look at what he noticed. What he had noticed was that the 'tumor', leision, growth (nobody knew what to call it) had doubled in size since OR prepping. Part of Mel's surgery involved a rather new procedure where most of the spinal fluid is drained from the patient and, as such, greatly shrinks everything inside the skull around the brain. The only reason the 'thing' would begin 'growing' fast would be due to the decreased outside pressure being exerted on it. Already in the room with their huge 9 tesla MRI machine, they immediately did a contrast MRI and called in the head of Vascular Surgery, who immediately performed an angiography with a radio-opaque contrast agent.
What they discovered was a arteriovenous fistula that is leaking. Since I did NOT graduate from Harvard Medical School, let alone top in my class and head up cranial vascular surgery there, I will have to cheat and use bits of notes I have and wikipedia. Per Wikipedia, "It is the only anatomic location in the body in which an artery travels completely through a venous structure. If the internal carotid artery ruptures within the cavernous sinus, an arteriovenous fistula is created (more specifically, a carotid-cavernous fistula). Lesions affecting the cavernous sinus may affect isolated nerves or all the nerves traversing through it." Top surgeons in the world say they would not operate in this area unless certain death would occur otherwise. Not good.
However, the team of surgeons spoke with us and said that one physician at Harvard has repaired this problem from the inside of the vein and the patients have gone on and lived a normal life. The problem is he is out teaching this technique for a week or so. I want no other surgeon to "give it a try". Based on this, Mel is now is for all intents and purposes 'in the hospital' at our house until we can schedule her for this next, hopefully, curing surgery. We opted to come home rather than pay a couple thousand a day for her to stay there and wait; especially since most of us know that we do rest better at home in our own bed. We just need to keep her down as much as possible and keep her stress level down (thank you fucking American Airlines!).
Oh, to be fair and give some credit to an airline, Delta stepped up, got us home and is covering most of our fare to get Mel back to Boston when we can get her surgrery scheduled. Remember, it was American who totally fucked up and all but literally said 'piss on her', concerning my daughter. Thank you Delta. You recognized a total wrong and stepped in and did what I feel is a great service to try to make things right. Oh, American also crushed and destroyed our luggage and their new policy is that "they are not responsible" as long as the contents are still intact.
Sorry, I am really trying to not let loose on American Airlines like I feel would be appropriate. This isn't about them. I just wanted all to know what sort of operation they run.Oh, I should also point out that her diagnosis would almost undoubtedly would have been missed if she wasn't in one of the most advanced OR's in the country with the top physicians treating her. Although it's not exactly the news I wanted to hear, we now have a diagnosis, know what we are dealing with, and hopefully will have a similar team cure her in a few weeks. Again, I can't express all the gratitude towards all of you who have been so kind during this very trying part of our family's life. Thank you.
muleman
Gone But Not Forgotten
Sounds like you took her to the right place. Anyone who is alert enough to throw up the stop flag and get consults is doing their job. While I am sure it is agonizing for you and her the time spent waiting for the right person with prior experience is certainly the route to take. I hope for a positive outcome from all this when they do get to working on this very precarious area. Hang in there and prayers for you, Mel and all your family.
Prayers of strength for Mel and your family Brent. You need it.
.. like you said, at least you know now what is going on.I was really saddened to read your update on Mel, Brent.
What a circus.
I can only echo what myself and the others have been saying all along.
Continued prayers and good thoughts.
God is in control of the situation.
Cowboy
Wait for it.
+1 I cant say it any better then that .
NorthernRedneck
Well-known member
Best of luck! At least now you know what you're dealing with.
Dargo
Like a bad penny...
Thanks all. We are sort of in limbo right now. My understanding is that the one surgeon who could do the procedure to fix the issue has decided that the reward isn't worth the risk and, therefore, has opted to not operate. That leaves us.....well, waiting. Waiting for more news. Just yesterday I was speaking with them about her.
Basically she is just wearing out our couch and memorizing every show on TV. She has periods where she feels well enough to get up and around and she then takes off with her boyfriend to a movie or out to eat, but that's about it. Otherwise, it's 'couch time'.
Basically she is just wearing out our couch and memorizing every show on TV. She has periods where she feels well enough to get up and around and she then takes off with her boyfriend to a movie or out to eat, but that's about it. Otherwise, it's 'couch time'.
