Friday Update from NH

A discouraging day at Dartmouth-Hitchcock. The dr. we saw specializes in pituitary tumors and he doesn't think we need to do anything more than watch it. Apparently, in his opinion, it is so small it shouldn't be causing problems like headaches and seizures. He said the type and size Mike has can just sit there and not cause problems at all. The good news is...he doesn't need brain surgery. The bad news....still don't have answers. Dr. said may never get a diagnosis but can treat the symptoms. Recommended he keep seeing an endocrinologist to get his endocrine system working properly, see a neurologist who specializes in seizures, and see a neurologist who specializes in headaches. Mike still has an app't at Mayo Clinic on May 19th. The hope is that since they see people from all over the world with neurology problems and endocrine problems that are hard to diagnosis, maybe, just maybe, they have seen someone with the same symptoms as his. In the meantime seizures seem to be contained to when he is sleeping but headaches are still intense. We will keep pressing on and hope all of you will keep praying!

Back in NH

Train ride to NH was uneventful and actually rather relaxing! Mike did have 2 small seizures while he was sleeping but other than the severe headache that followed he did pretty well.

Have to be at Dartmouth-Hitchcock at 10:00 am. Please pray the doctor listens to us and takes a serious interest in Mike's case. He is leaving for vacation the next day. We are hoping he will order any tests that need to be done next week so when he returns the following week the results will be in. Will post more tomorrow after the app't.

Update Tuesday Night: Moving & Shaking

Well, it has been quite the day for gathering information and decision-making. Finally, we have a plan. The neurosurgeon at Dartmouth-Hitchcock will see Mike this Friday. His original app't was scheduled for the 11th but considering all that is going on, they offered him an app't this week. He had to make sure we could make travel arrangements before scheduling the app't. We have to call in the morning to confirm the Friday app't and are praying it is still available. We will travel by train (last time he flew his headaches were worse) early Thursday morning, just before 5 am and arrive in Boston approx 9:00 pm. Mike choose this Dr. because he is a neurosurgeon who specializes in pituitary tumors and endocrine issues. He was recommended by the Pituitary Network Assoc. and a friend knows someone who had a pituitary tumor removed there with great results. He was able to get an app't at the Mayo Clinic but not until the 19th. Just don't want to wait 3 more weeks for help. The other good news is in the last two nights he has had only 2 seizures. Headaches are still very bad especially during the night. Praying for answers and for a good working relationship with this doctor. We are thankful for this new direction and hopeful!

Monday Night Update from Ohio

It's been a long day calling around to locate the right dr. for Mike, but we're getting closer. Dartmouth Hitchcock in NH can see him the middle of May, possibly sooner if he deteriorates more. They have a neuro surgeon who specializes in pituitary tumors. The National Institute of Health is also a possibility. They have a great team approach and see some of the most unusual cases. We looked into a couple of dr's in Ohio and we are waiting to hear back from a couple other contacts. The concern some are expressing is that the seizures may be caused from something other than the pituitary tumor, and possibly there is more than one thing going on. Mike was in contact with the Mayo clinic again. Some of you might remember they told Mike they had too many people waiting for appointments and because he didn't have a diagnosis they couldn't take him on as a patient. Now because he has a diagnosis they are reconsidering and may be able to see him as early as next week. Please pray we go to the right doctor, not just the one who will see him the soonest. If there is more than one thing going on, we want to be at a place that can look at the whole picture and not just move him from one dr. to an other. We've had enough of that! We are hoping and praying for direction and a concrete plan by the end of the week.

Sunday Update from Ohio

Maybe it's just us but sometimes we wonder what these medical doctors are thinking! Mike was released today even though yesterday they told him he wouldn't be. He was sent home with hormone replacement cream and seizure meds which, so far, are not controlling the seizures. That's it! so lets spell it out...the guy has a tumor in his head and has had several seizures each and every day for about 2 weeks and prior to that he had been passing out several times a week...for almost 7 months and their plan is for him to take meds that haven't helped yet and use some cream! No mention of seeing a specialist or someone who has experience with these types of tumors which are quite rare. No mention of surgery to remove the tumor or radiation therapy which is often used for treatment! Just doesn't make a whole lot of sense to us! Veterinarians would never get away with practicing like this! Ha!

So tomorrow we will call neuro endocrinologists and neuro surgeons who specialize in pituitary tumors. There are a couple in Ohio and one in NH. We will call and see who can see him the soonest!

Saturday Night Update from Ohio

Mike had several seizures last night. It seems they are coming mostly at night while he is sleeping. Doc increased his meds but he is not at therapeutic level yet- increases have to be done gradually. The neurologist we like is on vacation but before he left he came to see Mike. There still is no recommended plan by the team of docs because the blood work results still aren't in- not sure why that has to happen first. Guess they are looking for other things, too. On Monday we will contact a couple of neuro endocrinologists and neuro surgeons who specialize in pituitary tumors and disorders. We will try to get him in to see someone ASAP. There are a couple in Ohio and one at Darthmouth-Hitchcock in Hanover, NH. We just don't want to wait any longer than absolutely necessary. His headaches are unbearable and he is having several seizures each day. He is nervous about having a brain tumor but his spirits are still good and he is taking it all like a champ!

SOME ANSWERS!!!

Another rough night for Mike...4 more seizures. Dr tripled his seizure meds ,hopefully this will help. Now for the good news!!!! MRI showed a very small adenoma tumor on the pituitary gland!!! I know it is a little crazy to consider this good news but after 7 months of not knowing what is wrong, debilitating symptoms, 5 different hospitals, and a total of approx 7 weeks hospitalized, we are relieved to get a diagnosis. 98% of these tumors are benign and are either surgically removed (often through the nasal cavity), treated with meds or radiation. We are still waiting to hear from the endocrinologist and neurologist to see what the plan of action will be. Mike is considering going to see a dr. in Columbus who specializes in these tumors, which are rather rare and hard to diagnose. Dr. is not sure if this is causing the seizures but there is a good chance it is, we have to wait to see what the other docs think. So for now we are thanking the Lord that something has finally shown up and we will wait for the next step. Check back later as we will post information as we get it! We are thankful and hopeful!

Thursday Night Update from Ohio

Another rough night for Mike last night. He had 3 more seizures and still has very bad headaches. Docs came in today to see him. Still don't have an answer about why they couldn't do the spinal tap. They are significantly concerned about his endocrine system which involves hormone levels, thyroid and adrenal glands. We already know his cortisol level is very low and apparently all hormone levels are way off which is prompting them to look at pituitary problems, perhaps a tumor. These tumors tend to be benign but often don't show up on MRI and can be very difficult to find. They did an MRI of the pituitary gland this afternoon; we are hoping for those results tomorrow. Mike had a chance to talk to the neurologist a little about his faith and told him people all over the country were praying for him to receive wisdom from the Lord to help Mike, (He's the one who figured out the meds were causing him to lose the ability to speak). He seemed really touched by this and later that night while he was meeting with an insurance agent he was talking about Mike and telling him about people praying for him. Guess it really meant a lot to him...you never know!

Wed pm Update from Ohio

Mike's speech is back completely! Becka was hoping for a few more days of quiet! Just kidding! Apparently, the seizure meds were the cause. Guess it was a side effect. Wondering why it took two days to figure THAT out! Started him on different meds today. Had an endocrine consult today. They want to do more blood work and another image of his pituitary gland. Looks like all the blood work that came back so far shows some significant issues with the the pituitary. Not sure if this is a primary issue or just one more thing going on. Neurologist still doesn't know why the docs couldn't draw spinal fluid. He was going to research this and get back to him tomorrow. Neurologist was going to check for infectious diseases from the spinal tap, so that is still in question. Mike's spirits are up, and both Becka and Mike are feeling covered in prayer. Thank you for all your support and prayers! God has been very good!

Tuesday Night Update from Ohio

It has been a frustrating and yet an exciting day at the hospital today. First the good news! Mike's speech is coming back! It started tonight shortly after Becka arrived. Earlier today he was able to say a couple of single words. By tonight he was saying full sentences- slowly but not struggling as hard to get the words out. Thank You, Lord! We are very excited and so thankful for this!

This morning they tried to do a spinal tap but after 8 tries and 2 different doctors they were unable to complete it. Apparently they were able to get into the spin but were unable to draw any cerebral fluid. Why? Seems no one knows or at least no one has been able to tell us. They did an MRI of the spinal cord but as of 9:00 pm still haven't received results. Haven't gotten blood results yet either! It's been a long day of waiting with not much communication from medical team. So for tonight we will pray for no seizures (has had 3 since yesterday afternoon) a restful night and some answers tomorrow.

Tuesday, April 20th Update from Ohio

Mike is still in the hospital. Neither he nor Becka got much sleep last night. For 3 weeks Mike has been having several seizures a day, many at night, which wake them up frequently. Mike's headaches are worse than ever, on a scale of 1-10 they are 9-10. Seizures are not under control and he had a very bad one while in the ER yesterday. This morning they took a ton of blood to run a lot of different tests. He also had another spinal tap to check his opening pressure and protein levels, which were both high last time. We like the night hospitalist a lot. Her name is Dr. O'Brien. Please pray for her, she seems very interested in Mike's case and feels like everything hasn't been done for him yet. She said it is time to look at rare diseases and disorders now...ya think?????

It is so hard to watch this poor guy struggle to get words out that just won't come. He knows what he wants to say and tries to say it but he can't get the words from his head to his mouth. He is communicating by pen and paper and a few signs. Kathy taught him a few basics...the ones she remembers from the days Ben used sign language...thank you, yes, no, toilet, and drop dead! That's about all she remembers. Never know when you might need the last one! Even during this stressful time Mike has maintained his sense of humor. While waiting for a bed to open he wrote the nurse a note and requested the Jacuzzi suite! He and Becka are worn out, worried and weary. This has been a very long road to travel and of course they are scared. As a family we are sooooo very appreciative of all the love and support so many of you have surrounded them with. Please keep it up, it helps so very much! "Since Jesus went through everything you're going through and more, learn to think like Him...Friends, when life gets really difficult, don't jump to the conclusion that God isn't on the job...if you find life difficult...trust Him. He knows what He's doing" 1 Peter 4 (The Message)

Back in the Hospital

Hey friends,
This is Liz, Becka's sister. I just wanted to post a quick update for my mom as we have had a lot of change since this morning.

-My mom made it out to Ohio this morning.

-Mike had a seizure last night and was still not able to put words together hours later.

-He has since been hospitalized and has completely lost the ability to communicate verbally. He can write and use sign language, but the speech part of his brain is not working.

-Doctors have ordered blood work and another spinal tap.

We will keep you updated as we can. Thank you for your prayers!

Friday Night Update

Rough night for the Durkees last night. Mike had 7 seizures in one today. The Neurologist doubled his seizure meds which should put him up to therapeutic level. Praying this helps control them! He is waiting for an app't with a specialist in infectious diseases. The endocrinologist is ordering more tests and he is waiting for those app'ts. Kathy is leaving early Sunday morning and should arrive in Ohio about 8:30 am. She and Becka already decided they would need a Sunday afternoon nap! Next update will be from Ohio!

April 14th Update-Some Decisions

Mike had a really rough night last night...3 seizures while trying to sleep. These are so hard at night because it interrupts both of their sleep and makes the next day harder to get through. Everything always seems worse when you are tired! He and Becka saw the endocrinologist today and had an encouraging app't. She is going to do some tests that have not been done yet and going to look into the pituitary tumor possibility and check films that have already been done. She decided along with his PC to change Mike to a different med, one that will adjust his blood pressure, which is low, and help with his adrenal insufficiency. Looks like Kathy will go out this weekend for a couple of weeks to help with Dr. app'ts and then they will both travel to NH. Mike will stay in NH while Becka finishes up school for the summer. Keep praying! It is encouraging to have someone looking at new things rather than running the same tests and getting the same results.

Tuesday, April 13th Update

Mike had a neurology appointment yesterday. He still doesn't know what is wrong but increased seizure meds in hopes of controlling the seizures and headaches; however, he still had three during the night. These wipe him out and make his whole body hurt because the muscles get so ridged during each seizure. Becka is pretty tired, too, since she stays up with him after he has one and still has to get up early for work. Mike's Dad is with them this week again and they are so thankful for the great job he is doing cleaning their yard. Tomorrow he will have some neuro testing done and an endocrinology appointment to further investigate why his cortisol level is so low and talk about the possibility of a pituitary tumor. We have been in discussion as to whether it would be best for Kathy to go there and help or if Mike should come to NH until Becka gets out of school for the summer. Since he is having seizures daily he is not able to be left alone. Once his Dad leaves, some decisions will have to be made.

We are still praying for our Dr. House! We hope to find a doctor who will take the time and put all the pieces to this very complicated and confusing medical issue together. So far we don't think he or she lives in NH or Ohio!

April 10th Update

Mike had a total of 5 seizures on Friday two of which he had with his friend, Steve, who is a nurse. The only good thing about these is they don't last as long as the passing out episodes. 3-5 minutes compared to 5-14.

On Monday he has an app't with the neurologist. His PC wants him to have a complete endocrine work up with an endocrinologist. His cortisol level is very low and some of his other symptoms point to a problem in this area. He wants to look further at the pituitary area. He has many symptoms pointing to either pituitary disease or pituitary tumor which frequently doesn't show up on MRI and is very hard to diagnose. We are hoping to get an neuro radiologist to compare the Boston films with the Ohio films. These seizures definitely seem to be brought on by a position change. Boston films show an inverted dens bone in his neck. The thought Boston had was that if this bone is unstable it was possible that it was interfering with the natural flow of cerebral spinal fluid. If that were the case a neuro surgeon would have to surgically go in and stabilize the bone with screws and or some type of bone plate. The problem is, Ohio's films don't show an inverted dens bone. Maybe it's just us, but it seems to us if one set shows it and another doesn't...wouldn't that indicate a possible instability? Just saying...EVERY neurologist we ask about this says "We can't make a diagnosis based on another hospital's tests or films, we have to do our own". Thus the reason no one has compared the two sets of films. Is that crazy or what? Maybe this isn't the problem but why not at least look at it?

April 9th Update

Mike is home from the hospital. The doctors told him he does not have epilepsy. The two episodes he had didn't show on the EEG, but one neurologist told him 20% don't (Ben's never do either).
So he is home and has seizure meds to take and a follow up appointment with a neurologist next week. His Dad has been there since Tuesday. He will go home for the weekend and come next week if they need him. The challenge now is how to keep him safe at home, especially when no one can be home with him.

One bit of good news...they found someone to buy the lease on his car. He hasn't been able to drive and doesn't look like he will be driving again in the near future. This will help with monthly bills.

Also, Becka found out she has more sick days she can take if she needs to and a couple of personal days she can use. That's the latest as of today.

Please keep praying...God always listens...even when it seems He is far...He is not!

Update from Kathy

Monday night Mike was taken by ambulance to the local hospital because he seemed to be having seizures, one right after the other. The ER doc confirmed he was having grand mal seizures and he was admitted to the hospital. Tuesday morning the neurologist came in, he was very curt and a rather unpleasant man. Becka was not there, she had been at the hospital all night and left to get a few hours of sleep. She requested to see him before he left the hospital for the day because she had lots of questions. Apparently this made him angry and he announced as he strolled into the room that he had already been in Mike's room in the morning so he had fulfilled his responsibility! The rest of the time he just gave Becka a hard time and was just plain mean! He didn't want to do an EEG because 20% of all seizures don't show up on EEG. He later ordered a quick one and also a CT scan. Both were normal. All day Tuesday after changing his position, going from lying down or sitting up, he had a seizure. This has been going on all day. Another new symptom.

He will be moved to a larger hospital so he can have an ambulatory EEG.This is one he stays hooked up to for a few days. Once a bed opens up he will be moved to the seizure floor.

They are exhausted, scared and overwhelmed. Becka doesn't have any more time off from work without getting her pay docked. She is already stressed by the many medical bills coming in and is trying to be there for Mike but also keep up her work schedule.

Thanks to all who have been so diligently praying for them, supporting and encouraging them. God has used you to help them keep going during this very frightening and difficult time!

**Updated** Mike was moved to the new hospital with the seizure floor.

April 5th Update

As Mike and Becka were getting ready for church on Sunday Mike passed out and had some very seizure-like activity going on while he was unconscious. This was a first. Lots of leg movements. He had a pretty bad headache most of the day and generally didn't feel well. They had planned to have dinner and spend Easter day with their friends Steve and Val. He didn't want to disappoint anyone so they still went and had a nice day in spite of his head.

They went to a new neurologist today who doesn't really know what is going on with him. He doesn't know why he passes out when his chin touches his chest or why the protein level in his spinal fluid is high. He is putting him on seizure meds to see if they will help the headaches and will see him again in a week. He doesn't really think Mike is having a neurological problem but a blood pressure issue. The cardiologist thinks it is a neurological problem not a blood pressure issue. Bottom line is NO ONE knows...at least no one human knows! We KNOW God knows what is going on and for some reason He has chosen not to disclose that information to anyone at this time...for what ever reason. We know His ways are not our ways and we may not like or understand it but we know He loves and cares for Mike and Becka, He is still good ALL the time and he has His reasons for bringing them down this road. (Dt. 29:29).

So for now we keep looking to Him, keep looking for a dr. who might be able to put it all together and wait...

April 3rd Update

Becka has been on spring break this week, and the two of them have enjoyed the nice Cincy weather and spending time with friends. It has been good for them. For a large part of the week, Mike was feeling OK and had some good days. Yesterday he passed out in the morning and was out for 13 minutes again. After having a wonderful evening with good friends, he passed out again shortly after they got home. He hit his head on the tile floor in the kitchen and is pretty sore. His head hurts inside and out today!

For Easter they have been invited to have dinner with one of Becka's friends from college and her family. They will be missed in NH, but we are all glad they won't alone for the holiday.

As always, God has taken very good care of them and has treated them with unexpected blessings this week! We are so thankful to the many friends He has given them! It is hard to be away from family during this difficult time.

Happy Easter to you all! We pray you will have a wonderful day tomorrow rejoicing in our RISEN SAVIOR!