Sutures removed

Had follow-up visit to Dr yesterday and had the sutures removed. The incision is mostly numb so it didn't hurt much....just a little pinching. It is healing well. I need to decide whether I buzz my hair down to match the peach fuzz patches or let it fill in looking "patchy" - please feel free to send your input.

My biggest complaint is still that my mind just isn't as clear and sharp as I'm used to. I was reassured yesterday that this is normal after brain surgery and I should expect it to take 3-6 months before I feel like I am completely back to normal. Second to that is stiffness in my neck which apparently is also common.
We also had the chance to go over the MRI's that were taken before and after the first surgery, and before and after the second surgery. They were amazed considering the size of the tumor that I did not have more symptoms than I did.
The amount of swelling of my brain after the first surgery was significant and for the time between the first and second surgery my swollen brain actually occupied the space where they had removed part of my skull in order to gain access for the surgery. I'll be getting disks of the MRI and will add pics to the blog in the next day or two.
Oh..I was finally able to take a complete shower this morning and wash my entire head. It felt soooooooo good! 4 weeks without a complete shower is tough!
My mom and dad are heading home Sunday morning after being here for a month for the whole thing. Thanks Mom and Dad for all your help and support. It has been an unexpected blessing to have all this time together. Allyson's mom will be here until we get her a plane ticket to go home :) Thanks for your ongoing help Barbara :)

Here is a photo of the surgery site on the top of my head - I wonder if my hairstyle will be affected?

Recovery continues though a little slower this week

Thanks to everyone for all of your thoughts and prayers and cards and meals. The outpouring has been amazing and I am humbled by everyone's generosity.

My recovery this week has continued to progress though more slowly. At the beginning of the week I was feeling pretty weak and my stamina was not very good. Also had a couple of rough nights with the strongest headaches I experienced since surgery #2 and I think I probably overdid it so I had to rest more. My vision has continued to improve and though I seem to be hypersensitive to motion, sound, light, etc (I feel like I am being bombarded with stimulation most of the time) this seems to be diminishing gradually. My physical therapist had given me various exercises using cans of soup for weights. Thursday I graduated to 5 lb weights but I'm surprised how much it drains me to lift them. I'm also doing leg exercises and they feel like spaghetti when I'm done. But I am getting stronger each day.

I think my vision may be approaching normal but I still have a haziness in my head so I don't feel quite myself yet. I stopped taking prescription pain killer a couple nights ago and I'm just using extra strength tylenol which is good - the other stuff made me feel a little out of sorts at night and I actually felt like I was having hangovers when it was wearing off. So hopefully the quality of my sleep will get better too.

I was able to feed Rachel (now 9 wks old) a bottle again for the first time again on Thursday and I was able to hold her for a while - I can't believe how much she has changed in just the last few weeks - smiling, cooing, watching intently - amazing to see.

I can't wait until next Wed when they remove the sutures from my head and give me the all clear to wash my head completely - I think it's been 3-1/2 weeks since I shampooed my hair in entirety - yuck!

Just weighed myself and was surprised to find I've dropped to 171.5 lbs... my weight before all this hovered around 187 which was a good weight for my 6 ft frame. Looks like I need to bulk up a little bit. I'll post again in a couple days.

Came home yesterday! What a difference in recovery from surgery #1 and #2. I don't remember much from recovery from surgery #1 in the first 2-3 days and most of it was bad. I remember little glimpses - major vision problems, difficulty speaking clearly, nausea, vomiting, family coming in and out, nurses and aids helping me stand and walk, getting shots and having blood drawn at all hours....I was out of it. After surgery #2 I was euphoric. I did not experience a big setback like I did with surgery #1. There was some but nothing in comparison. The biggest issue was numbness and tingling on my right leg from calf to toe that appears to be due to positioning during surgery and has improved greatly.

Had a really good day today. We discovered late yesterday that there was a small staple in my head that should have been removed so we put a band-aid on it and in a quick trip to the Dr office this morning they pulled it out with little pain. While I was there they did a quick visual test and my peripheral vision continues to improve as expected. At the moment I'd say I'm probably hypersensitive to things (motion, sound, light, etc , followed closely by having little stamina. The ride home in the car yesterday felt a little like watching an Arnold Shwarzenegger action film to me. Every moving thing was a blur. Still having some similar hypersensitivity today - watching big screen wigs me out after a little while.

Feeling stronger each day. Got to be outside for a few minutes in the sunshine and beautiful 60 deg fall weather and was able to spend more time with Allyson and the girls.

Jim's Home from the Hospital

Praise God - Jim was released today at about 11am! He just couldn't take another day of hospital food:) Now it's onto recovery at home. I'll let him take over the posting tomorrow for now it's resting on the couch and some football.

Ahhhhhhh
-Allyson

An Update on Jim - Good News to Share

When Dr. Sani arrived in the waiting area he looked very happy. Happy for sure since they were able to get the rest of the tumor and Jim woke up in good spirits. A very different face from surgery #1.

When we arrived at the ICU Jim was talking and very excited. Wow what a difference from surgery #1! We were expecting a possible set back with his left side but it appears that if there is any it is minimal. He still has a blind spot in his left peripheral area but the Dr believes it will come back. He has some tingling in his right calf that they think is from his positioning during surgery so they will watch that tonight.

After a few teaspoons of ice chips he decided it was time for a real meal. He ate all the green beans and ravioli he ordered. Thankfully he is not experiencing the extreme nausea he had after surgery #1.

Jim will be in ICU for the night and will need to stay in bed for 24 hours. We'll keep you posted on his progress.

-Allyson

Jim out of surgery

Surgeon just came out. They got the rest of the tumor! We will see Jim in about 15 minutes in the ICU.

Wheeled into surgery

Jim was just wheeled into surgery at 8:05am. He is in good spirits this morning.

"Do not be anxious about anything, but by prayer and petition, with thanksgiving, present your requests to God" Philippians 4:6

"...that he who began a good work in you wll carry it on to completion until the day of Christ Jesus". Philippians 1:6

Allyson

The Recovery Part 1

AS TOLD BY ALLYSON:

Jim asked me to record some notes from the first parts of the recovery.

Jim was pretty out of it during his time in the hospital and the first few days at home. The lack of quality sleep and the drugs along with his pain made him a bit nutty. In fact the night they moved him from the ICU to the intermediate care unit he had visions of a gorilla starring at him through a window at the foot of his bed. When he told me the next morning we realized that the gorilla was really a tree in a picture on the wall across from the bed. Since the picture was screwed to the wall I covered it with a sheet so it wouldn't haunt him anymore.

Dr Sani sent him home on Wednesday, October 7. He wanted him to rest up and try to heal a bit before the next surgery. I planned to drive through Walgreens to get his meds but decided to go right home as he looked like he was about the pass out at any minute. He basically slept on and off for the first 48 hours.

Over the past week I've seen incredible progress in Jim physically. He went from needing a walker to support and guide him to walking without aid although a bit tentative due to the visual deficit on his left side. With guidance from his Physical Therapist Carl, Jim has been doing exercises to build up strength.

This journey we are on is not only impacting Jim physically but also emotionally and spiritually as one would suspect. I'll let him blog more about that when he can, for now I will continue to stand by my handsome and strong husband. As we've reminded each other we are in this "in sickness and in health for better or worse."

God Bless,
Allyson

Pictures of the Tumor

Well it has been a whirlwhind couple of weeks and many of you who aren't connected to my wife have not had any idea what has been going on. I barely use facebook so you would not have noticed any difference. Below is a brief summary of what has happened. I started putting together this blog over the last few days to bring people up to speed and to help me in my recovery going forward.


I began experiencing migraines for the first time in my life somewhere around the beginning of June. They were pretty infrequent though increasing to about one every other week. Made an appt to see my doctor but couldn’t get in until 9/21 which was over a month away
9/9 was experiencing another migraine but doctor was on vacation so I met with the nurse practitioner and she suggests that I should try using Excedrin migraine to try to address the symptoms short term and to begin looking for migraine “triggers” – monitor what I eat, sleep patterns, light…..
9/21 finally arrives and I discuss the migraines with my Dr. I share with him various things- how they come on, the migraine “aura” I see, location, intensity, etc. he nods in understanding and asks if there is anything else. I was about to say no and I said well, this is a little silly, but I’ve had some occasions where I’ve been walking along and I see something off to my left side and I say to myself “what is that? and a couple seconds later I realize it is my left hand so I feel pretty stupid about it. The doctor finishes and says everything I described is pretty typical migraine kinda stuff…..except for the thing with the hand. He says he wants to write up an order for an MRI of my head. He says it gives the best look of anything that could be going on. I’m a little surprised but decide that if it’s covered by insurance then we’d better take advantage of it to rule anything out. I asked if there was anything else he would suggest to deal with the migraines if this turns out to be “normal migraines”. He gets me a sample of a migraine medicine and also comments about looking for “triggers”.
another awful migraine the next day 9/22 – I try the sample of the Migraine medication and it seems like it doesn’t help much. Allyson get’s me scheduled for the MRI on Monday, 9/28
9/28 – MRI at 8 am – technician only runs the test, can’t tell me anything (she says), tells me my doctor will have the results by 3 pm at the latest and to call them then.
I call at 3pm and the nurse has to find the doctor. She comes back on the line and says the doctor wants me to come in the next morning to review results. I ask her if she can tell me anything and she says the doctor has not made any notes so we set up a meeting at 10:40 am the next morning to review results (we’re starting to get nervous)
9/29 10:40am meeting with Dr – we sit down and Dr walks in and says “well, we did the MRI and we found something” after that it was several minutes of the doctor reviewing the results of the report, providing some explanation while we listened trying to understand what he was saying (and understanding pretty well I think – he did a good job. We were just in disbelief. Was this really happening? I have a brain tumor!?The report said I had an intercranial mass, measuring up to 6.1 cm x 4.1 cm x 4.5 cm…(this is about the size of a lemon. The report also said it was most likely a Meningioma. Meningioma’s are typically benign but malignancy could not be ruled out without biopsy. The doctor arranged for us to meet with a Neurosurgeon the next morning.
9/30 8:30 am – we meet with Neurosurgeon – he met with my primary doc and his recommendation is surgical removal and he explains some details of the surgery. He says that they have tentatively scheduled for Saturday. He has removed over 1000 of these. We ask for a reference for a second opinion and he suggests someone well respected in the Chicago and helps arrange for us to meet with him the next day 10/1. We also get another suggestion for another neurosurgeon from some friends and arrange another appt on Friday 10/2. We research the doctors that night and all appear to be very experienced, trained, qualiifed, connected with good hospitals, etc.
10/1 – we meet with 2nd Neurosurgeon for second opinion. He also agrees it is most likely meningioma and he would be blown away if it turned out to be malignant. He recommends the surgery. He expects that I will have a temporary visual impairment on the left side as a result of the surgery that will go away in 12 months but probably much less. He is very reassuring, particularly in dissuaging any fears over not waking up from the surgery or permanent loss of abilities. We decide to move ahead with the surgery on Saturday, 10/3 and I cancel the 3rd opinion as this doctor is not really in a good location for us and it would not really be a good decision to add an extensive travel distance to get to and from the place of surgery.
Surgery 10/3 6am – after a few minor challenges finding a razor they get me hooked up to IV’s and I’m knocked out. I drift in and out of consciouscness the day of surgery. It takes 4-1/2hours and unfortunately my brain begins to swell too much so they have to stop before they can finish – a follow-up surgery will have to be scheduled. I drift in and out of consciousness for the next couple of days with all the drugs they have me on. They do simple neurological tests every few hours to monitor my progress. I do have a significant visual impairment on the left side from the surgery as was anticipated. I can’t really see much to the left of my nose. I have a hard time holding my hands at the same level. My speech is slurred. I can’t move my lips properly. These things all improve gradually and I’m discharged on Wed, 10/7 with a follow-up appt on 10/12. I go home and begin trying to function somewhat normally though I have to use a walker to get around and I need to be sure I have help with basic activities to avoid injuring myself – particularly the surgery site. Home visit nurses and physical therapists start arriving the next day to help me continue recovering.
10/14 I drop the use of the walker with the exception of night time trips to the bathroom.
10/12 Surgery follow up meeting with NeurosurgeonThe basic problem they ran into during the surgery was that the tumor was very large and the access to remove it was relatively small. Due to this, the time it took and the corresponding irritation to other brain tissue eventually caused the brain to swell beyond acceptable margins so they had to stop. Based on a post-op MRI it appears that about 85% was removed. So a second operation is now scheduled for tomorrow- Friday, 10/16 at 6 am. The Dr expects it to take about 2 hours and it to be much easier on me.