Friday, November 21, 2008

I haven’t updated in awhile…… I went for my follow up with Dr. Herzog. He prescribed 6 more weeks of Vestibular Rehabilitation. It doesn’t seem like I am progressing like everyone would like me to be. My test results from therapy do not show any improvement in some areas, but slight improvement in other areas. I have improved on my inner ear balance but some of my other sense of balances have decreased. I am scheduled to meet with Dr. Herzog after the first of the year to go over progress and “what to do from here“. He has sent a letter to my insurance requesting the BAHA(bone anchored hearing aid) procedure, and what my out of pocket will be. We have not officially decided if I am going to have the hearing aid implanted. It all depends on the cost.
I am still not back to work and trying everything in my power to keep busy!!! I am still unsure of a return date for work.
There was a lot discussed at my last appointment. Much of the conversations were “we will wait until therapy is completed”.
I went to therapy last week and my therapist, Missy, discovered I have enlarged lymph nodes on my left side (same side of the tumor). She brought a specialist over to look at my neck. They stated my left side is very swollen, and I would benefit from occupation therapy/ lymph node drainage therapy. Missy talked with Dr. Herzog, and he prescribed 6 weeks of OT.
Lymph node drainage therapy is very difficult to explain, seeing that I don’t fully understand it myself. The easiest way to understand is … there are certain spots that collect the body’s garbage. After my surgery, my left side “garbage collectors’ seems to be having a hard time releasing the garbage therefore they are building up and causing swelling, and pain. The really good news is some of the benefits from lymph node drainage therapy are: clearer thinking, less swelling, reduction in headaches, and balance stabilization. This doesn’t mean that this procedure is going to cure all of my side effects….. But why not give it a shot. I have had 2 sessions of OT-drainage therapy. Both times I have been nauseated, which is a side effect. The garbage is draining and unfortunately its draining to my stomach, therefore causes nausea.
I haven’t noticed any dramatic changes, but my OT says the second session was much better then the first (less swelling)
Another milestone I met was: playing catch with a ball (side to side, and overhead). I know this sounds funny but if you think about it… if a person is dizzy and unbalanced, seeing an object coming for a person’s body can throw them off. I also have a difficult time with hand/eye coordination b/c of the quick movements. BUT…….. I have been playing catch at home with Addison and Clint, and I can see a huge difference with practice.
So… keep the prayers coming!!!!!
Kelley

Friday, October 10, 2008

I started my 6 week physical therapy yesterday. I didn’t know what to expect when I went to my first appointment. When I think of physical therapy I think of exercises, treadmills, stretching, etc. Well, this was completely different. My therapist is trained in vestibular (balance) rehabilitation. This approach is used to decrease my dizziness, increase my stabilization, improve my balance by using sensory and motor aspects of my postural control, and to increase my activity level. So first thing we did was discuss my symptoms prior to the surgery and then my current symptoms. I had a difficult time describing my symptoms, and seemed to get confused easily. (she also noticed this) It was much easier for her to read off a list and I would say “yes” or “no”. I seemed to have “all of the above” of the symptoms. To list a few of the many: dizziness, lightheadedness, pressure in head, confusion, tiredness, headaches, weakness, restricted activity, limited head movements, etc…. Then we did some tests. The first test was called posturography. This test was not my idea of fun. I stood in a machine that I can best describe as an earthquake simulator (another visual would be surfing on the ocean-waves moving one way, feet moving another).
Here is a picture:
http://www.isokineticsinc.com/mm5/capitalequip/neurocom/equitest.jpg
The walls and floor moved as I had to stand in a harnessed machine and try to stand still. Not to mention the walls were colored multiple colors- and were moving. Wow, it was horrible. The floorboard was computerized which detected the reaction time and the use of my muscles and nerves to calculate the amount of balance in my feet, ankles, and hips. I fell 3 times- yikes. Well I didn’t do very well. But, then again I am there for a reason and it only gets better from here!!!!
I will not have to do speak therapy. They had a fear that since I am officially deaf in one ear that I may need to relearn how to speak. Talking has never been an issue for me :) On a serious note I will say that it is often difficult to determine my tone and volume-especially when singing in church! They also determined my understanding and processing seems to be a little slow (no jokes!) I get confused easily. My Physical therapist said all of this makes sense and is all related to the surgery. My percentages are low at this point but she has high hopes that they will increase. She said I may never be 100% but who is after a major brain surgery?! She gave me vestibular exercises to continue working on each day. I will continue seeing her for 6 weeks and we will reevaluate with my medical team. So... once again I didn’t get the answers I wanted but nothing I didn’t expect. I am really pushing myself as much as I can (in a healthy way) b/c I am soooooo ready to be back to the old Kelley again!!!!!!!

I am still feeling worse then prior to my surgery, but in some situations this is common, unfortunate, but common. Yes there are many days when I ask myself… “Why did I have this surgery?” Those are my really bad days! (usually when Addison is crabby too!)
But I am doing the best I can. I am still home from work at this point. Going through some minor changes and I am not quite ready to get back to “crisis” mode yet. If any of you know what I do for my job you will totally understand. Some days can be pretty hectic!!

Take care
Kelley

Thursday, October 2, 2008

6 weeks

I had my 6 week (actually 38 day) checkup with Dr. Herzog on Monday Aug. 22. I didn’t get any unexpected news, but then again I didn’t get any good news either. Dr. Herzog seemed a little disappointed that I had not been driving more but understood that my dizziness was still pretty moderate to severe for driving. He had me stand straight up while closing my eyes. I felt like a building in Chicago on a very windy day. It felt nearly impossible for me to stand without falling, although Clint said I didn’t look as bad as it felt. Dr. Herzog prescribed a specialized therapy at St. Luke’s. I should begin as soon as the office calls me with the start date.
I had my hearing test. The doctor seemed disappointed with the test results. I have lost all of my healthy hearing nerve in my left side which means I was officially diagnosed with 100% hearing loss in my left ear or “Single Sided Deafness”. My hearing cannot be restored on its own but there are two options.

The first option is a double hearing aid the is applied the back of both ears (not for me).

The second option is a BAHA implant or Bone anchored hearing aid. -Yes it sound intrusive and scary but it is only approximately a 2 hour procedure and I may go home that day. Dr. says I will probably only be out of work for 2 days. When I was at the office Dr. Herzog put a BAHA headband on my head. This device gave me the capability to hear out of my left ear. It was a miracle. It was like a blind person receiving the gift of sight for 10 seconds!!!! Its amazing how much we take our senses for granted. I have been without hearing in one ear for only 5 weeks and have forgotten how much dual audio impacts life. So remember when I promised myself I would never have any head surgery again…. That may change if I can hear once again!!
Dr. Herzog is giving Clint and I6 weeks to consider the BAHA, Considering I promised myself I would never let anyone touch my brain ever again!!! So we have a lot to think about.


Here are a few website to check out about BAHA- its so interesting:
Dr Herzogs website: http://www.stlouisear.com/baha.htm

and this is his(Dr. Herzog's) referral for BAHA resources: https://www.cochlearamericas.com/Products/2013.asp


Dr. Herzog thought the numbness in my leg could have been from the grounding patch during surgery. He was familiar with meralgia paresthetica but did not think it was from being on my side too long since my surgery was only about 4 hours. He believes the sensations should return soon.
My heightened taste buds are from the changes in my facial nerve during surgery. Dr. Herzog said this may take some time to return. He did not seem very concerned. The longer my taste buds are crazy, the longer I will stay away from soda!!! Back to a healthy lifestyle. See, there are good things that result in brain surgery!!!
In conclusion, I am doing well. I am really looking forward to getting back to normal, getting back to work, and moving on with my life. Although I still have a ways to go on my recovery and still need to take it slow and easy, I am ready to take a leap into the next step of recovery!!!! Watch out world, Healthy Kelley is coming out strong!!!


Tuesday, September 23, 2008

32 days and getting there

Well its been 32 days since surgery and I can final say that I am seeing the light at the end of the tunnel. I can’t say that I feel great but I can say that I feel much better then I did even a week ago. I still have headaches everyday and a lot of dizziness but at least I can walk and get out of the house on my own. I have been on 3 driving adventures. Two of which were with Clint and one was by myself. I have difficulty yielding into traffic because I am not able to quickly look both ways yet. So I wait very patiently, and hope no one is behind me.
I am still unable to hold Addison for a long period of time. I can hold her as long as I am stabilized. It is very difficult for me to pick her up out of the highchair or crib. Clint is still taking her and picking her up from the sitter. We expect that I will be attempting to assist with Addison next week, keep your fingers crossed.
I still have 100% hearing loss in my left ear. My right ear is still very sensitive. Its difficult for me to talk on the phone for a long period of time. I have to turn the volume on a low setting. I am slowly learning to sit on the left of people when having conversations , its often turned into a joke. I have been out to a restaurant twice and luckily the weather has been nice b/c we were able to sit outside. It was to loud for me to sit inside I was unable to hear my guest.
I went to my primary doctor for a follow up last week. I told her about some small side effects since the surgery such as : numbness in my injection areas, numbness in my right leg, heightened taste buds, sensitivity in hearing, headaches, and loss of appetite. These were her comments.
Numbness in injection areas: should go away in 6-8 weeks. This is b/c the shots were injected directly into the muscles. And may take some extra time to heal.
Numbness in my right leg: I have a condition known as meralgia paresthetica. Basically, she(my primary doctor) thinks I may have some nerve damage from being on my right side too long during the procedure. The doctor is not too alarmed by this and does believe the sensation will return in time. If it does not, physical therapy can help. She asked me to talk to Dr. Herzog about this matter in detail.
Heightened taste Buds- Doctor wasn’t sure about this matter, believes it may have to do with the surgery and would like me to see my ENT about this.. She did say “ is that what it took to get you to stop drinking soda” Ha Ha!!
Sensitivity of Hearing: She would like for me to talk to my surgeon and the ENT about this but obviously its from the surgery and my right ear is picking up from what my left ear has lost.
Headaches: She is a little concerned about this. She put me on a migraine medication b/c I was having bad headaches prior to surgery as well. I will follow up in one month with this medication.
Loss of appetite: this may have to do with some of the medication I am currently taking, or my nauseated stomach. I literally have to make myself eat to take my medication. I am now averaging about 2 meals a day. But I am down 2 dress sizes!!! I am smaller then I was at my own wedding. I guess all it took was brain surgery!! Ha Ha.
I am not on any pain medication, as a matter of fact I have not taken any over the counter pain medication for 48 hours. That’s a great improvement. If I could only get the dizziness to go away!!
So I AM slowly progressing. I never thought it would take this long, but I’m getting there. But keep those prayers coming!!!
My next appointment is Sept. 29th with Dr. Herzog. I will keep you all posted!
Much Love,
Kelley

Friday, September 5, 2008

doing a little better

Hello,
Well its been two weeks today, and days are progressing at our house. I am feeling a little better each day. I am still unable to do many things I would love to do but it’s a slow process. I am still unable to hold or pick up Addison. We have a lot of floor time together. We read a lot of books, try to play with Play dough, blocks and lots more. She has been awesome throughout my recovery. She is very gentle with me. She gives me random kisses and lots of love. I would have to say that Addison and Clint have developed quite the bond in the past 2 weeks. He has been taking her to Karla’s everyday at 6:30am and picking her up at 5pm. Which means he has to wake her up at 5:45ish to get her dressed and ready for the day. She has been such the little trooper. She gives me kisses every morning and tells me “Bye Bye Mommy”. Its really cute, although I cant wait till I get to spend more time with her.
My appetite is starting to increase a tiny bit. I am averaging about 1 ½ meals a day. I bet I have lost 10+ lbs already. I have started my vestibular exercises which are harder than I thought. I was able to finally wash my hair since my stitches are out. It was quite the experience. If you think about sudding up your hair….. In order to get the scalp clean, motions are required. Well, it didn’t go so well for me. Of course I wanted to wash my hair twice b/c I felt so yucky from surgery still. I had to take 3 breaks b/c the shower began to spin and I started seeing stars, literally. So I really need to take it easy.
I tried to start reading one of the 8 books I had planned on finishing during my recovery. That didn’t go so well either. My eyes jump and the words all collide together, not to mention the headache it gave me. So I will try again next week. I have been watching a lot of TV and pacing the hallways. Now that the weather is getting cooler I may attempt going outside. I will practice this weekend with Clint’s assistance. Last time I tried to walk down the driveway it was not a great idea. My driveway, like most is on a slant and my body moves faster then my feet right now due to gravity. So it was very difficult to stabilize my body to the slanted pavement. It was much easier when I pushed the stroller (like a walker) but Addison is quite the chunker so I also needed assistance with that.

My incision is starting to heal. It still looks terrible, but better then before. My hair is growing back already!!!!! The doctor and I had the "priority" talk before my surgery and he and his nurse assured me my hair would look perfect for Christina's wedding on October 4th. Well he was right. Dr. Herzog did an excellent job. The incision is right along my hairline. I may have a pretty big scar but it looks like I can cover it up pretty well. Dr. Herzog is the greatest!!!!!
So….. Things are going ok for me. I will continue to keep everyone updated!
Take care,
Kelley

Wednesday, September 3, 2008

At Home

Hello everyone,
Well the good news is I feel a little more alive today then I have since surgery. I still cant do very much at this point. I went to the doctor yesterday and had my stitches removed. The good thing about it was my left side of my head and ear are still numb so I didn’t feel much of the removal, but the headache afterwards was unreal. I still have zero hearing in my left ear. The Doctor is not too concerned b/c there still is a possibility that it may return, my brain may still be very swollen. He will retest my hearing on September 29th. Doctor Herzog said I was looking best I could. He also said the smaller the tumor the harder the recovery, and if you all remember about 2 months ago when he told me my tumor was the smallest he had ever seen. (bummer) But I am taking it a day at a time. Everyone that has seen me says I look drastically better and hit milestones every day, that’s good to hear! I still do not an appetite at this time. I am not on any medications except over the counter pain medication. Its very difficult to eat b/c of the nausea. A few times water made me really sick.
The best way for me to describe my dizziness is like a bobble head. My vision bounces and sways constantly but my head is completely stable. Hence…. The nausea. It worsens when I move, walk, get out of bed, or become active at all. So I do a lot of sitting on the couch and pacing my hallways. I have tried several times to go outside. The heat really effects me right now. I get instantly nauseated. A few days ago my parents came over to give “Super daddy Clint” some time away. Clint and I attempted to go to the “Meadows at Lake Saint Louis”. We made it in one store. I was too hot and it was way too much for me. We then went to the grocery store. Which was easier then I expected. I pushed the cart so my balance was a little more stabilized (like a walker). Many people were staring at me b/c I walk worse then my 90 year old grandmother… literally. But if you picture me right now…… I have gross hair on my left side (no washing till the stitches are removed), a black eye from surgery, a big cut on my forehead from the halo that stabilized my head during surgery, 16 stitches on my head, and I walk really slow. I bet I did look “interesting”. Oh well I was just so happy to get out of the house. One other thing I encountered at the grocery store was my hearing sensitivity. Every time they would say something over the speakers I felt like I was standing directly at the speaker. I guess my right ear is picking up the noises from my left ear and everything is very loud!!
The best way to communicate is by texting or calling my cell phone. Or if you want to call Clint that ok too!
In summary, I am doing ok right now… much better then last week. I am really looking forward to feeling “normal again”. I am so very appreciative to everyone who has been praying for us, sending warm thoughts, visiting, babysitting, sending gifts, cards, food and just saying I’m thinking about you. I hope to say thank you personally to each and every one of you very soon.
One last thing…. I wanted to let everyone know that Clint is the very best husband and father in the entire world. Everyone was a little hesitant with all the arrangements with Addison and how everything was going to work out. Well Clint is officially “Super Daddy”. I have fallen in love with him all over again. I know he feels helpless with me sometimes but he has really stepped up and deserves some kind of amazing daddy/husband award!!!!
I hope everyone is doing well!~ See you all soon~~~~
Kelley

Wednesday, August 27, 2008

Kelley is home

This is Kelley's mom, Chris, updating Kelley's blog with Kelley dictatig.

I was in ICU for 24 hours and I don't remember much which is probably a good thing. On Saturday I was given a room and was there for 4 days. I did not eat for 2 1/2 days. The dizziness and nausea did not make food appealing. The doctor said I had to get dizzier before I got better. Imagine that!!! On Monday Doctor Herzog spied on me and found out I could not walk without assistance so he made me stay until Tuesday. So now I am home and miserable. The Vicadin was 2 pills every three hours in the hospital and now it is one pill every four hours. Not enough for the pain but I have no choice. The nausea and dizziness continue. My earlobe is totally numb and I can't hear at all out of my left ear which is really throwing me off balance. But hopefully this will return soon. I go to Dr. Herzog to get stitches out on Tuesday of next week and then I don't go back to him for 4 weeks.

I appreciate all of the flowers, cards, gifts, food and prayers from everyone. Sorry I can't return all of your calls or texts but as soon as I am feeling better I will call. It is good to know that I have so many people thinking and praying for me.

Stay tuned....