Finding a specialist near Cleveland...

[vicki1967]

I wish to find an AN specialist near Cleveland, Ohio. I've had a rough road since being diagnosed in August of '06, and I've visited two different specialists; however, I was not pleased with either. The first doctor was located at the Taussig Cancer Center, at the Cleveland Clinic. I decided to discontinue this physician's services due to an article I had read in my local newspaper, The Plain Dealer, almost a year ago. The article provided information regarding one of the physician's assistant's there (in the very department I was being seen in) - as he was charged with domestic violence by his fiancee, who was also a nurse there - in the same area. The article described the reasons leading up to the charges, as the (accused) fiancee claimed the violence occurred at the very facility - while they both worked. She claimed he (her fiancee) choked her in the bathroom there - because he thought she took his shorts out of his gym bag. The victim was upset that her (now ex) fiancee was allowed to continue working there - while his case was preparing for trial. The accused felt his work privileges should continue since he wasn't found guilty, yet. I just didn't want to continue with the Cleveland Clinic after reading that article. I can't go under anesthesia knowing there is a doctor's assistant who has pending criminal charges. Also, I found it terribly hard for me to sit in the waiting area with people suffering from cancer. I could not hold back tears at each visit. I felt so incredibly sorry for each and every individual there, as most had no hair. It made me feel powerless, and it made me feel mad. I am mad that there is no cure for cancer. Sitting there made me feel so weak. I didn't want anyone to see the tears in my eyes, as they (cancer victims) are probably looking for more hope, than sympathy. I don't know exactly how they feel, but I don't believe they needed to see me sitting there, crying over them. Each time I knew the tears were coming, I would run to the bathroom and sob.

The second physician - at MetroHealth Medical Center - was just a disappointment. Upon each visit, you had to 'take a number' and 'be seated - even if you have an appointment'. I felt like 'just a number'. When I asked that physician any questions, like, 'what should I expect after surgery?' - as I needed some answers to know if I would be able to take care of my son without assistance (as I don't have any - yet all the answers were the same 'we'll talk about that when the time comes'. I wasn't completely sure I didn't want to continue with this physician until I arrived to my last appointment - as the secretary told me 'Oh, we cancelled your appointment, didn't you get the message on your voice mail at home, this morning?' I was quite HOT over this, as now I had to make up for 2 1/2 hours of work missed - because the secretary didn't call me on my cell phone, as she always did in the past. She always gave me the latest appointments due to my work schedule, yet she leaves the message on my home phone that very morning. When the secretary knew I was upset that I didn't get a call on my cell phone, she then said 'look, I've been calling people all day - I had to call 30 people to cancel appointments for the entire week!' I thought, 'that's nice, she's cancelling future appointments, yet my appointment was TODAY!' When I asked why she didn't call me on my cell phone, she hesitated, then said 'Oh...I did try'. That was a blatant lie, and she knew it. My cell phone showed no missed calls, whatsoever.

If anyone can recommend a specialist - other than the two hospitals above - please let me know.

[chrissmom]

Would you be interested in a good doctor in Pittsburgh ? It's not that far.  Will your insurance allow it ?

[leapyrtwins]

Vicki -

How large is your AN? and are you thinking about radiation or surgery? or are you still deciding?

I don't know any specialists in Cleveland - I live near Chicago - but I noticed that this post mentions surgery and I know from your prior post that you have a two year old son. 

I had surgery and from my experience, you would need someone to help you care for your son, at least for a few weeks post op.  I don't think you should choose radiation based on this, but you should be aware of it when making your treatment decision.  Recovery from surgery is usually about six weeks.  I am a single parent to two 12 year olds, and even though my recovery was complication free, I couldn't have done it without the help of my family.

Just some food for thought,

Jan

[vicki1967]

Thanks so much for the advice, Jan. Would you be able to be more specific as to the recovery phase after surgery? I do not want radiation, as I understand there is a very small chance it could turn a benign tumor malignant. And, with my luck lately, I'll be that .000025% chance (not the true figure . Were you groggy each day? Were you able to lift anything? What about driving? Did you get frequent headaches? I'd like to know what I 'won't' be able to do after surgery. All I know is I want this damn thing OUT - I don't want to have to worry about 'how much it's grown, or shrunk' (if radiation was my choice). You are very fortunate to have help from those around you. I can't seem to find a good specialist in my area - and I don't have the time to search. I feel like my treatment at work is at the top of my list of important issues. The second time I had an MRI (I had three all together), I believe the tumor was about 1.5 cm. I wasn't able to get the results of the third MRI, as the doctor's office cancelled my last two appointments.

[Melissa778]

I am from the Toledo area and did see a doc at the Cleveland Clinic Taussig Cancer center, I too was unimpressed.  I have heard wonderful things abotu several docs at the University Medical Center in Cincinnati. ANd also abtou a Dr. Wellington I believe in Columbus.  Personally my insurance would not allow me to go to either of those locations.  Not sure how far you are or if your insurance would cover, but I am seeing a wonderful Doc at the Michigan Ear Institue in the Detroit area.  Message me if you'd liek further info on any of these places.

[leapyrtwins]

Vicki -

there was just a post on this forum recently about the chances of radiation turning a benigh tumor malignant.  The chances of that happening are so small, it's not even worth considering in your decision-making process so don't let that be a factor.  If your AN is approximately 1.5 cm you should be a candidate for either surgery or radiation, and you should look into both options to decide what would be best for you. 

If you haven't already, please make it a point to request some information from the ANA.  It will tell you all about ANs, what to expect from treatment, questions to ask the doctor, etc.  I found it to be very valuable. 

As far as recovery from surgery goes, there are a lot of posts on this forum, but I'll give you my experience.  Most docs say that 6 weeks is a reasonable benchmark for recovery.

My hospital stay was 5 nights - most are between 4 & 7 days.  I had double vision for the first 2 or 3 days post op.  I had nausea my entire hospital stay and for a few weeks after I returned home.  I was also dizzy and had balance issues - very common since the docs are working in your inner ear.  I experienced no headaches or tinnitus - still don't have either - but some patients do.  I returned to work (desk job) part-time at 2 weeks and full-time at 4 or 5 weeks.  I didn't drive until 6 weeks post op, but could have at 4 or 5 weeks if I would have had a need to (my family shuttled me to work and my kids to school and activities).  I was told not to walk up long flights of stairs for about 10 days post op and I couldn't lift anything over 10 or 15 pounds for a period of time.  I also couldn't put my head below my knees - as in bending down to pick things up - for a few weeks.  My surgery was 7 1/2 hours long and I had lots of fatigue for many weeks post op which made it difficult at times to parent my children; I'm thankful that at their age they are somewhat self-sufficient.

Today at almost 10 months post op, I am doing great and my only side-effect of the surgery is SSD (single-sided deafness) which I am working on improving with my recent BAHA surgery.

I don't want to scare you, or tell you which treatment option you should choose, but IMO if you are considering surgery you need to have a fair picture of what recovery will mean to you and to your son.   At his age, you will definitely need help while you are in the hospital and for at least a few weeks afterwards.

Jan 

[vicki1967]

Gosh, I'm so sorry, but I just had a chance to read your reply to me. That sure did help me understand the recovery period better. I was truly at a loss of what to expect. The support on this forum has really enabled me to make that advancement into accepting this condition. I was going through a period of denial, and then I found too little time to think about it with all the issues I was facing at work (due to the condition). I hope all is well with you. Thanks SO VERY MUCH, again!! Vicki

[NW]

Vicki,
 I am from Ohio close to the Cleveland area, I was referred to Dr. Peter Webber at the Clinic. I had my consult with him at Hillcrest, but surgery is downtown. I opted to have my surgery at The Ohio State University Medical Center in Columbus with Dr. Brad Welling. I couldn't have asked for better care, treatment etc. Dr. Welling is the head of the dept there. I also had Dr. Chiocca, head of the Neuro dept.

Being diagnosed is overwhelming. Once I found the doctor I was comfortable with, it felt like one of the weights had been lifted off my shoulders. I did end being in the hospital for 9 days due to a CSF leak. I did not or have not experienced any headaches at all. Was never nauseated except for after I drank some sprite in ICU!! Never dizzy,  I was driving by 6 weeks, the more I walked the better I felt. Actually the other day I rode my bike. I was thrilled!!  Please feel free to email me or call & if I  can help you in any way, please let me know. Lately there are quite a few of us Ohioans having this!! Wonder why! What area are you from? Pittsburgh also has a great Acoustic center, but I was not able to go there because it was out of network, how silly it's like 50 miles away!! Any questions let me know, explore your options, I considered Gamma , but I decided against it. Take care, you'll know when you find the right doc!!

[rhonda720]

Hi Vicki,

I live in the Twinsburg area and understand your frustrations. I do not recommend going to the Cleveland Clinic. Their bad side manner was horrible.  The surgeon was a jerk and I did not trust him.

My first AN surgery was at Akron General. The surgeon had great bedside manner, but didn't have much experience with large AN's (my  AN was 5cm) so he only took half of it out. I then went out to California at the House Clinic and it was a wonderful experience. I highly recommend this place and they have a ton of experience.

I have also heard great things about University Hospital, but I'm not sure how much AN experience they have. I have met a bunch of people that went there to get other types of brain tumors removed.

Rhonda

[Pembo]

I HIGHLY recommend University Hospitals and Dr. Megerian! I had a great experience there. Dr. M is very intelligent, very compassionate (for a surgeon), trained at U.Mass, removed ALL of my 4 cm tumor over a 16 hour surgery. Yes I have facial issues but over time I've come to realize that was becaue of the type of tumor(sticky) not the surgeon. He works with Dr. Selman, neuro, and he was as concerned about my mental health prior to surgery as my tumor. I've only met one other patient of Dr. M's on these boards but I know he does AN surgeries often.

[Mama R]

Vicki - I am from Stow, Ohio (Akron area) and recently had my AN removed at the Universtiy of Cincinnati by Dr Pensak & Dr Theodosopolus. It is a 4 hour drive, but  for me, well worth it. My story is quite successful . I visited Dr Welling at U of Ohio State and would recommend him also. My ENT in Cuyahoga Falls recommended Dr Megerian at the Universtiy of Cleveland. My ENT recommends him highly and I read another good recommendation on this website  a few months back. You don't always hear a lot about a specific Dr, as some patients move on and do not participate in this forum after they have been successfully treated. That is what I found. Therefore, it was important to me to continue to research. I would read their credentials on the web. I also got referrals of actual patients from the doctors offices. According to my ENT, Dr Megerian is good. He  treated 70 lAN's last year. I do not know how many in prior years. If I had to stay in the area I would probably have called his office and asked for names of patients that were willing to talk. I heard that Dr Lee at the Cleveland Clinic was a good brain surgeon but I could not find experience with AN's on him. Good Luck on your search..the hardest part is finding that level of acceptance & confidence in your choice (for me anyway).

[kimberly]

I also see a neurosurgeon at the Michigan Ear Institute (same place as daydreamer).  I've been very impressed with the neurosurgeon, the technicians, and all of the staff there.  I have my surgery one week before Daydreamer - (good luck to you Melissa)
 
 Vicki, I too am willing to provide you with any information regarding my experience(s) with them if you'd like.  They also have a website , it's www.michiganear.com    I hope you are able to find a physician that you are happy with.

   This site has many informed individuals and it has been a comfort to me to  sign on every so often and read about the experiences of people who have had the surgery/radiation. 

Thank you all for sharing,
Kimberly